Access to affordable and supportive housing is becoming increasingly challenging, and funding for waiver supports and housing vouchers is not meeting the demand. It is concerning that professional, non-state resident advocates are writing letters to Medicaid authorities in Arizona and Florida urging the state to restrict individuals with disabilities from accessing supports in targeted settings they deem not “Home & Community-Based” on the basis of physical characteristics. The preservation of places people are proud to call home and the development of supportive housing opportunities are essential in preventing the forced placement of individuals with intellectual and developmental disabilities (I/DD) in institutional or more restrictive settings.

Since these letters were sent, all of the properties targeted have confirmed they were neither contacted nor visited by the Autistic advocacy group located in Washington, DC. Only two of these housing options have residents who use waiver funding, and the others are either completely private pay or are under construction. This national advocacy group does not have a local chapter in Arizona and has just one chapter in Jacksonville, Florida – hours away from The Villages at Noah’s Landing. This calls into question the motivation behind non-state residents and paid advocates who speak on behalf of citizens they do not represent.

These letters are troubling for two reasons:

1. Unlike the perspective in the letters, text from the CMS Final Rule Settings Overview and Fact Sheet states below, federal policymakers do not rely on setting size or physical characteristics to determine if a setting is “home and community-based”:

“In this final rule, CMS is moving away from defining home and community-based settings by ‘what they are not,’ and toward defining them by the nature and quality of individuals’ experiences. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics. The changes related to clarification of home and community-based settings will maximize the opportunities for participants in HCBS programs to have access to the benefits of community living and to receive services in the most integrated setting and will effectuate the law’s intention for Medicaid HCBS to provide alternatives to services provided in institutions.”

Settings must be assessed based on the waiver recipients’ quality of life, lived experience, and opportunities for access to the community. Person-centered planning, transportation, liveable income, accessible and affordable housing, space to build neurodiverse relationships, and consistent support persons are imperative to meaningful integration. Physical characteristics do not determine whether these services and supports are in place.

2. The letters disregard the dignity of citizens with I/DD and autism who have have chosen to live in these communities and have the human right to be supported in a home, workplace, or community of their choice. Many state waiver recipients desire to have access to innovative supportive housing opportunities that will offer them more support choices, stable housing, and more control over their lives consistent with their person-centered planning goals.

The choices, values, and opinions of current and future residents are upheld by these supportive communities. For example, the first step in applying to live at The Villages at Noah’s Landing is to fill out the “Interest Survey.” Eighty-eight self-advocates have already completed this survey – 36% of whom have lived independently in the past. The top four priorities as ranked by survey participants with disabilities are as follows:

1. Personal Safety (98.67%)
2. Transportation (90.79%)
3. Recreation & Social Activities (92.00%)
4. Daytime Activities (88.00%)

These same participants provided the following comments:

“I really need help acting more grown up and getting a job and going to school and things i would like to move here very very very bad.”

“I drive and have a car, would like to work, am looking for people who understand me”

“I think this is the best situation for people with ASD. I would love to be able to be independent and also have the support i need”

“I’m 18 and I can’t get any type of money or anything from the government. I can’t find a job at all I can’t drive I’m in ese and I would really like to get a job and live there. I really need this it would be a good for me to become a chef if I can get help finding a job and living at Noah’s ark.”

“So impressed by this project. What i have imagined for my self . I feel that the fact it is a community that is not just a financial endevor but a project with heart I have looked at other things like sec 8 housing but you felt as though it is too unsafe and doesnt meet my needs. Assisted living i didnt feel fit because its financial and does not have my best interest at heart. Noah’s Ark has heart .”

“i hope you can build more than one site.”

“I would like to live with a roomate or two someone I can hangout with play games with watch wrestling do all kinds of stuff.”

“I am very excited about the future with Noah’s landing.”

An individual may prefer to live in an intentional community, a campus or ranch, to have a safety net when s/he can only find a job for eight hours a week; for on-site support when meltdowns happen or a question arises; to have neighbors nearby who would invite them over for dinner or impromptu movie night; or even the opportunity to wander in their community without being misunderstood.

Listen to the voices of those who are excited about living in a similiar supportive housing opportunity, The Arc Village, being developed in Jacksonville, FL:

In Arizona, almost 21,000 individuals with I/DD are living with a caregiver over the age of 60; in Florida the number is nearing 80,000. Fewer than 3,000 individuals in Florida and Arizona combined had access to the supports and accommodations necessary to move out of their family home in the past decade. In this time of urgent need, it is important to embrace existing and emerging supportive housing options in Florida, Arizona, and nationwide.

Paid advocates in Washington, DC should not diminish the voices of state waiver recipients or their families. States have full authority to determine whether settings are compliant, and the Coalition for Community Choice urges public officials to continue giving priority to the voices of local constituents on this important issue impacting thousands of individuals with disabilities.

If you would like more information about the HCBS Final Rule, statistics in your state, or to see and hear the voices of those with disabilities who believe their #ChoiceFirst should not be limited, visit the Coalition for Community Choice website at: or review the CCC HCBS Final Rule Mini-Toolkit.

Learn more about the settings referred to in the letters by visiting their websites and maybe even plan a visit: The Villages at Noah’s Landing, Echoing Hope Ranch, Rusty’s Morningstar Ranch, First Place AZ, and Rainbow Acres

About the Author

Desiree Kameka, Director of Housing

Desiree is the project lead for the Autism Housing Network. Her work for the Madison House Autism Foundation focuses on researching housing issues, advocating on issues of autism in adulthood, and presenting her work at local and national gatherings. She visits residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of individuals on the spectrum or who have other developmental disabilities. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.