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June 2012



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Do you believe that people with disabilities should have the right to make decisions about our own services? To choose with whom and where we live? To be able to invite visitors home and make our own decisions about how to spend our day, decorate our homes and what kinds of services we want and don’t want? Today, you have an opportunity to make these rules law! 

The Centers for Medicare and Medicaid Services, the government agency that funds most disability service provision in the United States, has put forward a regulation that would set out requirements for how service providers receiving Home and Community Based Services funding can behave. CMS has proposed a wide variety of crucial protections, such as protecting people with disabilities from eviction from our homes due to refusing a particular service or treatment, requiring that community providers must respect the choice and autonomy of the people they support and many other important protections that will empower people with disabilities in interactions with their service providers.

But these regulations are facing severe opposition from many in the provider industry that believe that people with disabilities are “too disabled” to make these choices for ourselves. We have till this Monday to make our voices heard, before the CMS Public Comment period closes for good! Follow these simple instructions to make sure you’re represented:

  1. 1.  Go to Regulations.gov. Search for CMS-2249-P2.
  2. 2.  Click on the first result. A direct link can be found here.
  3. 3.  Take a look at the regulation and click Comment Now! to share your thoughts (NOTE: the regulation text states June 4th as the deadline for comment – it has since been extended to July 2nd). 
  4. 4.  Take a look at the ASAN public comment for ideas – feel free to copy any points that resonate with you. Here are a few points you may want to consider including:

  • *CMS should incorporate within the Final Rule a requirement that receipt of any particular service or support cannot be a condition for living in a unit.

  • *CMS should require that any modification to the conditions placed upon provider-controlled or owned residential settings be supported by a specific assessed need documented in the person’s person centered plan and should limit the acceptable scope of any modifications to the requirements placed on providers owning or controlling residential settings.

  • *CMS should shift from a rebuttable presumption of non-compliance with the HCBS program “for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex” to an unequivocal requirement that said settings are not acceptable under HCBS funding authorities.

This is a critical opportunity for our community to be heard on a vital civil rights issue – but time is running out! Please help spread the word and make sure that you weigh in today to protect our rights. As always, Nothing About Us, Without Us!


Ari Ne’eman
Autistic Self Advocacy Network

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