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DEVELOPMENTAL DISABILITIES (GENERAL)
Program Description, Context, Legislative Intent and Broad Program Goals
There are nearly 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, as well as the continuous need for individually planned and coordinated services.
The major goal of the Developmental Disabilities program is to assist people with developmental disabilities to reach maximum potential through increased independence, productivity, and community integration. ACF’s partnerships with State governments, local communities, and the private sector are comprehensive: prevention, diagnosis, early intervention, therapy, education, training, employment, and community living and leisure opportunities.
In ACF, the Administration on Developmental Disabilities (ADD) and its partners in the developmental disability (DD) community have been participating in the development of the "Roadmap"--six program goals and four program-specific outcome measurement areas. The first goal (employment) is discussed in this section of the GPRA performance plan. Other goals appear in appropriate sections later in this plan.
ACF's DD grantee partners fall into four complementary groups. Each serves individuals with developmental disabilities and their families in a non-duplicating, unique, and interlocking way:
- Developmental Disability Councils (DDC) in each State promote--through systemic change, capacity building, and advocacy services--in a State-wide, consumer and family-centered, comprehensive system and a coordinated array of services, supports, and other assistance for individuals with developmental disabilities and their families;
- Protection and Advocacy (P&A) systems in each State protect the legal and human rights of individuals with developmental disabilities;
- University Affiliated Programs (UAP) provide interdisciplinary pre-service preparation of students and fellows, community service activities, and the dissemination of information and research findings; and
- Projects of National Significance (PNS) provide funding through grants and contracts to support the development of national and State policy to enhance the independence, productivity, and integration and inclusion in their communities of individuals with developmental disabilities. Additionally, funding is provided under the Family Support Program for States to create or expand statewide systems change.
Program Activities, Strategies and Resources
To achieve desired outcomes and meet the Roadmap goals, DD programs and ACF will use approaches consistent with their complementary missions. Therefore, DDCs that assist in developing comprehensive and coordinated service delivery systems through systemic change, capacity building, and advocacy activities will employ strategies that include demonstration of new approaches, outreach training, public education, and informing policy makers. P&As will use strategies that protect the human and legal rights of individuals with developmental disabilities. These include legal, administrative, and other remedies, information and referral, investigating incidents of abuse and neglect, and educating policy makers. UAPs will provide interdisciplinary training for professional and direct care personnel, community services, technical assistance, and will disseminate information and research findings. The PNS program provides ACF with the opportunity to focus funds on emerging areas of concern for individuals with developmental disabilities, their families, the DD program components, and other interested public and private non-profit entities.
Program Coordination, Partnerships and Cross-cutting Issues
To improve and enhance services for children with developmental disabilities and their families, ACF coordinates closely with the Social Security Administration and the Department of Education. Collaboration within DHHS among HCFA, HRSA, and ACF is essential. Regarding employment for working age adults, the same internal partners coordinate with DoL and DoT. In both cases, participation by special committees, such as the President’s Committee on Mental Retardation and the President’s Committee on Employment of People with Disabilities, will enhance the effort. State Medicaid and human service agencies are essential partners, and the public schools and community services networks assist as well. Finally, the private sector has the potential to employ individuals with disabilities, to the ultimate advantage of both employees and employers.
Program-wide Performance
With the primary responsibility for developmental disabilities programs lodged in the States, ACF's ability to affect goal achievement is limited. ACF works in partnership with State-level program entities toward achieving the goals they set.
In FY 2000, all appropriated funding was made available to DD Councils and P&A systems in the States. UAPs are funded, both for core funding and also for Training Initiative Projects. Under the PNS, funding is provided under three priority areas. The three priorities are "Mobilizing for Change/Rapid Deployment of Good Ideas," "Bridging the Digital Divide: Building Content," and "Managing our Program Knowledge through Web Improvement." Additionally, projects were funded under the Family Support program. In FY 2000, ADD set a target to leverage $2.4 million from its Federal partners in support of positive outcomes for people with developmental disabilities in terms of employment, housing, education, health, and community support as a result of ADD intervention. To ensure the quality of programs, ADD has continued to provide technical assistance to its partners.
In FY 2000, the number of adults with developmental disabilities who obtained integrated jobs (measure 1.3a) was below the projected target. DD Councils in 45 States and Territories reported 3,788 integrated jobs as a consequence of their intervention, 60% below the target of 9,517. States, responding to technical assistance provided by ADD and by their peers, revised their methods of data collection resulting in the lower number. For this reason, the baseline year has been revised from FY 1999 to FY 2000. Interventions by DD Councils include promoting job fairs, training job coaches, advocacy to employers to hire more people with developmental disabilities, and creating State-level entities that continue this work on an ongoing basis.
The number of businesses/employers that employ and support people with developmental disabilities (measure 1.3b) missed the target level by a significant margin (similar to the achievement of FY 1999). DD Councils in 37 States and Territories reported 1,324 employers/businesses employing and supporting people with developmental disabilities, less than the target of 4,353. State DD Council interventions included educating employers on the benefits of hiring and issues needed to ensure successful employment. Employers were encouraged to hold job fairs targeted to people with developmental disabilities.
Performance for the dollars leveraged from ADD's Federal partners (measure 1.3c) was met ($2.4 million).
Data Issues
ACF and its DD partners worked together in a consensus-building process to develop a wide range of measures, grouped within agreed-upon categories, that all partners could accept as representative, when taken as a whole, for their programmatic interventions. These numerous measures were incorporated into program reporting instruments to permit national aggregation of future-year targets and past-year actual performance for DD's State-based programs. A few programmatically significant measures were selected for reporting in this performance plan. DD partners in the States are continuing to develop experience with projecting future-year targets and collecting accurate data for past-year performance.
Partners generate both performance targets and data reports. The targets generated by P&As (measure 7.2a) and UAPs (measure 7.3a) are developed in their annual planning process. The targets generated by DDCs (measures 1.3a-b, and 2.1a) are developed for a three-year period and updated annually. The targets for the next triennial report, FY 2001 to 2003, are included in this plan. Data on actual performance for a particular fiscal year are reported in annual program performance reports (PPRs), submitted in January of the following fiscal year. University Affiliated Programs reporting is delayed due to the offset fiscal year for universities.
During the year, ADD achieved a breakthrough in data collection by electronically soliciting annual reports with outcome data from its partners regarding their FY 1999 performance and FY 2000 targets. This greatly facilitated submission and analysis of performance measure data by ADD's geographically dispersed partners. The Electronic Data Submission (EDS) system is now in place and will continue to be used through FY 2002. The system consists of an extranet, using Internet-based technology and password protection. The grantees of ADD submit their reports annually by accessing the Internet, at the following URL: https://extranet.acf.hhs.gov; where they enter a "Grants Extranet ID" and a password to access their portion of the extranet that contains the necessary data entry forms for their reports. These forms include all the necessary fields for submitting complete reports. Forms completed by a grantee become accessible to reviewers in ADD. When grantees’ reports are approved, they are locked into the ADD Management Information System (MIS). The data in the ADD MIS about ADD grantees and programs is now available to ADD staff through report-generating software and the extranet. Because grantee submissions can be analyzed quickly and accurately, and readily compared with target data, these automated systems enable ADD to more effectively track data and identify anomalies requiring correction by grantees.
States, State and local school systems and the network of related services providers must be able to sustain their commitment if State targets are to be achieved. For example, to meet employment goals (measures 1.3a-b) for working-age adults with developmental disabilities, jobs will need to be available for those who are qualified. This will depend, in large part, on economic conditions in States and localities. (Similar outside influences and constraints apply to health, housing, community support, and education.) Each State is responsible for selecting the performance goals that it will target for a particular year. Therefore, the number of States that project targets and report on performance varies from year to year.
Verification and validation of data will occur through ongoing review and analysis of annual electronic reports, technical assistance site visits, and input from individuals with developmental disabilities, their families and other partners. Interagency agreements and memoranda of understanding will provide the data for the last set of measures, (measure 1.3c) "dollars leveraged".
Various data sources are used to report on program targets and program outcomes, such as annual program performance reports, planning reports, and administrative records. These sources will be tracked through the EDS system. The ADD MIS system based on the results from the EDS will be used to compare targets and actual performance of ADD partners. When anomalies and variations from expected targets occur, ADD will work with individual partners to improve the outcomes reported and gain insight into the reason for an anomaly, both directly and with help from technical assistance contractors. Partners are encouraged to pursue corrective actions to ensure that data are valid.
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