Who decides how your disabled child lives? You or Uncle Sam?
Adult autism services are primarily funded by the federal Medicaid Home and Community Based Services (“HCBS”) program, also known as the HCBS waiver. This waiver is specifically directed at providing matching funds to states for support services to adults who require an “institutional level of care” to survive, but who prefer to live in the community rather than in institutions.
Significant changes are coming from the federal government that attempt to dictate where and how individuals with special needs may live. Intentional communities such as those we are in the process of creating don’t fit into the government’s plan and are under attack. See links below for more information. The bottom line is that choices for your children’s future are at risk.
- To get an overview of what the stakes are, read The Federal Government’s Quiet War Against Adults with Autism article by Jill Escher, President of San Francisco Autism Society.
- Susan Riggle and Alex Krem recently attended a meeting of the California Advisory Group on Home and Community-Based Services (HCBS). They learned that there is still an opportunity to advocate that families need more (not less) housing choices and that one size does not fit all. DDS is forming four Working Groups to advance matters. Having your voice heard will be important. If you can, please email Julie.Souliere@dds.ca.gov and offer your services.
- Plan to attend the next California state HCBS Advisory Group meetings (details forthcoming)
Suggested reading and links to regulations.
San Francisco Autism Society
- Myths v. Facts: Californiaʼs Adults with Autism/DD and the New Medicaid HCBS Rules. A good comparison between regional center’s interpretation of regulations vs what is actually mandated by federal regulation
California State Government Websites
- CMS Home and Community-Based Services (HCBS) Regulations – California Department of Developmental ServiceA description of how California has implemented HCBS waivers. Of particular note the HCBS Waiver for Persons with Developmental Disabilities (DD Waiver). The purpose of this waiver is to serve beneficiaries of all ages in their own homes and community settings as an alternative to placement in hospitals, nursing facilities or intermediate care facilities (ICF) for persons with developmental disabilities. Community-based services for individuals with developmental disabilities are provided through a statewide system of 21 private non-profit corporations known as Regional Centers.
- California’s HCBS Statewide Transition Plan (STP) – California Department of Health Care ServicesThe STP describes how the State will come into compliance with new Federal Home and Community-Based (HCB) setting requirements that became effective March 17, 2014.
Medicaid – Federal Government Websites
- Home & Community Based Services The final federally mandated Home and Community-Based Services regulations including new requirements for several Medicaid authorities under which states may provide home and community-based long-term services and supports. The original legislative intent of the HCBS Waiver program was to slow the growth of Medicaid spending by providing services in less expensive settings.
- Guidance on Settings that have the effect of Isolating Individuals Receiving HCBS from the broader communityRead this article to get a sense of what type of limits Medicaid is placing on “acceptable” for residential settings