Starting early in life, individuals with intellectual and developmental disabilities (ID/DD), and their families are often managing multiple delivery systems that provide services, resources, and supports to meet the needs to live and thrive in the community. Managing these delivery systems are complicated. From early adolescence through young adulthood, for students with ID/DD and families, another complex layer to manage is added. Students with ID/DD and families begin the youth transition services, often not easy to understand nor navigate yet intended to prepare students for successful transition and full integration to community living.
Unfortunately, many students exit school without pre-employment skills, plans for employment, or placement in postsecondary education. A significant number directly enter segregated institutions, including day programs and sheltered workshops, often earning sub-minimum wages. Time spent in segregated institutions limits integration and participation in community life.
The Institute for Community Inclusion estimates that currently there are approximately 8,000 community rehabilitation providers (CRP) nationwide offering vocational services to youth and adults with disabilities. Over two-thirds of the CRPs provide employment and day services (e.g., non-work services) to youth and adults with ID/DD. Over eighty percent of those are served in employment and day services are people with ID/DD, with the majority supported in facility-based and non-work services.
Nationally, there is a growing emphasis for employment services and supports to focus on competitive integrated employment for youth and adults with ID/DD. States are expanding employment options for youth and adults with ID/DD under federal policy, including the Home and Community Based Services Settings Rule (HCBS), and Workforce Innovation and Opportunity Act (WIOA). WIOA defines and prioritizes integrated employment. The act limits entry into sheltered workshops and stipulates that anyone under the age of 24 must try integrated employment before placement into a sub-minimum wage setting. Some states are proposing modernization of day services using the Home and Community Based Services transition process to convert facility-based day services to a hub-and–spoke model, phasing out shelter workshops. States are also increasing their Employment First efforts. Forty-six states have some type of Employment First movement and at least thirty states have official Employment First legislation or policies. As a result, CRPs are under increasing pressure to shift from providing facility-based work and non-work services to a focus on competitive integrated employment and community life engagement.
Other challenges of transition to adulthood, for young adults with ID/DD, is transition to the adult health care systems. After exiting school, some access to specialized pediatric services may also end. As youth and young adults become more independent, they may have greater challenges in taking on primary responsibilities in managing their health care needs. Achieving this independence requires organized transition processes to gain self-advocacy health care skills, to prepare for an adult model of care, and to transfer to new providers. Accessing appropriate medical services is particularly complicated for youth with complex health care needs. Many see multiple specialists, sometimes in different health care systems. It takes time and resources to coordinate the services received from different points of care. National data reveal that most youth and adults with ID/DD fail to receive needed planning services to successfully transition from pediatric care to adulthood healthcare.
Systemic challenges in supporting a seamless transition to participation in community living includes significant workforce shortages and high turnover rates among direct service providers (DSP); access to safe, affordable, and accessible housing (which is frequently unavailable or too costly); and lack of affordable, accessible transportation. Further, the nature of the developmental disability delivery systems with fragmented services are complex and challenging. Payments for services may come from different sources, and each service has its own eligibility rules and requirements. Thus, it makes it difficult for many to receive all needed services and supports. Such obstacles often impede youth and adults with ID/DD from securing and retaining employment, attending postsecondary education programs, and living in the community.
The several weaknesses across youth transition services leaves many with needs unserved and/or underserved. This calls for improvements to youth transition services to facilitate changes and better coordinate supports across a wide range of services including health care, social supports, leisure, career guidance, housing, education, financial literacy, and employment. Significant improvements will lead to positive post school outcomes including community living for youth and adults with ID/DD.
AoD seeks to fund up to ten planning grants for existing UCEDDs to convene partnerships in states to develop plans for community integration, through the creation of sustainable community-based transition pilots, for youth and adults with ID/DD.
Below are the key activities for the planning grants to be described in the application.
Each applicant must establish a partnership to develop the plan for the community based transition pilot. The partnership must be led by a University Centers for Excellence in Developmental Disabilities Education, Research, and Service (42 U.S.C. 15061 et seq ) and include but not be limited to, the following:
UCEDD, as the lead
Non-profit community-based service provider organization(s)
Consumer Advisory Council (CAC) affiliated with the UCEDD
Local businesses or local governments or other key stakeholders
State self-advocacy organization
Youth and adults with ID/DD
State DD Partners
The applicant should describe how they will create or build upon an existing partnership that meets the requirements of the partnership. The application should include a signed Memorandum of Understanding (MOU) between the members of the partnership. The agreement should describe how the entities participated in the development of the application and plan to work together to ensure goals and objectives included in the application will be achieved.
2. Each partnership will use a formative and consensus-based process to establish a community-based plan.
The application should describe the consensus-based process to be used in developing the plan;and how it provides for the full participation of all partnership members.
The applicant should outline methods to be used to ensure input from all partnership members is received and considered.
3. Each partnership will conduct a comprehensive review and analysis of the transition services in the state as a basis to inform the development of the plan.
The applicant should describe how information will be gathered to complete this analysis and commit to including the following:
A range of transition models, addressing critical transition points, including but not limited to the following: pediatric to adult healthcare; school to postsecondary education and/or competitive integrated employmentadult day programs to competitive integrated employment;living in intermediate care facilities, nursing homes, group homes, or with aging parents or caregivers, to independent living with support; and foster care to independent living in the community;
Analysis of current transitions services, including gaps in services/models;
The state’s current systems or policies to support transitions to community living;
Strategies currently used to support a full range of transition services and supports for youth and adults with ID/DD in the state;
Analysis of regulations, policies and procedures at the state and local level to support youth and adults with ID/DD transitioning to community living;
Identification of existing partnerships and organizational commitments in supporting youth and adults with ID/DD transitioning to community living;
Other state-specific characteristics relating to transition services for youth and young adults with ID/DD to community living and community based transition programs;
Evidenced-based and promising practices; and,
Barriers and action steps to address these barriers.
Applicants should also include an initial list of resources and information that they intend to use as part of the comprehensive review and analysis to inform the partnership in developing the plan.
4. Each partnership will be expected to have a comprehensive plan, at the end of the planning year.
The application should describe how the following plan criteria will be used when developing and evaluating the work completed at the end of the planning grant.
The plan should include the following criteria:
A workable plan that:
Is actionable, practical and realistic
Addresses problems and proposes remedies and solutions
Identifies future partners in implementation; and
Can be immediately acted upon and/or sets forth clearly the prerequisites to implementation.
The plan should identify promising practices, perceived barriers, commitment to core principles, and a full-range of methods to advance the implementation of a sustainable community based transition pilot for youth and adults with ID/DD transitioning to community living.
The plan should also include sustainability of the partnership and project with or without continued federal funds.
Youth and Adults includes individuals with ID/DD from ages 14 through adulthood.
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Steinway C, Gable JL, Jan S., and MINT.Transitioning to Adult Care: Supporting Youth withSpecial Health Care Needs. PolicyLab at Children’sHospital of Philadelphia; 2017. Retrieved fromhttp://bit.ly/E2A_TransitionsOfCare; www.pediatrics.org/cgi/doi/10.1542/peds2011-0969;pediatrics, volume 128, Number1, July 2011,www.aapublications.org/news
Successful Transitions: A Report of the NCIOM Task Force on Transitions for People with Developmental Disabilities, July 2017;http://doi.org/10.1352/1934-9556-54.4.260.