What does "community" mean to you? For some people, this question doesn't mean much. But for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications.
In 2010, the State of Missouri tried to use Medicaid funds that were intended to serve people with disabilities in the community to build group homes on the same property as an institution. The Centers for Medicare and Medicaid Services (CMS) rightly refused to allow Missouri to use Medicaid Home and Community Based Services (HCBS) funding for this plan, as the purpose of HCBS funding is to help people avoid institutionalization, not to fund placements that segregate people from their communities.
As a disability rights organization committed to advancing equal access and inclusion for all people with disabilities, ASAN belives strongly that anything that segregates people with disabilities from our communities is not community.
CMS has been trying to implement strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from happening again. CMS has proposed regulations that would prevent HCBS dollars from going to institutions, settings that are on the grounds of an institution, settings that are segregated on the basis of disability, and settings that have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is a significant opportunity for the disability community to support a real minimum standard for the meaning of community living.
We need your help to make these standards a reality. CMS will issue a final rule by the end of 2013. Unfortunately, the institution, nursing home, and sheltered workshop industries have already written to CMS and Congress opposing any standards for how and where HCBS dollars are used. We need our community to write in to tell Congress and CMS that:
- Community living cannot occur on the grounds of an institution or in settings that operate like institutions, denying people privacy and imposing rules that limit personal freedom and choice.
- Community supports do not involve the use of sheltered workshops and other facility-based settings that separate and congregate people on the basis of disability.
HCBS funding should be used to support people with disabilities living in typical housing that they control, located in existing communities, alongside neighbors with and without disabilities.
HCBS funding should be used for supported employment and community involvement - not for sheltered workshops or segregated day service settings.
Here's what you can do:
- Contact your Senators and Representatives and ask them to write letters to Secretary Sebelius letting them know that you SUPPORT the proposed rulemaking by going to Contacting the Congress. Including your personal story and a photo is encouraged.
- Don't hesitate to add your thoughts about what community living means to you.
- Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too - the more people who write in, the stronger our position will be. Help us get the word out!
This is a critical opportunity to have our voices heard. Now is the time to speak up and speak loudly about the importance of these new regulations.