[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]
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