Welcome to the Coalition for Community Choice’s New Website!

Homes for Life Intentional Community Feasibility Report: Addressing Public Concerns

Homes For Life Foundation‘s (HFL) mission is to address an urgent issue in Delaware: the affordable housing crisis for adults with intellectual/developmental disabilities (I/DDs). Over the past 25 years, the foundation, led by husband and wife team, Dr. Lanny and Micki Edelsohn, has raised millions of dollars to build and furnish dozens of homes and condos that house 104 Delawareans with I/DD. The foundation‘s latest project, an affordable, consumer-controlled intentional community in DE, aims to house 30 more individuals with I/DD.

Last year, the Ford Foundation awarded HFL a grant to write a feasibility report entitled “Building an Intentional Community in Delaware.” In the report, that was published in February 2017, the authors note:

“The [intentional community] intends to provide adults with I/DD their community of choice by providing an innovative, affordable, and supportive housing option that encourages independence, respects choice, supports a safe and healthy lifestyle, and promotes taking full advantage of employment, social, and educational opportunities in the broader community.” Click here to read the full feasibility report.

Since the report was published, some individuals have expressed concerns about the prospective community, accusing it of being “institutional.” Madison House Autism Foundation‘s National Director of Housing and National Coordinator of the Coalition of Community Choice (CCC), Desiree Kameka, is a tenacious advocate for housing choice and a contributing author of the HFL report.

Kameka recently wrote a letter to Darren Walker, President of the Ford Foundation, responding to concerns that the intentional community will limit the autonomy and choice of adults with I/DD. Kameka writes:

“The opposition to intentional communities and its attribution as a neo-institution is a gross overgeneralization without regard for the vast difference in service delivery models. Moreover, this biased ideology stems from those who have not built relationships with neurodiverse citizens who have chosen to live in intentional communities.” Click here to read Kameka’s full letter to the Ford Foundation.

Now, more than ever, it is important to embrace the array of housing options for adults with I/DDs. While one individual may feel uncomfortable living in an intentional community, this may be an ideal choice for another.

Madison House Autism Foundation (MHAF) is dedicated to creating spaces for adults with autism and other I/DDs to share their ideas regarding housing issues. Last year at the HCBS Conference, MHAF arranged and moderated a discussion with six self-advocates who live in intentional communities in California, Texas, North Carolina, and Florida. These self-advocates shared their stories and described why their choice of living on a farmstead, neurodiverse cohousing community, or other intentional community should be preserved.

To learn more about their perspectives, watch the discussion below:


#Imagine21: A Mini-Documentary Series On Autism After 21

At age 21, our friends with developmental disabilities lose access to many of the supports they receive as children. The #Imagine21 mini-documentary series highlights the incredible stories of adults living with autism and the unique circumstances they face as they age into adulthood. Through them, viewers will be intimately acquainted with just a few of the people behind this diagnosis and come to a fuller understanding of the value they have to add to our lives when we as a community respond to the challenges they face. Watch the trailer below.


Madison House will be releasing these films online every few days throughout April, National Autism Awareness Month 2017 – be sure to check this page next week for updates. As we release each film, please share them on social media with the hashtag #Imagine21. If you’d like to contribute to this project, please donate to Madison House Autism Foundation. We appreciate your support! Also, be sure to mark your calendars for Autism After 21 Day on April 21st.

MHAF Animation

Jeffrey, 29, NC

Jeffrey’s post-secondary education program empowered him with the skills he needed to thrive in a neurodiverse intentional community in North Carolina.

MHAF Animation

Kacey, 26, MD

Kacey loves chickens. Her dream is to live on a therapeutic farm in Maryland, but the lack of housing options for adults with autism has limited her ability to choose a future that’s right for her.

Brian Aubin

Brian, 24, NY

Brian was bullied growing up and once turned to substances to cope. He eventually became sober and found spiritual fulfillment through practicing and teaching yoga.


David, 25, NC

David “The Cartoonist” loves to animate. He recently moved to an intentional community in North Carolina with his family, and while David has made great friends at his new home, he is still struggling to adapt to this major life change.


Andrew, 28, DE

Andrew is somewhat verbal and can do most basic self-care tasks, such as bathing and clothing himself. He craves the same independence that his brother and older sister enjoy; however, lack of programming makes transitioning to independent living out of reach.


AJ, 31, MD

AJ’s love for horses developed after he saw the movie “Seabiscuit” in 2004. After pursuing his passion for many years, he became employed at Madison Fields where he is able to work with horses while earning a paycheck.

Brian B&W

Zach, 23, IA

Zach is considered nonverbal, yet lights up the room with his fun-loving personality and big smile. Communication issues once left him frustrated, leading to aggressive behaviors and meltdowns. Today, Zach is living in a supported living situation where he is happy and thriving. (Coming soon!)

Brian C B&W

Brian, 23, MD

Brian loves Disney music, french fries, and hugs. Because of his inability to communicate, he struggles with behaviors that prevent others from seeing the wonderful person he is on the inside. (Coming soon!)

Alex B&W

Alex, 24, MD

Alex utilized his expertise in horticulture in his Americore Vista volunteer position at Madison Fields. He feels that while autism is an undeniable part of his reality, it does not define him as a person. (Coming soon!)

Jason B&W

Jason, 30, IA

Jason lives a very busy and active life. He works as a gym custodian at the YMCA, is a Special Olympics athlete, and even finds time to do karaoke several times a week. His community involvement has been crucial to his development in both the career and social spaces. (Coming soon!)

The Autism Housing Network: Turning Parents into Project Starters

Madison House Autism Foundation is excited to unveil a project that has been in the works for over a year now: the new Autism Housing Network (AHN).

“The AHN is the first interactive online community for adults with special needs and their families,” says Desiree Kameka, national housing expert at MHAF. “It serves as a hub of housing ideas and resources to help project starters create new options for thousands of adults with autism and related disabilities across the nation.” JaLynn Prince, President of MHAF, explains “The AHN is an answer carefully planned and implemented with a delicate sensitivity for adults, young and old, on the autism spectrum.”

The AHN offers various features that can make navigating and understanding the housing landscape much easier. The AHN Housing Directory gives users the ability to explore emerging and existing housing models through an interactive map and a user-friendly catalog. There are a few things that make the AHN especially unique. If you create an account on the site, you can save your favorite housing ideas to your Favorites page to refer back to when you’re ready. You can also submit your own projects to be added to the directory and map for other users to see and share. See a screenshot of the interactive map below.

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The AHN Resource Directory is a collection information, videos, presentations, and other media to educate parents, self-advocates, and project starters on the best practices in creating housing for adults with autism and related disabilities. Users can submit their favorite resources to share with others.

Do you have a specific question or comment about your housing project? The AHN Discussions Board is a great place to say whatever is on your mind. The AHN community would love to connect while helping you find the answers you need to make your project a success.

We welcome and invite you to join this exciting new community that is making housing a reality for adults with autism and other disabilities around the country. Visit www.autismhousingnetwork.org to sign up or click the button below:

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Home and Community: An Individual Choice, Not An Ideological Debate

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: https://www.youtube.com/watch?v=8P3g9kSgaJ0.

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: www.CoalitionforCommunityChoice.org 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

Update on CMS Expectations for State Transition Plans

The CCC has created an STP Mini-toolkit as a quick reference guide after almost 2 years of HCBS Final Rule implementation. This information is an extension of that toolkit:

The Center for Medicare & Medicaid Services (CMS) and NORC, the contractor helping implement the Final Rule and review State Transition Plan’s, hold monthly webinars called SOTA (State Operations and Technical Assistance) calls to advise Medicaid directors about completing their STP. CCC participates in these calls and will continue to report on relevant issues. We have made a specific request to CMS to publish all the questions and answers from every call, and they have indicated they are working to address that concern. Below are CCC observations from the last two calls.

Nov. 4, 2015 – HCBS Settings, Excluded Settings, and Heightened Scrutiny Process [Download]

The content stayed consistent with the Final Rule and Guidance, but for the first time specifically addressed private homes as settings:

  • A state may presume that an individual’s private home or relative’s home where the individual resides meets the home and community-based settings requirements.
  • However, it is still the state’s responsibility to ensure that individuals living in a private home or a relative’s home have opportunities for full access to the greater community.
  • If the state presumes that private homes meet the settings requirements, the state needs to confirm that the homes were not purchased or established in a manner that isolates the individual from the community of individuals not receiving Medicaid-funded home and community-based services. For example, did a group of families purchase an isolated property solely for their family members with disabilities using waiver services?

Dec. 9, 2015 – Systemic and Site-Specific Assessments and Remediation  [Download]

The most significant aspects of CMS’ expectations about the STP process revealed in this webinar were “deadlines” when CMS expects certain milestones of the STPs to be completed by all states.

  • CMS expects states to submit an amended STP with their systemic assessment results [regulations, licensing requirements, survey assessment results, etc.] no later than March 31, 2016. This includes posting the amended STP for public comment and including the states’ responses to that public comment.
  • CMS expects states to complete their site-specific assessments no later than July 31, 2016. States are required to post these results for public comment and submit results to CMS no later than Sept. 30, 2016.
  • CMS differentiated a “modified” STP from an “amended” STP. A Modified STP is one that includes additional data in support of or expanding on existing content in the STP without making any substantive changes. An Amended STP is one that includes determinations from systemic and site-specific assessments, includes remedial actions or changes to milestones, or contains changes substantive enough to warrant public comment.
  • Desiree asked what should be the possible state responses if public comment disagrees with the state list of non-compliant settings. CMS responded that it will depend on the nature of the comments, the evidence presented in support of the comments, and the weight of the comments.
  • Mark asked if a person living in a setting believes the setting fulfills the requirements of HCBS, but the state reviewer makes a contrary assessment, whose view will prevail? CMS responded that a person’s individual choice will not overrule whether the state determines that a setting has the qualities of an institution or whether it meets the HCBS settings requirements.

Please continue to educate your advocates about these issues using the CCC developed materials as their voices will be of utmost importance when public comment periods open in your state. Check the CCC website regularly to see if your state public comment period is open!

How to Improve Employment for Those with Disabilities: Flexible Policy, Research, and Choices

In many states, policy is changing in an effort to improve life options for individuals with intellectual/developmental disabilities (I/DD). Indeed, new policy raises new questions and issues:

  • How will the positive and negative effects of policy change be measured in regards to the impact it has on the lives of those with I/DD?
  • When should policy override an individual with I/DD’s right to choose an employment or housing setting for his or herself?
  • Does policy change unintentionally create barriers to the development of employment or housing opportunities for those with I/DD?  

A new study by George Washington University provides insight into these questions and may help change the course of state policies across the country.


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5 million US citizens have intellectual/developmental disabilities and require a range of support services in order for them to remain active contributors to society. These individuals tend to be reliable, hardworking, and dedicated employees who are proud of their jobs and want to give back to their community. There are two predominant employment models that are currently being targeted in changing policy.

  • Competitive, Integrated Employment: An individual with I/DD has a paid job coach or support staff to help him/her accomplish responsibilities in a workplace where those without disabilities are primarily employed. They are paid at least minimum wage by their employer and public funds pay for their necessary  support staff. Typical jobs for individuals with I/DD in retail stores include bagging groceries, stocking shelves, janitorial tasks, hanging clothes, etc.
  • Facility-based Employment or Sheltered Workshops: Settings where employees are primarily individuals with I/DD and the support service agency owns and/or manages the business. Jobs usually consist of assembly, stuffing mass mailing envelopes, preparing information packets for corporate offices, etc. They are paid based on their production, thus typically sub-minimum wage.

In addition to and because of the lack of options, local organizations and families have been developing more employment choices such as mobile work crews, social enterprises created around an individual’s interest, Community Supported Agriculture (CSA), supporting an entrepreneur with I/DD, etc. These emerging solutions ensure a wide array of employment choices, which is the key to finding a good fit for each individual. Paradoxically, policy changes may limit employment options in the future.

Transitions: A Case Study of the Conversion from Sheltered Workshops to Integrated Employment in Maine

Just a few decades ago, society viewed individuals with I/DD as burdens, unable to learn, and certainly as non-contributing citizens. Employment was not an option, and individuals were often forcefully segregated with no control over their lives. Through advocacy efforts, incredibly important legislation was passed to protect individuals with disabilities from discrimination; however, the community culture is still catching up. Although society and community supports have progressed quite a bit, there is much room for improvement.

In 2006, Maine decided that it needed to improve employment opportunities for its citizens with I/DD. After a year of research, Maine Public Law Chapter 101 “Resolve, To Create Improved Employment Opportunities for People with Disabilities”  became law in January 2008. This change eliminated the option of receiving public supports in a sheltered workshop or facility-based employment setting.

The CHIMES Foundation, a large support service provider whose motto is Empowering People, Enriching Lives, led George Washington University to research what happened to those who were once employed at a sheltered workshop after this legislation was passed. The study titled “Transitions: A Case Study of the Conversion from Sheltered Workshops to Integrated Employment in Maine” reveals:

  • Maine citizens with I/DD currently work an average of 12 hours per week, the lowest average in the country. (p. 4)
  • There was a 5.4% decrease in employment rate for individuals with I/DD once sheltered workshops were phased out. (p. 7)
  • The rate of employees in integrated, competitive employment settings also declined. (p. 12)
  • Staffing ratios are limited to an average of 1:3 when ratios up to 1:1 had been permitted prior to the implementation of Public Law Chapter 101. Thus, individuals who have higher support needs cannot access employment opportunities. (p.18)
  • Of individuals who were part of the study and previously employed at a facility-based setting before 2007, over 57% were either laid off, unemployed, or only had a volunteer position by 2014. (p. 25)
  • Those who are working earn less per week because of the reduction in the number of hours worked. (p. 26)
  • If one loses his/her job, he or she must be re-assessed by Vocational Rehabilitation before he or she  can find another job. Providers report assessment can take longer than a year and clients have lost job opportunities in the interim. (p. 29)

Not only did individuals with I/DD lose employment setting options, they also lost providers who offered employment services: “Some of the providers participating in this study are no longer offering employment services. Those interviewed cited barriers that interfered with their ability to provide employment services, including the prohibition on colocation of community supports and employment services and increased provider costs for providing employment supports.” (p. 2) 

Maine’s goal of improving work opportunities for those with I/DD through the phasing out of facility-based options has yet to be realized. The unintended consequences of eliminating facility-based employment opportunities are important to examine as all states are in a transition period and must change policy to meet new federal waiver criteria. Moreover, the study offers lessons learned for other states trying to increase competitive, integrated work opportunities of those with I/DD.

Read the full study here: http://www.chimes.org/pdf/Integrated%20Employment%20in%20Maine%20Final.pdf


What research still needs to be done

Maine’s case study is an important example of the need to assess if changes in policy have produced the intended outcome. Unfortunately, the study did not report an increase or decrease in the quality of life of those individuals who lost their jobs and how they are now spending their time. Given the scarce public funding available to meet such a growing demand, policy must be both developed and evaluated through research that focuses on the participant’s quality of life.

PULL QUOTE “Good policies are data driven, and accompanied by information systems that can measure whether the policy change improves outcomes.” -Page 34

In April 2014, as the National Coordinator of the Coalition for Community Choice, I attended a meeting of the Interagency Autism Coordinating Committee (IACC). Inasmuch that less than 2% of research funding for autism goes towards evaluating supports of adults on the spectrum, I suggested areas of research that would directly impact adults on the autism spectrum as well as influence policy decisions. The following questions apply to those on the autism spectrum and to the broader population of individuals with I/DD:

  • How does setting design, program structure, and/or sensory-friendly environments influence quality of life?
  • Are these unique supports protected in policy?
  • How can technology and/or natural supports be used more effectively?
  • Those who have the most challenges are often the first to be denied opportunities.
  • What are better employment supports for elopement, self-injurious behavior and medical fragility or for those who become so frustrated that their only way to communicate is through physical behaviors?
  • What trainings, assessments, and retention strategies are most effective for direct support staffing?
  • What specific elements or barriers cause feelings of loneliness, under-appreciation, or isolation?
  • What are the greatest  impacts on the quality of life of individuals in different employment settings? Presence of peers? Consistency of job coach? Income level? Feeling valued?
  • The support options in every state must be quantitatively and qualitatively assessed:
    • How do states plan to meet the demand?
    • What are the specific barriers to employment choices?
    • Who is being left out or falling through the cracks?
    • Are state officials meeting the needs and preferences of their constituents?

The interests, support needs and employment goals of those with I/DD are diverse. States should not over-rely on just one model of employment as policy should be flexible enough to encourage more diversity in emerging models of employment. Policy should not eliminate opportunities for those with I/DD but, instead, encourage diverse opportunities to meet individual employment objectives.

above all choice matters

Maine’s aspirational goal “To Create Improved Employment Opportunities for People with Disabilities” is commendable. However, this attempt to improve employment outcomes by eliminating employment choices is not truly a person-centered method, especially if the crux of employment success is based on physical settings and whether an individual finds competitive, integrated employment. Above all, meeting employment goals set by individuals with I/DD and improving their quality of life should be the marker of success.

Additionally, defining specific parameters for “competitive, integrated settings” may eliminate workspaces of the future. For example, Star Ford is an autistic entrepreneur and founder of Ocate Cliffs, an eco-retreat center that aims to be staffed largely by autistics. In a recent interview, Star discusses the need for “autistic workspace,”

Any minority group can benefit from a safe space, which is a place controlled by that group. When you go there as a member of a minority, you might feel relieved, welcomed, or empowered by letting go of that constant stress of being the ‘other’ in the wider world. With autism it is no different. A low-stress cognitively-accessible safe space for us that’s conducive to personal and career growth is what I call an “autistic workspace.”

Under Maine’s new policy, it is unclear if an “autistic workspace” like Ocate Cliffs would be considered integrated enough. This is why the intent of the new federal regulations regarding the funding for supports through Home and Community Based Service (HCBS) waivers is so important to preserve:

In this Final Rule, CMS is moving away from defining home and community 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. (CMS Factsheet)

Federal policymakers focused the new HCBS regulations on the quality of life of individuals, and emphasized the importance of a person-centered plan and and annual review of that plan in order to make sure their support needs and life goals are being met.

Policy alone will not improve employment outcomes for those with I/DD, and in the case of Maine, it can actually decrease employment rates. Across the country, local communities are trying to create employment opportunities that are created around the interests and abilities of those who have not found meaningful work. These efforts to increase the variety of employment options should not be thwarted by well-intentioned, yet inflexible, policy. One’s choice of where and with whom he/she  would like to work should be guided by the goals, interests, and support needs of every unique individual with I/DD as outlined in a person-centered planning process.

CALL TO ACTION: If you believe that policy should increase options and decrease barriers to quality employment choices, consider joining the Coalition for Community Choice: A new alliance of organizations, businesses, and housing professionals that strive to meet the housing and employment demand for an array of life options for those with intellectual/developmental disabilities (I/DD).


Desiree Kameka

 Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism Foundation

Desiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. 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. 

Speaker of the House and 13 Ohio Members of Congress Support Farmsteads!

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.

Emily family

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/

70 organizations sign onto important letter to CMS

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:

click to view pdf

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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When Mom’s Plans Aren’t Enough: Pam Finds “Home” in a Caring Community

Pam’s mother promised that Pam would be able to stay in her family home and continue her existing lifestyle even when her mother was no longer around. Upon her mother’s death, Pam was fortunate to have siblings that were prepared to interview, hire, and manage the direct support staff Pam needed. The goal for Pam was for her to live as independently as possible in her family home with her beloved dog, “Rachel”.

Unfortunately, things did not go as Pam’s mother may have wanted. Although Pam was able to stay in her family home with 24/7 support staff, something was missing. The staff cared for Pam physically, however her greater potential was not being realized within the daily monotony of television programming and routine meals.

In facing the difficult decision as to whether or not to go against her mother’s wishes, Jan explored alternative living situations for her sister. She discovered Live Oak Living, an intentional community where 16 residents with traumatic brain injuries or developmental disabilities live. When Pam expressed anxiety towards her life ahead at Live Oak, the community made special accommodations to ease her transition including constructing a fenced in yard for “Rachel”. Pam moved into her own studio to start her new life in a community that embraces individual choice and is encultured with person-centered support. Now, Pam can stroll over to a friends house, attend classes if she desires, or simply go for a walk with “Rachel” to visit her new equine friends. Pam described a shopping trip with her sister, and though she missed going to see Captain America, she returned just in time for “Girls Night” that evening!

After the interview, one of the staff members suggested that Pam put in an application to work at the bakery down the street. In noting Pam’s initial reluctance, the staff reminded her of her delicious cheese pimento, which was just enough moral support to help Pam consider a new employment possibility.

ACTION ALERT: Make Sure Your State Isn’t Restricting Housing Options

Public comments on your Statewide Transition Plan needed!


Does this affect me?

If you are receiving waiver services, you may be affected. At a minimum, the settings in which you are supported will be subject to scrutiny to ensure compliance with new regulations.

Worst-case scenario could include:

(1) the closing of a housing, employment or day program

(2) a requirement that you find an alternative program and/or living situation

(3) being forced to find an alternative funding source for your program (other than Medicaid) and/or

(4) dramatic changes to the operations or programs in which you participate.

Background – History of HCBS Waivers

The U.S. government authorized the “Medicaid 1915(c) Home and Community-Based Services (HCBS) Waiver program” in 1981. Prior to this, beneficiaries could only receive comprehensive long-term care in institutional settings. This law allows states flexibility to offer different types of support services to individuals with disabilities in their own home or other settings in the community. States are in charge of creating different waivers to meet the needs of their citizens, the term ‘HCBS waiver’ is the broad term that encompasses all of the different waivers available in states.

What is changing about HCBS waivers?

In January 2014, the Center for Medicaid Services (CMS) issued new regulations defining HCBS settings, in other words, where waiver recipients can use their supports. Prior to these changes, HCBS setting requirements were based on location, geography, or physical characteristics. The new regulations define HCBS settings as outcome-oriented and guided by the consumer’s person-centered service plan (PCP). This is a huge step forward as policy is intended to ensure more individualized supports based on the needs, choices, and experiences of individuals with disabilities.

Every state is now charged with revising and assessing their state policy and HCBS settings to make sure they comply with these new federal CMS regulations. This is the opportunity to open the doors to more local housing solutions, BUT it can also create barriers! For more information about how these regulations can open or close doors in your state, see the CCC HCBS Policy Brief and its accompanying FAQ.

What can I do to help my state and ensure policy does not limit support options?

According to these new federal CMS regulations, your state has an obligation to seek and revise their policy based on public comment – that includes YOUR voice!

Your state MUST release a draft of their proposed Statewide Transition Plan (STP) for public comment for AT LEAST 30 days. Additionally, they MUST have another option of collecting public feedback which may include an in-person forum. Once they receive feedback, they are suppose to revise their STP based on public comment and submit it to CMS for approval.

What is a Statewide Transition Plan (STP)?

The Statewide Transition Plan is the document describing how states will assess and remedy their compliance with the new HCBS regulation requirements, and then provide this written description to CMS. The state may also assess individual settings/types of settings to further document their compliance.

States have until March 17, 2015 to submit their STP to CMS and five years to complete implementation and become compliant with the new regulations.

Every state is sharing and asking for public comment on their STP draft at different times, and your states public comment may be open right now! Visit the HCBS Advocacy website for information about your state and check it regularly to make sure you do not miss your public comment period!

What should I look for when assessing and providing comment on the Statewide Transition Plan?

Though the federal regulations regarding HCBS services have already been finalized, stakeholders can provide input into both the process for implementing their state’s STP as well as ensuring that their state follows the guidelines and intent of the outcome-oriented federal regulations established by CMS.

Every state’s STP will be different, but here are some suggestions based on feedback from members of the Coalition for Community Choice:

  • Does the STP include many opportunities for feedback throughout the five-year process from a variety of stakeholders, including individuals with disabilities and their families from an array of settings choices? Share your willingness to be part of any stakeholder committees.
  • Will your state publically post stakeholders comments, their summary of public comments and final draft of the STP that will be sent to CMS? Doing so will ensure transparency and accountability to stakeholders.
  • Are assessment tools going to be reviewed by stakeholders before being implemented? The STP and all surveys developed should focus on a “quality of life” analysis rather than on narrow characteristics such as size, geographic locations or other physical characteristics.
  • Is criteria described in outcome-oriented terms? Criteria that is not based on individuals experience, and therefore not following the intent of the new CMS regulations, must not be included as it may limit options. For example, statements such as “Only 4 HCBS recipients can be served in a setting,” “Residential settings can not provide employment or day programming,” and “Settings are limited to …” are not based on quality of life of waiver recipients. A setting should not be evaluated on its own without examining the individuals being served and their person-centered plans.  “Appropriate” means different things to different individuals and the settings must be evaluated through that lens.
  • STP should examine the merits and compliance of each setting on its own without lumping any settings into a generic category. For example, states can not assume “all” congregate settings, farmsteads, gated communities, disability-specific housing or clustered group settings are the same and, therefore, automatically non-HCBS settings.
  • Is educating the public about the importance of the Person-Centered Plan (PCP) and facilitation requirements listed as a priority in your states STP? The PCP is crucial for the future as it will ensure recipients are receiving individualized supports and life opportunities and are being supported in a home and community of their choice.

Generally, you want to make sure your state is not adding further restrictions or regulations beyond the federal requirements for HCBS settings. See this CMS Fact Sheet to learn what the new federal HCBS regulations require: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Downloads/Requirements-for-Home-and-Community-Settings.pdf

What else can I do besides submit public comment?

  1. Attend a public forum on your STP in order for state leaders to hear directly from waiver recipients, their families, and providers.
  2. Tell us your concerns during your advocacy efforts as we can offer these instances as examples to federal leaders. For example:
    1. Do you feel as if your state leaders are listening to your public comment?
    2. What have your state leaders stated about being unable to meet your requests?
    3. Did the state widely disseminate information about the new regulations and public comment periods?
    4. Is information in plain language that self-advocates with intellectual disabilities can understand and therefore facilitate their input?
    5. Was your public forum well-attended by a diverse population with various perspectives?
    6. Share your public comment with others in the CCC as an example.
  1. Join the CCC to stay updated and receive more action alerts.
  2. Pass this information and CCC along to your friends, families, organizations and other organizations.
  3. LIKE, follow, and share news on our CCC Facebook page.

Where Can I Find More Information?

CCC members can request examples of letters other members have submitted. Contact Desiree Kameka, CCC National Coordinator: DKameka@Madisonhouseautism.org

CMS Toolkit sent to states about the State Transition Plan: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Statewide-Transition-Plan-Toolkit-.pdf

HCBS Advocacy website with the list of state by state links and national resources:


Links to websites for state specific statistics on the need for more housing options:


Official CMS HCBS Webpage: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Home-and-Community-Based-Services.html

Final CMS 2249-F/2296-F Regulations in Federal Register (Note: the first 70 pages is discussion in response to the rounds of national public comment periods over several years during the development of these new regulations)


Are You Developing Housing or Employment Programs serving Individuals with I/DD? This Event is for You!

If you are planning, developing, managing social enterprises or a residential community for those with developmental disabilities, you may want to attend the next Brookwood Community Network Days Conference, February 11-13, just outside of Houston, TX!  It is a three-day immersion into the day-by-day operations with in-depth seminars led by staff who “provide an educational environment that creates meaningful jobs, builds a sense of belonging, and demands dignity and respect for adults with disabilities.” Learn how one mother’s school, started in a room at a church, transformed into the Brookwood Community, a faith-based, intentionally neurodiverse community on a beautiful 400-acre campus just outside Houston, TX. Brookwood employs over 180 individuals  with intellectual and developmental disabilities (I/DD) in social enterprises  and provides a home and community to 100 of these ‘citizens.’ Thousands of customers visit their restaurant and browse their store, and volunteers get the opportunity to share the communities amenities while supporting those with I/DD.  Having been there several times myself, I can say – it’s a whole ‘lotta family fun!

Here are some highlights from March 2014 Network Days:

As we worked side-by-side with citizens in horticulture and crafts, the Brookwood staff divulged their secrets to planting over 45,000 poinsettias in just 4 days and creating 33,000 pieces of art every month. Their best advice to create income-generating social enterprise opportunities is to find a proven professional in the field to assist in identifying and developing one or two original, high-quality, in demand products. Afterwards, determine the product’s appeal by selling it at local venues. Start somewhere and embrace the journey – even if you are simply creating ornaments from self-dry clay, cookie cutters, or bunches of herbs.

The Brookwood Community and its staff shared volumes regarding best practices in social enterprise. Interspersed with time for networking, Brookwood staff led nine seminars such as ARM Your Mission: Attracting, Retaining and Motivating Staff, Admissions: A Process and Pathway to Hope, and my favorite, How to Raise $1M with 3% Expenses. Vivian Shudde, Executive Director and daughter of Brookwood’s founder, imparted her wisdom as well, “If you have the right leadership, money will follow.”

Not only did we get to see Brookwood citizens at work, they invited us into their homes for dinner, and we had a rousing basketball tournament together that night! Michelle offers her insights on the Brookwood living experience in the video below.

The energy from everyone gathered, learning, and growing together was palpable. The event can be summed up in the words of  Joe Mazzu, Brookwood’s Director of Development, “We are making history together!” 


Schedule and Registration  To view their conference held in November visit www.brookwoodcommunity.org. Online Registration for our February Conference will open Friday, January 9 or you can register early by emailing or faxing the registration form back to my attention.  Space is limited to 75 people so register early.

Conference Contact: Jana Mullins,  281-375-2260


Desi’s Desk: Vacation with a Cause | Erik’s Ranch & Retreats

As part of a nationwide movement to create local housing and employment solutions, the mother of a young man on the autism spectrum started Erik’s Ranch & Retreats. This past April, the Minnesota retreat opened its doors, and a second location, a Montana ranch, is in the process of fundraising to build a living and working ranch with the guest accommodations run by the adults with autism who live there. They have a $2.7 million capital campaign goal that will build 4 guest houses, two member residences that would provide independent living for up to 14 adults with autism, a visitor center, and a riding arena. Located just outside of Minneapolis and the Mall of America, Erik’s Retreat offers their bed & breakfast guests and local “voluntourists” transportation, breakfast delivered to their rooms, and specialty tours led by adults with autism. Erik’s Retreat employs these individuals while giving them an opportunity to showcase their strengths and abilities for a wage of $14/hr.

The inspiration for starting the retreat was Erik’s love of horses. Erik is a non-vocal, autistic adult who needs one-to-one assistance, but he is part of a growing team of five tour guides who lead visitors through various fun destinations such as the Commemorative Air Museum, the Walker Art Museum, University of Minnesota Stadium, and the Canterbury Racetrack.

‘Members’ at Erik’s Retreat are not molded to pre-existing jobs – instead, jobs are structured to suit individual interests and skill sets. This is not just another bed & breakfast – Erik’s Retreat in Edina, MN offers person-centered employment options, individualized life planning, planned recreational and social activities, and supportive housing arrangements for adults on the autism spectrum.

  • Erik’s Equestrian Encounter takes city folk out to a small farm where Erik demonstrates the elements of horsemanship as an assistant narrates. (Check out Erik riding here: http://vimeo.com/64736523)
  • Following an interest in her family heritage, Mariah can take you on a one-of-a-kind Irish tour around St. Paul to see the cathedral and learn some Irish phrases at O’Gara Pub, complete with a whiskey tasting and live performance featuring herself and an Irish musician.
  • Who better to lead an architecture, art, and history tour than TJ with his impeccable memory and passion for the arts?

Deanette Smith, Director of Programs and mother of a 9-year-old on the spectrum, left her corporate job to join the Erik’s Retreat family after enjoying a tour. She participated in her first tour as part of a corporate team-building activity with TJ and Erik as guides. Deanette states, “It was team-building, fun, and clearly built [the guides’] confidence.” Though Deanette was particularly inspired given her experience as a mom, her colleague later told her that it was the best team-building event they ever had with off-site managers.

I had the pleasure of staying at the newly renovated Erik’s Retreat while visiting Minneapolis. The guest rooms are clean and comfortable, accommodating for even extended stays as each contains a kitchenette. Typically I can be a bit grumpy in the mornings, but when my personal concierge, Sam, brought breakfast to my room, it was almost as good of a welcome to my day as coffee – well, almost …

There is an overwhelming need for more local solutions like Erik’s Retreat. They currently have a waitlist of over 180 individuals seeking housing and are still trying to raise money to complete renovations in Minnesota, while also building guest accommodations in Montana.

Next time you are thinking of planning a trip to the Twin Cities, support their efforts and make a reservation to stay at Erik’s Retreat. Oh, and don’t forget to take a tour or two!

Desiree Kameka

Desi’s Desk is a blog post written periodically by Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism Foundation

Desiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. 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.

Study: 50% of Americans don’t recall the name of “that lady across the street”

By now, many of you have probably seen Brian Bethun’s article The End of Neighbors or coverage by The Today Show, TIME Magazine, or AOL that reported 50% of all Americans do not even know their neighbors’ names. Bethun illuminates the notion that we, as a society, need to foster more human connections.

It is no surprise to those of us in the disability advocacy community that neighborhoods today are not cultivating community relationships let alone integrating those who have intellectual or developmental disabilities (I/DD). For years, organizations, like those in the Coalition for Community Choice (CCC), have been working to convince policymakers that being part of a meaningful community must extend further than simply being located in a neurotypical residential neighborhood.

People with I/DD who are living in their family homes or group homes often have little social capital because they lack employment options, transportation, and opportunities to develop real unpaid friendships with their neighbors. I may have a conversation with the gentleman who bags my groceries every week, but I don’t feel it’s appropriate to invite him to my apartment for dinner as he takes my groceries to the car. We first need to build a relationship … but how?

Grass roots efforts across the nation are trying to create public-private partnerships and develop “intentional communities” that would offer urgently needed housing options to people with and without disabilities. By fostering integration and relational community, these spaces may include planned recreational opportunities, social enterprise employment options, and community amenities that would benefit the local area. Counties, faith communities, and local non-profits have stepped in to support these efforts financially. Designed and informed by local individuals with I/DD, these community projects relieve states of a financial burden. While discrimination and NIMBY (Not In My Back Yard) are struggles facing these supportive housing opportunities, government policy creates barriers, as well.

Susan Pinker, author of the Village Effect, says that “face-to-face contact matters: tight bonds of friendship and love heal us, help children learn, extend our lives and make us happy.”  The CoHousing movement, Fellowship for Intentional Communities, Agrihoods, and other “Live-Work-Play” planned communities are emerging for neurotypicals who are fighting against the effects of isolation. Intentionally neurodiverse communities aim to foster supportive environments that value and nurture relationships.  You will undoubtedly learn your neighbors’ names in these friendly neighborhoods.

The stigma of “congregate settings” for those with disabilities stems from a troubling history, but we shouldn’t be creating barriers to affordable housing solutions that offer access to recreation, employment, and real relationships for people with and without disabilities. What constitutes as “home and community” shouldn’t be defined by policymakers, but by people with I/DD who have the right to live in a home and community of their choice.

If you would like to  connect with others and be an advocate for increased supportive housing choices in your state, Take action now and make sure your state ensures people with I/DD will have a broad range of housing options for the future!

House Passes the ABLE Act: Take Three Minutes to Get It Through the Senate!

Achieving a Better Life Experience (ABLE) Act was just passed in the House by an overwhelming vote of 404-17! It must now pass through the Senate and could be voted on as early as next week.

The ABLE Act would allow for the creation of tax-sheltered savings accounts (similar to a 529 college savings account) for people with physical, intellectual, and developmental disabilities to save money without putting their federally funded public benefits in jeopardy.

Up to $100,000 can be saved for disability-related needs such as education; housing; transportation; employment support; health, prevention, and wellness costs; assistive technology and personal support services; and other expenses.

Many disability advocacy groups have worked very hard to get this Bill to the floor, and now they need YOUR help to get it through the Senate!

Please contact your Senators and tell them to support the ABLE Act!

Find your Senator’s contact info here: http://www.senate.gov/general/contact_information/senators_cfm.cfm
Please call, and share your support by using the following script:

“My name is [your name] from [your organization and/or coalition]. I’m calling to ask you to support the ABLE Act of 2014, H.R. 647 / S. 313, so that individuals with disabilities and their families can better financially prepare for the future and move towards economic self-sufficiency.”

End the call by thanking them for their leadership.

Working together, we CAN get the ABLE Act passed!

Voices Uniting: Coalition for Community Choice

In January 2014, Coalition for Community Choice came together and continues to grow as a unified voice for increasing options and decreasing barriers to housing choices.

Several years ago, the Centers for Medicare & Medicaid Services (CMS) released a proposed rule change that included changes that defined what settings people with disabilities could use for their Home & Community-Based Service (HCBS) waivers, a funding resource that offers people the chance for greater choice of their desired service providers. Ironically, the proposed policy actually restricted options, and the responses to these changes were overwhelming (See LTO Venture’s Choice v Olmstead for a great commentary).

These changes provoked another round of modifications and release for public comment, which, despite previous feedback, continued to include restrictive definitions of “home and community”. The final version was released in January 2014, since then the CCC has written a policy brief, FAQ, and other materials to explain what these changes may mean for current housing options and the future development of innovative housing for people with disabilities. With almost one million people with intellectual and developmental disabilities still living with caregivers over the age of 60, policy should not be creating any barriers to new affordable housing options.

In light of these staggering figures, the Coalition for Community Choice is committed to bringing together like-minded people and organizations in an effort to explore strategies to ensure that people with disabilities, not policymakers, have the right to 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 a home and community of their choice.

If you believe people with disabilities should have the broadest range of affordable and accessible housing options, please contact the CCC National Coordinator, Desiree Kameka at DKameka@MadisonHouseAutism.org to add your name and/or organization to the growing list of CCC supporters and stay connected for future advocacy alerts.

Welcome to the Coalition for Community Choice’s New Website!

Here, you can learn all about the work we do to advocate for housing choice for those with autism and other intellectual/developmental disabilities.