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Part II: Program Description and Performance Analysis
7.5 DEVELOPMENTAL DISABILITIES
| Request,
Full Costs, & Annual Measures |
FY 2003 | FY 2004 | FY 2005 |
| Budget Request (Program Level) | $159.8 | $164.8 | $164.9 |
| Estimated Full Cost | $165.2 | $170.4 | $170.9 |
| Program Goal: Improving Quality of Life for Persons with Developmental Disabilities Incorporates measure: FY 2003: 7.5a-c and g; FY 2004: 7.5a-d; FY 2005: 7.5a-d. |
$165.2 | $170.4 | $170.9 |
* The distribution of full costs to performance measures may not equal the full cost of the performance program area.
ALLOCATION METHODOLOGY EXPLANATION: Performance measures represent 100% of full cost of program.
PROGRAM DESCRIPTION AND CONTEXT
The Administration on Developmental Disabilities (ADD) is responsible for the implementation of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). The major goal of the four developmental disabilities grant programs is to assist individuals with developmental disabilities in reaching their maximum potential through increased independence, productivity, inclusion, and community integration. ADD state program partners work with state governments, local communities, and the private sector to reach goals relating to prevention, diagnosis, early intervention, therapy, education, training, employment, and community living and leisure opportunities. Grants fund activities in eight areas: quality assurance, education and early intervention, child care, health, employment, housing, transportation and recreation activities. ADD and its partners in the developmental disabilities (DD) community have the lead in pursuing these goals.
There are approximately four million Americans with developmental disabilities. Developmental disabilities are severe, chronic disabilities attributable to mental and/or physical impairment, which manifest before age 22 and are likely to continue indefinitely. They result in substantial limitations in three or more of the following areas: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. Persons with developmental disabilities require individually planned and coordinated services.
DD grantee partners fall into four complementary groups. Each has a mandated mission to improve the lives of individuals with developmental disabilities and their families. Each uses strategies that contribute to their collective mission. Each works with state and local entities, and the private sector, to achieve positive outcomes for individuals with developmental disabilities and their families.
- State Councils on Developmental Disabilities (SCDD) pursue systems change, capacity building, and advocacy services in order to promote service systems and supports that are consumer- and family-centered, comprehensive, and coordinated. SCDDs support activities such as demonstration of new approaches, outreach training, public education, and information to policy-makers.
- Protection and Advocacy (P&A) systems, one in each state, protect the legal and human rights of individuals with developmental disabilities. P&A strategies include legal, administrative, and other remedies; information and referral; investigation of incidents of abuse and neglect; and education of policy-makers.
- University Centers for Excellence in Developmental Disabilities (UCEDDs) are components of a university system or are public or not-for-profit entities associated with universities. UCEDDs provide interdisciplinary pre-service preparation of students and fellows, community service activities, and the dissemination of information and research findings.
- Projects of National Significance (PNS) is a discretionary program providing ADD with the opportunity to focus funds on emerging areas of concern. This program supports local implementation of practical solutions and provides results and information for possible national replication. PNS also supports technical assistance; research regarding emerging disability issues; conferences and special meetings; and the development of Federal and state policy. Additionally, funding is provided for states to create or expand statewide systems change.
Program Partnerships
Partnerships at the state and Federal levels represent the key to successful developmental disabilities programs. In the states, the strong ties among the developmental disabilities grantees, sometimes referred to collectively as the Developmental Disabilities Network, have been an important factor to the success of the programs, ADD tracks collaboration in each of the states to ensure that they are taking advantage of this Network. At the Federal level, ADD coordinates with the Social Security Administration, the Department of Education, the Department of Labor, the Department of Transportation, and other agencies. Within HHS, ADD/ACF works with CMS, HRSA, and the President’s Committee on Individuals with Intellectual Disabilities. Joint projects such as the effort to promote inclusive child care (i.e, participation of children with disabilities in child care available to other children), are being developed by ADD and the Child Care Bureau.
PROGRAM PERFORMANCE ANALYSIS
| Performance Measures for FY 2003 | Targets | Actual Performance | Reference (Relevant strategic goal in the HHS Strategic Plan) |
|---|---|---|---|
| PROGRAM GOAL: Increase entry into, and retention of, employment for individuals with developmental disabilities, consistent with their interests, abilities, and needs. | |||
| (old) 7.5a. Achieve the targeted number of adults with developmental disabilities who obtain integrated jobs as a result of DD program intervention. | FY 04:
Dropped FY 03: 6,834 FY 02: 3,850 FY 01: 3,800 FY 00: 9,517 FY 99: 9,517 |
FY 03: 3/04 FY 02: 5,086 FY 01: 5,854 FY 00: 3,788 (Rev. Baseline) FY 99: 8,959 FY 98: 9,665 FY 97: 6,945 |
|
| Former measure replaced by above measure: Achieve the targeted number of businesses/employers that employ and support individuals with developmental disabilities as a result of DD program intervention. | FY 03: Dropped FY 02: 1,400 FY 01: 1,350 FY 00: 4,353 FY 99: 4,353 |
FY 02: 2,227 FY 01: 1,813 FY 00: 1,324 FY 99: 1,113 |
|
| PROGRAM GOAL: Increase the funding leveraged by grantees in the developmental disabilities programs in support of health initiatives. | |||
| (old) 7.5b. Leverage the targeted dollars from ADD's Federal partners to support positive outcomes for individuals with development disabilities for employment, housing, education, health, and community support as a result of ADD intervention (dollars in millions). | FY 04: Dropped FY 03: $2.4 FY 02: $2.4 FY 01: $2.4 FY 00: $2.4 FY 99: $3.5 |
FY 03: $1.0 FY 02: $1.17 FY 01: $1.1 FY 00: $2.4 FY 99: $2.1 (Baseline) FY 98: $2.6 |
|
| PROGRAM GOAL: Increase the opportunities of adults with developmental disabilities to choose where and with whom they live and to have the services they need to support these choices. | |||
| (old) 7.5c. Achieve the targeted number of individuals with developmental disabilities owning or renting their own homes as a result of DD program intervention. | FY 04: Dropped FY 03: 4,015 FY 02: 8,000 FY 01: 7,500 FY 00: 2,132 FY 99: 2,079 |
FY 03: 3/04 FY 02: 5,921 FY 01: 4,013 FY 00: 7,308 (Rev. Baseline) FY 99: 34,904 FY 98: 19,649 |
|
| PROGRAM GOAL: Increase the number of students with developmental disabilities who reach their educational goals. | |||
| (old) 7.5d. Increase the number of students with developmental disabilities who are served in more integrated/inclusive educational settings as a result of DD program intervention. | FY 03: Dropped FY 02: 11,500 FY 01: 11,000 FY 00: 8,800 FY 99: 8,000 |
FY 02: 9,895 FY 01: 10,288 FY 00: 10,054 FY 99: 10,901 (Baseline) |
|
| PROGRAM GOAL: Increase the numbers of individuals with developmental disabilities receiving the services and supports they need to live and work in the community. | |||
| PROGRAM GOAL: Increase the number of individuals with developmental disabilities and family members acquiring knowledge and skills necessary to access needed health care services. | |||
| (old) 7.5e. Increase the number of health care providers trained to meet the health needs of individuals with developmental disabilities as a result of DD program intervention. | FY 04:
Dropped FY 03: 4,200 FY 02: 4,200 FY 01: 5,000 FY 00: 4,825 FY 99: 4,000 |
FY 03: 4,127 FY 02: 4,055 FY 01: 4,112 FY 00: 4,032 FY 99: 4,100 FY 98: 3,733 |
HHS 3.5 |
| COSTS
ASSOCIATED WITH MEASURES % of Full Costs FY 2003: 100% (Measures 7.5a-c and g) |
|||
| Total Funding
(dollars in millions)
See detailed Budget Linkage Table in Appendix A-12 for line items included in funding totals. |
FY 03: $159.8 FY 02: $140.5 FY 01: $133.5 FY 00: $122.2 FY 99: $119.2 |
||
The Developmental Disabilities program was assessed by OMB under the Program Assessment Rating Tool (PART). Lengthy discussions with OMB resulted in the following long-term strategic outcome goals and supporting annual indicators.
| Performance Measures for FY 2004-5 | Targets | Actual Performance | Reference (Relevant strategic goal in the HHS Strategic Plan) |
|---|---|---|---|
| Long-term goal: By the end of FY 2007, percentage of individuals with developmental disabilities who are independent, self-sufficient, and integrated into the community will increase to 14 percent. | |||
| 7.5a. Increase the percentage of individuals with developmental disabilities who are independent, self-sufficient and integrated into the community. | FY 05:
13.42% FY 04: 13.20% FY 03: 13.07% |
FY 05: FY 04: FY 03: FY 02: 12.94% (baseline) |
HHS 6.1/6.3 |
The following three indicators will determine performance for the above measure:
|
|||
| Long-term outcome goal: By the end of FY 2007, the percentage of trained individuals who are actively working to improve access of individuals with developmental disabilities to services and supports will increase to 94 percent. | |||
| 7.5b. Increase the percentage of trained individuals actively working to improve access of individuals with developmental disabilities to services and supports. (Developmental). | FY 05: 93.13% FY 04: 92.76% |
FY 05: FY 04: FY 03: FY 02: 92.26% (baseline) |
HHS 6.1/6.3 |
The following two indicators will comprise the formula to determine performance for the above measure:
|
|||
| Long-term outcome goal: By the end of FY 2007, the percentage of individuals who have their complaint of abuse, neglect, discrimination, or other human or civil rights corrected will increase to 93 percent. | |||
| 7.5c. Percentage of individuals who have their complaint of abuse, neglect, discrimination or other human or civil rights corrected compared to the total assisted. | FY 05: 91% FY 04: 88% |
FY 05: FY 04: FY 03: 9/2004 FY 02: 87% (baseline) |
HHS 6.1/6.3 |
| The following
indicator will be used to identify the denominator for the above measure:
1. Number of clients served by the P&A. |
|||
| 7.5d. Decrease the annual cost-per-grant management. [E] (Developmental) | FY 05: TBD FY 04: TBD |
FY 05: FY 04: |
EFFICIENCY MEASURE |
| COSTS
ASSOCIATED WITH MEASURES % of Full Costs FY 2004: 100% (Measures 7.5a-d) FY 2005: 100% (Measures 7.5a-d) |
|||
| Total Funding (dollars in millions) See detailed Budget Linkage Table in Appendix A-12 for line items included in funding totals. |
FY 05: 164.8 FY 04: 164.8 FY 03: 159.8 |
||
Summary of Program Performance
In FY 2003, all appropriated funding was made available to State Councils, to P&A systems, and to UCEDDs. Under the PNS, funding was provided to existing projects as well as to a new priority. In order to ensure the quality of programs, ADD has continued to fund technical assistance projects for grantees with PNS funds.
Under the PNS program, funding was awarded for a new priority area, Family Support 360, which will provide family support services planning grants for one-stop delivery models and one-year projects. The planning phase of these projects will proceed in FY 2004. In FY 2005 and FY 2006, some planning projects will receive Federal funding for implementation. These family support grants will assist families of children with disabilities, including foster and adoptive families, to care for their children at home.
New in FY 2003, the Help America Vote Act (HAVA) provided funding for P&A Systems ($2 million) and to states ($13 million) for Election Assistance for Individuals with Disabilities (EAID). $140,000 was awarded for training and technical assistance grants to establish access to the voting process for individuals with disabilities.
ADD dropped a number of measures: the education measure (7.5e) was dropped in FY 2003 and four measures (7.5a, b, c, and d) were dropped in FY 2004 (employment, housing, leveraging federal funds, and health care provider training). These were replaced by measures that focus on support for life in the community; remedying complaints of abuse, neglect, and loss of rights in the community; and acquiring knowledge and skills to access health care services.
Data Quality: Outcome data for a particular fiscal year are reported in annual program performance reports (PPRs), submitted in January of the following fiscal year. The PPRs are submitted by the Electronic Data Submission (EDS) system.
Because the DD Act provides maximum flexibility to SCDDs, P&As, and UCEDDs in setting goals and objectives based on consumer input, not all states focus on community issues or health care. However, grantees are encouraged to track these issues. Annual program performance reports from grantees are the primary data sources which are tracked through the EDS system.
Data Availability: The EDS database is used to compare targets and actual performance of ADD grantees. Verification and validation of data occur through ongoing review and analysis of annual electronic reports, technical assistance site visits, and input from individuals with developmental disabilities, their families and others. ADD works with individual grantees, with assistance being provided by technical assistance contractors, to gain insight into the causes of anomalies and variations in the data. ADD requires grantees to take corrective actions to ensure that data are valid.
Measure by Measure Presentation of Performance
ADD is in the process of further refining its performance measurement system. While several of the following measures were dropped in an effort to reduce the total number of measures and to focus on broader outcome measures, such as services and supports for life in the community and quality assurance of safety in the community, it is anticipated that these measures will also be replaced. Although some of the measures discussed below will not be used in the future, this section highlights grantee performance against them in FY 2003.
PROGRAM GOAL: Increase entry into, and retention of, employment for individuals with developmental disabilities, consistent with their interests, abilities and needs.
| FY 2003 Plan | |
| 7.5a. | Achieve the targeted number of
adults with developmental disabilities who obtain integrated jobs
as a result of DD program intervention Data Source: Program Performance Reports (PPRs) of State Councils on Developmental Disabilities |
ADD exceeded the target of improving competitive employment
of persons with developmental disabilities. Performance under the housing
measure fell well short of the target because the target was overly ambitious,
and targets have since been amended to reflect more reasonable expectations.
The number of adults with developmental disabilities who obtained integrated jobs in FY 2002 surpassed the target by 32 percent, but represented a 13 percent decrease from the previous year. There is concern that the target set for FY 2003 will be too ambitious.
| Achieve the targeted number of
businesses/employers that employ and support individuals with developmental
disabilities as a result of DD program intervention. Data Source: Program Performance Reports (PPRs) of State Councils on Developmental Disabilities |
The number of businesses/employers in FY 2002 that employ
and support individuals with developmental disabilities exceeded the target
level for the second time in two years, increasing 23 percent in FY 2002
over the previous year.
PROGRAM GOAL: Increase the funding leveraged by grantees in the developmental disabilities programs in support of health initiatives.
| FY 2003 PLAN | |
| 7.5b | Leverage the targeted dollars
from ADD's Federal partners to support positive outcomes for individuals
with developmental disabilities for employment, housing, education,
health, and community support as a result of ADD intervention (dollars
in millions). Data Source: ADD administrative records |
State Councils and UCEDDs share the lead in this effort
to engage Federal, state, and local entities in joint initiatives to focus
more resources on the availability of resources for individuals with developmental
disabilities. Although DD grantees receive limited funding, they can coordinate
with other entities at the Federal, state, and local levels. Leveraged
dollars in FY 2003 experienced a decrease from the previous year
PROGRAM GOAL: Increase the opportunities of adults with developmental disabilities to choose where and with whom they live and to have the services they need to support these choices.
| FY 2003 PLAN | |
| 7.5c. | Achieve the targeted number of
individuals with developmental disabilities owning or renting their
own homes as a result of DD program intervention. Data Source: Program Performance Reports (PPRs) of State Councils on Developmental Disabilities |
The number of individuals with developmental disabilities
who owned or rented their own homes in FY 2002 as a result of intervention
by ADD programs fell well short of the target, but improved over the previous
year.
PROGRAM GOAL: Increase the number of students with developmental disabilities who reach their educational goals.
| 7.5d. | Increase the number of students
with developmental disabilities who are served in more integrated/inclusive
educational settings as a result of DD program intervention. Data Source: Program Performance Reports (PPRs) of Protection and Advocacy Systems |
FY 2002 performance for this measure decreased 4 percent
below the previous year.
PROGRAM GOAL: Increase the number of individuals with developmental disabilities and family members acquiring knowledge and skills necessary to access needed health care services.
| 7.5e. | Increase the number of health
care providers trained to meet the health needs of individuals with
developmental disabilities as a result of DD program intervention. Data Source: UCEDD annual report |
Health care provider training data is influenced by the
need for UCEDDs to focus on an array of disability issues that affects
persons with developmental disabilities. Performance for this measure
is affected by factors such as the cost of providing health care generally,
and especially to people with disabilities. Access to health care is affected
by social attitudes concerning the desirability and potential for people
with developmental disabilities to benefit from full access to health
care and the attitudes of health care providers for this special needs
population. Because so few health care professionals are aware of the
special needs of persons with developmental disabilities, there is a significant
need for training.
PROGRAM GOAL: Increase the numbers of individuals with developmental disabilities receiving the services and supports they need to live and work in the community.
The following measures are the result of the program focusing on outcome measures which focus on life in the community; remedying complaints of abuse, neglect, and loss of rights in the community; and assisting individuals with developmental disabilities to acquire knowledge and skills to access health care services.
| FY 2004-2005 PLAN | |
| 7.5a. | Percentage of individuals with
developmental disabilities who are independent, self-sufficient and
integrated into the community will increase. (New). Data Source: Program Performance Reports (PPRs) of State Councils on Developmental Disabilities |
State Councils are responsible for increasing the number
of individuals with developmental disabilities receiving services and supports necessary for living in the community. This measure encompasses
five areas: employment, housing, transportation, health services, and
education. The programs in the states focus on three approaches to promoting
life in the community: State Councils work to create systems change within
service systems; public, professional, and business opinions and attitudes
are improved through educational effort.
| 7.5b. | Percentage of trained individuals
who are actively working to improve access of individuals with developmental
disabilities to services and supports will increase. (New). Data Source: Program Performance Reports (PPRs) of State Councils on Developmental Disabilities and University Centers of Excellence in Developmental Disabilities |
Support of individuals with developmental disabilities living
in the community, as required under the Olmstead Supreme Court decision
has been growing. This measure tracks program efforts to promote availability
of services and supports necessary to individuals with developmental disabilities
living in the community.
| 7.5c. | Percentage of individuals who
have their complaint of abuse, neglect, discrimination or other human
or civil rights corrected will increase. (New). Data Source: Program Performance Reports (PPRs) of Protection and Advocacy Systems |
Protection and Advocacy Systems have the lead in this effort
to pursue the safety of individuals with developmental disabilities living
in the community. They use various strategies to protect and advocate
for individuals with developmental disabilities, including individual
advocacy. This measure tracks program advocacy efforts using strategies
such as negotiation and mediation, provision of technical assistance to
other advocates and to self-advocates, attendance at administrative hearings,
and finally, when necessary in a limited number of cases, pursuit of litigation.
| 7.5d. | Decrease the annual cost-per-grant
management. (Developmental) Data Source: Administrative records |
The gross cost to manage a grant in FY 2002 (August-July)
and FY 2003 (August-July) decreased from $8,242 to $4,998, a 39 percent
decrease. These figures were derived by dividing the salary of ADD staff
by the number of grants managed in a 12-month time period. This measure
is developmental. ADD recognizes that these numbers provide an approximate
metric for tracking annual cost-per-grant management. We plan to refine
this measure and include more specificity, e.g. the amount of time ADD
staff invest on grant management.
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