2019 TASH Conference

Perhaps the most important U.S. public policy ever for "Building Diverse and Inclusive Communities" in regard to people with intellectual disability and related development disabilities occurred in 1981 when Congress authorized the Home and Community Based Services (HCBS) Waiver program. The HCBS Waiver provided an alternative to the Intermediate Care Facility (ICF) program (with its clear "institutional bias") by allowing Medicaid funds for Long Term Services and Supports to be spent supporting people to live in their local communities. It took until 2001 for HCBS spending to surpass ICF spending, but the latest figures show that spending for HCBS waivers (34.5 billion) is now more than three times that of the ICF program (11.0 billion). The growth of HCBS waivers does not mean that the path to accessing funding is easy or straightforward for people with disabilities or family members. Long waiting lists for HCBS waiver services (i.e., people wanting waivers exceeds the available supply) have been a perpetual problem, and the fact that states have their own rules and there are so many varieties of HCBS waivers adds to the complexity of accessing the services. This session will include two presentations on the HCBS waiver. Findings from in-depth interviews with 10 families who have successfully navigated the HCBS waiver process forms the basis for the first presentation. Themes from interview data will be shared, and guidance for families seeking HCBS waivers as well as recommendations for policymakers will be provided. The second presentation reports findings from focus group interviews to gather insights on assessment items that can be used to determine the number and type of supports that can be provided through HCBS waiver programs serving people with intellectual disability and related developmental disabilities compared to HCBS waiver programs serving people with aging-, physical-, and mental health-related disabilities. The similarities and differences in assessing support needs that were aligned with different disability populations has important implications for how disability is understood and establishing support priorities for different disability groups.

Self-Directed Supports (SDS) are a service delivery model for individuals and families who wish to exercise more choice, control and authority over their supports (Home & Community-Based Services 1915(c). SDS is founded on the principles of self-determination. With SDS, the person with the disability or their designated representative (typically a family member) has employment authority. Employment authority allows for the recruiting, hiring, training, managing, supervising, scheduling and terminating employees. Typically, personal assistants (PAs) or Direct Support Professionals (DSPs) are hired to provide physical, medical and/or behavioral supports. The person with the disability or their designated representative is expected to provide the training needed to support the individual. They may be assisted by a community specialist or a behavior therapist. Preparation for training staff begins with a detailed job description and a listing of skills needed to meet those job responsibilities. Typically, a support manual is developed that describes supports needed for activities of daily living, communication, vocational, recreational, and community supports. If an individual exhibits challenging behavior, positive behavior support may be need in some or all of these areas. Training focuses both on the proactive principles of positive behavior support and the addressing of individual needs. This may be done through online modules, a review of the person's individualized support plan, shadowing an experienced support staff or family member, viewing videos of successfully resolved situations of challenging behavior and intermittent coaching. Successful training is ongoing and includes allowing Direct Support Professionals to debrief when challenging behavior has occurred. It is also collaborative. As Direct Support Professionals become more skilled and spend more time with the person they are supporting, they have insights into ways to prevent challenging behaviors from occurring, to teach new skills that meet the person's needs and how to intervene when challenging behavior does occur. Regular team meetings allow for these insights to be shared among support staff and other members of the person's support network. The number of individuals and families choosing self-direction has increased tremendously over the past twenty years as self-directed services have become as providing persons with disability with greater choice, control, and self-determination (Dicarlo, 2016). Participants report receiving unique supports that improve quality of life outcomes (Foster, Brown, Phillips & Carlson, 2005). The most significant finding repeatedly reported has been the increased satisfaction that accompanies participation in self-direction (Matthias & Benjamin, 2008; Gross, Blue-Banning, Turnbull & Francis (2015). As use of this model continues to grow, APBS should turn its attention to offering individuals and families assistance in providing high-quality training for DSPs. Participants will receive a template for creating an individualized support manual, evaluate a number of training formats and develop an outline for a successful team meeting.