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.
Here is how you can help:
- 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.
- The NIDILRR is hosting one of several in-person public comment sessions across the country in San Fran Oct 28th. The goal is to identify barriers to community living. They are mandated by Congress to do this! Let’s tell them our concerns over policy influencing housing choices. For those who can attend in person or over the phone- please do! You can also submit electronic comments: http://neweditions.net/meetings/nidilrr-stakeholder-listening-session
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 Service
A 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 Services
The 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 community
Read this article to get a sense of what type of limits Medicaid is placing on “acceptable” for residential settings