Denny Roger’s daughter, Emily, was at a dead-end. Her family modified their home so she could have her own space, but her frequent meltdowns expressed her dissatisfaction and frustration. She moved into a home in the community with a roommate, but led a very isolated life. Sitting in front of the TV all day was not the life she craved. Her father, with the help of others facing similar circumstances, created Safe Haven Farms after much consultation and guidance from Bitterweet Farms, the first farmstead to serve autistic adults in the USA.
Emily spends her days caring for animals, tending to her pumpkin patch, interacting with roommates and friends or relaxing in an environment specifically designed to support the needs of autistic adults. Meltdowns are rare, and life is good at Safe Haven Farms. However, Denny, his daughter, and hundreds of thousands of individuals across the country now face another barrier.
Every state must create a State Transition Plan by March 17, 2014 and describe its compliance with the Final Rule. The Final Rule is CMS policy that establishes settings where individuals with disabilities can use their publicly funded long-term support services, generically called Home and Community-Based Service waivers (HCBS waivers).
Unfortunately, guidance from the Center for Medicaid & Medicare Services (CMS) has labeled farmsteads, like Safe Haven and Bittersweet, as “settings that tend to isolate” along with residential schools, gated/secured “communities” for people with disabilities, and multiple use campuses. Individuals who have chosen to live or work in these types of intentional home and communities with their peers face the reality that their state policymakers can take away their publicly funded support services. Private-pay intentional communities exist across the country, but are unaffordable for most individuals with disabilities.
Safe Haven Farms, Bittersweet Farms and other Ohio advocates have been tirelessly advocating for the past three months [see their documented efforts here]. Denny writes,
“I have never met so many politicians in my life and told our same story over and over! But I think it has really made a difference … I was truly impressed with how willing all of the politicians were to meet with us on short notice, hear our concerns, give us suggestions and reach out on our behalf. It restores a little of my faith in the political system! They were all super supportive.”
In direct response to their combined advocacy efforts, 14 Members of Congress representing Ohio sent a joint-letter to the Secretary of Health and Human Services, Susan Burwell stating their concerns about the CMS guidance. We applaud Ohio delegation that sent a letter to HHS. Madison House has sent a letter to express appreciation for addressing this important issue and our involvement with the Coalition for Community Choice. We ask you to consider doing the same.
You can send your note of appreciation directly to Speaker Boehner using this online form.
If you would like to learn more about how you can influence policymakers in your state, visit Take Action page of the Coalition for Community Choice website: http://coalitionforcommunitychoice.org/learn-more-about-the-issues/
Regulations regarding waiver services and supports in every state are in flux. In January 2014, the Center for Medicaid Services (CMS) issued new federal regulations intended to increase the quality of life for the elderly and those with disabilities who receive public funding through Home and Community Based Services (HCBS) waivers. Prior to these changes, HCBS requirements were based on location, geography, or physical characteristics. The new HCBS regulations are outcome-oriented and life supports are to be guided by an individual’s person-centered service plan (PCP). This is a huge step forward as these new federal regulations are intended to ensure more individualized supports based on the needs, choices, and experiences of individuals with disabilities.
Each state is now charged with revising and assessing its state policy and HCBS settings to make sure it complies with these new federal CMS regulations. This process will be documented in a Statewide Transition Plan (STP) that is to be influenced by your input.
The Coalition for Community Choice (CCC) is an alliance of over 85 organizations and businesses across the country that strive to meet the housing and employment demand for an array of life options for those with intellectual/developmental disabilities (I/DD). Many members of the CCC have developed innovative housing opportunities and social enterprises in their local communities to meet the desperate demand for meaningful work and access to more life experiences. Collegiate transitional programs, working ranches and agricultural communities, sensory-friendly and assistive technology equipped 1 and 2 bedroom apartments, neurodiverse live-work-play communities, and other types of intentional communities are emerging across the country!
As CCC member organizations advocated during public comment periods, many realized that state leaders were swaying from the intent of the CMS federal regulations and reverting back to regulation criteria that is not outcome-oriented or based on individual experiences. In response to these concerns regarding housing choices for thousands of individuals with disabilities, Coalition for Community Choice members came together and signed the following letter to CMS:
It is imperative that you also become an advocate and ensure your state does not create more restrictive policy than the federal CMS regulations that may limit housing and employment options. To learn more about how you can influence your Statewide Transition Plan (STP) visit the Act Now page of the Coalition for Community Choice website.
Working together, we can create a better future!
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