ASD Adult Day Programs and Support Services: A Bleak Landscape and Call to Action
Program Design/Plan
People with autism present unique challenges to those hoping to develop an appropriate curriculum for a day program. Currently, there do not exist enough program models that are designed specifically for the needs of people with autism. Too often, day programs are designed for others with developmental disabilities and do not accommodate the specific characteristics of those with autism. The uniqueness of the autism population calls for a qualitatively different approach to programming. Staff must be thoroughly trained to understand that people with autism think and learn differently. If that is not completely understood by the staff, they will not be successful in working with this population. Clients will need opportunities to keep them engaged, stimulated, and be able to participate in their communities with meaningful activities.
Adding to the difficulty of the situation is that no two people with autism will respond the same way to programming. Critical in curriculum development is the very necessary consideration of the individual needs of each client. Of particular complexity are those individuals who present significant behavior challenges, requiring more intensive staffing to keep them and others safe while allowing them to be productive.
Costs and Staffing
Complicating the above issues are the low vendor rates for those serving this population, as well as significant lack of training to foster the capacity and stability of services required.
In addition, the basic formula for funding is insufficient and not at all reflective of the very high real estate market of the Bay Area. This discrepancy makes paying, recruiting, and retaining trained staff extremely difficult.
Moreover, providing appropriate programming and being able to afford adequate facilities in which to house the day programs are both exceptionally difficult in this very expensive real estate climate.
Furthermore, there exists a two-tier system where those who exit state institutions are ensured full support in the community while all others, equally developmentally disabled, have no such assurance or program. What is necessary is access to specialized services while training and equipping direct support people with appropriate skills. As people move into adulthood, specialized services should be made available and included and built into the day program design.
What is currently out there for adults with autism?
Strategic priorities in the development of day programs:
People with autism present unique challenges to those hoping to develop an appropriate curriculum for a day program. Currently, there do not exist enough program models that are designed specifically for the needs of people with autism. Too often, day programs are designed for others with developmental disabilities and do not accommodate the specific characteristics of those with autism. The uniqueness of the autism population calls for a qualitatively different approach to programming. Staff must be thoroughly trained to understand that people with autism think and learn differently. If that is not completely understood by the staff, they will not be successful in working with this population. Clients will need opportunities to keep them engaged, stimulated, and be able to participate in their communities with meaningful activities.
Adding to the difficulty of the situation is that no two people with autism will respond the same way to programming. Critical in curriculum development is the very necessary consideration of the individual needs of each client. Of particular complexity are those individuals who present significant behavior challenges, requiring more intensive staffing to keep them and others safe while allowing them to be productive.
Costs and Staffing
Complicating the above issues are the low vendor rates for those serving this population, as well as significant lack of training to foster the capacity and stability of services required.
In addition, the basic formula for funding is insufficient and not at all reflective of the very high real estate market of the Bay Area. This discrepancy makes paying, recruiting, and retaining trained staff extremely difficult.
Moreover, providing appropriate programming and being able to afford adequate facilities in which to house the day programs are both exceptionally difficult in this very expensive real estate climate.
Furthermore, there exists a two-tier system where those who exit state institutions are ensured full support in the community while all others, equally developmentally disabled, have no such assurance or program. What is necessary is access to specialized services while training and equipping direct support people with appropriate skills. As people move into adulthood, specialized services should be made available and included and built into the day program design.
What is currently out there for adults with autism?
- Life skills, community volunteering day programs, 1:3, 1:4
- Independent living skills, 1:1, off site
- Tailored Day Services, 1:1
- Job placement job coaching, 1:3, 1:4 off site
- Transition to adulthood day programs, 1:3
- Activity day programs, 1:6, 1:8, 1:15
- Behavior management day programs, 1:3
- Community based 1:3 programs that cannot start or end at a site. These are not licensed, though. Clients meet at agreed upon place or sometimes are picked up by the program staff and spend the day in the community.
Strategic priorities in the development of day programs:
- Adequate vendor rates for SLS staff, ILS staff, group homes, and day programs.
- Cost based formula for funding, indexing of funding tied to context of region and the COLA.
- State median rates for RCs adjusted to geographic cost of living and indexed to these geographic realities.
- Unfreeze the frozen rates of established adult programs and get rid of median rates so programs can be sustainable.
- Recruitment, training, and retention to develop the capacity and stability of services.
- The two tiered system must be eliminated.
- Agnews center funding to be expanded to include all. Assessments done for Agnews clients to be done for persons with autism.
- Development of new non-profits to oversee care of ASD adults when parents are no longer able or have passed.
- Lack of support for behavioral help with the more challenging clients.
- New program options for ASD adults with extreme behaviors and challenges.
- Set of services, including assessment, that support the understanding of the individuals and inform the ability of others to support them to be successful in the least restrictive environment,
- Subsidized facilities for adult day programs in our very expensive real estate market.
- Expanding employment options for those able to work, including below-minimum- wage jobs for those with limited skills
- Improve eligibility for Regional Center services for “high-functioning” but dependent ASD adults
- Analyze state draw-down use of Medicaid waivers. Maximize available federal dollars. HCBS (home, community based services) and opportunities to develop new programs with these dollars