[Federal Register Volume 59, Number 96 (Thursday, May 19, 1994)]
[Unknown Section]
[Page 0]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 94-12160]


[[Page Unknown]]

[Federal Register: May 19, 1994]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Office of the Secretary

 

Children's Disability Research Issues

AGENCY: Office of the Assistant Secretary for Planning and Evaluation, 
HHS.

ACTION: Request for applications to conduct children's disability 
policy research issues.

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SUMMARY: The Department wishes to conduct research to provide a clearer 
understanding of the policy issues pertaining to children's disability. 
This project looks at children with disabilities in a cross-cutting 
way. Policy issues revolve around a comprehensive set of services, 
including health care, education, and income supports. Little 
information on children with disabilities exists at the national level 
and even less is known about the use, cost, and impact of services for 
these children. This project is intended to foster new policy research 
by encouraging the use of smaller data sets from states, local areas, 
or facilities in order to address our policy concerns. We estimate that 
the scope and level of effort will require from 12 to 17 months to 
accomplish. A total of $600,000 is available for awards in the $50,000 
to $100,000 range. (See part V.E.4).

DATES: The closing date for submitting an application is July 18, 1994.

ADDRESSES: Send applications to: Grants Officer, Office of the 
Assistant Secretary for Planning and Evaluation, Department of Health 
and Human Services, 200 Independence Avenue, SW., room 405F, Hubert H. 
Humphrey Building, Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: Grants Officer at above address, (202) 
401-3951.

SUPPLEMENTARY INFORMATION:

Part I. Background

    Approximately 4.5 million or one in fifteen children under the age 
of 18 have a disability. The sizable number of children with 
disabilities is a result of many factors, including rising life 
expectancies during the entire century, advances in neonatal care and 
medical technology, and improvements in treatment for chronic diseases, 
many of which were previously fatal. Children with disabilities are 
living longer, typically well into adulthood.
    Over the past two decades, children with a wide range of 
disabilities, chronic conditions and illnesses have increasingly become 
part of regular family and community life. A patchwork of public 
programs have been enacted to provide families with a range of supports 
to keep their young members with disabilities at home (rather than in 
hospitals, institutions or other residential settings), send them to 
local schools with non-disabled peers, and foster their participation 
in typical community services and programs.
    Administration of these public programs is spread among different 
Federal Departments and different agencies within those Departments. 
Most public programs are found in either the Department of Health and 
Human Services (DHHS) or in the Department of Education (DEd). DHHS 
public programs providing such support include: Supplemental Security 
Income (SSI), which provides income support for children who are blind 
or disabled, Medicaid, especially through the Early and Periodic 
Screening, Diagnosis and Treatment (EPSDT) benefit, and also certain 
Medicaid state plan services such as rehabilitation and therapies, home 
and community based waivers, and ``TERFA 134'' or other eligibility 
options that serve children whose families have incomes over the 
poverty level; and the Title V Maternal and Child Health Block Grants, 
which enable states to plan, promote, coordinate, and evaluate health 
care for mothers and children and provide health services to those 
individuals who do not have access to adequate health care. The major 
DEd program is the Individuals with Disabilities Education Act (IDEA), 
originally authorized in 1975 as the Education for all Handicapped 
Children's Act, which mandated that public schools provide a ``free 
appropriate education in the least restrictive environment'' for all 
eligible children with disabilities. IDEA also provides early 
intervention and preschool programs for children who have a disability, 
or are at risk of developing one.
    More children with disabilities are participating in these public 
programs, due to both epidemiological factors (higher survival rates) 
and to more generous programmatic definitions of disability. Advocates 
for children with disabilities have won significant court decisions 
resulting in broader definitions of disability and more generous 
benefits. A case in point is the 1990 Supreme Court decision Zebley v 
Sullivan, which broadened the definition of disability for the SSI 
program.
    Growing program rolls and increasing costs give rise to a number of 
policy issues. The lack of data on disability among children, as well 
as on their service use and costs complicates analysis of policy 
options. For example:

     There is widespread concern within the disability 
community and among families of children with disabilities that 
coverage is inadequate for long term rehabilitation, skilled nursing, 
and home care services under virtually all health care reform 
proposals. Yet little information exists on the potential demand for 
and cost-effectiveness of such services for children with disabilities.
     The number of children receiving SSI doubled from nearly 
300 thousand in 1989 to over 770 thousand in 1993. The 1990 Zebley v. 
Sullivan Supreme Court decision, which invalidated the use of a medical 
``listings only'' approach and replaced it with individualized 
functional assessments, contributed to some, but not all growth in SSI. 
There is considerable concern about the size of the potential pool of 
children who may qualify for SSI benefits in the future and how much 
SSI expenditures are likely to grow as a result.
     Private health insurers increasingly attempt to control 
costs by offering managed care plans. Families of children with 
disabilities and their advocates argue that managed care plans are 
inadequate for onging, chronic health-related problems associated with 
disability and chronic illness.
     Both school systems and Medicaid agencies have 
responsibility to provide services for children with disabilities. As 
school systems become increasingly strapped for funds to meet the 
entitlement requirements of Federal special education law, they have 
incentives to bill Medicaid for health related services; Federal 
Medicaid cost sharing is much higher than Federal special education 
funding. The implications of such billing practices on the lives of 
children and on Federal and state budgets need to be examined.

    In light of these trends and policy issues, the primary goal of the 
proposed research is to develop a clearer understanding of children's 
disability. Available data on persons with disabilities, particularly 
that found in national data sets, pertain primarily to adults. It is 
anticipated that this understanding will give policy makers information 
on which to base prudent statutory, regulatory, and funding decisions 
pertinent to current programs as well as regarding health care and 
welfare reform.
    Potential users of the research include Federal and State officials 
involved in disability, health care, income security, and educational 
policy, program development, program administration, and financing 
affecting children with disabilities. Additionally, research findings 
may be used by hospital and facility administrators, school 
administrators, service providers, home health agencies, rehabilitation 
agencies, and the insurance industry.

Part II--Required Research Issue Areas

    Research conducted under grants awarded through this announcement 
will advance the state of knowledge regarding children with 
disabilities in the following issue areas: (A) Definitions and 
measurement; (B) demographic and socio-economic characteristics; (C) 
service use, expenditures, and effectiveness; (D) private cost of care; 
(E) financing of services and supports; and (F) system organization. 
However, these questions are intended merely as illustrations. 
Applicants may propose other questions related to the issue areas. 
These issue areas may be combined and other areas may be proposed if 
they are clearly demonstrated to be relevant to policies regarding 
children with disabilities.
    We encourage secondary data analysis. Given the dearth of national 
data, the applicant is encouraged to select information from states, 
school systems, clinical-level data, or other available data sets, 
which could contain the relevant analytic variables. Other 
methodologies may be appropriate.
    The following sections list the kinds of questions envisioned under 
each of the above issue areas.

A. Definitions and Measurement

    There is no consensus on how disability among children should be 
defined and measured for purposes of determining prevalence in the 
population or for establishing eligibility for disability-related 
benefits and services. For example, studies might address these 
questions: What are the research and programmatic implications of 
alternative disability definitions and measures (including functional 
definitions, such as those used for adults) for different policy 
purposes? How should such measures treat the different developmental 
stages of children from infancy through adolescence? What is the 
estimated impact of using alternative definitions of eligibility on 
program participation under cash assistance programs (e.g., SSI), 
health-related programs (e.g., Medicaid), education programs (e.g. 
Parts B and H), or other Federal disability programs?

B. Demographic and Socio-Economic Characteristics

    National survey data have yielded little information on the 
prevalence of disability among children, particularly as it may signal 
a need for benefits or services. Within this issue area, the following 
types of questions are pertinent: What trends characterize disability 
in children at various developmental stages? Is disability in children 
likely to increase or decrease over the next 10 years, 20 years and 
beyond? To what extent are socio-economic, racial, or ethnic factors 
predictors of disability and or the impact of disability on the child 
and his or her family?
    How does disability status change during the course of childhood? 
What are the rates of such change? Does disability status change when 
children become adults? What are potential implications for program 
eligibility and service use?

C. Service Use, Expenditures, and Effectiveness

    A principal policy concern of government at all levels is the 
effective and efficient allocation of resources to maximize the quality 
of life and potential of children with disabilities. Little information 
is available however on what services children with disabilities need 
or use, how much they cost, and on their effectiveness. For example: 
What patterns of acute care; transitional, rehabilitative, and 
supportive service use and expenditures characterize children with 
disabilities at different stages of their development? How do service 
use and expenditure patterns vary by condition and type of disability, 
level of functioning, socio-economic status, family structure, 
insurance coverage, service availability, and program participation?
    What outcome measures are useful for evaluating short- or long-term 
cost-effectiveness of health, education, and supportive services for 
children with disabilities? What is the evidence regarding the cost-
effectiveness of service interventions (health related, educational, 
and supportive services) on outcomes for children with disabilities? 
How does this vary according to the stages of a child's development, by 
condition, level of functioning, socio-economic status, by disability?

D. Private Costs of Care

    A major policy concern is the level of out-of-pocket costs incurred 
by families to raise children with disabilities as compared to children 
without disabilities. Some evidence suggests that costs can vary 
greatly for children with identical diagnoses depending on families' 
living situations, the severity of the disability, and whether a child 
is institutionalized or receiving care at home.
    The following types of questions are illustrative: What are the 
extra out-of-pocket costs associated with raising children with 
disabilities relative to the costs of care for children without 
disabilities, i.e., child care, respite care, transportation, 
supplementary educational services, physical accommodations and 
assistive technology, specialized equipment, home care, therapeutic 
services, general supplementary services, medical and pharmaceutical 
expenses, and the opportunity costs of reduced parental labor force 
participation? Are there other private costs?
    How do estimated costs vary by the following classifications: Type 
of disability; severity of disability; family income; age, gender, 
race; institutionalization vs. non-institutionalization; SSI/non-SSI 
participation; coverage by Medicaid, private health insurance, or no 
insurance. What are the cost differences for children with disabilities 
on SSI, children with disabilities not on SSI, and children without 
disabilities?
    What are estimated total per capita costs including both private 
and public expenditures?

E. Financing of Services and Supports

    Over the past 20 years there have been significant changes in the 
breadth and scope of public financing for services to children with 
disabilities and their families. Although to a lesser extent, a private 
sector health insurance role has also evolved. Insufficient attention 
has been focused on the impact of these changes, either from the 
perspective of their impact on the lives of children with disabilities 
and their families, or with respect to the development of a 
comprehensive and coordinated policy regarding disabled children. For 
example:
Private Health Insurance
    What services are covered by private insurance plans? What are the 
limitations of private insurance coverage for special services such as 
physical, occupational, speech/language/hearing, and respiratory 
therapies, psychotherapies, other services, and durable or disposable 
goods? What are identifiable trends in private and public coverage and 
expenditures for rehabilitative services? How do insurers apply the 
criterion of ``medical necessity'' to the use of rehabilitative and 
therapy services by children with disabilities? What are alternative 
criteria?
    What approaches are used for risk adjustment for children with 
disabilities? How effective are they?
Medicaid/Title V
    What services are covered under which service authorities? Exactly 
what services are provided and billed under EPSDT; what are trends in 
EPSDT expenditures? What has been the impact of the TEFRA-134 (``Katie 
Beckett'') state plan eligibility option in states that have elected to 
use it; how do states control utilization and costs? What children 
receive special services through 1915(c) waivers; how do coverage and 
costs vary across states? What services do Title V agencies fund; what 
are inter-state variations in coverage and cost?
Educational Services
    What special services do school systems currently provide for 
children with disabilities (including services for the transition from 
school to work), where are these services provided, and how do services 
vary by age and type of disability? What are trends in total 
expenditures?
    What are trends in children receiving education services who are 
also eligible for SSI or Medicaid? How and to what extent are school 
systems billing Medicaid for IDEA services to children with 
disabilities, and under which authorities? What is the relationship 
between special education services, including parts B and H, and 
Medicaid? What trends can be anticipated in this relationship?
Program Interactions
    How do these programs/coverages interact, co-exist, or affect each 
other? What other public (state or substate) programs assist children 
with disabilities and their families including cash or voucher 
benefits?
Cash Assistance Versus Service Benefits
    Children with disabilities and their families receive assistance in 
very different ways: Through cash assistance like AFDC and SSI and 
service benefits like Medicaid and IDEA. How do these methods 
differentially affect families? What are the trade-offs of providing 
cash in lieu of services or vice versa?

F. System Organization

    Multiple funding sources and types of services create problems with 
accessing services as well as with managing their delivery and cost. 
Little is known about how families with children who are disabled deal 
with service systems and how states and localities have attempted to 
organize, integrate, and manage disparate services.
    How do children with disabilities and their families access 
services? How does entry via one system (e.g. school, Medicaid, acute 
medical care) predict access to services in other systems?
    How cost-effective are various approaches to case management used 
by children with disabilities (or subgroups) and their families, 
including families doing their own case management?
    What approaches have been proposed or tried to integrate acute and 
long-term care for children with disabilities? What features must be 
present in an integrated approach?
    What are the impacts of varying approaches to managed care and of 
state Medicaid reform efforts and other state health reform initiatives 
on children with disabilities? What other systems have been put 
together by states, localities, or private sector entities to serve 
children with disabilities in a comprehensive manner? What are their 
outcomes and costs?

Part III. Organization of Applications--Outline of Narrative 
Description

    All applications must contain the required Federal forms and a 
narrative description of proposed project. All pages of the narrative 
should be numbered consecutively. Applications should be limited to 30 
single-spaced typed pages, exclusive of forms, resumes, and budget. 
Each applicant must present their responses to one or more questions in 
the Issue Area(s) which they have selected for research. (See part II 
(A) through (F) and indicate how they fulfill the following 
requirements).
    Applications should be assembled as follows:

A. Abstract

    Provide a one-page summary of the proposed project.

B. Goals, Objectives, and Potential Usefulness of the Project

    Include an overview which describes the need for the proposed 
project; indicates the background and significance of the issue area(s) 
to be researched including a critique of related studies; the specific 
questions to be investigated; and describes how the proposed project 
will advance scientific knowledge and policy development in the area of 
children's disability.

C. Methodology and Design

    Provide a description and justification of how the proposed 
research project will be implemented, including methodologies, approach 
to be taken, data sources to be used, and proposed research and 
analytic plans. Identify any theoretical or empirical basis for the 
methodology and approach proposed.

D. Experience of Personnel/Organizational Capacity

    Briefly describe the applicant's organizational capabilities and 
experience in conducting pertinent research projects. Identify the key 
staff who are expected to carry out the research project and provide a 
curriculum vitae for each person. Provide a discussion of how key staff 
will contribute to the success of the project.

E. Budget

    Submit a request for Federal funds using Standard Form 424A and 
provide a proposed budget using the categories listed on this form.

Part IV. Receipt and Processing of Applications

A. Deadline for Submitting of Applications

    The closing date for submittal of applications is July 18, 1994. 
Applications must be postmarked or hand-delivered to the application 
receipt point no later than 5 p.m. on the closing date. Applications 
which do not meet the deadline are disqualified and will not be 
considered further. DHHS will send a letter to this effect to each late 
applicant.
    An application will be considered as meeting the deadline if it is 
either: (1) Received at, or hand-delivered to, the mailing address on 
or before the due date, or (2) postmarked before midnight of the 
deadline date and received in time to be considered during the 
competitive review process.
    Hand-delivered applications will be accepted Monday through Friday, 
excluding Federal holidays during the working hours of 9 a.m. to 5 p.m. 
in the lobby of the Hubert H. Humphrey building located at 200 
Independence Avenue SW., in Washington, DC. No faxes will be accepted. 
When hand-delivering an application, call 690-8794 from the lobby for 
pick up. A staff person will be available to receive applications.
    When mailing applications, applicants are strongly advised to 
obtain a legibly dated receipt from a commercial carrier (such as UPS, 
Federal Express, etc.) or from the U.S. Postal service as proof of 
mailing by the deadline date. If there is a question as to when an 
application was mailed, applicants will be asked to provide proof of 
mailing by the deadline date. When proof is not provided, an 
application will not be considered for funding. Private metered 
postmarks are not acceptable as proof of timely mailing.
    DHHS reserves the right to extend the deadline for, all proposals 
due to acts of God, such as floods, hurricanes, or earthquakes; or if 
there is a widespread disruption of the mail; or if DHHS determines a 
deadline extension to be in the best interest of the government. 
However, DHHS will not waive or extend the deadline for any applicant 
unless the deadline is waived or extended for all applicants.

B. Initial Screening

    Applications will be initially screened for compliance with the 
timeliness and completeness requirements. If judged in compliance, the 
application then will be reviewed by government personnel, augmented by 
outside experts where appropriate. Three (3) copies of each application 
are required. Applicants are encouraged to send an additional three (3) 
copies of their application to ease processing, but applicants will not 
be penalized if these extra copies are not included. There is a limit 
of 30 single-spaced typed pages, exclusive of forms, resumes, and 
budget and extraneous materials such as videotapes and brochures should 
not be included and will not be reviewed.

C. Review Process and Evaluation Criteria

    Applications will be evaluated by a panel of reviewers according to 
the criteria set forth below. Consequently, applicants should take care 
to ensure that all criteria are fully addressed in the application. The 
relative weights are shown in parentheses.
1. Goals, Objectives, and Potential Usefulness of the Project (40 
points)
    The potential usefulness of the objectives and how the anticipated 
results of the proposed project will advance scientific knowledge and 
policy development in the area of children's disability.
2. Methodology and Design (35 points)
    The appropriateness, soundness, and cost-effectiveness of the 
methodology, including research design, statistical techniques, 
analytical strategies, innovative and creative selection of existing 
data sets, and other procedures.
3. Experience and Qualifications of Personnel (25 points)
    The qualifications and experience of the project personnel for 
conducting the proposed research and indications of innovative 
approaches and creative potential.

Part V. Other Notices and Requirements

A. Legislative Authority

    The authority for this grant is contained in section 1110 of the 
Social Security Act (42 U.S.C. 1310).

B. Applications Regulations

    1. ``Grant Programs Administered by the Office of the Assistant 
Secretary for Planning and Evaluation'' (45 CFR part 63).
    2. ``Administration of Grants'' (45 CFR part 74).

C. Eligible Applicants

    Any university, agency of state or local government, or other 
agency whether organized as a for-profit or as a not-for-profit 
corporation. However, for-profit organizations are advised that no 
grant funds may be paid as profit to any recipient of a grant or 
subgrant. Profit is any amount in excess of allowable direct or 
indirect costs of the grantee.

D. Effective Date and Duration

    1. The grants awarded pursuant to this announcement are expected to 
be made on or about September 1, 1994.
    2. Projects will be from 12 to 17 months in duration.

E. Statement of Funds Availability/Award

    1. A total of $600,000 in FY 1994 funds has been set aside for 
grants to be awarded as a result of this announcement. Organizations 
submitting applications may propose a project at the dollar level they 
consider appropriate.
    2. The Government may make awards in the $50,000 to $100,000 range. 
Organizations may address either one or more questions in the Issue 
Area(s) they have selected for research within a single application.
    3. Nothing in this application should be construed as committing 
the Assistant Secretary to dividing available funds among all qualified 
applicants or to make any award. The selection of the final awards will 
be determined by the Assistant Secretary on the basis of the 
availability of funds and on the combination of grant applications 
which best address the Issue Areas.
    4. The Assistant Secretary also reserves the right to make 
additional awards over the $600,000 indicated in 1. above starting 
October 1, 1994 using Fiscal Year 1995 funds. These awards will also be 
in the $50,000 to $100,000 range and are estimated to total $400,000.

F. Reports

    The grantee must submit annual progress reports and a final report. 
The specific format and content for these reports will be provided by 
the project officer.

G. Application Instructions and Forms

    Copies of applications should be requested from and submitted to: 
Grants Officer, Office of the Assistant Secretary for Planning and 
Evaluation, U.S. Department of Health and Human Services, room 405-F, 
200 Independence Avenue, SW., Washington, DC 20201, phone (202) 401-
3951. No faxes will be accepted. Questions concerning the preceding 
information should be submitted to the Grants Officer at the same 
address.

H. Federal Domestic Assistance Catalog

    This program is not listed in the Catalog of Federal Domestic 
Assistance.

I. State Single Point of Contact (E.O. 12372)

    DHHS has determined that this program is not subject to Executive 
Order 12372, ``Intergovernmental Review of Federal Programs'', nor its 
implementing regulations at 45 CFR part 100. Applicants are not 
required to seek intergovernmental review of their applications within 
the constraints of E.O. 12372.

J. Components of a Complete Application

    A complete application consists of the following items in this 
order:

1. Application for Federal Assistance (Standard Form 424);
2. Budget Information--Non-Construction Programs (Standard Form 424A);
3. Assurances--Non-Construction Programs (Standard Form 424B);
4. Table of Contents;
5. Budget Justification for Section B Budget Categories;
6. Proof of Non-Profit Status, if appropriate;
7. Copy of the applicant's Approved Indirect Cost Rate Agreement, if 
necessary;
8. Project Narrative Statement;
9. Any appendices or attachments;
10. Certification Regarding Drug-Free Workplace;
11. Certification Regarding Debarment, Suspension, or other 
Responsibility Matters;
12. Certification and, if necessary, Disclosure Regarding Lobbying;
13. Supplement to Section II--Key Personnel;
14. Application for Federal Assistance Checklist.

    Dated: May 10, 1994.
David T. Ellwood,
Assistant Secretary for Planning and Evaluation.
[FR Doc. 94-12160 Filed 5-18-94; 8:45 am]
BILLING CODE 4151-04-M