[Federal Register Volume 73, Number 70 (Thursday, April 10, 2008)]
[Proposed Rules]
[Pages 19708-19741]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: E8-7412]



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Part III





Department of Health and Human Services





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45 CFR Parts 1385, 1386, 1387, and 1388



Developmental Disabilities Program; Proposed Rule

  Federal Register / Vol. 73, No. 70 / Thursday, April 10, 2008 / 
Proposed Rules  

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DEPARTMENT OF HEALTH AND HUMAN SERVICES

45 CFR Parts 1385, 1386, 1387, and 1388

RIN 0970-AB11


Developmental Disabilities Program

AGENCY: Administration on Developmental Disabilities, Administration 
for Children and Families, HHS.

ACTION: Notice of proposed rulemaking (NPRM).

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SUMMARY: This rule proposes clarifications and new requirements to 
implement the Developmental Disabilities Assistance and Bill of Rights 
Act of 2000 (DD Act of 2000). Of particular note, the proposed rule 
covers responsibilities of the Secretary in the area of program 
accountability and the indicators of progress. Under the proposal, one 
or more measures of progress must be used to measure the goal(s) 
developed for each area of emphasis. The areas of emphasis include: (1) 
Quality assurance activities; (2) education activities and early 
intervention activities; (3) child care-related activities; (4) health-
related activities; (5) employment-related activities; (6) housing-
related activities; (7) transportation-related activities; (8) 
recreation-related activities; and (9) other services available or 
offered to individuals in a community, including formal and informal 
community supports that affect their qualify of life.

DATES: Comments will be accepted through June 9, 2008.

ADDRESSES: Interested persons are invited to submit comments regarding 
this proposed rule to: Commissioner, Administration on Developmental 
Disabilities, Administration for Children and Families, 370 L'Enfant 
Promenade SW., Mail Stop: HHH 405D, Washington, DC 20447. Persons may 
also transmit comments electronically via the Internet at: http://www.regulations.acf.hhs.gov. Electronic comments must include the full 
name, address, and organizational affiliation (if any) of the 
commenter. All comments and letters will be available for public 
inspection, Monday through Friday 7 a.m. to 4 p.m., at the address 
above, by calling (202) 690-5841 to set up an appointment and gain 
entry to the building. Electronically-submitted comments will be 
available for viewing immediately. To download an electronic version of 
the rule, you should access ACF's regulation page at: http://www.regulations.acf.hhs.gov or www.regulations.gov.

FOR FURTHER INFORMATION CONTACT: Elsbeth Porter Wyatt, Administration 
on Developmental Disabilities, telephone (202) 690-5841 (Voice). The 
TDD telephone number for the Administration on Developmental 
Disabilities is (202) 690-6415. These are not toll-free numbers. This 
document will be made available in alternative formats upon request.

SUPPLEMENTARY INFORMATION:

I. Developmental Disabilities Assistance and Bill of Rights Act of 2000

    In 1963 the President signed into law the Mental Retardation 
Facilities and Construction Act (Pub. L. 88-164). It gave the authority 
to plan activities and construct facilities to provide services to 
persons with mental retardation. This legislation was significantly 
amended a number of times since 1963 and most recently by the 
Developmental Disabilities Assistance and Bill of Rights Act of 2000, 
Public Law 106-402 (the DD Act of 2000). The DD Act of 2000 directs the 
Secretary of Health and Human Services to implement an accountability 
process to monitor the grantees that receive funds under the Act 
(Section 104(a)(3), 42 U.S.C. 15004(a)(3)). The process is to identify 
and report on progress achieved through advocacy, capacity building, 
and systemic change activities. Indicators of progress are to be 
developed for each area of emphasis and each entity receiving funds is 
required to meet these indicators of progress. A report to the 
President, Congress, and the National Council on Disability must be 
prepared using information on grantee progress with regard to these 
indicators every two years. Activities that focus on coordination and 
collaboration within and across the programs must be included in the 
report.
    The accountability system and the new reporting requirements form 
the substantive basis of this proposed rule. In addition, the proposed 
rule addresses the following changes made by the DD Act:
     The DD Act of 2000 also requires State Councils to set-
aside 70 percent of the Federal funds for activities tied to Council 
goals (Section 124(c)(5)(B)(i)). The previous amount was 65 percent. 
Also, the DD Act of 2000 increases the percentage from 50 percent to 60 
percent of representation by individuals with developmental 
disabilities on Councils (Section 125(b)(1)(C)(3)).
     The DD Act of 2000 also requires that a Protection and 
Advocacy (P&A) governing board be selected by the P&A and be subject to 
the policies and procedures the P&A chooses to establish. The 
membership of the board is now subject to term limits set by the P&A to 
ensure rotating membership. The DD Act of 2000 strengthens provisions 
regarding access to service providers and records of individuals with 
developmental disabilities in order to investigate potential abuse and 
neglect. Also, the State must now provide information to a P&A about 
the adequacy of health care and other services, supports, and other 
assistance that individuals with developmental disabilities receive 
through home and community-based waivers.
     Additionally, under the Act, the University Affiliated 
Programs are renamed University Centers for Excellence in Developmental 
Disabilities Education, Research, and Service (referred to as UCEDDs). 
Each UCEDD receives a core award. When appropriations are sufficient to 
provide at least $500,000, as adjusted for inflation, in funding to 
each existing UCEDD, ADD is required to award grants for national 
training initiatives and is authorized to create additional UCEDDs or 
to make additional grants to existing UCEDDs. New UCEDDS created under 
this authority or additional grants to existing UCEDDs would be in 
States or for populations that are unserved or underserved due to such 
factors as population, a high concentration of rural or urban areas or 
a high concentration of unserved or underserved populations (Section 
152(d)).
     Finally, the DD Act of 2000 authorizes Federal interagency 
initiatives to carry out projects relating to the development of 
policies that reinforce and promote the self-determination, 
independence, productivity, and inclusion in community life of 
individuals with developmental disabilities through the Projects of 
National Significance program.
    While not the subject of this proposed rule, the DD Act of 2000 
also established two additional program authorities, title II--Families 
of Children with Disabilities Support Act of 2000, and title III--
Program for Direct Support Workers Who Assist Individuals with 
Developmental Disabilities.

II. Grantees of the Administration on Developmental Disabilities (ADD) 
Network Under the Act

A. Protection and Advocacy of Individual Rights

    Formula grants are made to each State and other eligible 
jurisdictions for the establishment of a system to protect and advocate 
for the rights of individuals with developmental disabilities (P&As).

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The system must have the authority to pursue legal, administrative, and 
other appropriate remedies or approaches to ensure the protection, 
advocacy and rights of individuals with developmental disabilities who 
are or who may be eligible for treatment, services, or habilitation, or 
who are being considered for a change in living arrangement, with 
particular attention to members of ethnic and racial minority groups. 
The system must provide information and referral for programs and 
services addressing the needs of individuals with developmental 
disabilities, and have the authority to investigate incidents of abuse 
and neglect of individuals with developmental disabilities if the 
incidents are reported to the system, or if there is probable cause to 
believe that the incidents occurred.

B. Federal Assistance to State Councils on Developmental Disabilities

    Formula grants are made to each State and other eligible 
jurisdictions to support a State Council on Developmental Disabilities 
to engage in advocacy, capacity building, and systemic change 
activities that assure that individuals with developmental disabilities 
and their families participate in service and program design, and have 
access to needed community services. Formula grants provide 
individualized supports, and other forms of assistance that promote 
self-determination, independence, productivity, and integration and 
inclusion in all facets of community life through culturally competent 
programs. Activities contribute to a coordinated, consumer and family-
centered, consumer and family-directed, comprehensive system that 
includes needed community services, individualized supports, and other 
forms of assistance that promote self-determination for individuals 
with developmental disabilities and their families.

C. Projects of National Significance

    Under subtitle E of title I of the Act, ADD may award grants, 
contracts or cooperative agreements for Projects of National 
Significance (PNS) to enhance the independence, productivity, and 
inclusion of individuals with developmental disabilities. Generally, 
projects are to promote promising practices, demonstrate innovative 
approaches, provide technical assistance, collect data, educate 
policymakers, disseminate information, and expand opportunities for 
individuals with disabilities to participate in decision making and 
community life.

D. National Network of University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDDs). 
[Formerly University Affiliated Programs/UAP]

    In order to provide leadership, advise Federal, State, and 
community policymakers, and promote self-determination, independence, 
productivity, and full integration of individuals with developmental 
disabilities, grants are awarded to entities designated as Centers in 
the States and other eligible jurisdictions. The Centers are 
interdisciplinary education, research, and public service units of 
universities or public or not-for-profit entities associated with the 
universities that engage in the core functions of interdisciplinary 
pre-service preparation and continuing education of students and 
fellows, provision of community services, conduct of research, and 
dissemination of information related to activities undertaken to 
address the purpose of title I of the Act.

III. Discussion of NPRM

    This proposed regulation addresses the requirements of the DD Act 
of 2000 and reflects input from the grantees of the ADD network (State 
Councils on Developmental Disabilities, P&As, UCEDDs, and the national 
organizations that represent them: The National Association of 
Developmental Disability Councils (NADDC), the National Association of 
Protection and Advocacy Systems (NAPAS), and the Association of 
University Centers on Disabilities (AUCD)).
    Key proposed provisions are as follows:
    (a) The Definitions section (Sec.  1385.3) of the regulations has 
been updated to reflect terms defined in the statute that apply to all 
of the programs authorized by the DD Act of 2000;
    (b) Section 1385.5 of the regulations has been added to address 
program accountability and indicators of progress requirements for the 
State Councils on Developmental Disabilities, P&As and UCEDDs as added 
by Section 104(a) of the DD Act of 2000;
    (c) Current section 1386.22 of the regulations addresses access to 
records, facilities and individuals with developmental disabilities. We 
propose to move and revise this section to establish these regulations 
as a separate subpart C for the Protection and Advocacy Program;
    (d) Section 1388.5 of the regulations addresses the five-year plan 
and reporting requirements for UCEDDs. This section proposes a new 
Annual Report for UCEDDs to meet the requirements of the Act (42 U.S.C. 
15064).
    Technical and conforming changes to other sections of the rules for 
the DD Act programs have been made to address new terminology and 
revised statutory cites and to provide clarity. For ease of public 
understanding and comment, we have republished the regulatory text of 
all provisions of 45 CFR Chapter XIII, Subchapter I, The Administration 
on Developmental Disabilities, Developmental Disabilities Program in 
full.
    In developing this proposed regulation ADD examined many issues 
tied to the legislation and the administration of the programs funded 
under the DD Act.
    One issue for which we specifically seek public comment is whether 
the current process involving class action lawsuits provides adequate 
protection for individuals with developmental disabilities. For 
example, in order to include an individual as a member of a class what 
criteria should be applied or clearance process should be followed? 
Informed consent is a cornerstone of class action lawsuits to protect 
the rights of individuals who may choose to be or not to be members of 
a potential class. When an individual has a developmental disability a 
guardian may have a role in that decision. State laws vary greatly with 
regard to the roles and authority of guardians. What happens when there 
is a difference of opinion between the individual and guardian on 
whether to be a member of a class action lawsuit? It would be very 
helpful to receive comments on the procedures used to reach decisions 
on whether to pursue class action lawsuits and the method of informing/
obtaining consent. We will carefully consider all comments provided to 
determine whether any changes are warranted in the final regulations to 
ensure adequate protection of individual choice.
    Another issue is the question of which activities grantees may 
engage in to influence legislation and still be in compliance with 
statutes, regulations and OMB Circulars which generally restrict such 
activities and other activities ordinarily referred to as ``lobbying.'' 
The questions arise because State Councils, Protection and Advocacy 
agencies (P&As), University Centers for Excellence and Projects of 
National Significance are authorized under the provisions of the DD 
Act, to ``educate,'' ``advise'' or ``inform'' Federal, State and local 
policymakers. Sections 125(a)(5)(J), 143(a)(2)(L), 153(a)(1), and 
161(2)(D)(iii). The ``policymakers'' referred to in the statute

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include members of Congress, officials of the Federal executive branch, 
Governors, members of State legislatures and staff of State agencies.
    Congress customarily has included in the annual appropriations acts 
for HHS language restricting the use of appropriated funds to influence 
legislation. See, e.g., Section 503 of Public Law 209-149. 
Additionally, all projects funded by ADD, including those projects 
funded for the purpose of informing, educating or advising 
policymakers, are subject to restrictions on the use of Federal funds 
for lobbying purposes. Non-profit organizations receiving ADD awards 
are subject to the requirements of OMB Circular A-122, Attachment B, 
Paragraph 25, pertaining to lobbying.
    A section-by-section discussion of the significant changes made by 
this proposed regulation follows:

PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL DISABILITIES 
PROGRAMS

Section 1385.1 General

    Section 1385.1 General, covers administrative requirements for the 
ADD Network grantees. We are proposing to amend Sec.  1385.1 of this 
part by revising the introductory text to include a reference to 
section 1385.5 Program Accountability and Indicators of Progress. 
Paragraph (a) is proposed to be amended to update the name of the State 
Developmental Disabilities Councils to State Councils on Developmental 
Disabilities. Similarly, paragraph (b) is proposed to be amended to 
update the reference from Protection and Advocacy of the Rights of 
Individuals with Developmental Disabilities to Protection and Advocacy 
of Individual Rights. Paragraph (d) is proposed to be amended to update 
the reference from University Affiliated Programs to National Network 
of University Centers for Excellence in Developmental Disabilities 
Education, Research, and Service. These changes are proposed to conform 
the regulations with the language of the DD Act of 2000.

Section 1385.2 Purpose of the Regulation

    This section of the NPRM proposes to update the statutory reference 
to reflect enactment of the Developmental Disabilities Assistance and 
Bill of Rights Act of 2000.

Section 1385.3 Definitions

    This section of the NPRM updates terminology and definitions 
resulting from enactment of the Developmental Disabilities Assistance 
and Bill of Rights Act of 2000 and other necessary updates.

Section 1385.4 Rights of Individuals With Developmental Disabilities

    We are proposing to amend paragraph (a) to update the statutory 
citations. Section 109 of the Act is only applicable to State Councils 
on Developmental Disabilities. Additionally, the DD Act of 2000 
repealed the requirement that Councils, UAPs and Projects of National 
Significance provide assurances of compliance with Section 110 of the 
Act.
    Similarly, we are proposing to amend paragraph (b) to update 
statutory and U.S. Code citations for this requirement of the Councils 
and the submission of the State plan.
    We are proposing to amend paragraph (c). The PNS reference is being 
deleted as the Act no longer contains this provision or a comparable 
requirement. The UAP reference is proposed to be updated to refer to 
UCEDD and the application's assurance of compliance cite is being 
changed to Section 101(c) of the Act as provided in Section 
154(a)(3)(D) of the Act of 2000.

Section 1385.5 Program Accountability and Indicators of Progress

    We propose to add under section 1385.5, previously reserved, the 
Program Accountability and Indicators of Progress requirements for ADD 
grantees.
    The DD Act of 2000 requires that: (1) There be indicators of 
progress for each area of emphasis; (2) the indicators of progress be 
used by the Secretary and grantees to describe and measure at a minimum 
progress in advocacy, capacity building, and systemic change activities 
by satisfaction, collaboration, and improvement; (3) the indicators of 
progress be complied by grantees; (4) the indicators of progress result 
in information which can be included in the Secretary's report to 
Congress; and (5) the Secretary have a monitoring process for 
establishing program accountability that incorporates the indicators of 
progress.
    As proposed in section 1385.3, the areas of emphasis under the DD 
Act include: quality assurance activities; education activities and 
early intervention activities; child care-related activities; health-
related activities; employment-related activities; housing-related 
activities; transportation-related activities; recreation-related 
activities; and other services available or offered to individuals in a 
community, including formal and informal community support that affect 
their quality of life.
    The NPRM establishes the requirements for State Councils, P&As, and 
UCEDDs to identify, characterize, and track progress on grant goals. 
Each goal must be related to an area of emphasis. First, a grantee must 
select a goal or goals for the year in question. Second, a grantee must 
select a type of activity--advocacy, capacity building, or systemic 
change--through which each goal shall be undertaken. Third, a grantee 
must track progress on each goal by establishing measures of progress.
    The measures of progress must describe and measure: (1) Consumer 
satisfaction with the services provided through the activities of the 
grantee under its ADD funded program; (2) collaboration with other ADD 
grantees subject to the regulation; and (3) improvements in the ability 
of individuals with developmental disabilities to make choices about 
and exert control over the services which they receive, to participate 
in the full range of community life with persons of the individual's 
choice, and to access services, supports, and assistance to ensure the 
individual is free from exploitation, violations of legal and human 
rights, and inappropriate restraint or seclusion.
    The approach taken by the Administration on Developmental 
Disabilities in developing the proposed regulations was to comply with 
the requirements of the Act while preserving the capacity of grantees 
to design their programs to meet the needs of their individual 
communities as provided under the Federal Assistance to State Councils 
on Developmental Disabilities, the system of Protection and Advocacy of 
Individual Rights, and the national network of University Centers for 
Excellence in Developmental Disabilities Education, Research, and 
Service.
    The proposed regulations were developed in response to these 
requirements as follows: paragraph (a) Program Accountability Process; 
paragraph (b) Measures of Progress; paragraph (c) Indicators of 
Progress; paragraph (d) Measures of Consumer Satisfaction; paragraph 
(e) Measures of Collaboration; and paragraph (f) Measures of 
Improvement.
    For each area of emphasis under which a goal has been identified, 
each State Council on Developmental Disabilities, P&A, and UCEDD must 
state in its required planning document (State plan for Councils, 
Statement of Goals and Priorities for P&As, and the Five-Year plan for 
UCEDDs) the measures of progress (measures of

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consumer satisfaction, improvement, and collaboration) to be applied to 
its goals in the areas of emphasis selected for each year covered by 
the planning document. Each UCEDD plan also must categorize its goals 
under both an area of emphasis and one of its four core functions. 
Those functions are: (1) Interdisciplinary pre-service preparation and 
continuing education of students and fellows; (2) community services 
that provide training or technical assistance; (3) conduct of research; 
and (4) dissemination of information.
    Accordingly, under paragraph (a)(1) as proposed, the required 
planning document must classify under one or more areas of emphasis 
each of the goals related to advocacy, capacity building, and systemic 
change activities to be pursued during the year. The areas of emphasis 
selected may vary from grantee to grantee. UCEDDS also must classify 
any goal activity in terms of mandated core functions. Following is an 
example of the Education and Early Intervention area of emphasis using 
the goal of children with developmental disabilities being included in 
preschool programs:

    Example: Area of Emphasis: Education and Early Intervention.

 
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    Long-term goal     Short-term  objective  Role of State Council       Role of P&A           Role of UCEDD
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Children with          Number of children     Present information    Train parents on       Train Head Start
 developmental          with developmental     to Head Start          legal rights of        providers on
 disabilities are       disabilities in Head   directors on number    children with          inclusion of
 included in            Start programs will    of children with       developmental          children with
 preschool programs.    increase by 10%.       developmental          disabilities to        developmental
                                               disabilities waiting   participate in         disabilities in the
                                               for inclusive          preschool programs.    classroom.
                                               preschool programs.    Include information   Follow up to
                                              Attend meetings of      on accessibility,      determine actual
                                               Head Start directors   ADA, assistive         increase in number
                                               to outline issues      technology, etc.       of children
                                               and barriers.                                 included.
                                              Convene meeting of
                                               Head Start directors
                                               and DD Act network
                                               to develop plan of
                                               action.
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    Paragraph (a)(2) requires that for each area of emphasis the 
required planning document must include measures of progress for goals 
identified measuring: Consumer satisfaction; collaboration; and 
improvements in outcomes for persons with developmental disabilities. 
Measures of progress developed must be able to, over time, demonstrate 
whether the grantee has achieved progress in meeting the goals of the 
Act through its advocacy, capacity building, and systemic change 
activities.
    Paragraph (a)(3) provides that the measures of progress must meet 
all applicable program regulations. In the event the planning document 
fails to meet these regulatory requirements, the Commissioner shall 
decline to accept the planning document.
    Paragraph (a)(4) requires that the results of the application of 
the measures of progress for each areas of emphasis under which a goal 
has been established be reported.
    Paragraph (c) of the proposed rule requires that for each of the 
areas of emphasis under which the State Councils on Developmental 
Disabilities, the P&A, or UCEDD has classified activities, the 
indicators of progress shall be the grantee's achievement of the 
measures of progress it has established pursuant to this section for 
the years on which the grantee is reporting. Each State Council on 
Developmental Disabilities, the P&A, and UCEDD is required to meet the 
indicators of progress for each of the areas of emphasis in which it 
has classified activities for the year on which it is reporting.
    Measures of consumer satisfaction are addressed under proposed 
paragraph (d). Under this paragraph, each State Council on DD, P&A, and 
UCEDD must establish criteria on the level of consumer satisfaction to 
be attained for each area of emphasis for each goal identified and 
track its progress.
    Any grantee that is a member of the ADD Network must establish a 
goal or goals in one or more areas of emphasis. For each area of 
emphasis selected, a grantee must measure progress related to its 
goal(s) through activity(ies) in terms of consumer satisfaction in each 
of its selected area(s) of emphasis. Consumer satisfaction may be 
measured by the results of surveys of individuals with developmental 
disabilities affected by its activities, surveys of stakeholders, focus 
groups, and phone interviews. A grantee may include reports on whether 
the planned activity associated with a goal resulted in improved access 
to services for individuals with developmental disabilities.
    The following is an example of consumer satisfaction measures with 
respect to a Council. A State does not currently have a program to 
financially assist families who care for their children with 
developmental disabilities who live at home. A Council plans to fund a 
voucher program to support these families and children. Using examples 
from other States, several different approaches will be used with 
vouchers going toward different services including housing and child 
care. The Council plans to locate families and provide vouchers. 
Consumer satisfaction is measured through a post-activity 
questionnaire. A consumer survey of the program is planned to provide 
this information. The survey will address how the activity: (1) 
Improved the ability of individuals with developmental disabilities to 
exert choice and control over the services, support, and assistance; 
(2) Improved the ability to participate in community life; (3) Improved 
the ability to access services in a way that the individual is free 
from abuse, neglect, exploitation, and harmful treatment; and (4) 
Improved the individual's situation and circumstances. A final 
evaluation will lead to the development of a legislative proposal to 
introduce a permanent program for the State. This would be a Council 
systemic change, capacity building activity. The results of these 
measures must be reported in the annual Program Performance Report.
    The following is an example for P&As. A P&A plans to represent 
children who are not being allowed into an inclusive program at schools 
within the State. Looking at enrollment data the P&A targets three 
counties. The P&A identifies the cases of greatest need. The

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P&A then works with the school districts on Individualized Education 
Programs, facilitating the placement of children with developmental 
disabilities into regular classrooms. The P&A documents the numbers of 
children placed in inclusive programs as a result of the intervention, 
surveys those involved with this initiative and obtains their input to 
assist the P&A with future advocacy activities. This is a P&A advocacy 
activity. The goals in this example focus on: Identifying clients to be 
served; targeted education and early intervention as the area of 
emphasis; tracking progress through improvement measures; and, surveys 
that measure client satisfaction.
    The following is a UCEDD example. A UCEDD wants to train a group of 
pediatricians to serve individuals with developmental disabilities. The 
UCEDD identifies the group and provides the training. It checks back 
with the pediatricians to see if the training helped them. Consumer 
satisfaction is measured through a survey of a sample of patients or 
family members/advocates to assess the level of their satisfaction with 
their pediatricians trained by the UCEDD and to receive recommendations 
on expansion or changes in the training activities. This is a UCEDD 
capacity building activity. The goals in this example focus on the 
health area of emphasis. The type of activity includes training via 
curricula, role playing, case example, and/or consumer or family 
member/advocate interview or presentation. The UCEDD measure of 
progress would be an increase in pediatricians' caseloads of clients 
with developmental disabilities and patients being satisfied with the 
care they received from trained pediatricians.
    Proposed paragraph (e) specifies the requirement related to 
measures of collaboration. Under this paragraph, we propose to require 
each Council, P&A, and UCEDD to identify collaborative activities it 
will implement for each area of emphasis related to a goal. Under the 
proposal, UCEDDs also must identify interstate collaborative 
activities. In-state collaborations must include a meeting or 
Memorandum of Understanding on the proposed collaborative activities.
    Collaboration among a State's ADD grantees is very important. By 
collaboration ADD means efforts in which all three categories of a 
State's grantees work together (State Council, P&A, and UCEDD). In some 
States there are multiple UCEDDs. In these States the multiple UCEDDs 
would be expected to collaborate with each other and the State's 
Council and P&A.
    Proposed paragraph (f) specifies requirements related to measures 
of improvement. Under this proposed paragraph, State DD Councils, P&As, 
and UCEDDs must establish measures of improvement they will attain for 
each area of emphasis where a goal has been established by assessing 
the extent to which grantee activities have improved outcomes for 
individuals with developmental disabilities.
    Specifically, under the proposed rule, improvement measures assess 
the contribution of a grantee's activity to the ability of individuals 
with developmental disabilities to: (1) Make choices and exert control 
over the type, intensity, and timing of services, supports, and 
assistance that the individuals have used; (2) participate in the full 
range of community life with persons of the individual's choice; and 
(3) access services, supports and assistance in a manner that ensures 
that such an individual is free from abuse, neglect, sexual and 
financial exploitation, violation of legal and human rights, and the 
inappropriate use of restraints and seclusion.
    Improvement measures a grantee selects will be influenced by the 
nature of the goal(s) set by a grantee for its selected area(s) of 
emphasis. Describing and measuring improvements requires collection of 
baseline data and then tracking change. It would be appropriate to use 
either qualitative or quantitative measures, or both. ADD recognizes 
that a goal, rather than an area of emphasis, may be a determinant 
factor when a grantee decides on which improvement measures to use.
    The following is an example of improvement measures with respect to 
a Council. A Council selects the area of emphasis on employment. A goal 
is established that individuals with developmental disabilities will be 
employed through a variety of flexible employment options, including 
self-employment and working for temporary service agencies. The 
activities are to foster collaboration, provide technical assistance 
and training. The Council will work with the Division of Vocational 
Services (DVS) who will then contact interested individuals to develop 
work plans. Such plans will include marketing strategies and budgeting 
for fiscal responsibility. The Council will coordinate small, low-
interest loans through the local Business Leadership network and the 
Chamber of Commerce. Measures of progress will include: Adults have 
jobs of their choice through Council efforts; increased dollars 
leveraged for employment programs; employment programs or policies are 
created/improved; and individuals with developmental disabilities have 
additional employment opportunities.
    An example of an improvement measure with respect to an agency 
designated to administer the State P&A system follows. A P&A agency 
selects the area of emphasis on employment. A goal is established to 
reduce discrimination in the hiring, promotion, termination and failure 
to provide reasonable accommodations for people with developmental 
disabilities. The activities will be tied to requests for assistance. A 
case comes up involving a thirty year old person with mental 
retardation who lives in the community and has worked in the mailroom 
of a local bank for seven years. Following a change in management, the 
individual has a new supervisor. This supervisor has been increasingly 
hostile to the individual, including making it difficult for the 
individual's job coach to provide on-site assistance. In this case, the 
P&A will document that they provided training to management of the bank 
on the Americans with Disabilities Act, information on what constitutes 
a reasonable accommodation and information on the importance of natural 
supports to assist individuals with developmental disabilities to live 
and succeed in the community. This information included literature and 
contact information. The measure of progress will include increased 
consumer satisfaction with changes in workplace conditions after P&A 
intervention, and individuals with developmental disabilities will 
retain jobs in competitive workplace environments. The P&A would use 
this measure as baseline and work towards increasing the number of 
individuals being served.
    An example of improvement measures with respect to a University 
Center follows. A UCEDD wants to develop, implement, and evaluate a 
comprehensive statewide training program for direct support 
professionals (e.g., personal care assistants, occupational and 
physical therapy aides, home health aides, medical assistants, and 
human services case managers). The UCEDD establishes a timeframe of 
five years. The UCEDD develops a curriculum, obtaining input from other 
UCEDDs and other network partners and from individuals with 
developmental disabilities or family members/advocates. The UCEDD 
trains direct support professionals with the curriculum. The UCEDD 
evaluates its program annually and at the end of the five-year period, 
using input from all parties involved with respect to their 
satisfaction and recommendations for

[[Page 19713]]

future activities and revision of materials. The goals of this example 
focus on the health area of emphasis. The type of activity includes 
training via modules, role-playing, case examples, and/or consumer or 
family member/advocate interview or presentation. The proposed UCEDD 
measure of progress would be an increase in the number of direct 
support personnel successfully trained.
    As indicated above, under this proposed rule the areas of emphasis 
may vary from grantee to grantee. Examples that highlight the 
flexibility grantees have in selecting areas of emphasis include: (1) 
State Councils--One Council may focus on activities that support 
individuals with developmental disabilities in obtaining employment, 
while another Council may award funding to a model demonstration 
project to provide vouchers for respite care to families of persons who 
have developmental disabilities; (2) Protection and Advocacy System 
(P&A)--One P&A may spend time assisting children with developmental 
disabilities to secure an education in their neighborhood schools, 
while another P&A may focus on abuse and neglect within a large State-
run residential facility; (3) University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDDs)--
One UCEDD may provide direct clinical services by performing diagnostic 
evaluations on children with developmental disabilities, while another 
UCEDD may be involved with aging issues and people with developmental 
disabilities. This NPRM maximizes flexibility and fosters collaboration 
among grantees of the ADD Network.
    These proposed provisions are based in part on input from the 
field. The requirements also represent an evolution of a product called 
the ADD Roadmap to the Future, written prior to the DD Act of 2000. The 
Roadmap was developed to establish performance measures. Reporting 
mechanisms were developed in response to the requirements of the 
Government Performance and Results Act (GPRA) in 1993.
    GPRA was passed in response to ongoing concerns that policy making, 
spending decisions, and program oversight were being hindered by 
insufficient information about program performance and results. GPRA 
holds agencies accountable for program performance by requiring the 
development of a five-year strategic plan, an annual performance plan, 
and an annual performance report. The strategic plan must include a 
comprehensive mission statement and general goals and objectives 
covering the major functions and operations of the agency. The annual 
performance plan must: (1) Be consistent with the agency's strategic 
plan; (2) establish measurable performance goals; and (3) describe the 
operational processes, resources and technology required to meet the 
performance goals. The agency must submit an annual performance report 
to the President and the Congress on the results for the previous 
fiscal year. The performance report compares the annual performance 
goals established for the fiscal year with the actual performance 
achieved in that year. The report assesses the progress made in 
achieving the goals and explains factors causing deviations from the 
original goal targets.
    It is important that the ADD programs continue to focus on the GPRA 
measures, where applicable, as well as the goals and activities tied to 
the measures of progress.
    Prior to 2002, ADD's GPRA measures focused on consumer impact, 
systemic change, and the establishment of baseline data in the areas of 
employment, housing, education, health, self-determination, and 
community inclusion. Although grantees may focus on any area(s) of 
emphasis through their goals, we encourage that goals be tied to ADD's 
GPRA measures.

Section 1385.6 Employment of Individuals With Disabilities

    This section of the regulation addresses grantee responsibilities 
regarding affirmative action and employment tied to disability without 
discrimination and is proposed to be published unchanged except to 
update statutory and U.S. Code citations.

Section 1385.7 Reports of the Secretary

    We are proposing to add a new section covering Reports of the 
Secretary as required by Section 105 of the DD Act of 2000 (42 U.S.C. 
15005) at Sec.  1385.7 which is currently reserved. Under the proposed 
language, in order for ADD to have the required information to prepare 
the Report to Congress all grantees would be required to submit plans, 
applications and reports that label goals, activities and results 
clearly in terms of the following: Area of emphasis, type of activity, 
and categories of measures of progress.

Section 1385.8 Formula for Determining Allotments

    This section addresses how the Commissioner will allocate funds 
appropriated under the Act for the Councils and the P&As. This section 
of the regulation is proposed to be published unchanged except to 
update the reference from State Developmental Disabilities Councils to 
State Councils on Developmental Disabilities.

Section 1385.9 Grants Administration

    The NPRM proposes technical changes to Sec.  1385.9 to include 
reference to two additional parts of title 45 CFR that apply to grants 
under this section, 45 CFR part 76--Government-Wide Debarment and 
Suspension (Non-Procurement) and Government-Wide Requirements for Drug-
Free Workplace and 45 CFR part 93--New Restrictions on Lobbying, and to 
delete reference to Part 75--Informal Appeal Procedures, as these 
requirements have been withdrawn by the Department of Health and Human 
Services. Other changes are proposed to address terminology changes 
made by the DD Act of 2000.

PART 1386--FORMULA GRANT PROGRAMS

Subpart A--Basic Requirements

Section 1386.1 General
    The NPRM proposes technical changes to Sec.  1386.1 to update the 
terminology.
Section 1386.2 Obligation of Funds
    Similarly, the NPRM revises Sec.  1386.2 to update terminology.
    We propose to revise the title of subpart B to read: Subpart B--
Protection and Advocacy of Individual Rights.
Section 1386.19 Definitions
    This section of the NPRM revises the terms and definitions that 
apply in Sec. Sec.  1386.20, 1386.21, 1386.24 and 1386.25 of this 
subpart and to subpart C. Specifically:
     The definition of ``abuse'' has been revised to be 
consistent with the interpretation contained in the preamble 
accompanying the Protection and Advocacy for Individual with Mental 
Illness (PAIMI) regulation, at 62 FR 53551 (Oct. 15, 1997). The current 
regulation includes a list of acts that constitute abuse. The new 
language indicates that what constitutes abuse is not limited to these 
acts. The regulation does not define specifically the threshold at 
which a violation of an individual's rights constitutes abuse. Such a 
decision would be up to the P&A system to determine based on their 
intimate knowledge of the situation on behalf of an individual with 
developmental disabilities. The definition is not intended to limit the 
authority of the courts to review the

[[Page 19714]]

determinations of P&As of whether individuals with developmental 
disabilities have been subject to abuse.
     The definition of ``American Indian Consortium'' was added 
to clarify the eligibility requirements for the award of an American 
Indian Consortium under the P&A program. The American Indian Consortium 
is unique to the P&A program and carries out the responsibilities and 
exercises the authorities specified for a state.
     The definition of ``complaint'' has been revised from 
language indicating that the complaint be tied to alleged abuse or 
neglect of an individual with a developmental disability to broader 
language indicating that the complaint relates to the status or 
treatment of an individual with a developmental disability.
     The definition of the term ``facility'' was deleted. The 
Act no longer refers to ``facilities,'' but instead refers to ``a 
location in which services, supports, or other assistance are provided 
to an individual with a developmental disability.'' See 42 U.S.C. 
15043(a)(2)(H) (access authority) and 42 U.S.C. 15043(c) (definition of 
``records''). The Act's use of this phrase confirms that P&As may serve 
persons residing in community settings so we also are deleting the 
definition of ``Community living arrangements.''
     The term ``full investigation'' has been revised to delete 
reference to ``facilities'' and ``clients'' to be replaced with the 
phrase ``individuals with developmental disabilities'' as all eligible 
persons are to have access to P&A services, not just those where a 
client relationship has been established.
     The definition of ``neglect'' has been revised to indicate 
that an individual perpetrating the act of neglect now must be 
responsible for providing ``services, supports or other assistance'' 
rather than an individual providing ``treatment or habilitation 
services.''
     The definition of ``probable cause'' has been revised. The 
proposed regulation indicates that the P&A system is the final arbiter 
of probable cause between itself and the organization or individuals 
from whom it is seeking records. The definition is not intended to 
affect the authority of the courts to review the determinations of P&As 
of whether probable cause exists.
     Additionally, a new definition of ``Service Provider'' has 
been proposed. The definition states, the term ``service provider'' 
refers to any individual (including a family member of an individual 
with a developmental disability), or a public or private organization 
or agency that provides, directly or through contract, brief or long-
term services, supports or other assistance to one or more individuals 
with developmental disabilities. Service providers include, but are not 
limited to, locations such as group homes, board and care homes, 
individual residence and apartments, day programs, public and private 
residential and non-residential schools (including charter schools), 
juvenile detention centers, hospitals, nursing homes, homeless 
shelters, and jails and prisons.
     A definition of ``State Protection and Advocacy system'' 
has been added to clarify that the term ``State Protection and Advocacy 
System'' is synonymous with the term ``P&A'' used elsewhere in this 
regulation, and the terms ``system'' and Protection and Advocacy system 
used in this part and in Part C.
Section 1386.20 Agency Designated To Administer the State Protection 
and Advocacy System
    ADD is proposing to revise the title of section 1386.20 to Agency 
Designated To Administer the State Protection and Advocacy System from 
Designated State Protection and Advocacy Agency. The statute makes a 
distinction between the ``system'' which must be in existence and the 
agency implementing the system. See 42 U.S.C. 15043(a)(4). This phrase 
has been substituted throughout this section of the proposed rule as 
appropriate.
    ADD also is proposing to revise paragraph (e)(6) regarding 
redesignation to clarify that the P&A and the designating official will 
have an opportunity to respond to comments from agencies administering 
the Federal protection and advocacy program. Additionally, statutory 
citations have been updated for paragraphs (d)(2)(i) and (f)(2), and 
paragraph (d)(4) has been slightly edited.
Section 1386.21 Requirements and Authority of the State Protection and 
Advocacy System
    ADD is proposing to revise the title to include a reference to 
``State'' in relation to the Protection and Advocacy System for 
clarity. In paragraphs (a) and (f) we are proposing to update 
terminology and statutory cites. We are proposing two substantive 
changes. First, we propose to revise paragraph (c) to include 
additional language regarding prohibited State actions which would 
diminish or interfere with the exercise of the P&As required authority. 
Second, in order to ensure that the notice and the opportunity for 
comment is given to all individuals who might potentially be interested 
in commenting, ADD is proposing to revise paragraph (h) to indicate 
that prior to any Federal review of the State program, a 30-day notice 
and opportunity for public comment must be provided in the Federal 
Register.
    To improve organization of the regulation, ADD is proposing to 
redesignate current Sec.  1386.22 as section 1386.25 that would be 
included under a new subpart C. This section is discussed in more 
detail later in the preamble.
    Current section 1386.23 is proposed to be revised and redesignated 
as Sec.  1386.22, Periodic Reports: State Protection and Advocacy 
System.
    Under proposed section 1386.22 ADD is proposing to revise the title 
to include a reference to ``State'' in relation to the Protection and 
Advocacy System for clarity. ADD is proposing to revise paragraph (a) 
to address the requirements of Section 144(e) of the Act (42 U.SC. 
15044), the applicable regulations and include information on the 
system's program necessary for the Secretary to comply with Section 
105(1), (2), and (3) of the Act (42 U.S.C. 15005). Each system must 
report on its achievement of the measures of progress for the 
proceeding year pursuant to section 1385.5.
    ADD is proposing to revise paragraph (b) to clarify what financial 
report is required and that the report shall be submitted semiannually.
    ADD also is proposing to revise paragraphs (c) and (d) to update 
terminology, including converting references to ``Statement of 
Objectives and Priorities (SOP)'' to Annual Statement of Goals and 
Priorities (SGP). Under paragraph (c), we also are proposing to include 
language regarding each area of emphasis and the measure of progress 
(measures of consumer satisfaction, improvement, and collaboration) as 
provided under section 1385.5 of this part to measures goals. If 
changes are made to the goals or the measures of progress established 
for a year, the SGP must be amended to reflect those changes. The SGP 
must include a description of how the Protection and Advocacy system 
operates, and where applicable, how it coordinates the State Protection 
and Advocacy program for individuals with developmental disabilities 
with other Protection and Advocacy programs administered by the State 
Protection and Advocacy system. This description must include the 
System's processes for intake, internal and external referrals, and 
streamlining of advocacy services. The description also must address 
collaboration, the reduction of duplication and overlap of services, 
the sharing of information on service needs,

[[Page 19715]]

and the development of statements of goals and priorities for the 
various advocacy programs. In addition, we are proposing that each 
Protection and Advocacy system be required to disclose in its SGP 
whether it will be requesting or requiring fees or donations from 
clients as part of the intake process. This new requirement is being 
proposed in order that the public will have notice of such a policy and 
an opportunity to comment on it as part of the process required under 
paragraph (d).
    Section 1386.24 Non-allowable costs for the State Protection and 
Advocacy System of the current regulations is proposed to be 
redesignated as section 1386.23. ADD is proposing to revise the title 
to include a reference to ``State'' in relation to the Protection and 
Advocacy System for clarity. We are republishing the full text of newly 
designated Sec.  1386.23, Non-allowable costs for the State Protection 
and Advocacy System for the ease of public comment. No changes are 
proposed to be made in this section.
    Finally, section 1386.25 Allowable litigation costs for the State 
Protection and Advocacy System, is proposed to be redesignated as 
section 1386.24. ADD is proposing to revise the title to include a 
reference to the ``State Protection and Advocacy System'' for clarity. 
We are republishing the remaining text for the ease of public comment.

Subpart C--Access To Records, Service Providers and Service Recipients

    ADD is proposing to create a new subpart C. This change is being 
proposed because of the increased level of importance and detail that 
accessing records of individuals with developmental disabilities plays 
in supporting the P&A system in investigating suspected cases of abuse 
and neglect. ADD also is proposing to make the regulation on access to 
records consistent, where applicable, with the PAIMI regulation 
referenced earlier (42 CFR part 51.41). The goal is to ensure that all 
facets of the P&A system administered by the Department are subject to 
the same legally supportable requirements. ADD is the lead agency that 
administers the P&A system and the DD Act establishes those 
requirements. Many of the changes reflect the new access authority 
language contained in 42 U.S.C. 15043(a)(2)(I) and (J). Where we 
exercise discretion, we do so in the belief that the proposed 
provisions are necessary to meet Congress' underlying intent to ensure 
necessary access to records to promote the System's authority to 
investigate abuse and neglect and ensure the protection of rights. This 
broad interpretation of available records and reports also is 
consistent with the requirements of the PAIMI regulations.
    This NPRM addresses key provisions in subtitle C (42 U.S.C. 
15043)(a)(1); (2)(A), (H), (I), (J); and (c) Protection and Advocacy of 
Individual Rights, in the DD Act that pertain to P&As access to service 
providers, access to recipients of services (i.e., individuals with 
developmental disabilities) and access to records when incidents of 
abuse or neglect are suspected or reported, the health and safety of 
individuals with developmental disabilities are in jeopardy or are 
suspected of being in jeopardy, or in the case of a death of an 
individual with a developmental disability. In addition, the NPRM 
addresses provisions in Subtitle C concerning when consent for access 
to records from an individual with a developmental disability or the 
individual's guardian, conservator or legal representative is required 
and when it is not required. Moreover, the NPRM addresses provisions in 
Subtitle C that describe examples of the types of records to which a 
P&A shall have access. Given the obligation of P&As to conduct 
investigations of the incidences described here and in certain 
circumstances to contact an individual's guardian, conservator or legal 
representative, the Administration on Developmental Disabilities takes 
the position in this NPRM that a P&A shall have prompt access to 
contact information of such individuals. The law and this NPRM make 
distinctions about when a P&A will have access to records between 
``routine incidents'' and other incidents involving abuse, neglect, 
health, safety, or a death.
    The NPRM approach to addressing these key provisions are not only 
consistent with the DD Act but also consistent with the 2nd Circuit 
decision in ``State of Connecticut Office of Protection and Advocacy 
for Persons with Disabilities and James McGaughey, Executive Director, 
State of Connecticut, Office of Protection & Advocacy for Persons with 
Disabilities v. Hartford Board of Education, Hartford Public Schools 
and Robert Henry, Supt. Of School.''
    Consistent with the DD Act, the 2nd Circuit's decision, and the 
proposed definition of ``service provider'' elsewhere in this NPRM, 
when schools provide services to individuals with developmental 
disabilities, they must provide P&As with access to locations, 
individuals, and records under the conditions spelled out in the DD Act 
(42 U.S.C. 15043)(a)(1); (2)(A), (H), (I), (J); and (c)).
    Second, the 2nd Circuit decision and this NPRM track the DD Act, 
requiring that a P&A have access at reasonable times to any individual 
with a developmental disability in a location in which services, 
supports, and other assistance are provided to such an individual, in 
order to carry out the purpose of Subtitle C ((42 U.S.C. 
15043)(a)(2)(H)). It is important to note that the DD Act, and 
therefore this NPRM makes no distinctions on the basis of age with 
regard to access an individual by the P&A.
    Third, the 2nd Circuit in its decision and this NPRM recognize that 
the charge to P&As is to engage in a range of activities--protect the 
legal and human rights of individuals with developmental disabilities 
and monitoring for incidents of abuse or neglect and the health and 
safety of individuals with developmental disabilities. Thus, a P&As 
work does not end when it investigates and brings to closure a specific 
incident of abuse or neglect or risk to health and safety. We interpret 
the DD Act as providing P&As with the authority to pro-actively monitor 
situations where abuse and neglect or risks to health and safety may 
occur. We believe this NPRM outlines reasonable parameters for which 
P&As may have access to individuals with developmental disabilities, 
their records, their service providers, and the locations where 
services are provided to them, even under non-emergency situations 
(i.e., those not involving allegations of abuse or neglect, probable 
cause to believe that the health or safety of the individual is in 
serious and immediate jeopardy, or in the case of a death).
    Fourth, this NPRM and the DD Act are very specific in terms of when 
consent for records is required. In situations in which an individual's 
health and safety are in immediate jeopardy or a death has occurred, no 
consent is required and access to records should be provided no later 
than within 24 hours (42 U.S.C. 15043(a)(2)(J)(ii)). The 2nd Circuit in 
its decision recognizes and cites the DD Act as having special 
conditions (noted here) when an emergency situation is the issue ( 
i.e., those involving allegations of abuse or neglect, probable cause 
to believe that the health or safety of the individual is in serious 
and immediate jeopardy, or in the case of a death).
    Fifth, the 2nd Circuit, the DD Act (at 42 U.S.C. 
15043(a)(2)(I)(iii)(III)-(V)), and this NPRM recognize the importance 
of having contact information when P&As are conducting investigations. 
As such, and consistent with the 2nd Circuit, this NPRM proposes to 
require that P&As

[[Page 19716]]

have access to contact information when conducting an investigation. In 
incidences of suspected or reported abuse or neglect (when such 
incidents have been reported or good cause has been shown), risks to 
health and safety, or in the case of a death of an individual with a 
developmental disability, timing is a vital factor. Service providers 
should maintain up-to-date contact information for individuals with 
developmental disabilities, and parents, guardians, legal 
representatives, or conservators for individuals with developmental 
disabilities. In the situations noted here, when asked by a P&A for 
this contact information, a service provider should provide the 
information immediately.
    As indicated previously, section 1386.22 is proposed to be 
redesignated and renamed section 1386.25 Access to Records. We are 
proposing to revise section 1386.25(a)(3), as redesignated, to 
incorporate monitoring activities and changing reference to ``health 
and safety'' to ``abuse or neglect.'' In paragraph (3)(i), we propose 
to add a requirement for disclosure of the name and address of a 
representative be given to the P&A promptly. ADD believes that it is 
critical to the investigative function that P&As be given access to the 
names of representatives promptly. This requirement prevents undue 
delay in the P&As' intervention in the prevention of further abuse and 
neglect. Paragraphs (a)(2)(iii) and (3)(ii), as redesignated, are 
republished with slight edits. Paragraph (3)(iii) has been changed to 
read, ``the representative has failed or refused to act on behalf of 
the individual.''
    We also are proposing to make changes to section 1386.25(b) as 
redesignated. In paragraph (b)(1) we propose to delete reference to 
``supportive'' and refer instead to ``supports or assistance'' and 
``service provider'' to be consistent with the Act. The language 
regarding reports available to the P&A is based on Congress' intent to 
ensure access to records to promote the System's authority to 
investigate abuse or neglect and ensure the protection of rights. The 
remainder of paragraph (b) has been revised to reflect editorial 
changes.
    ADD also is proposing to revise paragraph (c) of this section to 
reflect new authority contained in the DD Act of 2000. Specifically, 
the second sentence of (c)(1) proposes language related to access to 
the records of a deceased person without any showing of probable cause, 
and is based on our interpretation of 42 U.S.C. 15043 
(a)(2)(J)(ii)(ll). The provision also requires that a P&A have access 
to records of an individual with a developmental disability within 24 
hours of the P&A's written request when the P&A has probable cause to 
believe that the individual is in serious and immediate jeopardy. In 
the case of a deceased individual or where the P&A has probable cause 
to believe the individual is in serious and immediate jeopardy, the 
consent of another party is not necessary for access to the records. 
ADD is also proposing to set a standard in the regulation for 
determining whether a decedent had a developmental disability. The 
proposed regulation provides: ``Any individual who dies in a situation 
in which services, supports, or other assistance are, have been, or may 
customarily be provided to individuals with developmental disabilities 
shall, for purposes of the P&A's obtaining access to the individual's 
records, be deemed an individual with a developmental disability.'' The 
purpose of this proposal is to simplify the task of P&As in 
establishing that the decedent was an individual with a development 
disability. Proving that the functional definition of the developmental 
disability which appears in Section 102(8) of the Act applies to a 
living person can be difficult; it will be all the more difficult to 
prove its application to an individual who is no longer living. In 
making this proposal ADD is seeking to avoid making access to the 
records of a deceased individual so difficult that the intent of 
Congress in enacting Section 143(a)(2)(J)(ii)(II) of the Act would be 
frustrated.
    ADD is proposing to remove all of section 1386.25(e) as 
redesignated and consolidate the provisions into section 1386.28(e), 
discussed later in this preamble.
    Proposed section 1386.25(d) addresses the remaining provisions 
regarding sharing and copying of records. This paragraph proposes, ``If 
the organization or agency having possession of the records copies them 
for the P&A system, it may not charge the P&A system an amount that 
would exceed the amount it customarily charged other non-profit or 
State government agencies for reproducing documents.'' These revisions 
also will make this new section consistent with the PAIMI regulation. 
The PAIMI regulation states (42 CFR 51.41) that the P&A system may not 
be charged for copies more than is ``reasonable'' according to 
prevailing local rates, and certainly not a rate higher than that 
charged by any other service provider, and that nothing shall prevent a 
system from negotiating a lower fee or no fee. Many service providers 
have tried to impose excessive costs on P&As for copies as a means of 
obstructing access. The above clarifications are necessary to prevent 
this from occurring. Also the clarification on the time frame during 
which copies of records must be provided to P&As is necessary to avoid 
the frequently long delays in this regard. Often it is the service 
provider and not the P&A which makes the copies of the requested 
records. Prompt access for the P&A to inspect records is of little 
assistance in its investigation if copies of the records themselves are 
not provided quickly.
    In Sec.  1386.25(d) it is not the intent of ADD that the 
requirement for P&As to have a right to use their own equipment for 
copying be used to require that organizations being investigated allow 
P&As to remove records from the organization's premises to make the 
copies. The remaining provisions of 1386.25 as redesignated, ((current 
regulations section 1386.22 (f), (g), (h) and (i)), are proposed to be 
incorporated into new Sec. Sec.  1386.26 and 1386.27 as discussed 
below.
    ADD is proposing a new section 1386.26 named ``Denial or Delay of 
Access.'' This section parallels the PAIMI regulation at 42 CFR 51.43. 
Under this paragraph, P&As must be able to obtain the identities of 
service recipients from service providers (who have control of this 
information). The confidentiality of such P&A records as proposed are 
protected under other provisions of this regulation. In emergency 
situations or in the case of a service recipient's death, section 
143(a)(2)(J)(ii) of the DD Act provides P&As with access to records of 
service recipients within 24 hours after written request is made and 
without consent. In that vein, we propose a one-business day deadline 
for providing the written justification denying access. ADD believes 
that such standards are necessary in recognition of the consequences of 
not accessing individuals quickly when there are allegations of abuse 
or neglect, probable cause to believe that the health or safety of the 
individual is in serious and immediate jeopardy, or in the case of a 
death.
    Section 1386.26 concludes with a description of the information 
that should be included in the justification denying access. This 
provision is contained in current regulations at 1386.22(i).
    ADD is proposing a new section 1386.27 Access to Service Providers 
and Service Recipients to replace section 1386.22(f) of the current 
regulations. Under this section, the term ``service provider'' is 
substituted throughout for the term ``facility.'' The language

[[Page 19717]]

otherwise remains the same except for editorial changes. We are 
proposing changes under (b)(1) through (3) to address the times and 
circumstances under which access shall be afforded. This language is 
consistent with the PAIMI regulation (62 FR 53561-62).
    In this NPRM, we propose that P&A systems should not be required to 
provide notice to a service provider when they are coming to 
investigate an allegation of abuse or neglect, when they have probable 
cause to believe that the health or safety of the individual is in 
serious and immediate jeopardy, or in the case of a death. However, 
P&As should give notice when it will be visiting a service provider as 
part of an investigation in non-emergency situations (those not 
involving allegations of abuse or neglect, probable cause to believe 
that the health or safety of the individual is in serious and immediate 
jeopardy, or in the case of a death).
    ADD is proposing that P&A systems should have the right to access 
service providers ``all times necessary * * *'' to conduct a full 
investigation, and particularly when the system has determined 
``probable cause'' that there is or may be imminent danger of serious 
abuse or neglect of an individual. ADD believes that immediate access 
is necessary with respect to service providers to permit P&As to 
uncover situations that may involve immediate threats to health or 
safety. It also is necessary to prevent interested parties from 
concealing situations involving abuse or neglect or taking actions 
which may compromise evidence related to such incidents (such as 
intimidating staff or service recipients).
    To address this, ADD is proposing a new subsection 1386.27(c) which 
replaces section 1386.22(g) of the current regulation. We are proposing 
to add new language in paragraph (c) to read, ``A P&A also shall be 
permitted to attend treatment planning meetings concerning individual 
service recipients with the consent of the individual or his or her 
guardian, conservator or other legal representative. Access to 
facilities shall be afforded immediately upon an oral or written 
request by the P&A system. Except where complying with the P&A's 
request would interfere with treatment or therapy to be provided, 
service providers shall provide access to individuals for the purpose 
covered by this paragraph within 24 hours of the system's making a 
request. If the P&A's access to an individual must be delayed beyond 24 
hours to allow for the provision of treatment or therapy, the P&A shall 
receive access as soon as possible thereafter. Service recipients 
subject to the requirements in this paragraph include adults or minors 
who have legal guardians or conservators. P&A activities shall be 
conducted so as to minimize interference with service provider 
programs, respect service recipients' privacy interests, and honor a 
recipient's request to terminate an interview.'' Under the proposed 
rule, such access is for the purpose of:
    (1) Providing information, training, and referral for programs 
addressing the needs of individuals with developmental disabilities, 
and information and training about individual rights, and the 
protection and advocacy services available from the P&A system, 
including the name, address, and telephone number of the P&A
    (2) Monitoring compliance with respect to the rights and safety of 
service recipients; and
    (3) Inspecting, viewing and photographing all areas of a service 
provider's premises which are used by service recipients or are 
accessible to them.
    ADD is proposing these changes to clarify that access be permitted 
to treatment planning meetings (with the consent of the individual or 
his or her guardian), as such access is needed to assure that service 
providers are protecting the health and safety of service recipients. 
The limitation related to individual/guardian consent would provide an 
appropriate safeguard concerning privacy. Consent of other individuals 
who may be receiving treatment or services at the same location (for 
example, group therapy situations) will be tied to the policies of the 
premises where the care is being provided.
    The ADD proposed regulations support the PAIMI Act regulation. For 
example, such access is supported by the legislative history of the 
PAIMI Act, which provides that P&As must be afforded ``access to 
meetings within the facility regarding investigations of abuse and 
neglect and to discharge planning sessions.'' S. Rep. 454, 100th Cong., 
2d Sess. (1988). Based on this statement (and in the interest of 
assuring consistency with the PAIMI Program), the P&A also should be 
authorized to attend treatment team meetings, which serve some of the 
same purposes as discharge planning sessions. The DD Act and its case 
law generally support extremely broad access to individuals to monitor 
conditions relating to safety and health. We interpret these 
authorities, then, to generally support treatment team access; as such 
access is an important strategy in monitoring the adequacy of health 
care.
    We are further proposing to move section 1386.22(h) in the current 
regulation to section 1386.27(d) in the proposed regulation. Changes 
proposed are only editorial.
    Similar to the approach used in the PAIMI regulation at section 42 
CFR 51.45, ADD is proposing to incorporate in a new section 1386.28, 
Confidentiality of Protection and Advocacy Systems Records. This 
section will replace the current ADD regulation in 45 CFR 1386.22(e), 
Access to Records, Facilities and Individuals that deals with P&A 
access authority. Because the confidentiality provisions relate to a 
broad range of client information, and not only materials obtained 
through the P&A's access authority, it is more appropriate to address 
the issues in a separate, dedicated section of the regulation. ADD also 
proposes that the new provision on confidentiality be modeled after the 
existing provision on this subject in the PAIMI regulation at 42 CFR 
51.45, with certain alterations. Paragraph (a) and (a)(1) of section 
1386.28 as proposed mirror the existing provisions (1386.22(e) and 
(e)(3)) with editorial changes. Paragraphs (a)(1)(i), (ii), (iii) and 
(iv) contain new language to clarify that the P&A must keep 
confidential--records and information, in any automated electronic 
database pertaining to clients; individuals who have been provided 
general information or technical assistance on a particular matter; the 
identity of individuals who report incidents of abuse or neglect, or 
who furnish information that forms the basis for a determination that 
probable cause exists and names of individuals who have received 
services; and names of individuals who have received services, supports 
or other assistance, and who provided information to the P&A for the 
record. Paragraph (a)(2) remains the same as current regulations 
(1386.22(e)(2)). Paragraph (a)(2) requires the P&A systems to have 
written policies governing the access, storage, duplication and release 
of information from client records. Paragraph (a)(3) as proposed 
requires the P&A system to obtain written consent from the client and/
or various other individuals, before releasing information on such 
individuals to individuals not authorized to receive such information.
    Proposed paragraphs (b) and (c) reflect the critical need for P&As 
to disclose to other investigative and enforcement agencies information 
about ongoing or potential abuse and neglect and specific individuals 
affected. Frequently, a P&A will uncover, as part of its own 
investigation or monitoring efforts, information about abuse and

[[Page 19718]]

neglect which must be addressed promptly by other agencies with 
specialized State or Federal authority and/or greater resources, such 
as State licensing and certification agencies, the Department of 
Justice, and the police. In order for these agencies to act promptly 
and effectively, they must be provided specific information about 
individuals subject to abuse or neglect and the relevant circumstances. 
We recommend that such information be disclosed where possible with 
significant restrictions on redisclosure and only under those 
circumstances in which the P&As have obtained the information pursuant 
to the authority under the DD Act.
    The NPRM redesignates subpart C as subpart D and revises the 
material to update statutory and U.S. Code citations to conform to the 
Developmental Disabilities Act of 2000 and update the wording of the 
State Councils on Developmental Disabilities.
    In Sec.  1386.30, State plan requirements, we are proposing in 
paragraph (c) that the State plan must be submitted through the 
Electronic Data Submission system rather than any other format. In 
paragraph (c)(2) new language on the plan goals is being proposed. The 
goals must be clearly expressed in terms of the area(s) of emphasis to 
be covered, the types of activity to be undertaken (i.e., advocacy, 
capacity building, systems change), the specific measures of progress 
to be used (consumer, collaboration, improvement), and if applicable, 
and not reflected otherwise, the extent to which unserved or 
underserved individuals or groups, particularly from ethnic or racial 
groups or geographic regions (e.g., rural) were the target of 
assistance or services (see Section 125(c)(7) and Section 105(1)(C) of 
the Act).
    Paragraph (c)(3) proposes that the plan provide for the 
establishment and maintenance of a Council and describe the membership 
of the Council. This includes the requirement that the non-State agency 
members of the Council shall be subject to term limits to ensure 
rotating membership. Paragraph (d) proposes to require that the State 
plan be updated as appropriate during the five-year plan period and 
specifies that amendments to plans are required when substantive 
changes are made, including changes under proposed paragraph (c)(2) 
related to performance activities. In paragraph (e) we are proposing 
time limits (no longer than five years) for demonstration projects and 
activities performed by the Councils. A five-year time limit has been 
established to coincide with the duration of the State plan. Paragraph 
(a) is republished with updated statutory citations, and paragraphs (b) 
and (f) are republished with updated statutory citations and editorial 
changes.
    In Sec.  1386.31 State plan submittal and approval, we are 
proposing to revise paragraph (b) to require that the plan be submitted 
to ADD rather than the appropriate regional office. Also, we are 
proposing to revise the provision which requires the Governor or the 
Governor's designee approval of the State plan or amendment. The 
regulation proposes that the State plan or amendment must be approved 
by the entity or individual authorized to do so under State law. This 
requires States to determine who would approve the State plan or 
amendment, which could be the Council, the Governor or the Governor's 
designee. This authorization could be based on such actions as: 
executive orders, proclamations, State statute, common law, or the 
State constitution. In paragraph (c) we are proposing to indicate that 
plans received during a quarter of the Federal fiscal year are approved 
back to the first day of the quarter so costs incurred from that point 
forward are approvable. Paragraphs (a) and (d) are proposed to be 
republished without change.
    In Sec.  1386.32, Periodic reports: Federal assistance to State 
Developmental Disabilities Councils, we are proposing to revise the 
title to read Sec.  1386.32 Periodic reports: Federal assistance to 
State Councils on Developmental Disabilities. ADD is proposing to 
revise paragraph (a) to clarify what financial report is required and 
that the report shall be submitted semiannually. In Sec.  1386.32(b) 
the reference to a statutory cite is proposed to be updated and 
language is revised to clarify that State Council's Program Performance 
Report (PPR) must be clearly expressed in terms of area(s) of emphasis 
to be covered, the types of activity to be undertaken (i.e., advocacy, 
capacity building, systems change), the measures of progress to be 
used, and if applicable, and not stated elsewhere in the document, the 
extent to which unserved or underserved individuals or groups, 
particularly from ethnic or racial groups or geographic regions (e.g., 
rural), were the target of assistance or services (see Section 
125(c)(7) and Section 105(1)(C)). Under paragraphs (b)(1)-(12), each 
report must contain information about the progress made by the Council 
in achieving its goals. In new section 1386.32(c) each State Council on 
Developmental Disabilities must include in its Annual Program 
Performance Report information on its achievement of the measures of 
progress established pursuant to section 1385.5.
    Section 1386.33, Protection of employee's interests, is revised to 
update statutory cites and to provide clarity.
    Section 1386.34, Designated State Agency, is revised to update 
statutory cites and technical changes are made to provide clarity.
    Section 1386.35, Allowable and non-allowable costs for Federal 
Assistance to State Councils on Developmental Disabilities, is proposed 
to be revised to update statutory cites with technical changes to 
provide clarity.
    Section 1386.36, Final disapproval of the State plan or plan 
amendments, is revised to update statutory cites, remove references to 
the HHS Regional Offices, and contains slight editorial changes.
    Subpart E--Practice and Procedure for Hearings Pertaining to 
State's Conformity and Compliance with Developmental Disabilities State 
Plans, Reports and Federal Requirements, formerly subpart D, is being 
revised to make technical changes and is republished in full.
    Specifically under the General section, in section 1386.80 
Definitions, we are proposing to add the terms Act and Department. In 
section 1386.81, Scope of rules, we have updated the legal cites. No 
changes are proposed to section 1386.82-1386.85 but these sections are 
republished for the ease of public comment. Under the section on 
Preliminary Matters--Notice and Parties, section 1386.90 is proposed to 
be revised to update references to the State Councils on Developmental 
Disabilities. Section 1386.91-1386.94 are proposed to be republished 
unchanged. Under Hearing Procedures, sections 1386.100-1386.109 are 
republished with technical edits made to sections 101 and 106. Finally 
under the section on Post-hearing Procedures and Decisions, no change 
is proposed to section 1386.110 but it is being republished for the 
ease of public comments and sections 1386.111-1386.112 have been 
revised to update legal cites.

PART 1387--PROJECTS OF NATIONAL SIGNIFICANCE

    In Sec.  1387.1 General Requirements ADD is proposing to revise 
paragraph (a) to indicate that all projects funded under this part must 
be of national significance and serve or relate to individuals with 
developmental disabilities to comply with section 161 of the Act as 
well as section 162 of the Act. We are proposing to remove the current 
regulatory language of paragraph (b) as the requirement for the 
Secretary to publish the proposed priorities for PNS funding in the 
Federal Register for

[[Page 19719]]

public comments is no longer required under the Act. Current regulatory 
language of paragraph (c) will now become paragraph (b), indicating 
that the requirements concerning format and content of the application, 
submittal procedures, eligible applicants, and final priority areas 
will be published in program announcements in the Federal Register. 
Current regulatory language of paragraph (d), with minor edits, will 
now become paragraph (c), indicating that in general, Projects of 
National Significance provide technical assistance, collect data, 
demonstrate exemplary and innovative models, disseminate knowledge at 
the local and national levels, and otherwise meet the goals of Part E 
of the Act, 42 U.S.C. 15081.
    As the DD Act provided several new types of activities allowable 
under Projects of National Significance we are proposing in paragraph 
(d) to indicate that Projects of National Significance may engage in 
one or more of the types of activities provided in Section 161(2) of 
the statute.
    As provided under new paragraph (e), funding for projects are to be 
awarded to public and private non-profit entities for wide 
applicability and impact. A request for proposal process shall solicit 
applications from non-profits, institutions of higher learning, State 
and local governments, and Tribal governments for PNS funding.
    As provided under new paragraph (f), faith-based organizations are 
eligible to apply for PNS funding, providing that the faith-based 
organization meets the specific eligibility criteria contained in the 
Program Announcement for a given Fiscal Year.
    Program Announcements, requesting proposals, are published in the 
Federal Register and posted on ADD's Web site at http://www.acf.dhhs.gov/programs/add. A panel of experts shall review and 
score each eligible application, received by the submission deadline, 
based on the evaluation criteria in the Program Announcement. Final 
funding decisions are made by the ADD Commissioner.

PART 1388--NATIONAL NETWORK OF UNIVERSITY CENTERS FOR EXCELLENCE IN 
DEVELOPMENTAL DISABILITIES EDUCATION, RESEARCH, AND SERVICE (UCEDDS)

    The Notice of Proposed Rulemaking for the UCEDDs includes a number 
of changes to part 1388. The DD Act of 2000 included a significant 
restructuring of subtitle D--National Network of University Centers for 
Excellence in Developmental Disabilities Education, Research, and 
Service. These changes have led to a proposed reorganization of the 
regulation.
    First, section 1388.1, Definitions, has been changed to Purpose. 
Several of the terms under the proposed rule appear in proposed Sec.  
1385.3 of the regulation and other terms were removed from the DD Act 
of 2000 and therefore are no longer needed in the regulation. In the 
case of the term ``Mandated Core Functions'', these are now more 
clearly defined under section 1388.2. In addition, ``Research and 
Evaluation'' is included as a Core Function separate from dissemination 
of information. Both are included and described in Sec.  1388.2 of the 
proposed regulation. Section 1388.1 Purpose, as proposed provides 
information about the Centers, including their intended functions.
    Sections 1388.2-1388.7 of the current regulation provides 
information about `Program Criteria' for the UCEDDs in the following 
areas: Purpose, Mission, Governance and Administration, Preparation of 
Personnel, Services and Supports, Dissemination, and Peer Review. The 
DD Act of 2000 deleted the provisions specifically associated with the 
`Program Criteria' and the proposed changes to the regulation are 
necessary to make it consistent with the DD Act of 2000.
    The title of section 1388.2 has been changed to Core Functions. The 
DD Act of 2000 now refers to Core Functions of Centers. This section 
proposes to provide information about Core Functions, including the 
provision of interdisciplinary pre-service preparation and continuing 
education of students and fellows, provision of community services, the 
carrying out of research, and dissemination of information.
    The title of section 1388.3 has been changed to National Training 
Initiatives on Critical and Emerging Needs. Centers have discretion in 
selecting the activities they will pursue within the broad definition 
of their purpose in the statute and therefore the current regulation 
which defines the mission of the Centers as a group is not needed. ADD 
proposes that revised section 1388.3 contain information about the 
National Training Initiatives on Critical and Emerging Needs, which 
replaces the Training Initiative Projects (TIPs) that appear in the 
current regulation. Under this section, supplemental grant funds for 
National Training Initiatives on Critical and Emerging Needs will be 
reserved when each Center funded has received a grant award of at least 
$500,000, adjusted for inflation. The critical and emerging needs 
grants are to pay the Federal share of the cost of training initiatives 
and will be awarded on a competitive basis for periods of not longer 
than 5 years.
    The title of section 1388.4 Program Criteria--Governance and 
Administration, has been changed to Applications and provides 
information about a Center's eligibility for grant awards through 
applications as well as required application contents such as the five-
year plan describing the projected goal(s) related to one or more areas 
of emphasis for each of the core functions; a number of assurances, 
including how the Center will address the projected goals, carry out 
goal-related activities, collaborate with the consumer advisory 
committee comprised of a cross-section of stakeholders (e.g., 
individuals with developmental disabilities and related disabilities, 
family members of individuals with developmental disabilities, a 
representative of the State Protection and Advocacy System, a 
representative of a self-advocacy organization, and representatives of 
other relevant organizations), strategies for leveraging additional 
public and private funds, director qualifications, and plans for 
information dissemination. The applications section also includes 
reference to the measures of progress, which now represent the 
regulatory standards for the Centers. The program criteria of the 
current regulation had been the basis for such standards. In addition, 
the Applications section proposes to include information about the peer 
review process, including the composition of the peer review groups. 
Finally, information about the Federal Share under the proposed rule is 
provided in the Applications section of the regulation. For the purpose 
of determining the Federal share with respect to the project, 
expenditures on that project by a political subdivision of a State or 
by a public or private entity shall be subject to the provisions of 45 
CFR part 93--New Restrictions on Lobbying (see section 1385.9 Grants 
administration) and must be considered as an expenditure of the Center 
under subtitle D.
    Section 1388.5 of the proposed rule has been revised to address the 
five-year plan and annual report. Provisions on `Program Criteria--
Preparation of Personnel' are no longer needed in this section because 
of changes in the DD Act of 2000 and changes made in other sections of 
this proposed rule. Under the proposal, section 1388.5 addresses the 
five-year plan and annual report and includes requirements for Centers 
to report on their progress. The Annual Report must be submitted by 
July 31st of each year and include information on the progress made in 
achieving the

[[Page 19720]]

projected goals, proposed revisions to the goals, and a description of 
successful efforts to leverage funds. The timeframe for the Annual 
Report is tied to the UCEDDs fiscal and reporting cycle. The five-year 
plan must be amended to reflect changes made to the measures of 
progress established for any year.
    We propose to delete the remaining paragraphs in section 1388 to 
reflect the DD Act of 2000 and changes made elsewhere in the proposed 
rule.

Amended Proposed Regulations, 45 CFR Parts 1385, 1386, 1387, and 1388

    The Administration on Developmental Disabilities presents 45 CFR 
parts 1385, 1386, 1387, and 1388 as an amended whole in response to 
numerous requests by direct consumers, family members of individuals 
with developmental disabilities, members of advocacy organizations, and 
the Developmental Disabilities Network. Reprinting the regulation in 
its entirety to include the proposed new regulations and the current 
regulation will assist these individuals in responding to the proposed 
rule, especially the proposed measures of progress.

Impact Analysis

Executive Order 12866

    Executive Order 12866 requires that regulations be drafted to 
ensure that they are consistent with the priorities and principles set 
forth in Executive Order 12866. The Department has determined that this 
proposed rule is consistent with these priorities and principles.
    Executive Order 12866 encourages agencies, as appropriate, to 
provide the public with meaningful participation in the regulatory 
process. The proposed rule seeks to implement the Developmental 
Disabilities Act of 2000 and especially provisions of the Act 
addressing program accountability and indicators of progress. In 
developing this regulation, we considered input we received from the 
developmental disabilities community, especially in relation to our 
extensive discussion on the issue of performance outcomes with the 
grantees of the ADD network (State Councils on Developmental 
Disabilities, P&As, UCEDDs, and the national organizations that 
represent them: The National Association of Developmental Disability 
Councils (NADDC), the National Association of Protection and Advocacy 
Systems (NAPAS), and the Association of University Centers on 
Disabilities (AUCD). In addition, we are providing a 60 day public 
comment period.

Regulatory Flexibility Analysis

    The Secretary certifies under 5 U.S.C. 605(b), the Regulatory 
Flexibility Act (Pub. L. 96-354), that this regulation will not have a 
significant economic impact on a substantial number of small entities. 
The primary impact of this regulation is on State Councils on 
Developmental Disabilities, State Protection and Advocacy Systems, and 
UCEDDs. P&As are administered by small nonprofits. This regulation will 
support the work of the P&As by providing guidance regarding access to 
service providers and records of individuals in order to investigate 
potential abuse and neglect. Service providers will be impacted if a 
complaint is made against them. Similarly, this regulation will support 
the work of UCEDDs by providing guidance on the administration of the 
program, especially the measures of progress, which now represent the 
regulatory standards for the UCEDDs. The regulation does not have a 
significant economic impact on these entities. We estimate an average 
impact of $300 per grantee, resulting in a total cost across the DD 
network of less than $100,000.
    This rule is considered a ``significant regulatory action'' as it 
relates to service providers and the P&As. If a complaint is made 
against a service provider and the P&A investigates potential abuse and 
neglect, it may result in adversely affecting those service providers 
in a material way, (section 3(f)(1) of Executive Order 12866). 
Therefore, this proposed regulation has been reviewed by the Office of 
Management and Budget.

Paperwork Reduction Act of 1995

    Sections 1386.22, 1386.32, and 1388.5 contain information 
collection requirements. In Section 1386 of the NPRM, the State Council 
on Developmental Disabilities Program Performance Report and the 
Protection and Advocacy Statement of Goals and Priorities required 
reinstatement from OMB. Further changes to these reports will be 
required once the indicators of progress are established through final 
regulations. For the Protection and Advocacy Program Performance Report 
in Section 1386 of the NPRM, the OMB Standard Form--PPR will be used.
    Recordkeeping and reporting requirements for the UCEDDs (Part 1388) 
include the submission of an approved grant application (section 
154(a)(2) of the Act (42 U.S.C. 15064)) and a new annual report 
(section 154(e)). The application for core funding uses OMB Standard 
Form 424--Application for Federal Assistance and Budget Information. 
The annual report will require a new reporting format that will address 
the satisfaction of individuals with developmental disabilities with 
advocacy, capacity building, and systemic change activities; the extent 
to which the advocacy, capacity building, and systemic change 
activities provided results through improvements; and the extent to 
which collaboration was achieved in the areas of advocacy, capacity 
building and systemic change activities.

                   Reporting and Recordkeeping Requirements In Part 1386 and 1388 of the NPRM
----------------------------------------------------------------------------------------------------------------
                                                                                  Average burden
                                                       Expires    Annual  number     response      Annual burden
                                                                  of respondents      (hours)          hours
----------------------------------------------------------------------------------------------------------------
1386.22(a) SF-PPR.....................    0970-0334   06/30/2009              57              44           2,508
1386.22(c) P&A SGP Reinstatement......    0980-0270   11/30/2009              57              44           2,508
1386.30(c) Council State Plan.........    0980-0162   05/31/2009              55              80           4,400
1386.32(b) Council PPR Reinstatement..    0980-0172   02/28/2009              55              44           2,420
1386 32(a) Council Financial Status
 Report (ADD-02B):
    ADD-02 Council....................    0980-0212   05/31/2009              55               8             440
    1388.5(b) UCEDD Annual Report.....    0970-0289   08/31/2008              67             200          13,400
----------------------------------------------------------------------------------------------------------------

    The Administration for Developmental Disabilities will consider 
comments by the public on these collections of information in the 
following areas:

[[Page 19721]]

    (a) Evaluating whether the proposed collection(s) is (are) 
necessary for the proper performance of the functions of ADD, including 
whether the information will have practical utility;
    (b) Evaluating the accuracy of the ADD's estimate of the burden of 
the proposed collection(s) of information, including the validity of 
the methodology and assumptions used;
    (c) Enhancing the quality, usefulness and clarity of the 
information to be collected; and
    (d) Minimizing the burden of the collection of information on those 
who are to respond, including through the use of appropriate automated, 
electronic, mechanical, or other technology, e.g., permitting 
electronic submission of responses.
    OMB is required to make a decision concerning the collection(s) of 
information contained in these proposed regulations between 30 and 60 
days after publication of this document in the Federal Register. 
Therefore, a comment is best assured of having its full effect if OMB 
receives it within 30 days of publication. This does not affect the 
deadline for the public to comment to the Department on the NPRM. 
Written comments to OMB for the proposed information collection should 
be sent directly to OMB either by FAX to 202-395-6974 or by e-mail to 
[email protected], attn: desk officer for the Administration 
for Children and Families.

Unfunded Mandates Reform Act

    Section 202 of the Unfunded Mandates Reform Act of 1995 (Unfunded 
Mandates Act) requires that a covered agency prepare a budgetary impact 
statement before promulgating a rule that includes any Federal mandate 
that may result in expenditures by State, local and Tribal governments, 
in the aggregate, or by the private sector, of $100 million, adjusted 
for inflation, or more in any one year.
    If a covered agency must prepare a budgetary impact statement, 
section 205 further requires that it select the most cost-effective and 
least burdensome alternatives that achieves the objectives of the rule 
and consistent with the statutory requirements. In addition, section 
203 requires a plan for informing and advising any small government 
that may be significantly or uniquely impacted by a proposed rule.
    We have determined that this rule does not result in the 
expenditure by State, local, and Tribal government in the aggregate, or 
by the private sector of more than $100 million in any one year.

Congressional Review

    This rule is not a major rule as defined in 5 U.S.C.Sec.  804(2).

Assessment of Federal Regulations and Policies on Families

    Section 654 of the Treasury and General Government Appropriations 
Act of 1999 requires Federal agencies to determine whether a policy or 
regulation may affect family well being. If the agency's conclusion is 
affirmative, then the agency must prepare an impact assessment 
addressing seven criteria specified in the law. These regulations do 
not have an impact on family well being as defined in the legislation.

Executive Order 13132

    Executive Order 13132 on ``federalism'' was signed August 4, 1999. 
The purposes of the Order are: ``. . . to guarantee the division of 
governmental responsibilities between the national government and the 
States that was intended by the Framers of the Constitution, to ensure 
that the principles of federalism established by the Framers guide the 
executive departments and agencies in the formulation and 
implementation of policies, and to further the policies of the Unfunded 
Mandates Reform Act. . . .''
    The Department certifies that this rule does not have a substantial 
direct effect on States, on the relationship between the Federal 
government and the States, or on the distribution of power and 
responsibilities among the various levels of government.
    ADD is not aware of any specific State laws that would be preempted 
by the adoption of the regulation in subpart C of 45 CFR part 1386. ADD 
would welcome comments from any State whose laws would be in conflict 
with the requirements of the proposed regulation or whose laws require 
modification to establish compliance with requirements of the proposed 
regulation, States should alert ADD in their comments of the specific 
provisions of the NPRM that would require delay in the effective dates 
in order to bring State laws into conformance. ADD will consider 
delaying the effective date of some provisions in the final regulation 
if States must modify legislation or enact new legislation to bring 
their laws into conformance with the new regulation. The rule does not 
impose unfunded mandates.
    This proposed rule does contain regulatory policies with federalism 
implications that require specific consultation with State or local 
elected officials. For example, compliance with the indicators of 
progress is mandatory for State programs. However, prior to the 
development of the rule, the Administration on Developmental 
Disabilities consulted with State Developmental Disabilities Councils, 
P&As, and UCEDDs to minimize any substantial direct effect on them and 
indirectly on States.

List of Subjects

45 CFR Part 1385

    Disabled, Grant programs/education, Grant programs/social programs, 
Reporting and recordkeeping requirements.

45 CFR Part 1386

    Disabled, Administrative practice and procedures, Grant programs--
education, Grant programs--social programs, Reporting and recordkeeping 
requirements.

45 CFR Part 1387

    Administrative practice and procedure, Grant programs--education, 
Grant programs--social programs, Individuals with disabilities.

45 CFR Part 1388

    Colleges and Universities, Grant programs/education, Grant 
programs/social programs/University Centers for Excellence in 
Developmental Disabilities Education, Research and Services.

(Catalog of Federal Domestic Assistance Program, Nos. 93.630 
Developmental Disabilities Basic Support and 93.632 Developmental 
Disabilities--University Centers for Excellence)

    Dated: November 20, 2007.
Daniel C. Schneider,
Acting Assistant Secretary for Children and Families.

    Approved: November 26, 2007.
Michael O. Leavitt,
Secretary, Department of Health and Human Services.

    Editorial Note: This document was received at the Office of the 
Federal Register on April 3, 2008.

    For reasons set forth in the preamble, The Department of Health and 
Human Services proposes to amend subchapter I, chapter XIII, of title 
45 of the Code of Federal Regulations as set forth below.
    1. Revise part 1385 to read as follows:

PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL 
DISABILITIES PROGRAM

Section Contents

Sec.

[[Page 19722]]

1385.1 General.
1385.2 Purpose of the regulations.
1385.3 Definitions.
1385.4 Rights of individuals with developmental disabilities.
1385.5 Program accountability and indicators of progress.
1385.6 Employment of individuals with disabilities.
1385.7 Reports to the Secretary.
1385.8 Formula for determining allotments.
1385.9 Grants administration requirements.

    Authority: 42 U.S.C. 15001 et seq.


Sec.  1385.1  General.

    Except as specified in Sec. Sec.  1385.4 and 1385.5, the 
requirements in this part are applicable to the following programs and 
projects:
    (a) Federal Assistance to State Councils on Developmental 
Disabilities;
    (b) Protection and Advocacy of Individual Rights;
    (c) Projects of National Significance; and
    (d) National Network of University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service.


Sec.  1385.2  Purpose of the regulations.

    These regulations implement the Developmental Disabilities 
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).


Sec.  1385.3  Definitions.

    The following definitions apply:
    ACF. The term ``ACF'' means the Administration for Children and 
Families within the Department of Health and Human Services.
    Act. The term ``Act'' means the Developmental Disabilities 
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).
    Accessibility. The term ``Accessibility'' means that programs 
funded under the DD Act of 2000 and facilities which are used in those 
programs meet applicable requirements of 45 CFR part 84 and the 
Americans with Disabilities Act of 1990.
    ADD. ``ADD'' means the Administration on Developmental 
Disabilities, within the Administration for Children and Families.
    ADD Network. ``ADD Network'' means the State Councils on 
Developmental Disabilities, the Protection and Advocacy System, and the 
University Centers for Excellence in Developmental Disabilities 
Education, Research, and Service.
    Advocacy activities. The term ``Advocacy activities'' means active 
support of policies and practices that promote self-determination and 
inclusion in the community and workforce for individuals with 
developmental disabilities and their families.
    Areas of emphasis. The term ``areas of emphasis'' means the areas 
related to quality assurance activities, education activities and early 
intervention activities, child care-related activities, health-related 
activities, employment-related activities, housing-related activities, 
transportation-related activities, recreation-related activities, and 
other services available or offered to individuals in a community, 
including formal and informal community supports that affect their 
quality of life.
    Assistive technology device. The term ``assistive technology 
device'' means any item, piece of equipment, or product system, whether 
acquired commercially, modified or customized, that is used to 
maintain, increase amount of or improve quality of the functional 
capabilities of individuals with developmental disabilities.
    Assistive technology service. The term ``assistive technology 
service'' means any service that directly assists an individual with a 
developmental disability in the selection, acquisition, or use of an 
assistive technology device. Such term includes: conducting an 
evaluation of the needs of an individual with a developmental 
disability, including a functional evaluation of the individual in the 
individual's environment; purchasing, leasing, or otherwise providing 
for the acquisition of an assistive technology device by an individual 
with a developmental disability; selecting, designing, fitting, 
customizing, adapting, applying, maintaining, repairing or replacing an 
assistive technology device; coordinating and using another therapy, 
intervention, or service with an assistive technology device, such as a 
therapy, intervention, or service associated with an education or 
rehabilitation plan or program; providing training or technical 
assistance for an individual with a developmental disability, or, where 
appropriate, a family member, guardian, advocate, or authorized 
representative of an individual with a developmental disability; and 
providing training or technical assistance for professionals (including 
individuals providing education and rehabilitation services), 
employers, or other individuals who provide services to, serve, employ, 
or are otherwise substantially involved in the major life functions of 
an individual with developmental disabilities.
    Capacity building activities. The term ``capacity building 
activities'' means a system for sustaining and expanding the successful 
delivery of services, support and other assistance to individuals with 
developmental disabilities and their families.
    Center. The term ``Center'' means a University Center for 
Excellence in Developmental Disabilities Education, Research, and 
Service (UCEDD) established under subtitle D of the DD Act of 2000.
    Child care-related activities. The term ``child care-related 
activities'' means advocacy, capacity building, and systemic change 
activities that result in families of children with developmental 
disabilities having access to and use of child care services, including 
before-school, after-school, and out-of-school services, in their 
communities.
    Collaboration. The term ``collaboration'' means the use of 
interagency agreements and similar mechanisms by agencies under the Act 
(State Developmental Disabilities Councils, the Protection and Advocacy 
agencies and the University Centers for Excellence in Developmental 
Disabilities Education Research, and Service). These agencies may work 
among themselves and with private individuals, groups, and 
organizations and State and local government agencies to foster 
cooperation in achieving the purposes of the Act.
    Commissioner. The term ``Commissioner'' means the Commissioner of 
the Administration on Developmental Disabilities, Administration for 
Children and Families, Department of Health and Human Services, or his 
or her designee.
    Culturally competent. The term ``culturally competent,'' means that 
services, supports, or other assistance that are conducted or provided 
in a manner that is responsive to the beliefs, interpersonal styles, 
attitudes, language, and behaviors of individuals who are receiving the 
services, supports or other assistance, and in a manner that has the 
greatest likelihood of ensuring their maximum participation in the 
program involved.
    Department. The term ``Department'' means the U.S. Department of 
Health and Human Services.
    Developmental disability. The term ``developmental disability,'' as 
determined on a case by case basis, means a severe, chronic disability 
of an individual that--
    (1) Is attributable to a mental or physical impairment or 
combination of mental and physical impairments;
    (2) Is manifested before the individual attains age 22;
    (3) Is likely to continue indefinitely;
    (4) Results in substantial functional limitations in three or more 
of the following areas of major life activity--
    (i) Self-care;

[[Page 19723]]

    (ii) Receptive and expressive language;
    (iii) Learning;
    (iv) Mobility;
    (v) Self-direction;
    (vi) Capacity for independent living; and
    (vii) Economic self-sufficiency.
    (5) Reflects the individual's need for a combination and sequence 
of special, interdisciplinary or generic services, individualized 
supports, or other forms of assistance that are of lifelong or extended 
duration and are individually planned and coordinated.
    (6) An individual from birth to age nine, inclusive, who has a 
substantial developmental delay or specific congenital or acquired 
condition, may be considered to have a developmental disability without 
meeting three or more of the criteria described in (A)(1) through (5), 
if the individual, without services and supports, has a high 
probability of meeting those criteria later in life.
    Early intervention activities. The term ``early intervention 
activities'' means advocacy, capacity building, and systemic change 
activities provided to infants and young children described in the 
definition of ``developmental disability'' and their families to 
enhance the development of the individuals to maximize their potential, 
and the capacity of families to meet the special needs of the 
individuals.
    Education activities. The term ``education activities'' means 
advocacy, capacity building, and systemic change activities that result 
in individuals with developmental disabilities being able to access 
appropriate supports and modifications when necessary, to maximize 
their educational potential, to benefit from lifelong educational 
activities, and to be integrated and included in all facets of student 
life.
    Employment-related activities. The term ``employment-related 
activities'' means advocacy, capacity building, and systemic change 
activities that result in individuals with developmental disabilities 
acquiring, retaining, or advancing in paid employment, including 
supported employment or self-employment, in integrated settings in a 
community.
    Family support services. The term ``family support services'' means 
services, supports, and other assistance, provided to families with a 
member or members who have developmental disabilities, that are 
designed to: strengthen the family's role as primary caregiver; prevent 
inappropriate out-of-the-home placement of the members and maintain 
family unity; and reunite, whenever possible, families with members who 
have been placed out of the home. This term includes respite care, 
provision of rehabilitation technology and assistive technology, 
personal assistance services, parent training and counseling, support 
for families headed by aging caregivers, vehicular and home 
modifications, and assistance with extraordinary expenses associated 
with the needs of individuals with developmental disabilities.
    Fiscal year. The term ``fiscal year'' means the Federal fiscal year 
unless otherwise specified.
    Governor. The term ``Governor'' means the chief executive officer 
of a State, as that term is defined in the Act, or his or her designee 
who has been formally designated to act for the Governor in carrying 
out the requirements of the Act and the regulations.
    Health-related activities. The term ``health-related activities'' 
means advocacy, capacity building, and systemic change activities that 
result in individuals with developmental disabilities having access to 
and use of coordinated health, dental, mental health, and other human 
and social services, including prevention activities, in their 
communities.
    Housing-related activities. The term ``housing-related activities'' 
means advocacy, capacity building, and systemic change activities that 
result in individuals with developmental disabilities having access to 
and use of housing and housing supports and services in their 
communities, including assistance related to renting, owning, or 
modifying an apartment or home.
    Inclusion. The term ``inclusion,'' means the acceptance and 
encouragement of the presence and participation of individuals with 
developmental disabilities by individuals without disabilities in 
social, educational, work, and community activities that enable 
individuals with developmental disabilities to have friendships and 
relationships with individuals of their own choice; live in homes close 
to community resources with regular contact with individuals without 
disabilities in their communities; enjoy full access and active 
participation in the same community activities and types of employment 
as individuals without disabilities; and take full advantage of their 
integration into the same community as individuals without 
disabilities, living, learning, working, and enjoying life in regular 
contact with individuals without disabilities.
    Indicators of progress. The term ``indicators of progress'' means 
the grantee's compliance with its own self-selected, ADD approved, 
measures of progress.
    Individualized supports. The term ``individualized supports'' means 
supports that: Enable an individual with a developmental disability to 
exercise self-determination, be independent, be productive, and be 
integrated and included in all facets of community life; designed to 
enable such individual to control such individual's environment, 
permitting the most independent life possible; and prevent placement 
into a more restrictive living arrangement than is necessary and enable 
such individual to live, learn, work, and enjoy life in the community; 
and include early intervention services, respite care, personal 
assistance services, family support services, supported employment 
services support services for families headed by aging caregivers of 
individuals with developmental disabilities, and provision of 
rehabilitation technology and assistive technology, and assistive 
technology services.
    Integration. The term ``integration,'' means exercising the equal 
rights of individuals with developmental disabilities to access and use 
the same community resources as are used by and available to other 
individuals.
    Measures of progress. The term ``measures of progress'' means the 
grantee's standards of performance that they have developed pursuant to 
section 1385.5.
    Not-for-profit. The term ``not-for-profit,'' used with respect to 
an agency, institution or organization, means an agency, institution, 
or organization that is owned or operated by one or more corporations 
or associations, no part of the net earnings of which inures, or may 
lawfully inure, to the benefit of any private shareholder or 
individual.
    Personal assistance services. The term ``personal assistance 
services'' means a range of services provided by one or more 
individuals designed to assist an individual with a disability to 
perform daily activities, including activities on or off a job that 
such individual would typically perform if such individual did not have 
a disability. Such services shall be designed to increase such 
individual's control in life and ability to perform everyday 
activities, including activities on or off a job.
    Prevention activities. The term ``prevention activities'' means 
activities that address the causes of developmental disabilities and 
the exacerbation of functional limitation, such as activities that: 
Eliminate or reduce the factors that cause or predispose individuals to 
developmental disabilities or that

[[Page 19724]]

increase the prevalence of developmental disabilities; increase the 
early identification of problems to eliminate circumstances that create 
or increase functional limitations; and mitigate against the effects of 
developmental disabilities throughout the lifespan of an individual.
    Productivity. The term ``productivity'' means engagement in income-
producing work that is measured by increased income, improved 
employment status, or job advancement, or engagement in work that 
contributes to a household or community.
    Protection and Advocacy Agency. The term ``Protection and Advocacy 
Agency'' means the organization or agency designated in a State to 
administer and operate a protection and advocacy (P&A) system for 
individuals with developmental disabilities. A P&A system is authorized 
to investigate incidents of abuse and neglect regarding persons with 
developmental disabilities and the rights of such individuals. The P&A 
may provide information and referral to programs and services 
addressing the needs of such individuals. The Protection and Advocacy 
agency also shall provide advocacy services under other Federal 
programs and undertake the other activities authorized therein, except 
when participation in such program is inconsistent with its duties 
under the Act.
    Quality assurance activities. The term ``quality assurance 
activities'' means advocacy, capacity building, and systemic change 
activities that result in improved consumer and family-centered quality 
assurance and that result in systems of quality assurance and consumer 
protection that include monitoring of services, supports, and 
assistance provided to an individual with developmental disabilities 
that ensures that the individual will not experience abuse, neglect, 
sexual or financial exploitation, or violation of legal or human 
rights; and will not be subject to the inappropriate use of restraints 
or seclusion; include training in leadership, self-advocacy, and self-
determination for individuals with developmental disabilities, their 
families, and their guardians to ensure that those individuals will not 
experience abuse, neglect, sexual or financial exploitation, or 
violation of legal or human rights; and will not be subject to the 
inappropriate use of restraints or seclusion; or include activities 
related to interagency coordination and systems integration that result 
in improved and enhanced services, supports, and other assistance that 
contribute to and protect the self-determination, independence, 
productivity, and integration and inclusion in all facets of community 
life of individuals with developmental disabilities.
    Recreation-related activities. The term ``recreation-related 
activities'' means advocacy, capacity building, and systemic change 
activities that result in individuals with developmental disabilities 
having access to and use of recreational, leisure, and social 
activities, in their communities.
    Rehabilitation technology. The term ``rehabilitation technology'' 
means the systematic application of technologies, engineering 
methodologies, or scientific principles to meet the needs of, and 
address the barriers confronted by individuals with developmental 
disabilities in areas that include education, rehabilitation, 
employment, transportation, independent living, and recreation. Such 
terms include rehabilitation engineering, and the provision of 
assistive technology devices and assistive technology services.
    Required planning documents. The term ``required planning 
documents'' means the State plans required by Sec.  1386.30 of this 
part for the State Council on Developmental Disabilities; the Annual 
Statement of Goals and Priorities required by Sec.  1386.22(c) for 
P&As and the Five-Year plan required by Sec.  1388.5(a)(4) for UCEDDs.
    Secretary. The term ``Secretary'' means the Secretary of Health and 
Human Services.
    Self-determination activities. The term ``self-determination 
activities'' means activities that result in individuals with 
developmental disabilities, with appropriate assistance, having the 
ability and opportunity to communicate and make personal decisions; the 
ability and opportunity to communicate choices and exercise control 
over the type and intensity of services, supports, and other assistance 
the individuals receive; the authority to control resources to obtain 
needed services, supports, and other assistance; opportunities to 
participate in, and contribute to, their communities; and support, 
including financial support, to advocate for themselves and others to 
develop leadership skills through training in self-advocacy to 
participate in coalitions, to educate policymakers, and to play a role 
in the development of public policies that affect individuals with 
developmental disabilities.
    State. The term ``State'', includes, in addition to each of the 
several States of the United States, the District of Columbia, the 
Commonwealth of Puerto Rico, the United States Virgin Islands, Guam, 
American Samoa, and the Commonwealth of the Northern Mariana Islands.
    State Council on Developmental Disabilities. The term ``State 
Council on Developmental Disabilities'' means a Council established 
under Section 125 of the DD Act.
    Supported employment services. The term ``supported employment 
services'' means services that enable individuals with developmental 
disabilities to perform competitive work in integrated work settings or 
work for individuals for whom competitive employment has been 
interrupted or intermittent as a result of significant disabilities, 
and who, because of the nature and severity of their disabilities, need 
intensive supported employment services or extended services in order 
to perform such work.
    Systemic change activities. The term ``systemic change activities'' 
means a sustainable, transferable and replicable change in some aspect 
of service or support availability, design or delivery that promotes 
positive or meaningful outcomes for individuals with developmental 
disabilities and their families.
    Transportation-related activities. The term ``transportation-
related activities'' means advocacy, capacity building, and systemic 
change activities that result in individuals with developmental 
disabilities having access to and use of transportation.
    UCEDDs. The term ``UCEDD'' means University Centers for Excellence 
in Developmental Disabilities Education, Research, and Service, also 
known by the term ``Center'' under Section 102(5) of the Act.
    Unserved and underserved. The term ``unserved and underserved'' 
includes populations such as individuals from racial and ethnic 
minority backgrounds, disadvantaged individuals, individuals with 
limited English proficiency, individuals from underserved geographic 
areas (rural or urban) and specific groups of individuals within the 
population of individuals with developmental disabilities, including 
individuals who require assistive technology in order to participate in 
community life.


Sec.  1385.4  Rights of individuals with developmental disabilities.

    (a) Section 109 of the Act, Rights of Individuals with 
Developmental Disabilities (42 U.S.C. 15009), is applicable to the 
State Councils on Developmental Disabilities.
    (b) In order to comply with Section 124(c)(5)(H) of the Act (42 
U.S.C. 15024(c)(5)(H)), regarding the rights of

[[Page 19725]]

individuals with developmental disabilities, the State participating in 
the Developmental Disabilities Council program must meet the 
requirements of 45 CFR 1386.30(f)(2).
    (c) Applications from UCEDDs also must contain an assurance that 
the human rights of individuals assisted by this program will be 
protected consistent with Section 101(c) (see Section 154(a)(3)(D) of 
the Act).


Sec.  1385.5  Program accountability and indicators of progress.

    (a) Program Accountability Process. (1) The required planning 
document and updates must classify under one or more areas of emphasis 
(as defined in section 1385.3 of this part) each of the goals related 
to advocacy, capacity building, and systemic change activities the 
State Council on Developmental Disabilities, P&A, or UCEDD will be 
pursuing during each of the years covered by the document. For UCEDDs, 
goal activities also must be classified in terms of mandated core 
functions.
    (2) State Councils on Developmental Disabilities, P&As and UCEDDs 
must state in the required planning document the measures of progress 
to measure consumer satisfaction, collaboration, or improvement for 
each established goal under each selected area of emphasis during any 
year covered by the planning document. The measures of progress 
developed by State Councils, P&As, and UCEDDs must be able to, over 
time, demonstrate whether the grantee has achieved progress in meeting 
the goals of the Act through its advocacy, capacity building, and 
systemic change activities.
    (3) Measures of progress included in the required planning 
document, or in revisions to such document, shall meet the requirements 
under this part. In the event that one or more of the measures of 
progress included in the required planning document, or an amendment to 
the document, do not meet the requirements under this part, the 
Commissioner shall decline to accept the planning document, or the 
revision to such document, submitted by the grantee.
    (4) Each State Council on Developmental Disabilities pursuant to 
section 1386.32(b), P&A pursuant to Sec.  1386.22(a), and UCEDD 
pursuant to Sec.  1388.5(a)(4) must report the results of the measures 
of progress measuring consumer satisfaction, collaboration, or 
improvement for each area of emphasis under which a goal has been 
established for the year on which it is reporting. The report must 
include information necessary for the Secretary to comply with the Act 
and other information required by the applicable regulation.
    (b) Measures of Progress. For each of the areas of emphasis under 
which a grantee has established a goal(s), it shall meet approved 
annual measures for successful achievement of progress.
    (c) Indicators of Progress. For each of the areas of emphasis under 
which a State Council on Developmental Disabilities, a P&A, or a UCEDD 
has classified activities, the indicators of progress shall be the 
achievement of the measures of progress they have established pursuant 
to this section for the year on which it is reporting. Each State 
Council on Developmental Disabilities, P&A, and UCEDD is required to 
meet the indicators of progress for each of the areas of emphasis in 
which it has classified activities for the year on which it is 
reporting.
    (d) Measures of Consumer Satisfaction. Each State Council on 
Developmental Disabilities, P&A, and UCEDD must:
    (1) establish criteria in its planning document, or any revision, 
on the level of consumer satisfaction to be attained for each area of 
emphasis for which goals are identified, and
    (2) track consumer satisfaction for each area of emphasis for which 
goals are identified through the end of each year. If, for any reason, 
a State Council on Developmental Disabilities, P&A, or UCEDD does not 
fully perform a planned activity related to a goal under an area of 
emphasis, as appropriate, the consumer satisfaction with the activity 
shall be measured by the grantee on the basis of the portion of the 
activity performed.
    (e) Measures of Collaboration. (1) Each State Council on 
Developmental Disabilities, P&A, and UCEDD must identify in its 
planning document, and any revision, the collaborative activities that 
it will implement for each area of emphasis under which it has 
identified one or more goals. Each UCEDD also must identify the 
collaborative activities it will implement with UCEDDs in other States 
which are pursuing similar activities under the same areas of emphasis.
    (2) Collaboration by each State Council on Developmental 
Disabilities, P&A, and UCEDD with other grantees within the State must 
include the following:
    (i) A meeting with the other grantees in the State on the proposed 
collaboration and on the implementation of the agreed upon 
collaborative activities;
    (ii) A Memorandum of Understanding on the collaboration initiative 
agreed upon by each of the other grantees in the State, signed by the 
administering officials of the State Council, P&A, and UCEDD.
    (f) Measures of Improvement. (1) Each State Council on 
Developmental Disabilities, P&A, and UCEDD must establish for each year 
covered by the planning document the measures of improvement it will 
attain in each area of emphasis for which goals have been identified by 
assessing the extent to which grantee activities have enabled 
individuals with developmental disabilities to:
    (i) Make choices and exert control over the type, intensity, and 
timing of services, supports and assistance in the area of emphasis;
    (ii) Participate in the full range of community life associated 
with the area of emphasis with persons of the individual's choice; and
    (iii) Access services, supports and assistance in the area of 
emphasis in a manner that ensures that such individuals are free from 
abuse, neglect, sexual and financial exploitation, violation of legal 
and human rights, and the inappropriate use of restriction and 
seclusion.
    (2) State Councils on Developmental Disabilities, P&As, and UCEDDs 
may adopt additional measures of progress to assess their performance 
during a year.


Sec.  1385.6  Employment of individuals with disabilities.

    Each grantee which receives Federal funding under the Act must meet 
the requirements of Section 107 of the Act (42 U.S.C. 15007) regarding 
affirmative action. The grantee must take affirmative action to employ 
and advance in employment and otherwise treat qualified individuals 
with disabilities without discrimination based upon their physical or 
mental disability in all employment practices such as the following: 
advertising, recruitment, employment, rates of pay or other forms of 
compensation, selection for training, including apprenticeship, 
upgrading, demotion or transfer, and layoff or termination. This 
obligation is in addition to the requirements of 45 CFR part 84, 
subpart B, prohibiting discrimination in employment practices on the 
basis of disability in programs receiving assistance from the 
Department. Recipients of funds under the Act also may be bound by the 
provisions of the Americans with Disabilities Act of 1990 (Pub. L. 101-
336, 42 U.S.C. 12101 et seq.) with respect to employment of individuals 
with disabilities. Failure to comply with Section 107 of the Act may 
result in loss of Federal funds under the

[[Page 19726]]

Act. If a compliance action is taken, the State will be given 
reasonable notice and an opportunity for a hearing as provided in 
subpart E of 45 CFR part 1386.


Sec.  1385.7  Reports of the Secretary.

    All grantee submission of plans, applications and reports must 
label goals, activities and results clearly in terms of the following: 
area of emphasis, type of activity (advocacy, capacity building, 
systemic change), and categories of measures of progress.


Sec.  1385.8  Formula for determining allotments.

    The Commissioner will allocate funds appropriated under the Act for 
the State Councils on Developmental Disabilities and the P&As on the 
following basis:
    (a) Two-thirds of the amount appropriated will be allotted to each 
State according to the ratio the population of each State bears to the 
population of the United States. This ratio is weighted by the relative 
per capita income for each State. The data used to compute allotments 
are supplied by the U.S. Department of Commerce for the three most 
recent consecutive years for which satisfactory data are available.
    (b) One-third of the amount appropriated will be allotted to each 
State on the basis of the relative need for services of persons with 
developmental disabilities. The relative need is determined by the 
number of persons receiving benefits under the Childhood Disabilities 
Beneficiary Program [(Section 202(d)(1)(B)(ii) of the Social Security 
Act), (42 U.S.C. 402(d)(1)(B)(ii)].


Sec.  1385.9  Grants administration requirements.

    (a) The following parts of title 45 CFR apply to grants funded 
under parts 1386 and 1388 of this chapter, and to grants for Projects 
of National Significance under Section 162 of the Act (42 U.S.C. 
15082).
    45 CFR Part 16--Procedures of the Departmental Grant Appeals Board.
    45 CFR Part 46--Protection of Human Subjects.
    45 CFR Part 74--Administration of Grants.
    45 CFR Part 76--Governmentwide Debarment and Suspension 
(Nonprocurement) and Governmentwide Requirements for Drug-Free 
Workplace.
    45 CFR Part 80--Nondiscrimination under Programs Receiving Federal 
Assistance through the Department of Health and Human Services--
Effectuation of title VI of the Civil Rights Act of 1964.
    45 CFR Part 81--Practice and Procedures--Practice and Procedure for 
Hearings Act under Part 80 of this title.
    45 CFR Part 84--Nondiscrimination on the Basis of Handicap in 
Programs and Activities Receiving or Benefiting from Federal Financial 
Assistance.
    45 CFR Part 86--Nondiscrimination on the Basis of Sex in Education 
Programs and Activities Receiving or Benefiting from Federal Financial 
Assistance.
    45 CFR Part 91--Nondiscrimination on the Basis of Age in Programs 
or Activities Receiving Federal Financial Assistance from HHS.
    45 CFR Part 92--Uniform Administrative Requirements for Grants and 
Cooperative Agreements to State and Local Governments.
    45 CFR Part 93--New restrictions on Lobbying.
    (b) The Departmental Appeals Board also has jurisdiction over 
appeals by any grantee that has received grants under the UCEDD 
programs or for Projects of National Significance. The scope of the 
Board's jurisdiction concerning these appeals is described in 45 CFR 
part 16.
    (c) The Departmental Appeals Board also has jurisdiction to decide 
appeals brought by the States concerning any disallowances taken by the 
Commissioner with respect to specific expenditures incurred by the 
States or by contractors or subgrantees of States. This jurisdiction 
relates to funds provided under the two formula programs--subtitle B of 
the Act--Federal Assistance to State Councils on Developmental 
Disabilities, and subtitle C of the Act--Protection and Advocacy of 
Individual Rights. Appeals filed by States shall be decided in 
accordance with 45 CFR part 16.
    (d) In making audits and examination to any books, documents, 
papers, and transcripts of records of State Councils on Developmental 
Disabilities, the UCEDDs and the Projects of National Significance 
grantees and subgrantees, as provided for in 45 CFR part 74 and part 
92, the Department will keep information about individual clients 
confidential to the maximum extent permitted by law and regulations.
    (e)(1) The Department or other authorized Federal officials may 
access client and case eligibility records or other records of a P&A 
system for audit purposes, and for purposes of monitoring system 
compliance pursuant to Section 103(b) of the Act. However, such 
information will be limited pursuant to Section 144(c) of the Act. No 
personal identifying information such as name, address, and social 
security number will be obtained. Only eligibility information will be 
obtained regarding the type and level of disability of individuals 
being served by the P&A and the nature of the issue concerning which 
the system represented an individual.
    (2) Notwithstanding paragraph (e)(1) of this section, if an audit, 
monitoring review, evaluation, or other investigation by the Department 
produces evidence that the system has violated the Act or the 
regulations, the system will bear the burden of proving its compliance. 
The system's inability to establish compliance because of the 
confidentiality of records will not relieve it of this responsibility. 
The P&A may elect to obtain a release regarding personal information 
and privacy from all individuals requesting or receiving services at 
the time of intake or application. The release shall state that only 
information directly related to client and case eligibility will be 
subject to disclosure to officials of the Department.
    2. Revise part 1386 to read as follows.

PART 1386--FORMULA GRANT PROGRAMS

Section Contents

Subpart A--Basic Requirements
Sec.
1386.1 General.
1386.2 Obligation of funds.
1386.3 Liquidation of obligations.
1386.4 [Reserved]
Subpart B--Protection and Advocacy of Individual Rights
1386.19 Definitions.
1386.20 Agency Designated to Administer the State Protection and 
Advocacy System.
1386.21 Requirements and authority of the State Protection and 
Advocacy System.
1386.22 Periodic reports: State Protection and Advocacy System.
1386.23 Non-allowable costs for the State Protection and Advocacy 
System.
1386.24 Allowable litigation costs for the State Protection and 
Advocacy System.
Subpart C--Access to Records, Service Providers, and Service Recipients
1386.25 Access to records.
1386.26 Denial or delay of access.
1386.27 Access to Service Providers and Service Recipients.
1386.28 Confidentiality of protection and advocacy systems records.
Subpart D--Federal Assistance to State Councils on Developmental 
Disabilities
1386.30 State plan requirements.
1386.31 State plan submittal and approval.
1386.32 Periodic reports: Federal assistance to State Councils on 
Developmental Disabilities.
1386.33 Protection of employee's interests.
1386.34 Designated State Agency.

[[Page 19727]]

1386.35 Allowable and non-allowable costs for Federal Assistance to 
State Councils on Developmental Disabilities.
1386.36 Final disapproval of the State plan or plan amendments.
Subpart E--Practice and Procedure for Hearings Pertaining to State's 
Conformity and Compliance With Developmental Disabilities State Plans, 
Reports and Federal Requirements

General

1386.80 Definitions.
1386.81 Scope of rules.
1386.82 Records to the public.
1386.83 Use of gender and number.
1386.84 Suspension of rules.
1386.85 Filling and service of papers.

Preliminary Matters--Notice and Parties

1386.90 Notice of hearing opportunity for hearing.
1386.91 Time of hearing.
1386.92 Place.
1386.93 Issues at hearing.
1386.94 Request to participate in hearing.

Hearing Procedures

1386.100 Who presides.
1386.101 Authority of presiding officer.
1386.102 Rights of parties.
1386.103 Discovery.
1386.104 Evidentiary purpose.
1386.105 Evidence.
1386.106 Exclusion from hearing for misconduct.
1386.107 Unsponsored written material.
1386.108 Official transcript.
1386.109 Record for decision.

Posthearing Procedures, Decisions

1386.110 Posthearing briefs.
1386.111 Decisions following hearing.
1386.112 Effective date of decision by the Assistant Secretary.

    Authority: 42 U.S.C. 15001 et seq.

Subpart A--Basic Requirements


Sec.  1386.1  General.

    All rules under this subpart are applicable to both the State 
Councils on Developmental Disabilities and the agency designated to 
administer the State Protection and Advocacy System (P&As).


Sec.  1386.2  Obligation of funds.

    (a) Funds which the Federal Government allots under this part 
during a Federal fiscal year are available for obligation by States for 
a two-year period beginning with the first day of the Federal fiscal 
year in which the grant is awarded.
    (b)(1) A State incurs an obligation for acquisition of personal 
property or for the performance of work on the date it makes a binding, 
legally enforceable, written commitment, or when the State Council on 
Developmental Disabilities enters into an Interagency Agreement with an 
agency of State government for acquisition of personal property or for 
the performance of work.
    (2) A State incurs an obligation for personal services, for 
services performed by public utilities, for travel or for rental of 
real or personal property on the date it receives the services, its 
personnel takes the travel, or it uses the rented property.
    (c)(1) A Protection & Advocacy System may elect to treat entry of 
an appearance in judicial and administrative proceedings on behalf of 
an individual with a developmental disability as a basis for obligating 
funds for the litigation costs. The amount of the funds obligated must 
not exceed a reasonable estimate of the costs, and the way the estimate 
was calculated must be documented.
    (2) For the purpose of this paragraph, litigation costs mean 
expenses for court costs, depositions, expert witness fees, travel in 
connection with a case and similar costs, and costs resulting from 
litigation in which the agency has represented an individual with 
developmental disabilities (e.g., monitoring court orders, consent 
decrees), but not for salaries of employees of the P&A. All funds made 
available for Federal assistance to State Councils on Developmental 
Disabilities and to the P&As obligated under this paragraph are subject 
to the requirement of paragraph (a) of this section. These funds, if 
reobligated, may be reobligated only within a two-year period beginning 
with the first day of the Federal fiscal year in which the funds were 
originally awarded.


Sec.  1386.3  Liquidation of obligations.

    (a) All obligations incurred pursuant to a grant made under the Act 
for a specific Federal fiscal year, must be liquidated within two years 
of the close of the Federal fiscal year in which the grant was awarded.
    (b) The Commissioner may waive the requirements of paragraph (a) of 
this section when State law impedes implementation or the amount of 
obligated funds to be liquidated is in dispute.
    (c) Funds attributable to obligations which are not liquidated in 
accordance with the provisions of this section revert to the Federal 
Government.


Sec.  1386.4  [Reserved]

Subpart B--Protection and Advocacy of Individual Rights


Sec.  1386.19  Definitions.

    As used in Sec. Sec.  1386.20, 1386.21, 1386.24, and 1386.25 of 
this part and subpart C the following definitions apply:
    Abuse. The term ``abuse'' means any act or failure to act which was 
performed, or which was failed to be performed, knowingly, recklessly, 
or intentionally, and which caused, or may have caused, injury or death 
to an individual with developmental disabilities, and includes but is 
not limited to such acts as: verbal, nonverbal, mental and emotional 
harassment; rape or sexual assault; striking; the use of excessive 
force when placing such an individual in bodily restraints; the use of 
bodily or chemical restraints which is not in compliance with Federal 
and State laws and regulations; or, any other practice which is likely 
to cause immediate physical or psychological harm or result in long 
term harm if such practices continue. In addition, the P&A may 
determine, in its discretion, that repeated and/or egregious violations 
of an individual's statutory or constitutional rights amounts to abuse, 
such as in a case where an individual is subject to significant 
financial exploitation which may prevent the individual from providing 
for his or her basic needs such as food and shelter.
    American Indian Consortium. The term ``American Indian Consortium'' 
means any confederation of 2 or more recognized American Indian tribes, 
created through the official action of each participating tribe, that 
has a combined total resident population of 150,000 enrolled tribal 
members and a contiguous territory of Indian lands in two or more 
States.
    Complaint. The term ``complaint'' includes, but is not limited to, 
any report or communication, whether formal or informal, written or 
oral, received by the system, including media accounts, newspaper 
articles, telephone calls (including anonymous calls) from any source 
relating to the status or treatment of an individual with a 
developmental disability.
    Designating Official. The term ``designating official'' means the 
Governor or other State official, who is empowered by the State 
legislature or Governor to designate the State official or public or 
private agency to be accountable for the proper use of funds by and 
conduct of the agency designated to administer the State Protection and 
Advocacy System.
    Full Investigation. The term ``full investigation'' means access to 
service providers, individuals with developmental disabilities and 
records authorized under these regulations, that are necessary for a 
P&A system to make a determination about whether alleged or suspected 
instances of abuse and neglect are taking place or have taken

[[Page 19728]]

place. Full investigations may be conducted independently or in 
cooperation with other agencies authorized to conduct similar 
investigations.
    Legal Guardian, conservator and legal representative. The terms 
``legal guardian,'' ``conservator,'' and ``legal representative'' all 
mean an individual appointed and regularly reviewed by a State court or 
agency empowered under State law to appoint and review such officers, 
and having authority to make all decisions on behalf of individuals 
with developmental disabilities. It does not include persons acting 
only as a representative payee, persons acting only to handle financial 
payments, attorneys or other persons acting on behalf of an individual 
with developmental disabilities only in individual legal matters, or 
officials or their designees responsible for the provision of treatment 
or habilitation services to an individual with developmental 
disabilities.
    Neglect. The term ``neglect'' means a negligent act or omission by 
an individual responsible for providing services, supports or other 
assistance which caused or may have caused injury or death to an 
individual with developmental disabilities, or which placed an 
individual with developmental disabilities at risk of injury or death, 
and includes acts or omissions such as failure to: establish or carry 
out an appropriate individual program plan or treatment plan (including 
a discharge plan); provide adequate nutrition, clothing, or health care 
to an individual with developmental disabilities; or provide a safe 
environment which also includes failure to maintain adequate numbers of 
trained staff.
    Probable cause. The term ``probable cause'' means, depending on the 
context, a reasonable ground for belief that an individual with 
developmental disabilities has been, or may be, subject to abuse or 
neglect, or that the health or safety of the individual is in serious 
and immediate jeopardy. The individual making such determination may 
base the decision on reasonable inferences drawn from his or her 
experience or training regarding similar incidents, conditions or 
problems that are usually associated with abuse or neglect. The P&A 
system is the final arbiter of probable cause between itself and the 
organization or individual from whom it is seeking records.
    Service provider. The term ``service provider'' refers to any 
individual (including a family member of an individual with a 
developmental disability), or a public or private organization or 
agency that provides, directly or through contract, brief or long-term 
services, supports or other assistance to one or more individuals with 
developmental disabilities. Service providers include, entities that 
provide either specialized assistance addressing the needs of persons 
with developmental disabilities or more general assistance such as the 
provision of vocational training, transportation, education or shelter, 
food or clothing. Service providers may include, but are not limited 
to, organizations such as group homes, board and care homes, individual 
residences and apartments, day programs, public and private residential 
and non-residential schools (including charter schools), juvenile 
detention centers, hospitals, nursing homes, homeless shelters, and 
jails and prisons.
    State Protection and Advocacy System. The term ``State Protection 
and Advocacy System'' is synonymous with the term ``P&A'' used 
elsewhere in this regulation, and the terms ``system'' and ``Protection 
and Advocacy System'' used in this part and in part C.


Sec.  1386.20  Agency Designated to Administer the State Protection and 
Advocacy System.

    (a) The designating official must designate the State official or 
public or private agency to be accountable for proper use of funds and 
conduct of the Protection and Advocacy System.
    (b) An agency of the State or private agency providing direct 
services, including guardianship services, may not be designated as the 
agency to administer the Protection and Advocacy System.
    (c) In the event that an entity outside of the State government is 
designated to carry out the program, the designating official or entity 
must assign a responsible State official to receive, on behalf of the 
State, notices of disallowances and compliance actions as the State is 
accountable for the proper and appropriate expenditure of Federal 
funds.
    (d)(1) Prior to any redesignation of the agency which administers 
and operates the State Protection and Advocacy System, the designating 
official must give written notice of the intention to make the 
redesignation to the agency currently administering and operating the 
State Protection and Advocacy System by registered or certified mail. 
The notice must indicate that the proposed redesignation is being made 
for good cause. The designating official also must publish a public 
notice of the proposed action. The agency and the public shall have a 
reasonable period of time, but not less than 45 days, to respond to the 
notice.
    (2) The public notice must include:
    (i) The Federal requirements for the State Protection and Advocacy 
System for individuals with developmental disabilities (Section 143 of 
the Act); and where applicable, the requirements of other Federal 
advocacy programs administered by the State Protection and Advocacy 
System;
    (ii) The goals and function of the State's Protection and Advocacy 
System including the current Statement of Goals and Priorities;
    (iii) The name and address of the agency currently designated to 
administer and operate the State Protection and Advocacy System, and an 
indication of whether the agency also operates other Federal advocacy 
programs;
    (iv) A description of the current agency operating and 
administering the Protection and Advocacy System including, as 
applicable, descriptions of other Federal advocacy programs it 
operates;
    (v) A clear and detailed explanation of the good cause for the 
proposed redesignation;
    (vi) A statement suggesting that interested persons may wish to 
write the current agency operating and administering the State 
Protection and Advocacy System at the address provided in paragraph 
(d)(2)(iii) of this section to obtain a copy of its response to the 
notice required by paragraph (d)(1) of this section. Copies shall be 
provided in accessible formats to individuals with disabilities upon 
request;
    (vii) The name of the new agency proposed to administer and operate 
the State Protection and Advocacy System under the Developmental 
Disabilities program. This agency will be eligible to administer other 
Federal advocacy programs;
    (viii) A description of the system which the new agency would 
administer and operate, including a description of all other Federal 
advocacy programs the agency would operate;
    (ix) The timetable for assumption of operations by the new agency 
and the estimated costs of any transfer and start-up operations; and
    (x) A statement of assurance that the proposed new designated State 
Protection and Advocacy System will continue to serve existing clients 
and cases of the current P&A System or refer them to other sources of 
legal advocacy as appropriate, without disruption.
    (3) The public notice as required by paragraph (d)(1) of this 
section, must be

[[Page 19729]]

in a format accessible to individuals with developmental disabilities 
or their representatives, e.g., tape, diskette. The designating 
official must provide for publication of the notice of the proposed 
redesignation using the State register, statewide newspapers, public 
service announcements on radio and television, or any other legally 
equivalent process. Copies of the notice must be made generally 
available to individuals with developmental disabilities and mental 
illness who live in residential facilities through posting or some 
other means.
    (4) After the expiration of the public comment period required in 
paragraph (d)(1) of this section, the designating official must conduct 
a public hearing on the redesignation proposal. After consideration of 
all public and agency comments, the designating official must give 
notice of the final decision to the currently designated agency and the 
public through the same means used under paragraph (d)(3) of this 
section. This notice must include a clear and detailed explanation of 
the good cause finding. If the notice to the currently designated 
agency states that the redesignation will take place, it also must 
inform the agency of its right to appeal this decision to the Assistant 
Secretary for Children and Families, who has been delegated the 
authority to hear appeals by the Secretary, and provide a summary of 
the public comments received in regard to the notice of intent to 
redesignate and the results of the public hearing and its responses to 
those comments. The redesignation shall not be effective until 10 
working days after notifying the current agency that administers and 
operates the State Protection and Advocacy System or, if the agency 
appeals, until the Assistant Secretary has considered the appeal.
    (e)(1) Following notification as indicated in paragraph (d)(4) of 
this section, the agency that administers and operates the State 
Protection and Advocacy System which is the subject of such action, may 
appeal the redesignation to the Assistant Secretary. To do so, the 
agency that administers and operates the State Protection and Advocacy 
System must submit an appeal in writing to the Assistant Secretary 
within 20 days of receiving official notification under paragraph 
(d)(4) of this section, with a separate copy sent by registered of 
certified mail to the designating official who made the decision 
concerning redesignation.
    (2) In the event that the agency subject to redesignation does 
exercise its right to appeal under paragraph (e)(1) of this section, 
the designating official must give public notice of the Assistant 
Secretary's final decision regarding the appeal through the same means 
utilized under paragraph (d)(3) of this section within 10 working days 
of receipt of the Assistant Secretary's final decision under paragraph 
(e)(6) of this section.
    (3) The designating official within 10 working days from the 
receipt of a copy of the appeal must provide written comments to the 
Assistant Secretary (with a copy sent by registered or certified mail 
to the Protection and Advocacy agency appealing under paragraph (e)(1) 
of this section), or withdraw the redesignation. The comments must 
include a summary of the public comments received in regard to the 
notice of intent to redesignate and the results of the public hearing 
and its responses to those comments.
    (4) In the event that the designating official withdraws the 
redesignation while under appeal pursuant to paragraph (e)(1) of this 
section, the designating official must notify the Assistant Secretary, 
and the current agency, and must give public notice of his or her 
decision through the same means utilized under paragraph (d)(3) of this 
section.
    (5) As part of their submission under paragraph (e)(1) or (e)(3) of 
this section, either party may request, and the Assistant Secretary may 
grant, an opportunity for an informal meeting with the Assistant 
Secretary at which representatives of both parties will present their 
views on the issues in the appeal. The meeting will be held within 20 
working days of the submission of written comments by the designating 
official under paragraph (e)(2) of this section. The Assistant 
Secretary will promptly notify the parties of the date and place of the 
meeting.
    (6) Within 30 days of the informal meeting under paragraph (e)(5) 
of this section, or, if there is no informal meeting under paragraph 
(e)(5) of this section, within 30 days of the submission under 
paragraph (e)(3) of this section, the Assistant Secretary will issue to 
the parties a final written decision on whether the redesignation was 
for good cause as defined in paragraph (d)(1) of this section. The 
Assistant Secretary will receive comments on the record from agencies 
administering the Federal advocacy programs that will be directly 
affected by the proposed redesignation. The P&A and the designating 
official will have an opportunity to comment on the submissions of the 
Federal advocacy programs. The Assistant Secretary shall consider the 
comments of the Federal programs, the P&A and the designating official 
in making his final decision on the appeal.
    (f)(1) Within 30 days after the redesignation becomes effective 
under paragraph (d)(4) of this section, the designating official must 
submit an assurance to the Assistant Secretary that the newly 
designated agency that will administer and operate the State Protection 
and Advocacy System meets the requirements of the statute and the 
regulations.
    (2) In the event that the agency administering and operating the 
State Protection and Advocacy System subject to redesignation does not 
exercise its rights to appeal within the period provided under 
paragraph (e)(1) of this section, the designating official must provide 
to the Assistant Secretary documentation that the agency was 
redesignated for good cause. Such documentation must clearly 
demonstrate that the Protection and Advocacy agency subject to 
redesignation was not redesignated for any actions or activities which 
were carried out under section 143 of the Act, this regulation or any 
other Federal advocacy program's legislation or regulations.


Sec.  1386.21  Requirements and authority of the State Protection and 
Advocacy System.

    (a) In order for a State to receive Federal funding for Protection 
and Advocacy activities under this subpart, as well as for the State 
Council on Developmental Disabilities activities (subpart D of this 
part), the Protection and Advocacy System (P&A) must meet the 
requirements of Section 143 and 144 of the Act (42 U.S.C. 15043 and 42 
U.S.C. 15044) and that system must be operational.
    (b) Allotments must be used to supplement and not to supplant the 
level of non-Federal funds available in the State for activities under 
the Act, which shall include activities on behalf of individuals with 
developmental disabilities to remedy abuse, neglect, and violations of 
rights as well as information and referral activities.
    (c) A P&A shall not implement a policy or practice restricting the 
remedies that may be sought on the behalf of individuals with 
developmental disabilities or compromising the authority of the P&A to 
pursue such remedies through litigation, legal action or other forms of 
advocacy. Under this requirement, States may not establish a policy or 
practice, which requires the P&A to: obtain the State's review or 
approval of the P&A's plans to undertake a particular advocacy 
initiative, including specific litigation (or to pursue litigation

[[Page 19730]]

rather than some other remedy or approach); refrain from representing 
individuals with particular types of concerns or legal claims, or 
refrain from otherwise pursuing a particular course of action designed 
to remedy a violation of rights, such as educating policymakers about 
the need for modification or adoption of laws or policies affecting the 
rights of individuals with developmental disabilities; restrict the 
manner of the P&A's investigation in a way that is inconsistent with 
the system's required authority under the DD Act; or similarly 
interfere with the P&A's exercise of such authority. The requirements 
of this paragraph shall not prevent P&As, including those functioning 
as agencies within State governments, from developing case or client 
acceptance criteria as part of the annual priorities identified by the 
P&A as described in section 1386.23(c) of this part. Clients must be 
informed at the time they apply for services of such criteria.
    (d) A Protection and Advocacy System shall be free from hiring 
freezes, reductions in force, prohibitions on staff travel, or other 
policies, imposed by the State, to the extent that such policies would 
impact system program staff or functions funded with Federal funds, and 
would prevent the system from carrying out its mandates under the Act.
    (e) A Protection and Advocacy System shall have sufficient staff, 
qualified by training and experience, to carry out the responsibilities 
of the system in accordance with the priorities of the system and 
requirements of the Act. These responsibilities include the 
investigation of allegations of abuse, neglect and representations of 
individuals with developmental disabilities regarding rights 
violations.
    (f) A Protection and Advocacy System may exercise its authority 
under State law where the State authority exceeds the authority 
required by the Developmental Disabilities Assistance and Bill of 
Rights Act of 2000. However, State law must not diminish the required 
authority of the Protection and Advocacy System as set by the Act.
    (g) Each Protection and Advocacy System that is a public system 
without a multimember governing or advisory board must establish an 
advisory council in order to provide a voice for individuals with 
developmental disabilities. The Advisory Council shall advise the 
Protection and Advocacy System on program policies and priorities. The 
Advisory Council shall be comprised of a majority of individuals with 
developmental disabilities who are eligible for services, or have 
received or are receiving services or parents or family members 
(including those representing individuals with developmental 
disabilities who live in institutions and home and community based 
settings), guardians, advocates, or authorized representatives of such 
individuals.
    (h) Prior to any Federal review of the State program, a 30-day 
notice and an opportunity for public comment must be published in the 
Federal Register. Reasonable effort shall be made by the appropriate 
Regional Office to seek comments through notification to major 
disability advocacy groups, the State Bar, disability law resources, 
the State Councils on Developmental Disabilities and the University 
Centers for Excellence in Developmental Disabilities Education, 
Research, and Service, for example, through newsletters and publication 
of those organizations. The findings of public comments may be 
consolidated if sufficiently similar issues are raised and they shall 
be included in the report of the onsite visit.
    (i) Before the Protection and Advocacy System releases information 
to individuals not otherwise authorized to receive it, the Protection 
and Advocacy System must obtain written consent from the client 
requesting assistance, if competent, or his or her guardian.


Sec.  1386.22  Periodic reports: State Protection and Advocacy System.

    (a) By January 1 of each year, each State Protection and Advocacy 
System shall submit to ADD, an Annual Program Performance Report. In 
order to be accepted, the Report must meet the requirements of Section 
144(e) of the Act (42 U.S.C. 15044), the applicable regulation and 
include information on the System's program necessary for the Secretary 
to comply with section 105(1), (2), and (3) of the Act (42 U.S.C. 
15005). The Report shall describe the activities, accomplishments, and 
expenditures of the system during the preceding fiscal year, including 
a description of the system's goals, the extent to which the goals were 
achieved, barriers to their achievement, the process used to obtain 
public input, the nature of such input, and how such input was used, 
the extent to which unserved or underserved individuals or groups, 
particularly from ethnic or racial groups or geographic regions (e.g., 
rural or urban areas), were the target of assistance or service, and 
other such information on the Protection and Advocacy System's 
activities requested by ADD. In addition, each System must report on 
its achievement of the measures of progress for the preceding year 
pursuant to Sec.  1385.5(a) (4) of this part.
    (b) Financial status reports (standard form 269) must be submitted 
by the agency administering and operating the State Protection and 
Advocacy System semiannually.
    (c) By January 1 of each year, the State Protection and Advocacy 
System shall submit to ADD, an Annual Statement of Goals and 
Priorities, (SGP), for the coming fiscal year as required under Section 
143(a)(2)(C) of the Act (42 U.S.C. 15043). In order to be accepted by 
ADD, an SGP must meet the requirements of the Act and the applicable 
regulation, including Sec.  1385.5(a)(3).
    (1) The SGP is a description and explanation of the system's goals 
and priorities for its activities, selection criteria for its 
individual advocacy and training activities, and the outcomes it 
strives to accomplish. The SGP is developed through data driven 
strategic planning. For each goal in an area of emphasis the indicators 
of progress (measures of consumer satisfaction, improvement, and 
collaboration) will apply as provided under section 1385.5 of this 
part. If changes are made to the goals or the indicators of progress 
established for a year, the SGP must be amended to reflect those 
changes. The SGP must include a description of how the Protection and 
Advocacy System operates, and where applicable, how it coordinates the 
State Protection and Advocacy program for individuals with 
developmental disabilities with other Protection and Advocacy programs 
administered by the State Protection and Advocacy System. This 
description must include the System's processes for intake, internal 
and external referrals, and streamlining of advocacy services. If the 
System will be requesting or requiring fees or donations from clients 
as part of the intake process, the SGP must state that the system will 
be doing so. The description also must address collaboration, the 
reduction of duplication and overlap of services, the sharing of 
information on service needs, and the development of statements of 
goals and priorities for the various advocacy programs.
    (2) Priorities as established through the SGP serve as the basis 
for the Protection and Advocacy System to determine which cases are 
selected in a given fiscal year. Protection and Advocacy Systems have 
the authority to turn down a request for assistance when it is outside 
the scope of the SGP, but they must inform individuals when this is the 
basis for turning them down.
    (d) Each fiscal year, the Protection and Advocacy System shall:

[[Page 19731]]

    (1) Obtain formal public input on its Statement of Goals and 
Priorities;
    (2) At a minimum, provide for a broad distribution of the proposed 
Statement of Goals and Priorities for the next fiscal year in a manner 
accessible to individuals with developmental disabilities and their 
representatives, allowing at least 45 days from the date of 
distribution for comment;
    (3) Provide to the State Councils on Developmental Disabilities and 
the University Centers for Excellence in Developmental Disabilities 
Education, Research and Service a copy of the proposed Statement of 
Goals and Priorities for comment concurrently with the public notice;
    (4) Incorporate or address any comments received through public 
input and any input received from the State Councils on Developmental 
Disabilities and the University Centers for Excellence in Developmental 
Disabilities Education, Research and Service in the final Statement 
submitted; and
    (5) Address how the Protection and Advocacy System; State Councils 
on Developmental Disabilities and University Centers for Excellence in 
Developmental Disabilities Education Research and Service will 
collaborate with each other and with other public and private entities.


Sec.  1386.23  Non-allowable costs for the State Protection and 
Advocacy System.

    (a) Federal financial participation is not allowable for:
    (1) Costs incurred for activities on behalf of individuals with 
developmental disabilities to solve problems not directly related to 
their disabilities and which are faced by the general populace. Such 
activities include but are not limited to: preparation of wills, 
divorce decrees, and real estate proceedings. Allowable costs in such 
cases would include the Protection and Advocacy System providing 
disability-related technical assistance information and referral to 
appropriate programs and services; and
    (2) Costs not allowed under other applicable statutes, Departmental 
regulations and issuances of the Office of Management and Budget.
    (b) Attorneys' fees are considered program income pursuant to part 
74-Administration of Grants and part 92-Uniform Administrative 
Requirements for Grants and Cooperative Agreements to State and Local 
Governments and must be added to the funds committed to the program and 
used to further the objectives of the program. This requirement shall 
apply to all attorneys' fees, including those earned by contractors and 
those received after the project period in which they were earned.


Sec.  1386.24  Allowable litigation costs for the State Protection and 
Advocacy System.

    Allotments may be used to pay the otherwise allowable costs 
incurred by a Protection and Advocacy System in bringing lawsuits in 
its own right to redress incidents of abuse or neglect, discrimination 
and other rights violations impacting on individuals with developmental 
disabilities to obtain access to records and when it appears on behalf 
of named plaintiffs or a class of plaintiff for such purposes.

Subpart C--Access to Records, Service Providers and Service 
Recipients


Sec.  1386.25  Access to records.

    (a) Pursuant to sections 143(a)(2), (A)(i), (B), (I) and (J) of the 
Act, and subject to the provisions of this section, a Protection and 
Advocacy (P&A) System, and all of its authorized agents, shall have 
access to the records of individuals with developmental disabilities 
under the following circumstances:
    (1) If authorized by an individual who is a client of the system, 
or who has requested assistance from the system, or by such 
individual's legal guardian, conservator or other legal representative.
    (2) In the case of an individual, including an individual whose 
whereabouts are unknown, to whom all of the following conditions apply:
    (i) The individual, due to his or her mental or physical condition, 
is unable to authorize the system to have access;
    (ii) The individual does not have a legal guardian, conservator or 
other legal representative, or the individual's guardian is the State 
(or one of its political subdivisions); and
    (iii) The individual has been the subject of a complaint to the P&A 
system about his or her status or treatment, or the P&A system has 
probable cause (which can be the result of monitoring or other 
activities including media reports and newspaper articles) to believe 
that such individual has been subject to abuse and neglect by any other 
individual or has subjected him or herself to self-abuse.
    (3) In the case of an individual, who has a legal guardian, 
conservator, or other legal representative, about whom a complaint has 
been received by the system or, as a result of monitoring or other 
activities, the system has determined that there is probable cause to 
believe that the individual with developmental disabilities has been 
subject to abuse or neglect by any other individual or has subjected 
him or herself to self-abuse, whenever the following conditions exist:
    (i) The P&A system has made a good faith effort to contact the 
legal guardian, conservator, or other legal representative upon prompt 
receipt of the name and address of the legal guardian, conservator, or 
other legal representative;
    (ii) The system has offered assistance to the legal guardian, 
conservator, or other legal representative to resolve the situation; 
and
    (iii) The legal guardian, conservator, or other legal 
representative has failed or refused to act on behalf of the 
individual.
    (b) Individual records to which P&A systems must have access under 
Section 143(a)(2), (A)(i), (B), (I) and (J) of the Act (whether written 
or in another medium, draft, preliminary or final, including 
handwritten notes, electronic files, photographs or video or audiotape 
records) shall include, but shall not be limited to:
    (1) Individual records prepared or received in the course of 
providing intake, assessment, evaluation, education, training and other 
services, supports or assistance, including medical records, financial 
records, and monitoring and other reports prepared or received by a 
service provider. This includes records stored or maintained at sites 
other than the service provider.
    (2) Reports prepared by a Federal, State or local governmental 
agency, or a private organization charged with investigating incidents 
of abuse or neglect, injury or death. The reports subject to this 
requirement include, but are not limited to, those prepared or 
maintained by agencies with responsibility for overseeing human 
services systems. The organizations whose reports are subject to this 
requirement include, but are not limited to, agencies in the foster 
care systems, developmental disabilities systems, and prison and jail 
systems, criminal and civil law enforcement agencies such as police 
departments, State and Federal licensing and certification agencies, 
and private accreditation organizations such as the Joint Commission on 
the Accreditation of Health Care Organizations. The reports subject to 
this requirement describe any or all of the following:
    (i) The incidents of abuse, neglect, injury, and/or death;
    (ii) The steps taken to investigate the incidents;
    (iii) Reports and records, including personnel records, prepared or

[[Page 19732]]

maintained by the service provider in connection with such reports of 
incidents; or,
    (iv) Supporting information that was relied upon in creating a 
report including all information and records that describe persons who 
were interviewed, physical and documentary evidence that was reviewed, 
and the related investigative findings; and
    (3) Discharge planning records.
    (c) The time period in which the P&A system must be given access to 
records of individuals with developmental disabilities under sections 
143(a)(2)(A)(i), (B), (I), and (J) of the Act, and subject to the 
provisions of this section, varies depending on the following 
circumstances:
    (1) If the P&A system determines that there is probable cause to 
believe that the health or safety of the individual with a 
developmental disability is in serious and immediate jeopardy, or in 
any case of the death of an individual with a developmental disability, 
access to the records of the individual with a developmental 
disability, as described in paragraph (b) of this section shall be 
provided (including the right to inspect and copy records as specified 
in paragraph (d) of this section) to the P&A system within 24 hours of 
receipt of the P&A system's written request for the records without the 
consent of another party. In the case of an inquiry regarding a death 
of an individual with a developmental disability, probable cause to 
believe the individual with a developmental disability's death resulted 
from abuse or neglect or any other specific cause is not required for 
the P&A system to obtain access to the records. Any individual who dies 
in a situation in which services, supports, or other assistance are, 
have been, or may customarily be provided to individuals with 
developmental disabilities shall, for purposes of the P&A system's 
obtaining access to the individual's records, be deemed an individual 
with a developmental disability.
    (2) In all other cases, access to records of individuals with 
developmental disabilities shall be provided to the P&A system within 
three business days after the receipt of such a written request from 
the P&A system.
    (d) A system shall be permitted to inspect and copy information and 
records, subject to a reasonable charge to offset duplicating costs. If 
the organization or agency having possession of the records copies them 
for the P&A system, it may not charge the P&A system an amount that 
would exceed the amount it customarily charged other non-profit or 
State government agencies for reproducing documents. At its option, the 
P&A may make written notes when inspecting information and records, and 
may use its own photocopying equipment to obtain copies. If a party 
other than the P&A system performs the photocopying or other 
reproduction of records, it shall provide the photocopies or 
reproductions to the P&A system within the time frames specified in 
paragraph (c) of this section.


Sec.  1386.26  Denial or delay of access.

    If a P&A system's access to service providers, programs, service 
recipients or records is denied or delayed beyond the deadlines 
specified in Sec. Sec.  1386.25 and 1386.27 of this part, the P&A 
system shall be provided, within one business day after the expiration 
of such deadline with a written statement of reasons for the denial or 
delay. In the case of a denial for alleged lack of authorization, the 
name, address and telephone number of individual service recipients and 
legal guardians, conservators, or other legal representative will be 
included in the aforementioned response. All of the above information 
shall be provided whether or not the P&A has probable cause to suspect 
abuse or neglect, or has received a complaint.


Sec.  1386.27  Access to service providers and service recipients.

    (a) Access to service providers and service recipients shall be 
extended to all authorized agents of a P&A system.
    (b) A P&A system shall have reasonable unaccompanied access to 
public and private service providers, programs in the State, and to all 
areas of the service provider's premises which are used by service 
recipients or are accessible to them. Such access shall be provided 
without advance notice and made available immediately upon request. The 
P&A system shall have reasonable unaccompanied access to service 
recipients at all times necessary to conduct a full investigation of an 
incident of abuse or neglect. This authority shall include the 
opportunity to interview any service recipient, employee, or other 
persons, including the person thought to be the victim of such abuse, 
who might be reasonably believed by the system to have knowledge of the 
incident under investigation. The P&A may not be required to provide 
the name or other identifying information regarding the service 
recipient or staff with whom it plans to meet; neither may the P&A be 
required to justify or explain its interaction with such persons. Such 
access shall be afforded upon request, by the P&A system when:
    (1) An incident is reported or a complaint is made to the P&A 
system;
    (2) The P&A system determines that there is probable cause to 
believe that an incident has or may have occurred; or
    (3) The P&A system determines that there is or may be imminent 
danger of serious abuse or neglect of an individual with a 
developmental disability.
    (c) In addition to the access required under paragraph (b) of this 
section, a P&A system shall have reasonable unaccompanied access to 
service providers for routine circumstances. This includes areas which 
are used by service recipients and are accessible to service recipients 
at reasonable times which at a minimum shall include normal working 
hours and visiting hours. A P&A also shall be permitted to attend 
treatment planning meetings concerning individual service recipients 
with the consent of the individual or his or her guardian, conservator 
or other legal representative. Access to service providers shall be 
afforded immediately upon an oral or written request by the P&A system. 
Except where complying with the P&A's request would interfere with 
treatment or therapy to be provided, service providers shall provide 
access to individuals for the purpose covered by this paragraph within 
24 hours of the system's making a request. If the P&A's access to an 
individual must be delayed beyond 24 hours to allow for the provision 
of treatment or therapy, the P&A shall receive access as soon as 
possible thereafter. Service recipients subject to the requirements in 
this paragraph include adults or minors who have legal guardians or 
conservators. P&A activities shall be conducted so as to minimize 
interference with service provider programs, respect service 
recipients' privacy interests, and honor a recipient's request to 
terminate an interview. This access is for the purpose of:
    (1) Providing information, training, and referral for programs 
addressing the needs of individuals with developmental disabilities, 
and information and training about individual rights, and the 
protection and advocacy services available from the P&A system, 
including the name, address, and telephone number of the P&A system;
    (2) Monitoring compliance with respect to the rights and safety of 
service recipients; and
    (3) Inspecting, viewing and photographing all areas of a service 
provider's premises which are used by service recipients or are 
accessible to them.

[[Page 19733]]

    (d) Unaccompanied access to service recipients shall include the 
opportunity to meet and communicate privately with individuals 
regularly, both formally and informally, by telephone, mail and in 
person.


Sec.  1386.28  Confidentiality of protection and advocacy systems 
records.

    (a) Records maintained by the P&A system are the property of the 
P&A system which must protect them from loss, damage, tampering or use 
by unauthorized individuals. The P&A system must:
    (1) Except as provided elsewhere in this section, keep confidential 
all records and information, including information contained in any 
automated electronic database pertaining to:
    (i) Clients;
    (ii) Individuals who have been provided general information or 
technical assistance on a particular matter;
    (iii) The identity of individuals who report incidents of abuse or 
neglect, or who furnish information that forms the basis for a 
determination that probable cause exists; and
    (iv) Names of individuals who have received services, supports or 
other assistance, and who provided information to the P&A for the 
record.
    (2) Have written policies governing the access, storage, 
duplication and release of information from client records.
    (3) Obtain written consent from the client, if competent, or from 
his or her legal representative; individuals who have been provided 
general information or technical assistance on a particular matter; and 
individuals who furnish reports or information that form the basis for 
a determination of probable cause, before releasing information 
concerning such individuals to individuals not otherwise authorized to 
receive it.
    (b) Nothing in this subpart shall prevent the P&A system from 
issuing a public report of the results of an investigation which 
maintains the confidentiality of the individuals listed in paragraph 
(a)(1) of this section, or reporting the results of an investigation in 
a manner which maintains the confidentiality of such individuals, to 
responsible investigative or enforcement agencies should an 
investigation reveal information concerning the service provider, its 
staff, or employees warranting possible sanctions or corrective action. 
This information may be reported to agencies responsible for service 
provider licensing or accreditation, employee discipline, employee 
licensing or certification, or criminal investigation or prosecution.
    (c) Notwithstanding the confidentiality requirements of this 
section, the P&A may make a report to investigative or enforcement 
agencies, as described in paragraph (b), which reveals the identity of 
an individual service recipient, and information relating to his or her 
status or treatment:
    (1) When the system has received a complaint that the individual 
has been or may be subject to abuse and neglect, or has probable cause 
(which can be the result of monitoring or other activities including 
media reports and newspaper articles) to believe that such individual 
has been or may be subject to abuse or neglect;
    (2) When the system determines that there is probable cause to 
believe the health or safety of the individual is in serious and 
immediate jeopardy; or
    (3) In any case of the death of an individual whom the system 
believes may have had a developmental disability.

Subpart D--Federal Assistance to State Councils on Developmental 
Disabilities


Sec.  1386.30  State plan requirements.

    (a) In order to receive Federal funding under this subpart, each 
State Developmental Disabilities Council must prepare and submit a 
State plan which meets the requirements of Sections 124 and 125 of the 
Act (42 U.S.C. 15024 and 15025), and the applicable regulation. 
Development of the State plan and its periodic updating are the 
responsibility of the State Council on Developmental Disabilities. As 
provided in Section 124(d) of the Act, the Council shall provide 
opportunities for public input and review, and will consult with the 
Designated State Agency to determine that the plan is consistent with 
applicable State laws, and obtain appropriate State plan assurances.
    (b) Failure to comply with the State plan requirements may result 
in the loss of Federal funds as described in Section 127 of the Act (42 
U.S.C. 15027). The Secretary must provide reasonable notice and an 
opportunity for a hearing to the Council and the Designated State 
Agency before withholding any payments for planning, administration, 
and services.
    (c) The State plan must be submitted through the Electronic Data 
Submission system which is used to collect quantifiable and qualifiable 
information from the State Councils on Developmental Disabilities. The 
plan must:
    (1) Identify the agency or office in the State designated to 
support the Council in accordance with Section 124(c)(2) and 125(d). 
The Designated State Agency shall provide required assurances and 
support services requested from and negotiated with the Council.
    (2) For a year covered by the State plan, include for each area of 
emphasis under which a goal or goals have been identified, the measures 
of progress (measures of consumer satisfaction, collaboration, and 
improvement) the Council has established or is required to apply 
pursuant to section 1385.5 of this part to measure its progress in 
furthering the purpose of the Developmental Disabilities Assistance and 
Bill of Rights Act through advocacy, capacity building, and systemic 
change activities.
    (3) Provide for the establishment and maintenance of a Council in 
accordance with Section 125 and describe the membership of such 
Council. The non-State agency members of the Council shall be subject 
to term limits to ensure rotating membership.
    (d) The State plan must be updated during the five-year period when 
substantive changes are contemplated in plan content, including changes 
under paragraph (c)(2).
    (e)(1) The State plan may provide for funding projects to 
demonstrate new approaches to direct services that enhance the 
independence, productivity, and integration and inclusion into the 
community of individuals with developmental disabilities. Direct 
service demonstrations must be short-term, no longer than five years, 
and include a strategy to locate on-going funding from other sources. 
For each demonstration funded, the State plan must include an estimated 
period of the project's duration and a brief description of how the 
services will be continued without Federal developmental disabilities 
program funds. Council funds may not be used to fund on-going services 
that should be paid for by the State or other sources.
    (2) The State plan may provide for funding of other demonstration 
projects or activities, including but not limited to outreach, 
training, technical assistance, supporting and educating communities, 
interagency collaboration and coordination, coordination with related 
councils, committees and programs, barrier elimination, systems design 
and redesign, coalition development and citizen participation, and 
informing policymakers. Awards for these demonstrations should be no 
longer than five years.

[[Page 19734]]

    (f) The State plan must contain assurances that:
    (1) The State will comply with all applicable Federal statutes and 
regulations in effect during the time that the State is receiving 
formula grant funding;
    (2) The human rights of individuals with developmental disabilities 
will be protected consistent with Section 109 of the Act (42 U.S.C. 
15009).
    (3) Buildings used in connection with activities assisted under the 
plan must meet all applicable provisions of Federal and State laws 
pertaining to accessibility, fire, health and safety standards.
    (4) The State Council on Developmental Disabilities shall follow 
the requirements of Section 125(c)(8), (9) and (10) of the Act 
regarding budgeting, staff hiring, supervision, and assignment. Budget 
expenditures must be consistent with applicable State laws and policies 
regarding grants, contracts, and accounting, and bookkeeping practices 
and procedures. In relation to staff hiring, the clause ``consistent 
with State law'' in Section 125(c)(9) means that the hiring of State 
Council on Developmental Disabilities staff must be done in accordance 
with State personnel policies and procedures except that a State shall 
not apply hiring freezes, reductions in force, prohibitions on staff 
travel, or other policies, to the extent that such policies would 
impact staff or functions funded with Federal funds, and would prevent 
the Council from carrying out its functions under the Act.


Sec.  1386.31  State plan submittal and approval.

    (a) The Council shall issue a public notice about the availability 
of the proposed State plan or State plan amendment(s) for comment. The 
Notice shall be published in formats accessible to individuals with 
developmental disabilities and the general public (e.g., tape, 
diskette, public forums, and newspapers) and shall provide a 45-day 
period for public review and comment. The Council shall take into 
account comments submitted within that period, and respond in the State 
plan to significant comments and suggestions. A summary of the 
Council's responses to State plan comments shall be submitted with the 
State plan and made available for public review. This document shall be 
made available in accessible formats upon request.
    (b) The State plan or amendment must be submitted to ADD 45 days 
prior to the fiscal year for which it is applicable. The State plan or 
amendment must be approved by the entity or individual authorized to do 
so under State law.
    (c) Failure to submit an approvable State plan or amendment prior 
to the Federal fiscal year for which it is applicable may result in the 
loss of Federal financial participation. Plans received during a 
quarter of the Federal fiscal year are approved back to the first day 
of the quarter so costs incurred from that point forward are 
approvable. Costs resulting from obligations incurred during the period 
of the fiscal year for which an approved plan is not in effect are not 
eligible for Federal financial participation.
    (d) The Commissioner must approve any State plan or plan amendment 
provided it meets the requirements of the Act and this regulation.


Sec.  1386.32  Periodic reports: Federal assistance to State Councils 
on Developmental Disabilities.

    (a) The Governor or appropriate State financial officer must submit 
financial status reports (standard form 269) on the programs funded 
under this Subpart semiannually.
    (b) By January 1 of each year, the State Council on Developmental 
Disabilities shall submit to ADD, an Annual Program Performance Report 
through the system established by ADD. In order to be accepted by ADD, 
reports must meet the requirements of Section 125(c)(7) of the Act (42 
U.S.C. 15025) and the applicable regulations, include the information 
on its program necessary for the Secretary to comply with Section 
105(1), (2), and (3) of the Act (42 U.S.C. 15005), and any other 
information requested by ADD. Each Report shall contain information 
about the progress made by the Council in achieving its goals 
including:
    (1) A description of the extent to which the goals were achieved;
    (2) A description of the strategies that contributed to achieving 
the goals;
    (3) To the extent to which the goals were not achieved, a 
description of factors that impeded the achievement;
    (4) Separate information on the self-advocacy goal described in 
Section 124(c)(4)(A)(ii) of the Act (42 U.S.C. 15024);
    (5) As appropriate, an update on the results of the comprehensive 
review and analysis of the extent to which services, supports, and 
other assistance are available to individuals with developmental 
disabilities and their families, including the extent of unmet needs 
for services, supports, and other assistance for those individuals and 
their families, in the State as required in Section 124(c)(3) of the 
Act (42 U.S.C. 15024);
    (6) Information on consumer satisfaction with Council supported or 
conducted activities;
    (7) A description of the adequacy of health care and other 
services, supports, and assistance that individuals with developmental 
disabilities in Intermediate Care Facilities (Mental Retardation) 
receive;
    (8) To the extent available, a description of the adequacy of 
health care and other services, supports, and assistance received by 
individuals with developmental disabilities served through home and 
community-based waivers (authorized under Section 1915(c) of the Social 
Security Act);
    (9) An accounting of the funds paid to the State awarded under the 
DD Council program;
    (10) A description of resources made available to carry out 
activities to assist individuals with developmental disabilities 
directly attributable to Council actions;
    (11) A description of resources made available for such activities 
that are undertaken by the Council in collaboration with other 
entities; and
    (12) A description of the method by which the Council will widely 
disseminate the annual report to affected constituencies and the 
general public and will assure that the report is available in 
accessible formats.
    (c) Each Council must include in its Annual Program Performance 
Report information on its achievement of the measures of progress 
established pursuant to Sec.  1385.5 for the year covered by the Report 
(OMB Clearance 0980-0172).


Sec.  1386.33  Protection of employee's interests.

    (a) Based on Section 124(c)(5)(J) of the Act (42 
U.S.C.15024(c)(5)(J)), the State plan must assure fair and equitable 
arrangements to protect the interest of all institutional employees 
affected by actions under the plan to provide community living 
activities. The State must inform employees of the State's decision to 
provide for community living activities. Specific arrangements for the 
protection of affected employees must be developed through negotiations 
between the appropriate State authorities and employees or their 
representatives.
    (b) Fair and equitable arrangements must include procedures that 
provide for the impartial resolution of disputes between the State and 
an employee concerning the interpretation, application, and enforcement 
of protection arrangements. To the maximum extent practicable, these

[[Page 19735]]

arrangements must include provisions for:
    (1) The preservation of rights and benefits;
    (2) Guaranteeing employment to employees affected by action under 
the plan to provide alternative community living arrangements; and
    (3) Employee training and retraining programs.


Sec.  1386.34  Designated State Agency.

    (a) The Designated State Agency shall provide the required 
assurances and other support services as requested and negotiated by 
the Council. These include:
    (1) Provision of financial reporting and other services as provided 
under Section 125(d)(3)(D) of the Act; and
    (2) Information and direction, as appropriate, on procedures on the 
hiring, supervision, and assignment of staff in accordance with State 
law.
    (b) If the State Council on Developmental Disabilities requests a 
review by the Governor (or State legislature, if applicable) of the 
Designated State Agency, the Council must provide documentation of the 
reason for change, and recommend a new preferred Designated State 
Agency by the Governor (or State legislature, if applicable).
    (c) After the review is completed by the Governor (or State 
legislature, if applicable), and if no change is made, a majority of 
the non-State agency members of the Council may appeal to the Assistant 
Secretary for the Administration for Children and Families for a review 
of the Designated State Agency if the Council's independence as an 
advocate is not assured because of the actions or inactions of the 
Designated State agency.
    (d) The following steps apply to the appeal of the Governor's (or 
State legislature, if applicable) designation of the Designated State 
Agency.
    (1) Prior to an appeal to the Assistant Secretary, the State 
Council on Developmental Disabilities must give a 30 day written 
notice, by certified mail, to the Governor (or State legislature, if 
applicable) of the majority of non-State members' intention to appeal 
the designation of the Designated State Agency.
    (2) The appeal must clearly identify the grounds for the claim that 
the Council's independence as an advocate is not assured because of the 
action or inactions of the Designated State Agency.
    (3) Upon receipt of the appeal from the State Council on 
Developmental Disabilities, the Assistant Secretary will notify the 
State Council on Developmental Disabilities and the Governor (or State 
legislature, if applicable), by certified mail, that the appeal has 
been received and will be acted upon within 60 days. The Governor (or 
State legislature, if applicable) shall within 10 working days from the 
receipt of the Assistant Secretary's notification provide written 
comments to the Assistant Secretary (with a copy sent by registered or 
certified mail to the Council) on the claims in the Council's appeal. 
Either party may request, and the Assistant Secretary may grant, an 
opportunity for an informal meeting with the Assistant Secretary at 
which representatives from both parties will present their views on the 
issues in the appeal. The meeting will be held within 20 working days 
of the submission of written comments by the Governor (or State 
legislature, if applicable). The Assistant Secretary will promptly 
notify the parties of the date and place of the meeting.
    (4) The Assistant Secretary will review the issue(s) and provide a 
final written decision within 60 days following receipt of the appeal 
from the State Council on Developmental Disabilities. If the 
determination is made that the Designated State Agency should be 
redesignated, the Governor (or State legislature, if applicable) must 
provide written assurance of compliance within 45 days from receipt of 
the decision.
    (5) Anytime during this appeals process the State Council on 
Developmental Disabilities may withdraw such request if resolution has 
been reached with the Governor (or State legislature, if applicable) on 
the Designated State Agency. The Governor (or State legislature, if 
applicable) must notify the Assistant Secretary in writing of such a 
decision.
    (e) The Designated State Agency may authorize the Council to 
contract with State agencies other than the Designated State Agency to 
perform functions of the Designated State Agency.


Sec.  1386.35  Allowable and non-allowable costs for Federal Assistance 
to State Councils on Developmental Disabilities.

    (a) Under this subpart, Federal funding is available for costs 
resulting from obligations incurred under the approved State plan for 
the necessary expenses of administering the plan, which may include the 
establishment and maintenance of the State Council, and all programs, 
projects, and activities carried out under the State plan.
    (b) Expenditures which are not allowable for Federal financial 
participation are:
    (1) Costs incurred by institutions or other residential or non-
residential programs which do not comply with the Congressional 
findings with respect to the rights of individuals with developmental 
disabilities in Section 109 of the Act (42 U.S.C. 15009).
    (2) Costs incurred for activities not provided for in the approved 
State plan; and
    (3) Costs not allowed under other applicable statutes, Departmental 
regulations, or issuances of the Office of Management and Budget.
    (c) Expenditure of funds that supplant State and local funds are 
not allowed. Supplanting occurs when State or local funds previously 
used to fund activities under the State plan are replaced by Federal 
funds for the same purpose. However, supplanting does not occur if 
State or local funds are replaced with Federal funds for a particular 
activity or purpose in the approved State plan if the replaced State or 
local funds are then used for other activities or purposes in the 
approved State plan.
    (d) For purposes of determining aggregate minimum State share of 
expenditures, there are three categories of expenditures:
    (1) Expenditures for projects or activities undertaken directly by 
the Council and Council staff to implement State plan activities, as 
described in Section 126(a)(3) of the Act, require no non-Federal 
aggregate of the necessary costs of such activities.
    (2) Expenditures for projects whose activities or products target 
individuals with developmental disabilities who live in urban or rural 
poverty areas, as determined by the Secretary, but not carried out 
directly by the Council and Council staff, as described in Section 
126(a)(2) of the Act, shall have non-Federal funding of at least 10 
percent in the aggregate of the necessary costs of such projects.
    (3) All other projects not directly carried out by the Council and 
Council staff shall have non-Federal funding of at least 25 percent in 
the aggregate of the necessary costs of such projects.
    (e) The Council may vary the non-Federal funding required on a 
project-by-project, activity-by-activity basis (both poverty and non-
poverty activities), including requiring no non-Federal funding from 
particular projects or activities as the Council deems appropriate so 
long as the requirement for aggregate non-Federal funding is met.


Sec.  1386.36  Final disapproval of the State plan or plan amendments.

    The Department will disapprove any State plan or plan amendment 
only after

[[Page 19736]]

the following procedures have been complied with:
    (a) The State plan has been submitted to ADD Central Office for 
review. If after contacting the State on issues with the plan with no 
resolution, a detailed written analysis of the reasons for recommending 
disapproval shall be prepared and provided to the State Council and 
State Designated Agency.
    (b) Once the Commissioner has determined that the State plan, in 
whole or in part, is not approvable, notice of this determination shall 
be sent to the State with appropriate references to the records, 
provisions of the statute and regulations, and all relevant 
interpretations of applicable laws and regulations. The notification of 
the decision must inform the State of its right to appeal in accordance 
with 45 CFR part 1386, subpart E.
    (c) The Commissioner's decision has been forwarded to the State 
Council and its Designated State Agency by certified mail with a return 
receipt requested.
    (d) A State has filed its request for a hearing with the Assistant 
Secretary within 21 days of the receipt of the decision. The request 
for a hearing must be sent by certified mail to the Assistant 
Secretary. The date of mailing the request is considered the date of 
filing if it is supported by independent evidence of mailing. Otherwise 
the date of receipt shall be considered the date of filing.

Subpart E--Practice and Procedure for Hearings Pertaining to 
State's Conformity and Compliance With Developmental Disabilities 
State Plans, Reports and Federal Requirements

General


Sec.  1386.80  Definitions.

    For purposes of this Subpart:
    Act. The term ``Act'' means the Developmental Disabilities 
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).
    ADD. The term ``ADD'' means the Administration on Developmental 
Disabilities within the Administration for Children and Families.
    Assistant Secretary. The term ``Assistant Secretary'' means the 
Assistant Secretary for Children and Families (ACF), Department of 
Health and Human Services.
    Department. The term ``Department'' means the Department of Health 
and Human Services.
    Payment or Allotment. The term ``payment'' or ``allotment'' means 
an amount provided under part B or C of the Developmental Disabilities 
Assistance and Bill of Rights Act of 2000. This term includes Federal 
funds provided under the Act irrespective of whether the State must 
match the Federal portion of the expenditure. This term shall include 
funds previously covered by the terms ``Federal financial 
participation,'' ``the State's total allotment,'' ``further payments,'' 
``payments,'' ``allotment'' and ``Federal funds.''
    Presiding officer. The term ``presiding officer'' means anyone 
designated by the Assistant Secretary to conduct any hearing held under 
this subpart. The term includes the Assistant Secretary if the 
Assistant Secretary presides over the hearing.


Sec.  1386.81  Scope of rules.

    (a) The rules of procedures in this subpart govern the practice for 
hearings afforded by the Department to States pursuant to Sections 124, 
127 and 143 of the Act (42 U.S.C. 15024, 15027 and 15043).
    (b) Nothing in this part is intended to preclude or limit 
negotiations between the Department and the State, whether before, 
during, or after the hearing to resolve the issues that are, or 
otherwise would be, considered at the hearing. Negotiation and 
resolution of issues are not part of the hearing, and are not governed 
by the rules in this subpart, except as otherwise provided in this 
subpart.


Sec.  1386.82  Records to the public.

    All pleadings, correspondence, exhibits, transcripts of testimony, 
exceptions, briefs, decisions, and other documents filed in the docket 
in any proceeding are subject to public inspection.


Sec.  1386.83  Use of gender and number.

    As used in this subpart, words importing the singular number may 
extend and be applied to several persons or things, and vice versa. 
Words importing either gender may be applied to the other gender or to 
organizations.


Sec.  1386.84  Suspension of rules.

    Upon notice to all parties, the Assistant Secretary may modify or 
waive any rule in this subpart, unless otherwise expressly provided, 
upon determination that no party will be unduly prejudiced and justice 
will be served.


Sec.  1386.85  Filing and service of papers.

    (a) All papers in the proceedings must be filed with the designated 
individual in an original and two copies. Only the originals of 
exhibits and transcripts of testimony need be filed.
    (b) Copies of papers in the proceedings must be served on all 
parties by personal delivery or by mail. Service on the party's 
designated representative is deemed service upon the party.

Preliminary Matters--Notice and Parties


Sec.  1386.90  Notice of hearing or opportunity for hearing.

    Proceedings are commenced by mailing a notice of hearing or 
opportunity for hearing from the Assistant Secretary to the State 
Council on Developmental Disabilities and the Designated State Agency, 
or to the State Protection and Advocacy System or designating official. 
The notice must state the time and place for the hearing, and the 
issues that will be considered. The notice must be published in the 
Federal Register.


Sec.  1386.91  Time of hearing.

    The hearing must be scheduled not less than 30 days, nor more than 
60 days after the notice of the hearing is mailed to the State.


Sec.  1386.92  Place.

    The hearing must be held on a date and at a time and place 
determined by the Assistant Secretary with due regard for convenience, 
and necessity of the parties or their representatives. The site of the 
hearing shall be accessible to individuals with disabilities.


Sec.  1386.93  Issues at hearing.

    (a) Prior to a hearing, the Assistant Secretary may notify the 
State in writing of additional issues which will be considered at the 
hearing. That notice must be published in the Federal Register. If that 
notice is mailed to the State less than 20 days before the date of the 
hearing, the State or any other party, at its request, must be granted 
a postponement of the hearing to a date 20 days after the notice was 
mailed or such later date as may be agreed to by the Assistant 
Secretary.
    (b) If any issue is resolved in whole or in part, but new or 
modified issues are presented, the hearing must proceed on the new or 
modified issues.
    (c)(1) If at any time, whether prior to, during, or after the 
hearing, the Assistant Secretary finds that the State has come into 
compliance with Federal requirements on any issue in whole or in part, 
he or she must remove the issue from the proceedings in whole or in 
part as may be appropriate. If all issues are removed the Assistant 
Secretary must terminate the hearing.
    (2) Prior to the removal of an issue, in whole or in part, from a 
hearing involving issues relating to the conformity with Federal 
requirements

[[Page 19737]]

under part B of the Act, of the State plan or the activities of the 
State's Protection and Advocacy System, the Assistant Secretary must 
provide all parties other than the Department and the State (see Sec.  
1386.94(b) of this part) with the statement of his or her intention to 
remove an issue from the hearing and the reasons for that decision. A 
copy of the proposed State plan provision or document explaining 
changes in the activities of the State's Protection and Advocacy System 
on which the State and the Assistant Secretary have settled must be 
sent to the parties. The parties must have an opportunity to submit in 
writing within 15 days their views as to, or any information bearing 
upon, the merits of the proposed provision and the merits of the 
reasons for removing the issue from the hearing.
    (d) In hearings involving questions of noncompliance of a State's 
operation of its program under part B of the Act, with the State plan 
or with Federal requirements, or compliance of the State's Protection 
and Advocacy System with Federal requirements, the same procedure set 
forth in paragraph (c)(2) of this section must be followed with respect 
to any report or evidence resulting in a conclusion by the Assistant 
Secretary that a State has achieved compliance.
    (e) The issues considered at the hearing must be limited to those 
issues of which the State is notified as provided in Sec.  1386.90 and 
paragraph (a) of this section, and new or modified issues described in 
paragraph (b) of this section, and may not include issues or parts of 
issues removed from the proceedings pursuant to paragraph (c) of this 
section.


Sec.  1386.94  Request to participate in hearing.

    (a) The Department, the State, the State Council on Developmental 
Disabilities, the Designated State Agency, and the State Protection and 
Advocacy System, as appropriate, are parties to the hearing without 
making a specific request to participate.
    (b)(1) Other individuals or groups may be recognized as parties if 
the issues to be considered at the hearing have caused them injury and 
their interests are relevant to the issues in the hearing.
    (2) Any individual or group wishing to participate as a party must 
file a petition with the designated individual within 15 days after 
notice of the hearing has been published in the Federal Register, and 
must serve a copy on each party of record at that time in accordance 
with Sec.  1386.85(b) of this part. The petition must concisely state:
    (i) Petitioner's interest in the proceeding;
    (ii) Who will appear for petitioner;
    (iii) The issues the petitioner wishes to address; and
    (iv) Whether the petitioner intends to present witnesses.
    (c)(1) Any interested person or organization wishing to participate 
as amicus curiae must file a petition with the designated individual 
before the commencement of the hearing. The petition must concisely 
state:
    (i) The petitioner's interest in the hearing;
    (ii) Who will represent the petitioner; and
    (iii) The issues on which the petitioner intends to present 
argument.
    (2) The presiding officer may grant the petition if he or she finds 
that the petitioner has a legitimate interest in the proceedings and 
that such participation will not unduly delay the outcome and may 
contribute materially to the proper disposition of the issues.
    (3) An amicus curiae may present a brief oral statement at the 
hearing at the point in the proceedings specified by the presiding 
officer. It may submit a written statement of position to the presiding 
officer prior to the beginning of a hearing and must serve a copy on 
each party. It also may submit a brief or written statement at such 
time as the parties submit briefs and must serve a copy on each party.

Hearing Procedures


Sec.  1386.100  Who presides.

    (a) The presiding officer at a hearing must be the Assistant 
Secretary or someone designated by the Assistant Secretary.
    (b) The designation of a presiding officer must be in writing. A 
copy of the designation must be served on all parties and amici curiae.


Sec.  1386.101  Authority of presiding officer.

    (a) The presiding officer has the duty to conduct a fair hearing, 
avoid delay, maintain order, and make a record of the proceedings. The 
presiding officer has all powers necessary to accomplish these ends, 
including, but not limited to, the power to:
    (1) Change the date, time, and place of the hearing, upon notice to 
the parties. This includes the power to continue the hearing in whole 
or in part;
    (2) Hold conferences to settle or simplify the issues in a 
proceeding, or to consider other matters that may aid in the 
expeditious disposition of the proceedings;
    (3) Regulate participation of parties and amici curiae and require 
parties and amici curiae to state their positions with respect to the 
issues in the proceeding;
    (4) Administer oaths and affirmations;
    (5) Rule on motions and other procedural items on matters pending 
before him or her, including issuance of protective orders or other 
relief to a party against whom discovery is sought;
    (6) Regulate the course of the hearing and conduct of counsel 
therein;
    (7) Examine witnesses;
    (8) Receive, rule on, exclude, or limit evidence or discovery;
    (9) Fix the time for filing motions, petitions, briefs, or other 
items in matters pending before him or her;
    (10) Make a final decision; and
    (11) Take any action authorized by the rules in this subpart or 5 
U.S.C. 551-559.
    (b) The presiding officer does not have authority to compel the 
production of witnesses, papers, or other evidence by subpoena.
    (c) If the presiding officer is a person other than the Assistant 
Secretary, he or she shall certify the entire record, including 
recommended findings and proposed decision, to the Assistant Secretary. 
His or her authority is to render a recommended decision with respect 
to program requirements which are to be considered at the hearing. In 
case of any noncompliance, he or she shall recommend whether payments 
or allotments should be withheld with respect to the entire State plan 
or the activities of the State's Protection and Advocacy System, or 
whether the payments or allotments should be withheld only with respect 
to those parts of the program affected by such noncompliance.


Sec.  1386.102  Rights of parties.

    All parties may:
    (a) Appear by counsel, or other authorized representative, in all 
hearing proceedings;
    (b) Participate in any prehearing conference held by the presiding 
officer;
    (c) Agree to stipulations of facts which will be made a part of the 
record;
    (d) Make opening statements at the hearing;
    (e) Present relevant evidence on the issues at the hearing;
    (f) Present witnesses who then must be available for cross-
examination by all other parties;
    (g) Present oral arguments at the hearing; and
    (h) Submit written briefs, proposed findings of fact, and proposed 
conclusions of law, after the hearing.


Sec.  1386.103  Discovery.

    The Department and any party named in the Notice issued pursuant to

[[Page 19738]]

Sec.  1386.90 of this part has the right to conduct discovery 
(including depositions) against opposing parties as provided by the 
Federal Rules of Civil Procedure. There is no fixed rule on priority of 
discovery. Upon written motion, the presiding officer must promptly 
rule upon any objection to discovery action. The presiding officer also 
has the power to grant a protective order or relief to any party 
against whom discovery is sought and to restrict or control discovery 
so as to prevent undue delay in the conduct of the hearing. Upon the 
failure of any party to make discovery, the presiding officer may issue 
any order and impose any sanction other than contempt orders authorized 
by Rule 37 of the Federal Rules of Civil Procedure.


Sec.  1386.104  Evidentiary purpose.

    The hearing is directed to receiving factual evidence and expert 
opinion testimony related to the issues in the proceeding. Argument 
will not be received in evidence; rather, it must be presented in 
statements, memoranda, or briefs, as directed by the presiding officer. 
Brief opening statements, which shall be limited to a statement of the 
party's position and what it intends to prove, may be made at hearings.


Sec.  1386.105  Evidence.

    (a) Testimony. Testimony by witnesses at the hearing is given 
orally under oath or affirmation. Witnesses must be available at the 
hearing for cross-examination by all parties.
    (b) Stipulations and exhibits. Two or more parties may agree to 
stipulations of fact. Such stipulations, or any exhibit proposed by any 
party, must be exchanged at the prehearing conference or at a different 
time prior to the hearing if the presiding officer requires it.
    (c) Rules of evidence. Technical rules of evidence do not apply to 
hearings conducted pursuant to this subpart, but rules or principles 
designed to assure production of the most credible evidence available 
and to subject testimony to test by cross-examination are applied where 
reasonably necessary by the presiding officer. A witness may be cross-
examined on any matter material to the proceeding without regard to the 
scope of his or her direct examination. The presiding officer may 
exclude irrelevant, immaterial, or unduly repetitious evidence. All 
documents and other evidence offered or taken for the record is open to 
examination by the parties and opportunity must be given to refute 
facts and arguments advanced on either side of the issues.


Sec.  1386.106  Exclusion from hearing for misconduct.

    Disrespectful, disorderly, or rebellious language or contemptuous 
conduct, refusal to comply with directions, or continued use of 
dilatory tactics by any person at the hearing before a presiding 
officer shall constitute grounds for immediate exclusion of such person 
from the hearing by the presiding officer.


Sec.  1386.107  Unsponsored written material.

    Letters expressing views or urging action and other unsponsored 
written material regarding matters in issue in a hearing is placed in 
the correspondence section of the docket of the proceeding. This 
material is not deemed part of the evidence or record in the hearing.


Sec.  1386.108  Official transcript.

    The Department will designate the official reporter for all 
hearings. The official transcript of testimony taken, together with any 
stipulations, exhibits, briefs, or memoranda of law filed with them is 
filed with the Department. Transcripts of testimony in hearings may be 
obtained from the official reporter by the parties and the public at 
rates not to exceed the maximum rates fixed by the contract between the 
Department and the reporter. Upon notice to all parties, the presiding 
officer may authorize corrections to the transcript which involve 
matters of substance. Transcripts must be taken by stenotype machine 
and not be voice recording devices, unless otherwise agreed by all of 
the parties and the presiding officer.


Sec.  1386.109  Record for decision.

    The transcript of testimony, exhibits, and all papers and requests 
filed in the proceedings, except the correspondence section of the 
docket, including rulings and any recommended or initial decision, 
constitute the exclusive record for decision.

Posthearing Procedures, Decisions


Sec.  1386.110  Posthearing briefs.

    The presiding officer must fix the time for filing posthearing 
briefs. This time may not exceed 30 days after termination of the 
hearing and receipt of the transcript. Briefs may contain proposed 
findings of fact and conclusions of law. If permitted, reply briefs may 
be filed no later than 15 days after filing of the posthearing briefs.


Sec.  1386.111  Decisions following hearing.

    (a) If the Assistant Secretary is the presiding officer, he or she 
must issue a decision within 60 days after the time for submission of 
posthearing briefs has expired.
    (b)(1) If the presiding officer is a person designated by the 
Assistant Secretary, he or she must, within 30 days after the time for 
submission of posthearing briefs has expired, certify the entire record 
to the Assistant Secretary including the recommended findings and 
proposed decision.
    The Assistant Secretary must serve a copy of the recommended 
findings and proposed decision upon all parties and amici.
    (2) Any party may, within 20 days, file exceptions to the 
recommended findings and proposed decision and supporting brief or 
statement with the Assistant Secretary.
    (3) The Assistant Secretary must review the recommended decision 
and, within 60 days of its issuance, issue his or her own decision.
    (c) If the Assistant Secretary concludes:
    (1) In the case of a hearing pursuant to Sections 124, 127, or 143 
of the Act, that a State plan or the activities of the State's 
Protection and Advocacy System does not comply with Federal 
requirements, he or she shall also specify whether the State's payment 
or allotment for the fiscal year will not be authorized for the State 
or whether, in the exercise of his or her discretion, the payment or 
allotment will be limited to the parts of the State plan or the 
activities of the State's Protection and Advocacy System not affected 
by the noncompliance.
    (2) In the case of a hearing pursuant to Section 127 of the Act 
that the State is not complying with the requirements of the State 
plan, he or she also must specify whether the State's payment or 
allotment will be made available to the State or whether, in the 
exercise of his or her discretion, the payment or allotment will be 
limited to the parts of the State plan not affected by such 
noncompliance. The Assistant Secretary may ask the parties for 
recommendations or briefs or may hold conferences of the parties on 
these questions.
    (d) The decision of the Assistant Secretary under this section is 
the final decision of the Secretary and constitutes ``final agency 
action'' within the meaning of 5 U.S.C. 704 and the ``Secretary's 
action'' within the meaning of Section 128 of the Act (42 U.S.C. 
15028). The Assistant Secretary's decision must be promptly served on 
all parties and amici.

[[Page 19739]]

Sec.  1386.112  Effective date of decision by the Assistant Secretary.

    (a) If, in the case of a hearing pursuant to Section 124 of the 
Act, the Assistant Secretary concludes that a State plan does not 
comply with Federal requirements, and the decision provides that the 
payment or allotment will be authorized but limited to parts of the 
State plan not affected by such noncompliance, the decision must 
specify the effective date for the authorization of the payment or 
allotment.
    (b) In the case of a hearing pursuant to Sections 127 or 143 of the 
Act, if the Assistant Secretary concludes that the State is not 
complying with the requirements of the State plan or if the activities 
of the State's Protection and Advocacy System do not comply with 
Federal requirements, the decision that further payments or allotments 
will not be made to the State, or will be limited to the parts of the 
State plan or activities of the State Protection and Advocacy System 
not affected, must specify the effective date for withholding payments 
or allotments.
    (c) The effective date may not be earlier than the date of the 
decision of the Assistant Secretary and may not be later than the first 
day of the next calendar quarter.
    (d) The provision of this section may not be waived pursuant to 
Sec.  1386.84.
    3. Revise part 1387 to read as follows.

PART 1387--PROJECTS OF NATIONAL SIGNIFICANCE

Section Contents

Sec.
1387.1 General requirements.

    Authority: 42 U.S.C. 15001 et seq.


Sec.  1387.1  General requirements.

    (a) All projects funded under this part must be of national 
significance and serve or relate to individuals with developmental 
disabilities to comply with subtitle E of the Act, Sections 161-162 (42 
U.S.C. 15081-15083).
    (b) The requirements concerning format and content of the 
application, submittal procedures, eligible applicants, and final 
priority areas will be published in program announcements in the 
Federal Register.
    (c) In general, Projects of National Significance provide technical 
assistance, collect data, demonstrate exemplary and innovative models, 
disseminate knowledge at the local and national levels, and otherwise 
meet the goals of Projects of National Significance Section 161 (42 
U.S.C. 15081).
    (d) Projects of National Significance may engage in one or more of 
the types of activities provided in Section 161(2) of the statute.
    (e) In general, eligible applicants for PNS funding are public and 
private non-profit entities, 42 U.S.C. 15082, such as institutions of 
higher learning, State and local governments, and tribal governments. 
The program announcements will specifically state any further 
eligibility requirements for the priority areas in the fiscal year.
    (f) Faith-based organizations are eligible to apply for PNS 
funding, providing that the faith-based organizations meet the specific 
eligibility criteria contained in the program announcement for the 
fiscal year.
    4. Revise part 1388 to read as follows.

PART 1388--THE NATIONAL NETWORK OF UNIVERSITY CENTERS FOR 
EXCELLENCE IN DEVELOPMENTAL DISABILITIES EDUCATION, RESEARCH, AND 
SERVICE

Section Contents

Sec.
1388.1 Purpose.
1388.2 Core functions.
1388.3 National Training Initiatives on Critical and Emerging Needs.
1388.4 Applications.
1388.5 Five-year plan and annual report.

    Authority: 42 U.S.C. 15001 et seq.


Sec.  1388.1  Purpose.

    (a) The Administration on Developmental Disabilities awards grants 
to eligible entities designated as Centers in each State to pay for the 
Federal share of the cost of the administration and operation of the 
Centers. Centers shall:
    (1) Provide leadership in, advise Federal, State, and community 
policymakers about, and promote opportunities for individuals with 
developmental disabilities to exercise self-determination, be 
independent, be productive, and be integrated and included in all 
facets of community life.
    (2) Be interdisciplinary education, research, and public service 
units of universities (as defined by the Secretary) or public or not-
for-profit entities associated with universities that engage in core 
functions, described in Sec.  1388.2 of this part, addressing, directly 
or indirectly, one or more of the areas of emphasis, as defined in 
Sec.  1385.3.
    (b) To conduct National Training Initiatives on Critical and 
Emerging Needs as described in Sec.  1388.3.


Sec.  1388.2  Core functions.

    The Centers described in Sec.  1388.1(a)(1) and (2) must engage in 
the core functions referred to in Sec.  1388.1(a)(2), which shall 
include--
    (a) Provision of interdisciplinary pre-service preparation and 
continuing education of students and fellows, which may include the 
preparation and continuing education of leadership, direct service, 
clinical, or other personnel to strengthen and increase the capacity of 
States and communities to achieve the purpose of the DD Act of 2000.
    (b) Provision of community services. (1) That provide training or 
technical assistance for individuals with developmental disabilities, 
their families, professionals, paraprofessionals, policymakers, 
students, and other members of the community; and
    (2) That may provide services, supports, and assistance for the 
persons listed in (b)(1) through demonstration and model activities.
    (c) Conduct of research, which may include basic or applied 
research, evaluation, and the analysis of public policy in areas that 
affect or could affect, either positively or negatively, individuals 
with developmental disabilities and their families.
    (d) Dissemination of information related to activities undertaken 
to address the purpose of the DD Act of 2000, especially dissemination 
of information that demonstrates that the network authorized under 
subtitle D is a national and international resource that includes 
specific substantive areas of expertise that may be accessed and 
applied in diverse settings and circumstances.


Sec.  1388.3  National Training Initiatives on Critical and Emerging 
Needs.

    (a) Supplemental grant funds for National Training Initiatives 
(NTIs) on Critical and Emerging Needs will be reserved when each Center 
described in Section 152 of the DD Act has received a grant award of at 
least $500,000, adjusted for inflation.
    (b) The grants shall be awarded to Centers to pay for the Federal 
share of the cost of training initiatives related to the unmet needs of 
individuals with developmental disabilities and their families.
    (c) The grants shall be awarded on a competitive basis, and for 
periods of not more than 5 years.


Sec.  1388.4  Applications.

    (a) To be eligible to receive a grant under Sec.  1388.1 for a 
Center, an entity shall submit to the Secretary, and obtain

[[Page 19740]]

approval of, an application at such time, in such manner, and 
containing such information, as the Secretary may require.
    (b) Each application shall describe a five-year plan, that must 
include--
    (1) Projected goal(s) related to one or more areas of emphasis 
described in Sec.  1385.3 for each of the core functions.
    (2) Measures of progress (measures of consumer satisfaction, 
improvement, and collaboration) it has established, pursuant to Sec.  
1385.5.
    (c) The application shall contain or be supported by reasonable 
assurances that the entity designated as the Center will--
    (1) Meet the measures of progress (measures of consumer 
satisfaction, improvement, and collaboration); and
    (2) Address the projected goals, and carry out goal-related 
activities, based on data driven strategic planning and in a manner 
consistent with the objectives of subtitle D, that--
    (i) Are developed in collaboration with the consumer advisory 
committee established pursuant to paragraph (5);
    (ii) Are consistent with, and to the extent feasible complement and 
further, the Council goals contained in the State plan submitted under 
Section 124 of the DD Act of 2000 and the goals of the P&A System 
established under Section 143 of the DD Act of 2000; and
    (iii) Will be reviewed and revised annually as necessary to address 
emerging trends and needs.
    (3) Use the funds made available through the grant to supplement, 
and not supplant, the funds that would otherwise be made available for 
activities described in Sec.  1388.1(a)(1) and (2) of this part.
    (4) Protect, consistent with the policy specified in Section 
(101)(c) of the DD Act of 2000 (U.S.C. 15001) (relating to rights of 
individuals with developmental disabilities), the legal and human 
rights of all individuals with developmental disabilities (especially 
those individuals under State guardianship who are involved in 
activities carried out under programs assisted under subtitle D).
    (5) Establish a consumer advisory committee--
    (i) Of which a majority of the members shall be individuals with 
developmental disabilities and family members of such individuals;
    (ii) That is comprised of--
    (A) Individuals with developmental disabilities and related 
disabilities;
    (B) Family members of individuals with developmental disabilities;
    (C) A representative of the State Protection and Advocacy System;
    (D) A representative of the State Council on Developmental 
Disabilities;
    (E) A representative of a self-advocacy organization described in 
Section 124(c)(4)(A)(ii)(I) of the DD Act of 2000 (42 U.S.C. Sec.  
15024(c)(4)(A)(ii)(I); and
    (F) Representatives of organizations that may include parent 
training and information centers assisted under Section 671 or 672 of 
the Individuals with Disabilities Education Act (20 U.S.C. 1471, 1472), 
entities carrying out activities authorized under Section 104 or 105 of 
the Assistive Technology Act of 1998 (29 U.S.C. 3003, 3004), relevant 
State agencies, and other community groups concerned with the welfare 
of individuals with developmental disabilities and their families.
    (iii) That reflects the racial and ethnic diversity of the State;
    (iv) That shall--
    (A) Consult with the Director of the Center regarding the 
development of the five-year plan;
    (B) Participate in an annual review of, and comment on, the 
progress of the Center in meeting the projected goals contained in the 
plan;
    (C) Make recommendations to the Director of the Center regarding 
any proposed revisions of the plan that might be necessary; and
    (v) Meet as often as necessary to carry out the role of the 
committee, but at a minimum twice during each grant year.
    (6) To the extent possible, utilize the infrastructure and 
resources obtained through funds made available under the grant to 
leverage additional public and private funds to successfully achieve 
the projected goals developed in the five-year plan;
    (7)(i) Have a director with appropriate academic credentials, 
demonstrated leadership, expertise regarding developmental 
disabilities, significant experience in managing grants and contracts, 
and the ability to leverage public and private funds; and
    (ii) Allocate adequate staff time to carry out activities related 
to each of the core functions described in Sec.  1388.2.
    (8) Educate, and disseminate information related to the purpose of 
the DD Act of 2000 to the legislature of the State in which the Center 
is located, and to Members of Congress from such State.
    (d)(1) All applications submitted under this section shall be 
subject to technical and qualitative review by peer review groups as 
described under Sec.  1388.4(c)(2) of this part.
    (2) Each peer review group shall include such individuals with 
disabilities and parents, guardians, or advocates of or for individuals 
with developmental disabilities, as are necessary to carry out this 
section.
    (e)(1) The Federal share of the cost of administration or operation 
of a Center, or the cost of carrying out a training initiative, 
supported by a grant made under this subtitle D may not be more than 75 
percent of the necessary cost of such project, as determined by the 
Secretary.
    (2) In the case of a project whose activities or products target 
individuals with developmental disabilities who live in an urban or 
rural poverty area, as determined by the Secretary, the Federal share 
of the cost of the project may not be more than 90 percent of the 
necessary costs of the project, as determined by the Secretary.
    (3) For the purpose of determining the Federal share with respect 
to the project, expenditures on that project by a political subdivision 
of a State or by a public or private entity shall be subject to the 
provisions of 45 CFR part 93 New Restrictions on Lobbying (also see 
Sec.  1385.9 Grants administration) and must be considered as an 
expenditure of the Center under subtitle D.


Sec.  1388.5  Five-year plan and annual report.

    (a) As required by Section 154(a)(2) of the DD Act of 2000, (42 
U.S.C. 15064), the application for core funding for a UCEDD shall 
describe a five-year plan, including a projected goal or goals related 
to one or more areas of emphasis for each of the core functions in 
Section 153(a)(2) of the DD Act of 2000 (42 U.S.C. 15063).
    (1) For each area of emphasis under which a goal has been 
identified, the UCEDD must state in its application the measures of 
progress (consumer satisfaction, improvement and collaboration) it has 
established, pursuant to Sec.  1385.5 of this part.
    (2) If changes are made to the measures of progress established for 
a year, the five-year plan must be amended to reflect those changes.
    (3) By July 31 of each year, a UCEDD shall submit an Annual Report, 
using the system established by ADD. In order to be accepted by ADD, an 
Annual Report must meet the requirements of Section 154(e) of the Act 
(42 U.S.C. 15064) and, the applicable regulations, and include the 
information necessary for the Secretary to comply with Section 105(1), 
(2), and (3) of the Act (42 U.S.C. 15005) and any other information 
requested by ADD. The Report shall include information on progress made 
in achieving the UCEDDs goals for the previous year, including:
    (i) The extent to which the goals were achieved;
    (ii) a description of the strategies that contributed to achieving 
the goals;
    (iii) to the extent to which the goals were not achieved, a 
description of

[[Page 19741]]

factors that impeded the achievement; and
    (iv) an accounting of the manner in which funds paid to the UCEDD 
for a fiscal year were expended.
    (4) The Report also must include information on proposed revisions 
to the goals and a description of successful efforts to leverage funds, 
other than funds under the Act, to pursue goals consistent with the 
UCEDD program.
    (5) Each UCEDD must include in its Annual Report information on its 
achievement of the measures of progress established in Sec.  1385.5 of 
this part.

[FR Doc. E8-7412 Filed 4-9-08; 8:45 am]
BILLING CODE 4184-01-P