From the Interagency Autism Coordinating Committee on Autism Housing Needs, 7/23/19

This is from an account of the Interagency Autism Coordinating Committee meeting on 7/23/19 by Jill Escher: 

Susan Jennings, founder of Keeping Individuals with Intellectual Disability Safe (KIIDS) shared an oral public comment that her son is one of those who kicks down doors and elopes into traffic. He has been discharged from six different group homes, as none could manage his challenging behaviors. She cited systemic shortcomings to community group home, including severe abuse and toxic over-medication. His salvation was an ICF, and she laughed at the idea of “forced institutionalization” since “You can’t force your way” into an ICF since “they are closed or closing.”

She said her son is far from an anomaly. About 40% of the autism population exhibits severe challenging behavior. Because of the lack of options, these adults often languish in psychiatric facilities, hospitals, or jails. The Olmstead Supreme Court decision recognizes that the ADA does not impel states to close institutions, and indeed that some individuals may need these setting for crisis periods or permanently. They must remain available, as they offer a superior form of care for a segment of the population, she said. There are very high costs to keep some adults “in the community” with too little assistance and supervision. “The state center is a bargain compared to the community,” and also provides her son a much greater degree of personal freedom. Also, unlike community settings, ICFs must meet rigorous standards to be certified. She drew attention to the direct service provider (DSP) shortage: “You are asking people to handle life-and-death emergencies at fast-food wages.” Finally she denounced the “cruel movement afoot” to defund out-of-home options. If parents do not have the ability to care for severely affected adults — who does? We must offer a full range of services.

A "Home Grown Community" in Washtenaw County, Michigan

This is a note from Kerry Kafafian, about a new organization that intends to build a Home Grown Community (HGC) in Washtenaw County. 

Home Grown Community (HGC) has accomplished a lot over the last few months. The organization has:

• Incorporated in the State of Michigan as a Nonprofit Corporation.
• Named a Board of Directors.
• Visited other housing communities including Benjamin's Hope and St. Louis Center and will visit Bitter Sweet Farms this summer
• Finished a Business plan with a construction and operating budget 
• Applied to the IRS for 501(c) 3 tax exempt status  
• Built strong connections with several IDD groups and service providers and law makers
• The Web site will go live soon 

Home Grown Community (HGC) is inspired by Camphill and Innisfree Villages, as a voluntary community with adults with intellectual and developmental disabilities. HCG is dedicated to providing a Lifesharing home and learning environment in an atmosphere of beauty warmth, and respectfulness. All community members are valued, and all are encouraged to explore and contribute to a meaningful and challenging life.

Our location will be on the outskirts of a town in Washtenaw County, MI. Roughly 100 acres will hold a farm, Community Center, Craft House, 6-10 homes with about 10 bedrooms each (4 for Residents and 6 for Coworkers) and there will be a cafe/coffee shop along the main road.

For a great example of an over 30 year old lifesharing community see Innisfree Village. 

Here are some good Videos to view and share with others: 

Benjamin's Hope in Holland, Michigan

Innisfree Village in Crozet, Virginia

Camphill Village, New York

Washtenaw Coalition for Community Choice Meeting - 4/9/2019

Join us for a meeting to get started on creating a housing community in Washtenaw County for Adults with I/DD including ASD based around a working farm, but still in Ann Arbor/Saline area. 

Tuesday, April 9, 2019 

6:30 – 8 PM 

2144 S. State St. 

Ann Arbor, MI 

Keller-Williams offices top floor 


Show Map

 

Hosted by the Washtenaw Coalition for Community Choice (WCCC)

Increasing Options and Decreasing Barriers to Housing Choices for those with Intellectual and Developmental Disabilities (I/DD) in Washtenaw County 

This will be a parent/caregiver lead group. Email Kerry at kerrykafafian@gmail.com with questions .

Group Living in Ann Arbor: OK for Young Professionals and Students, but not for Adults with Disabilities???

This is about an article in the Ann Arbor News, “Group-living townhouses with co-working space will target young professionals in Ann Arbor” by Ryan Stanton, 2/23/19. 

You may detect a note of sarcasm on my part, when I describe what is being proposed here in Ann Arbor to much acclaim. If this were proposed by families of adults with intellectual and developmental disabilities, as a housing and service solution for their family members, some advocacy groups would denounce the effort as an attempt to re-institutionalize people with IDD and segregate them from society by providing services where they live targeted to their specific needs. 

Because this project is designed for young professionals, with the idea of helping them save money and share services with other like-minded adults, we are unlikely to hear cries of righteous indignation and accusations that it is just a scheme to oppress and infantilize young professionals. This is a complaint you would inevitably hear if this was built for people with disabilities. I think it would be a fine idea to have an option like this for people with disabilities who prefer group living and can benefit from it.

To be clear, housing people with disabilities was not an issue in this article, and I don't mean to imply that there was any hint of discrimination by the city or developer against any particular group of people. This is just me, struck by the contrast in how we think about non-disabled people just living their lives, and people with disabilities being caught up in controversies over other people wanting to decide for them how they should live.

The Housing Project for Young Professionals:

A developer will build 11 six-bedroom units, that city officials initially assumed was for students used to dorm-like living: 

“This is emphatically not a student housing project,” said developer Heidi Mitchell of Prentice Partners of Ann Arbor.

“It is actually a co-living, co-working space with (shared) vehicles targeted toward young professionals.” 

Here is what is planned:

“The apartments are conceived as three-story walkups, with the first floor being a common area with kitchen/dining and living/gathering spaces, four bedrooms, each with a bathroom, on the second floor, and two bedrooms with a shared bathroom on the third floor.

“‘Each townhome is designed to be a standalone unit, sharing only the exterior areas as collective commons space,’ the plans state, noting there will be a row of five units and a row of six units, with a ‘mews’ design that allows for communal access and gathering between."
...

“Bedrooms will be about 150 square feet, giving each tenant what Mitchell calls their own ‘cocoon suite.’

“Each townhouse will have its own front door access, as well as a second access from the communal area.”

The project is designed to allow people to live without owning their own car and to share workspaces so they can work from home if they want.

“The site is within walking and bicycling distance of downtown, the UM campus, a grocery store, CVS, and other destinations, including a bowling alley and UM athletic facilities, with nearby access to public transit.”

“'Obviously we’re not allowed to say you can’t rent if you’re a student, but I can promise you all of our marketing efforts will be directed toward people who are in the workforce,' she said, calling housing for young professionals 'definitely an area of need in the city.'

“'..all of our marketing efforts will be directed toward people who are in the workforce,' says the developer and not at students. "

Do I detect a whiff of discrimination here, not to mention segregation? Definitely not! This is for normal people choosing to live together who also lead their own lives and find it easier and less expensive when so many of their needs can be met in one place.

But six bedrooms in one townhome??? That sounds suspiciously like a group home, congregate living, an intolerable predicament if the people who were living there were disabled. And there is no doubt about it, 11 town homes in close proximity to each other with six people living together in each unit definitely makes it an institution. 

Oh, the horror! Bring on the Young Professional Self-Advocates who know exactly how every young professional should live and will work tirelessly to stop this project in its tracks! 

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See also, "Saline, Michigan: Families take the initiative in creating new housing for people with DD", The DD News Blog, 2/13/18 

"...Dohn Hoyle thinks the Saline project falls short. Hoyle is the public policy director for the ARC Michigan. Because the condos will have 24-hour care and house only residents with disabilities, Hoyle sees less independence than what’s being marketed…'It will be their own place in the sense of their own condo, but remember what you’ve done is you’ve set up a group-living situation [by] having everybody who lives there have a disability,’ Hoyle said.”

Wayne County, MI, Advocates for IDD: Workshops on Medicaid, employment, and housing

This is an announcement of events in Wayne County, Michigan, from parent/advocate Ed Diegel:

During the last several election cycles I heard only Barack Obama mention that in addition to providing Medical services to the needy, Medicaid also provides funding for the intellectually and developmentally disabled, the mentally ill and persons suffering with substance abuse. Furthermore, in my state district during the 2018 election,  the Michigan Republican Party flooded the district with fliers suggesting that extending Medicaid would only extend Medicaid fraud, inferring in effect that all Medicaid recipients are lazy and fraudulent. 

My friends, it is you and I who are responsible for allowing politicians and our friends and neighbors to harbor the idea that Medicaid is BAD. We need to do a much better job of being honest and effective and speaking out about the tremendous benefit to our individuals and communities that this program delivers. In addition there are issues being discussed in Lansing and Washington that have potentially severe impacts across the board and specifically on funding and on group home and workshop settings that need our attention.

Community Opportunity Center together with STEP and MALA is sponsoring the legislative issues and advocacy training workshop described below. Persons ready to speak up are encouraged to sign up for the workshop. Position papers of current issues, tips on effective lobbying and legislator town hall and in district coffee schedules will be provided.

Two workshop dates are available. Please see the following for detail:

++++++++++++++++++++++++

You Are Encouraged To Attend A Family Advocacy Training Session

Sponsored by: Community Opportunity Center and Services to Enhance Potential

Two Sessions Offered:

February 12, 2019 5pm-8pm

February 16, 2019 10am-2pm

Location: Community Opportunity Center
14147 Farmington Rd., Livonia, MI 48154

Educating legislators about the importance of Medicaid funding and about the needs and circumstances of our loved ones is essential if we wish to influence legislation and funding sources for their benefit. Issues related to housing and employment are under review and new legislation has been created at the federal level, which may have an impact on services our loved ones receive. For this reason, COC and STEP would like to meet with interested families and other support persons to discuss these issues and create an advocacy group, which in turn can share information with local, state, and Federal legislators regarding the impact of these legislative changes. 

If you wish to attend one of these sessions and to learn more about these issues, please contact Joyce Franks at, 734-422-1020 or jfranks@cochomes.net by Friday February 8, 2019. 

+++++++++++++++++++++++

Thanks, I hope to see you at the session. It's up to us to spread the word!!! 

Ed Diegel,

Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com

Solutions for Special Needs Housing

Below is an article from the Autism Housing Network that was originally written for the Special Needs Alliance in 2016. It is full of interesting links and information for families to come up with housing solutions for their disabled family members.

"I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions." ....Desiree Kameka

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Housing: A Big Piece of Puzzle for Ensuring Your Loved One’s Future

Article by: Desiree Kameka

Written on: Aug 27, 2018

This article was previously written for the Special Needs Alliance, posted here, and has been reposted on the Autism Housing Network.

As the project leader for the Autism Housing Network, I have visited over 100 residential options and social enterprises across our country. I have seen the great, the good, the bad, and the “I thought this was a good idea.” Abraham Maslow was right when he listed “shelter” as one of the foundational elements for his Hierarchy of Human Needs and Dimensions, along with air, water, food, sleep (another big one!) and clothing. A home determines physical and mental health, access to opportunities and quality of life for an individual. Housing is the anchor for a stable life.

When thinking about the future of your loved one with intellectual/developmental disabilities, you probably ask yourself if you should be focusing on finding the right service provider, building relationships, seeking employment, etc. We can invest enormous amounts of energy in pursuit of those important goals. But all that may be lost if rising rents force someone on an extremely low, fixed income, or their host family, to relocate. Or if the group home they live in must close. The greatest investment we make to ensure life stability is a home. Even when all other plans fail, loved ones still have their home.

To help families plan and understand their choices, Madison House Autism Foundation created a five-part video series called the AHN Virtual Tour of Housing and Support Options, which describes the benefits and considerations of 18 different housing and service delivery options, from traditional to emerging models. The video series will explain examples in depth, but there are four major categories to consider for legal and financial planning: 

Rely 100 percent on government support. 

Options include:

• An Intermediate Care Facility (ICF-ID), through which housing and support services are provided to eligible persons needing an institutional level of support; 
• Placing in a host family home, adult foster care or group home, with rent paid to the service provider using Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), and support services paid for through a Medicaid waiver; 
• Securing an affordable housing voucher/unit, with a Medicaid waiver paying for support services in one’s home. 

The availability of these options is extremely limited and can fluctuate, depending on government policy and budgets. This is where members of the Special Needs Alliance can be of great help, since public assistance is often “means-tested,” and it is important to be vigilant to ensure that one remains eligible. The AHN Resource Directory has a filter for ‘Finding Public Assistance’ that can lead you to helpful links.

Invest privately in housing and access Medicaid for support services and/or arrange supportive housemates. 

This disconnects one’s service provider from their housing and provides the most control over one’s home. One could continue living in their family home, or could move into a tiny home/accessory dwelling on the same property, or another home purchased for them elsewhere. Some families combine resources in order to buy a home together. Others may purchase a home/unit in an intentionally neurodiverse cohousing or planned community. A Medicaid waiver would then be needed to pay for everyday assistance and support. Under these circumstances, one can change service providers as needed without being forced to relocate. This separation of housing and service provider is generally referred to as “consumer-controlled” housing. Renting to roommates can offer an additional income stream to help pay for living expenses, as well as offering unpaid support. 

100% private pay, tuition-based residential. 

This can be a single apartment in a big city or a campus-based setting, where one has home, work and recreational options. Tuition includes one’s housing, coordination of daily in-person support, meals, planned activities, transportation and other services. This is an option only if you can afford tuition that starts at $38,000 a year for the individual’s lifespan. It is important to think about whether or not the provider will be around for the duration of your loved one’s life or what would happen if their support needs change. You can find a list of these in the AHN Housing Directory by clicking “Private Pay” under the “Payment Options” filter.

Transitional or post-secondary programs. 

This is not a permanent solution. Instead, it’s a private pay program that intensely teaches life skills, with the goal of giving someone the training needed to live more independently in the future. It is an investment of at least $2,500 a month for the duration of the program. These can also be found in the AHN Housing Directory.

I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions.

I hope this has been a helpful introduction and has persuaded you to prioritize housing when planning for the future.

Parents of adults with DD : Before I'm Gone

A short preview of parents of developmentally disabled adults discussing their fears for their children's future.

You can watch the full version and find more information at Parent Advocates for Neurodevelopmental Housing in San Francisco.

From Upstate NY : “Our families will not be silenced”

"How do I tell an elderly mother that her 'job' 24/7 is to take care of her adult son/daughter forever, that services are changing — and not for the better?"

This is an editorial by Cheryl Englert, the mother of a son with disabilities and a special education teacher from rural Upstate New York: “Insights: Our families will not be silenced”, 4/11/15.

After more than 30 years of working to see that New York state provides necessary supports to meet the needs of men and women with disabilities at work and in their homes, Cheryl Englert sees all that hard work being undone:

“While our local representatives have been supportive, Gov. Cuomo is turning his back on our most vulnerable citizens. Examples include a plan to close all sheltered work centers within six years, and a decree that actually prohibits new workshop employment right now. On the residential front, he has vetoed four bills that would have begun to address an expanding list of individuals who await housing because their family members are growing too old to effectively care for them."

Cheryl’s son Matt has a good life living in a 4-person home that provides 24-hour/day care to him and his best friends. He also works and socializes at a local sheltered work center. His mother can no longer speak confidently to the other mothers she talks to that those opportunities will continue to be available.

“The lack of choices and opportunities has had drastic effects on those families. It is like flying into a storm where you cannot see where you are going or how long will it take to reach the sunshine…” 

But they will not be silenced:

“Right now, hundreds of us across the state are writing letters and making phone calls to our elected representatives. We are organizing and expanding activism efforts, such as The Arc’s Family Advocacy Group (www.lwarc.org) — all in the name of better lives for individuals with disabilities and their families. It’s time to get this great state back on track!”

Read the whole article here.

Homelessness in Ann Arbor by the numbers

We know these are not just numbers, but human beings who don’t have a permanent place to call home with some of them inhabiting places that “are unfit for human habitation”. The weather forecast for 2/14/15 predicts snow showers, a high of 23 degrees, and a low of -10 degrees. Something to think about as we celebrate Valentine’s Day.

A report in the Ann Arbor News, "By the numbers: A quick look at the Ann Arbor area's homeless population" by Ryan Stanton, 2/11/15/, shows the results of two surveys of the homeless population in Washtenaw County, Michigan. A snap-shot survey required by HUD (the U.S. Department of Housing and Urban Development) showed 387 people were homeless on January 28, 2015. The second survey is part of a national campaign to end veteran homelessness by the end of 2015 and chronic homelessness by 2016. It includes more data and shows larger numbers than the first survey.

Here are figures I selected from the HUD survey that show the number of homeless people according to their various vulnerabilities, including chronic health problems and mental illness:

• 307: The number of homeless people who were found in shelters or transitional housing on the day of the count.
• 80: The number of homeless people found on the streets or in other places not meant for human habitation, including camp sites.
• 24: The number of sheltered veterans; 5: The number of unsheltered veterans.
• 53: The number of sheltered people with a severe mental illness; 41: The number of unsheltered people with a severe mental illness.
• 23: The number of sheltered people with a chronic substance abuse problem; 21: The number of unsheltered people with a chronic substance abuse problem.

The Zero: 2016 surveys provide additional data on people with chronic health and mental illness and other vulnerabilities:

• 334: The total number of homeless people surveyed.
• 224: The number of homeless people who were identified as being particularly vulnerable; 20 percent reported being violently attacked since becoming homeless and 25 percent reported being homeless for more than two years.
• 350: The number of emergency room visits in the past six months among the people surveyed; 174: The number of hospitalizations in the past six months; 115: The number of ambulance transports to the hospital in the past six months; 49: The number of people who indicated they've had three or more ER visits in the past six months.
• 165: The number of people who reported chronic health conditions; 243: The number of people who reported mental health conditions; 176: The number of people who reported substance use issues.
• 88: The number of people who reported all three: mental health, substance use and chronic health conditions. 
• 37: The percentage of chronically homeless people who reported all three: mental health, substance use and chronic health conditions. 
  

Housing crisis facing those with autism and others with DD

This is an animation from the Madison House Autism Foundation 

Where will 4.903 million individuals live?



Here are the facts:

There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD), 77%, who do not receive publicly funded residential supports.

1.127 million people with I/DD, or 23% do receive publicly funded supports. Of those, 56% live with family and 44% do not live with family.

Of the 44% who do not live with family, 127,000k or 27% live in their own home. The other 73% live in group homes (290k), foster homes (44k), nursing facilities (34k), and less than 1k live in psychiatric facilities.

From 2001 to 2011, 275k additional people got residential supports: 180k stayed with family and 95k moved out.

77k are on the waiting list for services needed in the next year. 853k are living with caregivers aged 60 or over. 

Remember: 3.775 MILLION OR 77% GET NO PUBLICLY-FUNDED SERVICES AT ALL!

"Community" is in the eye of the beholder

 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.... Desiree Kameka

From the Autism Housing Network: 

Study: 50% of Americans don’t recall the name of “that lady across the street”
 
By Desiree Kameka on August 15, 2014

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!

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Minnesota: Moving disabled out of congregate settings leads to clashes with elderly

Heights Manor in Columbia Heights, Minnesota, provides subsidized housing to low-income seniors. According to an article in the Minneapolis Star Tribune, more and more people with disabilities are being moved out of congregate residences (group homes and institutions) and into public housing projects, leading to clashes with elderly residents.   The article , "Influx of disabled residents leads to clashes in senior housing" by Chris Serres, 9/8/14, says that "Heights Manor, much like subsidized senior housing across Minnesota, is being pulled apart by a recent influx of younger people with disabilities, who are being forced by a tight rental market and a shortage of affordable apartments to live with the elderly. Statewide, the percentage of people with disabilities in public housing increased 24 percent between 2009 and 2012, the last year for which data are available, according to the U.S. Department of Housing and Urban Development."

Furthermore, "Disability advocates say such tensions are likely to intensify as the state moves forward with ambitious plans to further desegregate housing for people with disabilities. Under pressure from the federal courts, which recently admonished Minnesota for not moving quickly enough to integrate people into the community, state and local authorities are preparing to move thousands of people with mental and physical disabilities from group homes and other institutional settings to individual apartments."
 
Some of the incidents that have occurred at Heights Manor suggest that some of the new residents may have untreated mental illness or other mental disabilities: "One of the new residents would walk around the building while jabbing at the air with her hands, saying she was 'chasing away the devil,' residents said. Another new resident, a young man, was seen smoking marijuana on the third-floor balcony and playing rap music late at night. When elderly residents urged him to turn down the music, he screamed at them to leave him alone, Hall said."…"On July 4th, a half-dozen local police officers descended on Heights Manor after a resident in a wheelchair pointed a BB gun at a resident and then locked himself in his second-floor room. After kicking in the man’s door, police discovered a semi-automatic pistol as well as a rack with knives and a revolver mounted on a display in his bedroom, according to a police report."

Many of the senior residents are frightened and avoid places they used to congregate to play cards and socialize.

I can empathize with both groups in the housing projects. It is troubling that the anonymous state and local officials who came up with this idea did not foresee the problems in advance or did not care. The senior residents complain about disorderly conduct, unsafe conditions, and noise and disabled residents complain about discrimination by the elderly. The motivation for moving disabled people out of congregate care is supposedly for them to be integrated into the greater community. Instead, they are herded into public housing projects with other low income people, apparently not to integrate with the community, but to lessen the costs to taxpayers and to relieve government of the responsibility to provide humane and appropriate treatment.

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Is accommodation of seniors in congregate settings age discrimination in housing? Not according to the federal Fair Housing Act.
  
A Department of Housing and Urban Development (HUD) website on the Senior Housing Exemption states the following:



"Although the FHAct was amended in 1988 to prohibit discrimination on the basis of disability and familial status, Congress intended to preserve housing specifically designed to meet the needs of senior residents. Housing that meets the FHAct definition of housing for older persons is exempt from the law's familial status requirements, provided that:

• HUD has determined that the dwelling is specifically designed for and occupied by elderly persons under a Federal, State or local government program or
• It is occupied solely by persons who are 62 or older or
• It houses at least one person who is 55 or older in at least 80 percent of the occupied units, and adheres to a policy that demonstrates intent to house persons who are 55 or older.

"Therefore, housing that satisfies the legal definition of senior housing or housing for older persons described above, can legally exclude families with children."

Talking points for protecting DD individual housing choices

These talking points are found on the website of the Wisconsin Council for the Deaf and Hard of Hearing. They are in defense of a senior housing project in Arizona called Apache ASL Trails, a project specially designed for seniors who are deaf and use American Sign Language to communicate. The housing project received a complaint from the U.S. Department of  Housing and Urban Development (HUD) that they were discriminating against people who were not deaf and therefore in violation of HUD anti-discrimination policies. HUD finally backed down and withdrew its complaint.

This case parallels in many ways the plight of people with disabilities who live in or wish to live in congregate housing and planned communities that are freely chosen by the individuals or their  legal guardians, and meet the unique needs of the people living in these settings.

Many federally-funded advocacy organizations and the Centers for Medicare and Medicaid Services have insisted that funding through Medicaid waivers and state plan services to people with developmental and other disabilities may be restricted if the settings in which people live are too "institutional" and not  "community" enough as defined by the CMS. [CMS is the federal agency that regulates Medicare and Medicaid.] Influential advocacy groups and the National Council on Disability have gone as far as defining as "institutional" any setting where more than 3 people with disabilities live or receive services together.

Final rules issued by the CMS on Home and Community Based services and settings in January 2014 were modified from earlier versions to answer criticisms from many groups [See the Community Choice Coalition] and individuals who believe that there are many ways of living in a community. Congregate settings are not inherently discriminatory and do not violate the often misinterpreted 1999 Supreme Court Olmstead decision .

Even facilities that are explicitly defined as institutions (Intermediate Care Facilities for people with Intellectual and Developmental Disabilities,  nursing homes, mental hospitals, and other hospital settings) were not considered inherently discriminatory by the Supreme Court in the Olmstead decision when they are  necessary for people who cannot successfully live in community settings. Individuals may not be removed from institutional care to community care if they do not agree to it. 

The legal underpinning for the talking points on Apache ASL Trails is section 504 of the Rehabilitation Act of 1973: 

"No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any  program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency. . ."  29 U.S.C. 794 

HUD rules regarding housing discrimination do not justify disqualifying projects such as Apache ASL Trails:

• 24 C.F.R. 8.4(b)(1)(iv) allows recipients of Federal funds to provide different or separate housing to individuals with handicaps, or to any class of individuals with handicaps, if such action is necessary to provide qualified individuals with handicaps with housing that is as effective as the housing that is provided to others. 
• 24 C.F.R. 8.27 requires that accessible units be marketed to individuals who need the accessibility features of the units, and that the accessible units first be offered to individuals who need the accessibility features of the unit. 
• 24 C.F.R. 8.22(c) allows HUD to approve a higher percentage of accessible units than the minimum percentages required by the regulations. This approval can be based on any available current data or evidence of a need for a higher percentage, and the regulations do not prohibit a property from making all of its units accessible to individuals with hearing or vision impairments.

According to the Talking Points:

• HUD’s insistence upon an arbitrary 25% limit on the number of accessible units that can be rented to people with disabilities who need the accessible features has no basis in Section 504 or its implementing regulations and would in fact be a violation of 24 C.F.R. 8.27. 
• Any quota, by definition, violates 24 C.F.R. 8.27 and discriminates against individuals with disabilities. The protections of federal disability rights laws are not first come, first served.

CMS and other federal agencies are also subject to Section 504 anti-discrimination rules, regardless of an agency's attempts to use anti-discrimination law to limit access to benefits and housing choices that the agencies and many advocacy groups would like to eliminate.

Old News is Good News for Disability Housing Choices

I missed this story in January, but it is an important one. 

Remember the foofaraw in April of 2013 when the U.S. Department of Housing and Urban Development (HUD) decided that a housing project for deaf seniors in Arizona was discriminating against the non-deaf by allowing too many deaf people to live there? It even made the New York Times in an article entitled "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination" by Fernanda Santos, 4/28/13. The project called  Apache ASL [American Sign Language] Trails is specifically designed to meet the needs of people who are deaf and use American Sign Language as their mode of communication.

These are excerpts from a press release from the Arizona Department of Housing dated 1/24/14: 

STANDOFF WITH HUD OVER DEAF HOUSING COMMUNITY ENDS

Tempe, Ariz. – Ending a two-year legal standoff over the award-winning Apache ASL Trails community, the U.S. Department of Housing and Urban Development (“HUD”) today announced that it has withdrawn its Letter of Findings and closed the investigation involving Apache ASL Trails. In a letter to Director Michael Trailor of the Arizona Department of Housing, HUD concluded that Section 504 does permit Apache ASL Trails to give priority in rental to those individuals who need the accessibility features of the units.

Today’s resolution comes with a promise from HUD that it will permit Apache ASL Trails to continue offering priority to applicants who need the unique accessibility features provided at the community.

Trailor, who has long championed the rights of deaf Arizonians to have full and equal opportunity to access the housing of their choice, applauded today’s resolution, saying, “All citizens have the right to be a vibrant part of their community, to choose where they want to live.”

After receiving approval from HUD in 2008 to build the low income apartment complex to provide accessible housing to individuals who were deaf, hard of hearing, and deaf-blind, the 75 unit apartment complex in Tempe, Ariz., called “Apache ASL Trails” opened its doors and quickly became a thriving, barrier free, and vibrant community. In June of 2011, Apache ASL Trails won the prestigious Charles Edson Tax Credit Excellence Award for Accessible Design. Days later, HUD issued a Letter of Findings that placed a cloud over the successful community, saying that too many deaf people lived at Apache ASL Trails. The State of Arizona, in support of Apache ASL Trails challenged the Letter of Findings and the two-year standoff began. In February of 2013, HUD issued a letter directing the City of Tempe to terminate the Section 8 vouchers that had been promised.....

Perhaps more important than the physical features is the embracing of culture and language that allows residents to communicate in American Sign Language with the manager, their neighbors and with the hairdresser, doctor, and other service providers who have offices on the first floor. Hearing residents are provided interpreters so that they too can participate in the active social life at Apache ASL Trails. The motto of this wonderful and accessible housing is “Banish Extreme Loneliness.”.......

This resolution comes as a great relief to the residents, who have eloquently asserted their rights to be a part of their community and to have housing that is both safe and barrier free....

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Excerpts from the letter to HUD from the National Association of the Deaf, 4/25/13 

Section 504 of the Rehabilitation Act of 1973
(29 U.S.C. § 701)

"No otherwise qualified individual with a disability in the United States,... shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. The head of each such agency shall promulgate such regulations as may be necessary to carry out the amendments to this section made by the Rehabilitation, Comprehensive Services, and Development Disabilities Act of 1978..."

Community Choice Coalition letter to CMS on new HCBS Rule

The Community Choice Coalition (CCC) is a national coalition of organizations supporting increased housing options for people with disabilities. The CCC has written a letter to Marilynn Tavenner at the Centers for Medicare and Medicaid Services regarding the recent Home and Community Based Services Setting Final Rule (CMS 2249-F/2296-F) expressing its support of a broad range of housing options to solve the national housing crisis for people with disabilities. The letter is signed by JaLynn Prince, the President of the Madison House Autism Foundation in Rockville, Maryland, and 41 other organizations from around the country. Madison House Foundation is a public 501(c) (3) national organization working to eliminate barriers and increase opportunities for the rapidly growing numbers of adults with autism.

This is the body of the letter that was sent on March 4, 2014:  

Dear Administrator Tavenner:

Madison House Autism Foundation and the supporting signatories offer appreciation of the earnest effort to balance many perspectives in your consideration of Home and Community Based Services (HCBS) Settings Final Rule (CMS 2249-F/2296-F).

We were pleased to see that CMS is moving toward valuing the individual’s choice and experience of home and community as described:

"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." [Page 1, Summary of Key Provisions in the HCBS Setting Final Rule]

The process of public comments brought together many like-minded stakeholders who desire and support a full array of housing choices. These voices are no longer fragmented. We have united to establish the Coalition for Community Choice (CCC) and today, I am writing on our behalf. The Coalition for Community Choice believes people with disabilities should have the broadest range of affordable and accessible housing options, and we encourage the formation of public-private partnerships to create local solutions for the national housing crisis.

We look forward to ongoing opportunities to work with CMS to offer more affordable and accessible housing options that meet the needs of such diverse populations. We are happy to provide information or insight to the issues that many people with intellectual and other developmental disabilities and their families face. To that end, CCC expressly requests the opportunity to review proposed State Guidance Letters and provide input before publication.

Thank you again for your efforts to consider so carefully all stakeholdre input, and for the robust public comment opportunities at the state and federal levels that remain part of the Final Rule. We sincerely hope that CMS will continue to welcome public input as Guidance letters are drafted.

Sincerely,

JaLynn Prince, President and Co-Founder
Madison House Autism Foundation 

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The letter is co-signed by representatives of 6 national organizations and 35 other organizations from Arizona, California, Colorado, Delaware, District of Columbia, Florida, Maryland, Massachusetts, Michigan, Nevada, New Hampshire, North Carolina,  Ohio, Texas, Virginia, Washington, and West Virginia.

People on SSI can't afford housing

This is from a press release from the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD):

The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force have released a study, Priced Out in 2012, which demonstrates that the national average rent for a modestly priced one-bedroom apartment
is greater than the entire Supplemental Security Income (SSI) payment of a person with a disability. The study sheds light on the serious problems experienced by our nation’s most vulnerable citizens – extremely low-income people with significant and long-term disabilities.

The Study – Priced Out in 2012 – compares the monthly SSI payments [Supplemental Security Income is provided to people who have a very low or otherwise non-existent income and are not able to work] received by more than 4.8 million non-elderly Americans with disabilities to the Fair Market Rents for modest efficiency and one-bedroom apartments in housing markets across the country. The Fair Market Rent for rental housing is determined by the U.S. Department of Housing and Urban Development (HUD). According to HUD, rent is affordable when it is no more than 30 percent of income. SSI is a federal program that provides income to people with significant and long-term disabilities who are unable to work and have no other source of income and virtually no assets. Priced Out in 2012 reveals that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent.

“Nowhere in the United States can people with disabilities receiving SSI afford a safe, decent place to live,” stated Kevin Martone, Executive Director for TAC. “Yet taxpayer resources are spent exponentially on the costs associated with institutionalization and homelessness when more cost effective, proven solutions exist. I encourage our policy makers to consider the magnitude of this crisis and work in a bipartisan fashion to address this form of discrimination against our most vulnerable citizens.”...

The press release goes on to point out that in the midst of a housing crisis, the President's Fiscal Year 2014 budget cuts $40 million from housing subsidies that would allow states to target rental assistance to people moving out of institutional settings and homelessness.

This is a serious crisis, but I take issue with using the housing crisis for people who depend on SSI to further the cause of deinstitutionalization and opposition to congregate care in general. For people with severe developmental disabilities, the expense of housing is only part of the equation for providing appropriate services in all settings whether they are in community homes or institutions.  For my own sons, the cost of care and specialized services is far greater than the cost of housing. Moving people from institutional settings or congregate care does not necessarily save money overall and when it is done against the will of the people affected and their families or it results in a reduction of services and risks to safety, it can be deadly.

But yes, this is a real crisis for the many people who need rent subsidies to help them live a more independent, dignified, and fulfilling life.

Here is the link to the full report.