May 28, 2013
Shaun Donovan, Secretary
Via Email Secretary.Donovan@hud.gov
U.S. Department of Housing and Urban Development
451 Seventh Street SW
Washington, D.C. 20410
Dear Secretary Donovan:
Agricultural Communities for Adults with Autism (ACAA) is a consortium of 35 existing national service providers (and organizations in development) focused on offering, in different mixes: meaningful and stable employment, safe high quality housing, essential residential and day programs, and critical lifespan services to adults with autism spectrum disorders and other developmental and/or intellectual disabilities. Our members, most but not all non-profit or faith-based organizations, are generally located in very appealing, small to medium sized community based settings. We have modest footprints and agricultural, farm, or ranch “contexts”;, which some people with disabilities find very desirable versus urban working and living arrangements. Some of our models are referred to as “farmsteads".
We were highly dismayed to learn that the National Council on Disability (NCD), a federal advisory agency, has written to HUD (see NCD’s letter of May 21, 2013 linked below) with specific reference to our organizations, offering an inaccurate characterization of farmsteads as “segregated", as well as a recommendation calling on HUD to render many of our member organizations, as well as other innovative and worthy models, ineligible for HUD programs. If enacted, this prohibition on funding would likely starve our members of critical financial support and force some of us to close. Our closures would also likely result in more of the very same institutional or congregate care placements the NCD claims to abhor. In many cases, our residents and program participants come to one of our models from or as an alternative to traditional large institutional placements, since we can offer a terrific lifespan option with a high degree of community integration and interaction to people who (like many of our participants) may have a highly impactful disability or disabilities, frequent or intermittent serious and challenging behaviors that may affect their personal or community safety, or people who may for other reasons need intensive personal support.
The U. S. Department of Health and Human Services CMS Division recently solicited, via NPRM, broad stakeholder input and extensive public comment (see CMS HCBS waiver1915i) on this same issue of defining what should be considered a “community based setting” for the purposes of Olmstead compatibility. It quickly became clear to CMS during the NPRM process that, due to the complexity and nuance of this issue (even the word “community" has many, many meanings) and a very wide disparity of viewpoints expressed by stakeholders on the intent of Olmstead, that CMS needed to embrace a flexible approach in their rulemaking, rather than a rigid definition of “community setting” in the manner the NCD is now recommending to HUD.
Our member organizations are, to the reasonable observer, clearly not big institutions, though the NCD seems quick to incorrectly conflate agricultural or intentional communities and farmsteads with medically driven institutions like nursing homes or large congregate care facilities. To the best of our knowledge, the NCD, again, an advisory, rather than regulatory, body has never seriously studied our models, or initiated outreach or site visits to any of our many national locations, prior to offering this ill-considered advice to HUD.
A basic examination of our models will inform HUD that we are highly successful grassroots, “person-driven”, small footprint, adaptable, and flexible organizations which were created organically over the years to fill existing service gaps. Our fervent desire is to continue to provide critical and essential services to current and future participants, all of whom are integrated, to the highest extent of their ability and personal choice, into the fabric of their respective communities.
Again, we strongly encourage HUD to reject the NCD’s request to issue rigid guidelines that limit (or eliminate) HUD program funding for agricultural or intentional communities and farmsteads for adults with autism and other developmental disabilities. Instead, we request that HUD meet with us and thoroughly study our models prior to issuing any guidelines that would affect our ability to continue providing critical services to our constituents.
We believe that people with disabilities (and/or their families and caregivers when appropriate) know what program designs and settings best help them lead happy, meaningful, and fulfilling lives and, importantly, what constitutes a “community based setting”. People with autism and developmental and/or intellectual disabilities should have the right and ability to make those determinations from a continuum of options, free from rigid unreasonable choice limiting rules, no matter how well intentioned. We look forward to hearing from HUD soon to schedule a meeting with you and your staff to share specific detail and facts about our models, programs, and operations at your earliest opportunity.
Gene Bensinger and Vicki Obee-Hilty
Co-founders Agricultural Communities for Adults with Autism (ACAA)
email@example.com 419-875-6986 extension 1209
Agricultural Communities for Adults with Autism