The federal Centers for Medicare and Medicaid Services are attempting to restrict choice for people living in community settings by proposing rules that claim that specialized services and residential options for people with disabilities in group settings are too institutional. If approved, these rules will limit Medicaid-funded Home and Community Based Services to only those services that meet the CMS ill-defined definition of "community".
The following has many suggestions for action if you disapprove of the CMS rules. Use what seems most appropriate for you and your family member with DD and modify it to fit your situation. There are also links to more information to help you better understand the issues. Also see The DD News Blog on proposed CMS rules .
September 12, 2013
Immediate Advocacy Needed in Opposition to a Proposed Regulation that would Restrict or Eliminate the Full Array of Medicaid Home and Community-Based Services and Supports for People with Significant Disabilities
There is a crisis facing people with significant disabilities
that needs your immediate attention!
As you know, there is a concerted effort by some factions of the disability community to restrict or eliminate the use of Medicaid Home and Community-Based Services (HCBS) funding for services and supports provided in skill development centers (who they refer to as “sheltered workshops”); eliminate or phase out Section 14(c) of FLSA [Fair Labor Standards Act section that allows employers to hire a worker at less than minimum wage who has a disability for the job being performed and whose earning or productive capacity is impaired by the disability] and restrict use of HCBS funding to support residential community options such as placements in certain residential settings.
We have reviewed public statements by representatives from the Centers for Medicare and Medicaid Services (CMS) and “Special Terms and Conditions” entered into between CMS and New York State. It appears to us that CMS may now be demanding that renewals of HCBS waivers/state plan options [the agreements between the CMS and states that determine how Medicaid funds may be used to provide services to people with disabilities in community settings] include language prohibiting the use of Medicaid HCBS funds for prevocational services provided in skill development centers and restricting funding in certain residential placements that fail to meet the PROPOSED definition of “integrated setting” in a May 3, 2012 Notice of Proposed Rulemaking issued by the Secretary of Health and Human Services.
During the past two years, ACCSES members and the families of the people we serve have opposed restrictions on or the elimination of service options. We have submitted comments to the Secretary of HHS regarding the proposed HCBS regulations; asked members of Congress to submit comments and contact Secretary Sebelius; and have met directly with political appointees and career staff at CMS and various federal agencies and departments. ACCSES has also worked with members in several states to help them negotiate with their Medicaid agencies to ensure continued HCBS funding for the full array of services for individuals with disabilities. A more extensive background document on the HHS proposed rule can be found here.
Given the most recent developments at CMS described above, there is an urgent need to expand our advocacy efforts. We need your help to pursue three related strategies.
First, if you have not already done so, contact your members of Congress and request that they send a letter to Secretary Sebelius (click here for draft letter) demanding that CMS cease using a proposed regulation under the Medicaid Home and Community-Based Services program as the basis for restricting state flexibility and for eliminating viable service options for people with significant disabilities and urging that the proposed language be modified to allow longstanding, successful program options to continue.
Second, identify any individuals you or your stakeholders know who have political “clout” and ask them to personally contact members of Congress, Secretary Sebelius, and/or The White House.
Third, send this action alert to individuals with disabilities you serve, their family members and friends and relatives, and others, which asks them to send letters to their Members of Congress urging them to send a letter to Secretary Sebelius requesting that CMS modify the language of the proposed regulation to allow community-based programs to continue providing the full array of home and community-based services.
Draft letters for providers and parents:
Letter from providers to parents and allies
For parents to Congress
Including a consumer story with a picture will add impact to your message. The following story elements are ideal for the message.
An individual who benefits from skill development services who:
- experienced job exploration, discovery, job carving, job customization, and/or self-employment;
- tried competitive integrated employment including supported employment more than once and was not satisfied with the outcome;
- became unhappy and possibly regressed behaviorally;
- subsequently was employed at a skill development center;
- likes working at the skill development center; and
- shares with loved ones and others his/her pride in going to work and earning a pay check.