Medicaid Waiver Rules

Harry Hofher writes at Age of Autism:

There is a proposal to change the Medicaid HCBS waiver rules that would place restrictions on the autism community’s efforts to develop housing options for our kids with autism as they become adults, just when we need to be exploring every option, including group homes and the autism farm communities.

The Centers for Medicare and Medicaid Services (CMS) has submitted proposed rules changes for the Medicaid Program; Home and Community-Based Services. (HCBS). Here is the link to the proposed changes in the CFR : (HERE) Comments are invited but must be submitted by June 14^th. Time is short so please review these proposed changes and add you comments.

Parents of adults with autism have joined together and started communities for adults with autism all over the country, including several agricultural communities. These proposed rules changes threaten the existence of these autism based communities. Agricultural communities for adults with autism are a proven and successful option for residential living and employment for adults with autism. Existing farms, such as Bittersweet Farms in Ohio which opened in 1974, and others farms were established to serve the unique needs and challenges of adults with autism. Under the proposed rules changes; “Home and Community Based Services must “… not be a housing complex designed expressly around an individual’s diagnosis or disability, as determined by the Secretary (of HHS)”.

A major goal of the proposed rules changes is integration of residents into their community and in seeking that goal; “…we are proposing to clarify now that certain settings are not home and community based because they are not integrated into the community.” While the goals of distancing ourselves from the bad old days of large state mental institutions, and removing many restrictions on integrating adults with disabilities further into their communities are both understandable and commendable, it needs to be recognized that some disabilities such as profound autism present distinctive challenges and that serving a group of adults with autism requires special training, and skills just as working with the deaf and the blind requires unique and specific training and skill sets.

If approved as written, the proposed changes will remove viable productive and established housing and community models from the list of choices parents and legal guardians of the severely disabled need to choose from for their disabled adult’s future. This comes at a time when we need more choices and more places for our kids to live, thrive, and survive.

In researching further it appears that there are some in the self-advocacy community that have been active in working on the rules changes and feel it is their responsibility to “…define the meaning of community living.” As self-appointed advocates for persons with intellectual and developmental disabilities, including the autism community, they have issued a press release (HERE) to announce their new report, Keeping the Promise: Self Advocates Defining the Meaning of Community Living (HERE)