Managing Editor's Note: Please support our sponsor VOR and consider attending their conference in June in Washington DC., to ensure appropriate care and housing choices for YOUR child in the future. "Making it Happen: Reforming Policy and Law in Support of Person-Centered Quality and Choice." VOR is the ONLY national, nonprofit advocacy organization supporting residential choice from small to large housing options.
By Desiree Kameka, Director of Community Education & Advocacy, Madison House Autism Foundation and Tamie Hopp, Director of Government Relations & Advocacy, VOR
Did you know…
ü In the next decade, over 800,000 on the autism spectrum will transition to adulthood.
ü Almost all states have waitlists for accessing adult support services, yet the average growth of funding nationally is only 3.2%.
ü Almost one million individuals with intellectual and/or developmental disabilities (I/DD) are still living with caregivers over the age of 60.
In response to these staggering statistics, there is a movement of families and local organizations working together to create sustainable solutions to this national housing and support service crisis. They are gathering information at conferences, many have joined together for advocacy as the Coalition for Community Choice, and are sharing solutions at the new Autism Housing Network.
This collective energy and collaboration is in direct response to efforts by some government officials and even advocacy organizations to limit and eliminate certain options based solely on residence or workplace size and location, without assessing the smiles, laughter, sustainability, job security and true empowering sense of community and belonging that is alive and well in these residential and vocational opportunities.
What does policy have to do with housing, employment and service choices?
Federal and state policy and laws are largely responsible for how long term support services (LTSS) are regulated and funded.
In one recent, significant example, the Affordable Care Act of 2010 required that the Centers for Medicare & Medicaid Services (CMS) modify their regulations. On January 10, 2014, CMS released the long-awaited final version of the regulations, CMS 2249-F and CMS 2296-F. The new rule defines what CMS considers to be characteristics of “home and community” settings and the new person-centered planning requirements.
For some individuals with I/DD and autism, where they call home and receive services may be at risk of losing funding. Some existing and emerging innovative housing, vocational and day program options, such as agricultural and planned/intentional residential communities for people with I/DD and autism, may be in jeopardy simply due to their size and/or location, without any regard for the quality of person-centered programming or an individual’s desire to live and/or work in that setting.
Collective Advocacy and its Impact on Housing and Vocational Options for People with I/DD and Autism
The newly formed Coalition for Community Choice (CCC) is bringing together organizations that believe people with disabilities have the right to choose from a full array of housing, lifestyle and support service options. Respect for individual self-determined choice is at the core of CCC’s current objectives, and the impetus for its formation.
The new federal rule includes some positive changes due to our unified advocacy, as well as continued opportunities for stakeholder input. Although CMS left the door open, many individuals with I/DD and autism, their families and advocates must convince states to defend their homes and workplaces as community integrated and not institutional, consistent with the new rule, or face being displaced.
As a national grassroots collaboration of persons with disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and services providers, the Coalition for Community Choice wants to send the message that community can be experienced in all residential or vocational settings and the choices of people with disabilities, as outlined in their person-centered plan, must be honored!
Specific Advocacy Challenges and Opportunities Ahead
In one year, states must demonstrate to CMS with public input that current HCBS waivers are funding eligible “community” settings, or describe what changes will be made to ensure compliance. As the rule requires ongoing stakeholder input at the state and federal levels, our voices must be heard!
Housing and service choice advocates are compelled to remain involved and provide input at every opportunity. Although CMS supports “meaningful choice” among all available residential options, the bias against congregate settings that offer friendships and benefits from living together and accessing services and amenities collectively remains. The final rule presumes that any form of congregate care to be institutional and not community, so we must prove that this stigma is not always true. It will be up to choice advocates to (1) urge states to seek HCBS funding for such settings, and (2) urge federal reviewers to approve such applications. See our HCBS Policy Brief and action steps for more information on how to be an advocate in your state.
In light of the staggering figures above, the Coalition for Community Choicewill remain united in support of strategies to ensure that people with I/DD and autism, not government officials, define their own home and community. People, who have found their sense of belonging and purpose in intentional communities, who live and work in farm communities, who are planning to move into an apartment building with “smart home” technology and design strategies for their unique needs, or who choose to live in neighboring homes with their peers on the same cul-de-sac, have the right to live in that home and community of their choice. Join us in increasing options and decreasing barriers to home and community choices!