Dutch Dementia Village: 100% government funded

Saline, Michigan: Families take the initiative in creating new housing for people with DD

Read and listen to a Michigan Radio (NPR) interview, “People with disabilities at heart of new Saline neighborhood” by Doug Tribou, 1/29/18. Patty and Karl Rabe of Saline, Michigan, down the road from Ann Arbor, have joined with other parents and a local developer to create a new neighborhood that will include housing for their adult children with DD.

Their son, Bill Rabe, is 28 years old and lives with his parents. He has developmental disabilities including severe speech and vocabulary problems and needs someone around to help him. He will be living in a condominium in the new neighborhood and sharing resources with other adults with DD. His parents will also move into the planned community and be close by if Bill needs their help. According to the interview, “..Bill holds down two part-time jobs, is a Special Olympian, and likes to watch movies and play video games. His favorites are hockey games. “

The new neighborhood is called Maple Oaks; groundbreaking took place in October 2017. This project is the result of years of planning by the families, the developer, and the community of Saline. There is a great deal of excitement looking forward to the success of this project, in stark contrast to other communities that have reacted with fear and ignorance at the prospect of providing homes for people with DD.

According to the Saline Sun Times News in an article, “New Residential Housing Development Planned For Saline In Demand" by Angelo Parlove from 7/14/17, “A project team led by William Godfrey, who is the principal at Three Oaks Development and Advisory Services in Ann Arbor, plans to bring a multi-family development containing 34 units, which will consist of 10 single-family homes, eight duplexes and two community buildings which will hold another eight units each.”

Another article in the Saline Post “Saline Approves Final PUD for Development of 600 North Maple Road” by Tran Longmoore, 07/25/2017, describes the changes to zoning for Planned Unit Development or PUD that allows mixed density residential development for this project.

The developer William Godfrey said of the people moving into the new community, “some families already reside in Saline, while some are coming from out of town. Buyers include empty nesters who want to live close to family, families with children with special needs and young families who want to live near the middle school.”

The NPR interview and the additional news articles give a good idea of the intricacies of planning a neighborhood that prides itself in including housing for people with developmental disabilities.

Desiree Kameka from Madison House Autism Foundation, who was interviewed by NPR,  lauds the Saline community for providing stable housing for adults with DD. “Kameka says unlike group homes, the families will own the condos, giving them more control. Most of the young adults qualify for some government funded in-home care. The families are hoping to pool some of those resources…'They know that that housing will be secure...that their loved ones will never be kicked out, just getting placed in the next empty bed counties away, because a provider decides they don’t want to serve that person anymore.’"

Not everyone agrees that this project is a good way to integrate and house people with disabilities in the community: 

“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.”

Dohn Hoyle appears to be discounting or overlooking friendships and a desire to live together among some people with disabilities, the opportunity to rein in costs and improve services by sharing resources, the choice of people with disabilities and their families to live in such a community, and the excitement and enthusiasm by the Saline community for the success of the new neighborhood. 

Let’s hope that Hoyle does not lobby the State to refuse funding for services to the disabled residents as he has done in the past: 

The ARC Michigan: Our Way or the Highway

The ARC Michigan to the State : Stop funding congregate settings

Michigan : Washtenaw County events and news

The first event coming up this month is sponsored by Intentional Communities of Washtenaw (ICW), a non-profit group that is organized to help provide housing and services to people with DD:

Learn About the New Washtenaw CMH Strategic Plan

Speaker: Trish Cortes, CMH Director

Tuesday, January 10, 2017

7 - 8:30 P.M.

Washtenaw ISD at 1819 South Wagner Rd., Ann Arbor, MI 48103 (Between Liberty and Scio Church Roads)

Washtenaw Community Mental Health is the county agency that funds most Community Living Support (CLS) services for persons with disabilities. This month, the ICW program will provide family members with the latest information about changes at the agency and at the state level that will affect our loved ones. 

Our speaker will be Patricia Cortes, CMH Director. Trish holds a Bachelors degree in Nursing and a Master degree in Community Health Nursing from the University of Michigan. She has held a variety of positions with Washtenaw County since 2000 including Mental Health Nurse,Health Service Supervisor, Program Administrator - Developmental Disabilities, Program, Director of Health Service Innovation, and Director of Community Support and Treatment Services (CSTS) prior to becoming CMH Director. She has established and maintained countless internal and external partnerships in the community. She recently has led the process of developing the CMH Strategic Plan. 

Our monthly meetings are open to the public and offer a great opportunity to learn more about ICW and to meet other families with similar challenges. 

We hope to see you there.

Al Blixt, Board Chair
Intentional Communities of Washtenaw 

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St. Louis Center in Chelsea, MI is a "caring residential community for people with intellectual and developmental disabilities". It is sponsoring a program for special needs families on "Securing the Future":

Securing the Future 

for Special Needs Families 

Protect, Provide and Prosper 

Thursday, February 16, 2017 

7:00 - 9:00 pm 

St. Louis Center 

16195 W. Old US Hwy. 12, Chelsea MI 48118

Family Welcome and Orientation Center 

Many families with special needs children or adults have a difficult time navigating the future for their loved ones, and advanced planning can ensure a positive quality of life for years to come. Our advisors can help special needs families by explaining the ins and outs of saving and investing to ensure long term success. Please join us for an opportunity to ask our distinguished panel about financial investments, special needs trusts, and guardianship issues to obtain the answers you seek while planning for the future. 

Speakers: Dan Johnson, Investment/Financial Advisor, Northwestern Mutual, Southfield, MI.....Joshua R. Fink, Guardianship - Attorney, *Fink & Fink, Pllc*, Ann Arbor, MI;..... Daniel R. Shirey, Special Needs Trusts *Kitch, Drutchas, Wagner, Valitutti & Sherbrook*, Detroit, MI.

Please contact Joe Yekulis, PR Director, at SLC at 734-475-8430 

for more information or to register. 

To learn more about St. Louis Center, visit our website www.stlouiscenter.org 

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The "Village" at St. Louis Center

Groundbreaking Marks New Era for St. Louis Center (9/29/16)

After several years of planning and fundraising, the St. Louis Center finally celebrated a groundbreaking ceremony for St. Louis Guanella Village with about 275 of their closest friends on Thursday, September 29, 2016. The “Village” is considered an “intentional community,” with the construction of four new children’s homes immediately for children with intellectual and developmental disabilities. The “Village” will also include other segments of homes and townhomes for people with I/DD and their families. In spite of the rain soaked evening, supporters came from far and wide to enjoy a fine selection of hors d’oeuvres provided by Food Art, Inc. and speeches from key supporters and local dignitaries. Development Director Peggy Cole was moved that the time had finally arrived to sink shovels into the ground. “We owe this moment to our many supporters who see St. Louis Center as a bright light that is leading the way for others. We have many hard working committee members who share our dream of the St. Louis Guanella Village, and have worked to make this happen.”... 

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For more information on St. Louis Center's Guanella Village see the website:

"New housing built in the Village will guarantee the provision of the full continuum of care for aging people with I/DD and will provide housing and care opportunities for them and their families."

Madison House Autism Foundation comments on the future of services to adults with autism

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The Committee met at the NIH headquarters on July 19, 2016 to discuss business, updates, and issues related to autism research activities. Madison House Autism Foundation (MHAF) Executive Director, Adrienne McBride, delivered public comments on behalf of MHAF. Her powerful speech called for more “creative action” on a Federal level and service delivery models that better support adults living with autism. Watch her speech in the video above.

This is from the latest issue of the Madison House Autism Foundation newsletter. Other items of interest especially for those interested in housing for adults with autism include an article on "5 Reasons Why Autistic Adults Should Consider Tiny Homes" and more information about the MHAF rural housing project, Madison Fields.

See also information about the national HCBS Conference on 8/29/16 in Washington, D.C.

Michigan: Aacorn Farm - Expanding Choices, Building Community

Check out the Website for Aacorn Farm, an innovative agricultural community for adults with autism and other disabilities. It has an especially good "newsroom" with up-to-date information on autism.

Are innovative programs for people with autism and other developmental disabilities going to fall victim to the pressure by the federal government and federally-funded advocacy organizations to deny people with DD access to specialized residential and service options? See more about intentional communities and choice at the  Coalition for Community Choice .

Texas: Home in a caring community

From the Coalition for Community Choice Blog - "When Mom’s Plans Aren’t Enough", 12/9/14

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.

More links:

The Coalition for Community Choice

Madison House Autism Foundation

Congress Pushes Back on HCBS Rule Listing Farmsteads as "Isolating"

The Centers for Medicare and Medicaid Services (CMS) provided states with “Guidance on Settings that have the Effect of Isolating individuals receiving HCBS from the Broader Community.” "Farmsteads or disability-specific farm communities" are among the settings listed that may no longer qualify to receive Medicaid funding for Home and Community-Based Services (HCBS) under the new HCBS settings rule.

Many family groups have initiated projects to create planned communities, including "farmsteads or disability-specific farm communities", as a response to the poor quality and general lack of availability of residential options for people with disabilities. These communities have now been singled out for isolating people from the broader community:

From page two of "Guidance..."

"...Farmstead or disability-specific farm community: These settings are often in rural areas on large parcels of land, with little ability to access the broader community outside the farm. Individuals who live at the farm typically interact primarily with people with disabilities and/or staff…[a number of assumptions about the lack of integration with the broader community follows.]…Thus, the setting does not facilitate individuals integrating into the greater community and has characteristics that isolate individuals receiving Medicaid HCBS from individuals not receiving Medicaid HCBS.” The assumptions about isolation are hotly disputed by people who live and participate in these programs and their families.

In a letter dated 1/26/15, to Sylvia Burwell, the Secretary of the U.S. Department of Human Services, Ohio legislators have pushed back on the idea that these settings are isolating and should not receive HCBS funding:

“…Ohio is home to several farmstead programs, which provide vocational and educational programs, and residential support for people with autism. We have heard from constituents across Ohio that these farmstead programs are a very successful environment for a large percentage of the autism community. It is our understanding that while individuals spend a good deal of time in the farmstead environment, they are exposed regularly to the outside community for a variety of activities. Overall, the farmstead setting provides unique support for individuals with autism enable them to maximize their potential.

“We have concerns that this rule could inhibit the availability of these types of services for individuals who benefit from them. Many of these participants have been attending and participating in these services for years. We urge you to reconsider this guidance so that the option for individuals to live and work in a rural, farmstead or disability-specific farm community remains a choice for individuals and remove them from the list of having an isolating effect.”

The letter is signed by one U.S. Senator and  13 members of the House of Representatives from Ohio, including John Boehner, the Speaker of the House.

For more information on choice in community settings see the Coalition for Community Choice website and  the CCC Blog - "Advancing the principle that community can be experienced in all residential settings".

More from Ben's Hope: bringing people together

Here is more from Benjamin's Hope, a planned community housing project for adults with autism and other developmental disabilities in Holland, Michigan.

The following article appears in the Ben's Hope 2014 Winter Newsletter. The inspiration for the project and what it hopes to achieve is reflected here. It dispels the notion that communities like Ben's Hope isolate people from their surrounding community and that congregate care is inherently discriminatory against the people who live there. For more information and background on the ideological battles that Ben's Hope has had to endure, see these blogposts (here and here).

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Why Do They Come?
There is something exuberant about life around Benjamin's Hope

Sunday evenings in the summertime found 100+ people worshiping together, under a tent. September's Firelight festival welcomed more than 1,000 friends from all over Western Michigan to enjoy hayrides, music, alpacas, and bonfires. And, by mid-winter, 24 people will call Ben's Hope home.

Benjamin's Hope is bringing people together.
 
The impact of Benjamin's Hope stretches far beyond the men and women who have chosen to live here. We see evidence of it in the people who come. Classrooms from West Ottawa Schools, kids from Camp Geneva, quilters from Christ Memorial Church, and students from Hope College. People young and old. People with disability and people without. Which leads me to ponder, what is the common draw? Why do they come?

Consider the tag line below our logo. "A Place Where We All Belong." This is our answer.

Life runs at a frantic pace. We gauge a day's success by what we have accomplished, our worth too often determined by how we compare to the person next to us.

Is it any wonder that we yearn for a place where we are accepted not for what we do, but simply because we are?

Ben's Hope beckons us to come just as we are. It gives us permission to slow down. From the moment we turn in the drive we are greeted by the Ben's Hope sign assuring us that we have found a place where we all belong.

Awhile back I received a Face Book message from Elizabeth. Elizabeth and her support dog, Mitchell, regularly attend our weekly worship service called The Gathering. Her words beautifully express why she chooses to spend time at Ben's Hope.

"…The Gathering is the best hour of my whole week! I can be around people like me and people who love people like me and I don't have to hide who I am for a whole hour. I love being there. It feels like home, ok?"

So many of you have helped to create this extraordinary place that is so much more than bricks and mortar. Thank you. Benjamin's Hope is an oasis that waters our soul and reminds us to press forward in Hope.

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In case you might be wondering, I do not have any personal stake in the success or lack of success of Ben's Hope. Some advocacy groups have virulently opposed any and all congregate settings, expressing a fear that this type of living will be imposed on others with disabilities who do not want it. I have not heard anyone involved with this or other family-initiated housing projects express a desire to impose their will on others and I suspect they have neither the time, influence, nor energy to do so. --JB

Delaware: Funding for innovative housing for DD - Whose money is it, anyway?

Many housing projects, including planned communities for people with developmental disabilities, have been built in recent years that use flexible Medicaid funding to provide services to people wherever they choose to live. Federal Medicaid law explicitly prohibits Medicaid waiver money or other Home and Community Based Services (HCBS) funding from paying for housing. Many family organizations, however, have built or found housing that is uniquely designed for people with very specialized needs and have then used HCBS funding to pay for services for the individuals who live in these homes. 

A new rule from CMS, the federal agency that regulates Medicare and Medicaid, has set standards for what CMS considers to be suitable settings to promote integration into the community.  

Consistent with the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision, states must administer the full array of home and community-based services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. The new rule, however, threatens to limit Medicaid funds in settings that are deemed too institutional in nature by CMS standards and force individuals with disabilities to jump through hoops to justify their choices, if they want to live in settings that come under special scrutiny by the CMS. In addition, many advocacy organizations that ideologically support forced deinstitutionalization and oppose all congregate settings (settings that serve more than 3 or 4 individuals with disabilities together), are pushing to have states limit and eliminate settings that they do not like. This is a problem, especially for people with the most severe and complex disabilities who are also people who often need and benefit most from congregate care or services in congregate settings.

Disability advocates claim that their ideological opposition to congregate care is supported by the 1999 Supreme Court Olmstead decision, but that is a misrepresentation of the decision's mandate. The Supreme Court took a balanced approach, finding that unjustified isolation of individuals with disabilities is discrimination under the Americans with Disabilities Act, but they explicitly stated that they did not condone "termination of institutional settings for persons unable to handle or benefit from community settings." They also recognized "… the States' need to maintain a range of facilities for the care and treatment of persons with mental disabilities, and the States' obligation to administer services with an even hand." The Supreme Court held that states may move people from institutional care to community only as long as the individual does not oppose the move. And, “…the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution".

The Delaware Homes for Life Foundation sponsored a conference on October 31, 2014, called "Innovations in Residential Neighborhoods". Homes for Life was founded by Dr. Lanny Edelsohn and his wife Micki, the parents of an autistic adult son. The foundation has raised millions of dollars to build and furnish 27 homes for people with autism and other developmental disabilities. 

The conference was covered in an article on Delaware Online on 11/1/14 entitled  "Those with disabilities: Where should they live?" by Beth Miller. One of the speakers at the conference was from The Arc Village in Jacksonville, Florida, where ground will be broken soon on an $18.6 million, 97-unit community of affordable duplexes and triplexes to be rented by those with intellectual and developmental disabilities. Some of the discussion was about whether the new CMS rule on HCBS settings would allow residents who choose to live in planned communities access to Medicaid HCBS funding to pay for services where they live.

While the purpose of the conference was to showcase innovative housing ideas from around the nation, it was covered as a civil rights battle "simmering not far below the surface of local and national discussions on how and where people with intellectual and developmental disabilities... might live and work in the future."

Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when talking to the reporter about where she stood on the issue: 

"…to Daniese McMullin-Powell, a longtime disability rights activist who has handcuffed herself to the White House fence to make her case against life in institutions, the day's discussions made her feel like she had been to a 'segregationist meeting.'

"McMullin-Powell uses a power chair because of post-polio syndrome. She has children and grandchildren with a variety of disabilities – including autism and Down syndrome, she said.

"She wants all of them to have access to full lives in their communities. But she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so.

"'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever.'"

Dr. Lanny Edelsohn answered the "startling" remarks by Deniese McMullin-Powell in an opinion piece, "Delaware must be open to new ideas on housing" on 11/4/14 on Delaware Online: 

"Beth Miller’s recent article… shines a most welcome light on an urgent issue in Delaware: the affordable housing crisis for adults with intellectual and developmental disabilities. In the state of Delaware, there are 2,900 persons living at home with parents who are 60 or older. These parents all ask the same question: 'What will happen to our loved ones when we are gone?'"

He goes on:

"In the article, I was startled to read the virulent comments by Daniese McMullin-Powell, Chair of the State Council for Persons with Disabilities, who had remained silent during the conference. While I disagree with each of her assertions as baseless, including her comments that she thought she was attending a segregationist meeting of rich white people (the conference was free, the attendees were clearly diverse and a tax return was not a requirement for admission), I am nonetheless most grateful for her finally revealing something that many in the disability community have long suspected but no one has yet had the courage or honesty to admit: that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money. [emphasis added]
 
“'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don’t suck it all up because you want to live in summer camp forever.'
 
"By day, I am a neurologist who treats persons with autism, Down syndrome and other central nervous system disorders where there can be self-abusive behavior, PICA (eating foreign objects) or progressive early onset Alzheimer’s disease. Every week I treat patients who are in great need of safe and supervised environments. And I see families, struggling bravely and under great adversity, to care for them, often as their own health and welfare decline. I can assure you, from the patients I treat, that life is not a “summer camp”; rather, it more often resembles an exhausting challenge of relentless obstacles."
 
Thank you, Dr. Edelsohn. I couldn't have said it better myself.

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..."

Coalition for Community Choice : A unified voice for increasing housing choices for people with disabilities

This is from the Madison House Autism Foundation website, encouraging participation in a new coalition of groups supporting a broad range of options in housing choices for people with disabilities.
 
[Madison House Autism Foundation is a 501(c)(3) organization that was founded to identify the lifelong needs of adults with autism and through education, awareness, and advocacy, fill those needs.]

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Voices Uniting: Coalition for Community Choice
 
The Coalition for Community Choice has come together 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 just released, and the CCC is writing a policy brief 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.

• 5 million people have autism or other intellectual and developmental disabilities (I/DDs), but residential placements are only available for 613,000 and barely increasing to meet the current need.
• Current data shows that there are still more than 200,000 individuals younger than 65 in nursing homes—almost 16 percent of the total nursing home population.

In light of these staggering figures, Madison House Autism Foundation 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 Desiree 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.

For more information: see the CCC statement of principles and list of current supporters.

More housing projects for people with autism and other disabilities

"The Architecture for Autism" by Michael Tortorello is an article from the New York Times, 10/9/13, about new parent-initiated housing projects for people with autism.
 
An new template for building housing and communities for people with autism was developed in 2009 by Kim Steele and Sherry Ahrentzen who collaborated on “Advancing Full Spectrum Housing,” a comprehensive design guideline for housing adults with autism.
 
According to the article,  "Perhaps the first development to closely follow their template is Sweetwater Spectrum, a residence for 16 adults whose abilities and disabilities span the full range of autism. The innovative $10.4 million project opened in January in the heart of California wine country, and its founding families and board hope to make Sweetwater a model for like-minded experiments across the country."

"…Sweetwater’s mission statement lays out some ambitious principles. Residents will be able to age in place. The community should 'accommodate a broad financial spectrum,' subsidizing residency for a quarter of its tenants. And attendants (who are not Sweetwater employees) should be offered incentives to encourage stable, long-term care relationships."

Here are some of the details about how houses are designed and equipped to accommodate people with autism:

• "'..there is a floor drain in every bathroom. As Ms. Maytum explained, 'Water can be a really interesting activity for people with autism.
• "Safety and security were other concerns. The kitchens use induction cooktops to limit the possibility of burns. And while the perimeter fence is slotted ..., solid planks span the bottom few feet. Residents are free to walk out the front gate, but it’s probably best that they not treat the fence like a ladder. 
• "A bigger design challenge was to see a house through the eyes of an autistic client. For example, the layout of all four dwellings is identical: a neighbor’s place should feel like home. And multiple seating options encourage an individual to be near the action without necessarily plunging into the fray.
• "Another way of limiting noise annoyance was to place pairs of bedrooms on opposite sides of the house, instead of in a dormitory-style row…

This, like other planned housing for people with disabilities, is an open-ended experiment. Cost is one barrier to making it available to a large number of people. "…families pay $39,000 a year for a child to live at Sweetwater. That expense, said Ms. Steele, the researcher, 'will preclude people who don’t have a trust fund or wealthy parents from living there.'" Sweetwater does, however, provide scholarships for a number of residents.

Another housing project is Airmount Woods in Bergen County, New Jersey.  Airmount Woods is "a new eight-unit residence developed by Bergen County’s United Way and operated by the service agency New Horizons in Autism."

"The twin four-bedroom houses will use some of the latest concepts in building for autism. But the real innovation may be the way it promotes special-needs housing as a community asset. That term is not just a stock phrase. Airmount Woods belongs to a nonprofit group called Ramsey Housing Inc., formed by the Borough of Ramsey. The mayor, Christopher Botta, sits on the board, and he dropped by on a recent morning to show off the project. Almost every one of his constituents knows someone with autism, the second-term Republican mayor said. This isn’t housing for strangers."

Here are two innovative housing projects for people with developmental disabilities in Michigan: Benjamin's Hope and Harbor House Ministries. 

LTO Ventures, is a non-profit organization with information about housing and planned communities for people with autism around the country.

The ARC Michigan: Our Way or the Highway

Why is the ARC Michigan, an advocacy group for people with developmental and intellectual disabilities, having a hissy fit over two family-initiated projects in southwest Michigan? The ARC Michigan is of the opinion that if the state allows Medicaid funds to pay for services to people with DD who choose to participate in these projects, the state will be going against current trends, departing from current thinking on disabilities, and possibly violating the Americans with Disabilities Act.

This "warning" was issued in two letters from Dohn Hoyle, the Executive Director of the ARC Michigan, to the MDCH.  [For an explanation of abbreviations and links to the full text of both letters and the MDCH response, see the end of this post.] The ARC Michigan receives most of its funding from federal and state government grants. [See the ARC's 2012 Annual Report ] Of course the state does not have to ask the ARC for permission before allowing the expenditure of Medicaid funds.

The two family-initiated projects targeted by the ARC Michigan are Benjamin's Hope and AACORN (Autism Agricultural Community Option for Residential Needs). Benjamin's Hope, near Holland Michigan, is a planned community for people with autism spectrum disorder. It is described here on the website of LTO Ventures, a non-profit company that develops communities for people with autism:

"A 40-acre campus designed as a community-based model to provide housing, recreation, vocation and support for 24 residents in six custom-designed homes.  It is a private/public model, built with private dollars, and utilizing public funds for direct care.  They received 62 applications for the first 8 available residential slots. [emphasis added]  The first two residences have been completed, and the community building is nearly done."

Four women moved into a licensed group home at Benjamin's Hope in June, 2013. 

AACORN Farm is still in the development stage but has received non-profit status and is looking for property in Kalamazoo County, Michigan. While residential options are being developed, AACORN has started a vocational program. According to the AACORN website, "Tillers International of Scotts, MI has generously offered to let us use their farm and help care for its animals and gardens, and to have arts and crafts indoors while we are raising funds for a farm of our own…The program will run three days per week with just a few participants while we are breaking it in. In September, the program will be offered four days per week and we will be adding more participants." Here is an article from the Kalamazoo Gazette, 4/8/13, with more about AACORN Farm.

It is clear that the years of thought, energy, and planning invested by these families of autistic children are approaching fruition. It is also clear that these two programs have broad community support and plans for residents to be fully engaged in what the broader community has to offer them. So why is the ARC in such a huff?

The ARC is right that these projects go against the current trends and thinking prevalent among government-funded advocacy groups and the government agencies that fund them. Creative ideas for providing services and residential options for those with the most severe and complex disabilities may well be thwarted by misguided and potentially harmful government policies with the support of mainstream government-funded advocacy groups. [See CMS rules limiting choice].

For decades, advocacy groups such as the ARC Michigan have been railing against institutions for people with DD [e.g. Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs/IID], despite the fact that such settings are a legitimate choice for people who need that level of care. For years the ARC Michigan has been chipping away at services and residential options provided in settings that serve more than three or four people with disabilities. The basis for this bizarre policy appears to be the faulty assumption that only by limiting the number of disabled people that associate with each other in one place, can we assure their integration into "the community". Not only is this assumption based on tunnel vision, but it is also predicated on a special interpretation of what constitutes a "community" [See "Integration or Isolation? Defining Community Beyond Bricks and Mortar"]

To these advocates, where and with whom one associates is not a matter of free choice or individual need, but is instead a matter of policy applied generally to all people with disabilities and enforced through government mandates:

"We don’t believe that hiding behind language regarding supporting the housing preferences and choices of people with disabilities (or those of their parents or guardians) would shield any new, additional, segregated developments or its funding from being considered discriminatory as segregating persons with disabilities." …Dohn Hoyle, ARC Michigan, 4/30/13

The ARC Michigan claims that using Medicaid funding to pay for services at Benjamin's Hope, AACORN, and similar programs may violate the 1999 U.S. Supreme Court Olmstead decision interpreting the Americans with Disabilities Act. However, the ARC Michigan's reading of Olmstead is faulty. Olmstead does not support the view that congregate settings are automatically discriminatory against people with disabilities. Instead, it supports individual choice. It does not specifically focus on congregate settings in the larger community, such as group homes. Even if one lumps such settings together with larger facilities and assumes that every licensed setting is an "institution", Olmstead still does not prohibit them:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.

Stated another way:

“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution" [quoting VOR’s Amici Curiae brief]

Personal choices and needs are the governing factors, not the oversimplified criterion advocated by ARC Michigan.

For families living with a severely disabled family member, a utopian vision of a world where everyone, regardless of the nature or severity of their disabilities,can live independently, engage in competitive employment, and live fully integrated lives in "the community" (whatever that means), makes as much sense as a vision of a world where severe disabilities don't exist at all. We need realistic solutions, not over-simplified utopian notions that only serve to limit the range of choices. Creative family and community-based projects that provide specialized services and residential options to people with DD should be encouraged, not prevented from getting the assistance they need to succeed. 


***************************
Information on the ARC Michigan: 

Executive Director: Dohn Hoyle
President: Donald Teegarden
Board of Directors
Contact Information

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Letters from Hoyle to MDCH and MDCH to Hoyle:

A short lesson in MichiganSpeak will make reading the letters easier: a CMHSP is a Community Mental Health Service Provider - a local CMH agency that provides services to people with DD and other disabilities. A PIHP is a Pre-Paid Inpatient Health Plan, a regional CMH agency that distributes funding to local CMH's and performs other administrative functions. The AFP is the Application for Participation that assures that PIHP's comply with all relevant federal and state requirements.

Links to full text of Letters:

(a) Letter to MDCH from Dohn Hoyle dated 4/10/13

(b) Letter to MDCH from Dohn Hoyle dated dated 4/30/13

(c) Letter to the ARC Michigan from MDCH dated 4/25/13

Benjamin's Hope : a community for people with autism and other developmental disabilities

From the Website for Benjamin's Hope in Ottawa County, Michigan:

Benjamin's Hope will be a first of its kind community model designed to address the multifaceted needs of individuals and families affected by autism and developmental disability.

An emerging, interactive community where people with extraordinary needs will realize a future of meaning, security and hope.

Our mission is to be an embracing natural setting where people with disability and the community gather for Christ-centered fellowship, treatment, housing and meaningful work.

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

[Read the full letter here.]

Secretary Shaun Donovan

U.S. Department of Housing and Urban Development

451 7th Street, SW

Washington, DC 20410

Dear Secretary Donovan:

The National Association of the Deaf (NAD) is contacting you in your capacity as the head of the United States Department of Housing and Urban Development to raise our heightened concerns about the egregious state of housing for deaf and hard of hearing individuals in the United States....

In a nutshell, your agency, HUD, is forcing deaf and hard of hearing individuals to only live according to an ideological vision of forced integration. The tragic irony is that such an ideology has punished deaf and hard of hearing individuals seeking a higher quality of life and a safer place to live and has actually resulted in the forced isolation of individuals who are deaf and hard of hearing...

In essence, most deaf and hard of hearing people who reside in public or subsidized housing live in fire-traps because the smoke alarms do not alert them visually or in other non-audible ways. Even if they do have a stand-alone smoke alarm that visually alert them, this alarm is typically not connected to the other smoke alarms in a housing complex. As a result, a deaf resident would only know of a fire in a complex if the fire was so close to their own unit, at which point, it is probably too late for the deaf resident to leave the complex.

Moreover, due to the unique communication needs of deaf and hard of hearing people, many of them exist in isolation in inaccessible housing where there is no one else to communicate with in sign language. These residents therefore experience extreme loneliness and depression, and their quality of life is deplorable.

Yet, HUD has the atrocious gall to intervene in a housing project that was designed to be a place of complete accessibility for everyone including deaf and hard of hearing people. Instead of encouraging a paragon of accessibility, HUD is forcing deaf and hard of hearing residents to live in isolation and in fire-traps where they are not only without practical fire alarms that alert them, but without access to even the most basic communications access to the community in which they live...

Specifically, we are extremely concerned that HUD is currently pressuring the State of Arizona to sign a “voluntary” compliance agreement that would prohibit an award winning housing project called Apache ASL Trails from giving preference to its state-of-the-art accessible housing units first to individuals who need those accessibility features and services provided at Apache ASL Trails once the total number of residents with disabilities exceeds HUD’s arbitrary quota of 25%.  There is no statute or regulation that mandates any such 25% quota, and the imposition of any such quota is an ideological principle that ignores the reality of housing needs for many people with disabilities including deaf and hard of hearing individuals. [emphasis added] There is, however, law that requires that these individuals be given a full and equal opportunity to live in accessible housing that meets their needs.

While many of the residents at Apache ASL Trails are deaf and chose to live there because they sought out the desperately needed accessibility features of this unique complex, not all the residents are deaf.  Apache ASL Trails opened in 2011 and there has never been a discrimination complaint filed against them nor have any qualified applicants been rejected by Apache ASL Trails.  You do not need to be deaf to live at Apache ASL Trails...

The NAD believes that true housing equality means that individuals with a disability must be granted the freedom to choose to live in and benefit from housing that is equal to the housing available to others.  We urge you to immediately halt advancing arbitrary maximum quotas and to cease denying preferences to individuals who need the accessibility features of a unit and wish to live in that unit.  Please feel free to contact us if you have any questions or need additional information.  We look forward to your response.

Sincerely,

Christopher D. Wagner     

President                        
Howard A. Rosenblum  

Chief Executive Officer

Co-signed by 75 organizations for people who are deaf or hard of hearing

Harbor House Video : Homes for adults with severe multiple impairments

                        

Harbor House Ministries is a faith-based non-profit organization in Jenison, Michigan, west of Grand Rapids. It provides homes for adults with severe developmental disabilities in three spacious 12-bed group homes. Harbor House also has a large activity center with a therapy pool and many planned community outings and events.

From the Harbor House Web site: "Founded by families of adults with severe impairments, we know that family members are the best advocates for any individual. We work hard to maintain an atmosphere where family is valued and welcome all the time. We seek not to replace, but to partner with families in providing the best care and enriching environment possible."

More on Harbor House from The DD Newsblog.

Comment #6 (CMS-2249-P2): Limiting Choice by Eliminating Needed Options

The proposed rules contemplate eliminating choices that are deemed “institutional” at the discretion of the Secretary of Health and Human Services:

We note that home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities for mentally retarded, hospitals, or any other locations that have the qualities of an institutional setting as determined by the Secretary. In considering whether a setting has the qualities of an institutional setting, we will exercise a rebuttable presumption that a setting is not a home and community-based setting, and will engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex. We expect to issue further guidance regarding such settings. Other characteristics that could cause CMS to consider a setting as “institutional” or having the qualities of an institution would include, but not be limited to, settings which are isolated from the larger community, do not allow individuals to choose whether or with whom they share a room, limit individuals' freedom of choice on daily living experiences such as meals, visitors, and activities, or limit individuals' opportunities to pursue community activities.

Some of the most creative living arrangements that I have seen or read about have come from parent groups that have designed housing and living situations that fit the needs of their disabled family members. These groups are exceptionally frugal because they have to be. They are usually limited financially and they form strong bonds with community organizations, including churches and other non-profits, to help them achieve their goals.

HCBS waivers can be a major source of funding for individuals participating in these very specialized programs and living arrangements that are usually enthusiastically supported by the individuals themselves and their families. “A rebuttable presumption” that they are somehow “institutional” as determined by and at the discretion of the U.S. Secretary of Health and Human Services could very well harm or destroy some of these projects that have that have involved their communities in being part of their success.

Delete any language that would limit options that are person-centered, consumer-driven, and based on choice.

Agricultural Communities for Adults with Autism

Mother's Day

According to the ACAA website, the "Agricultural Communities for Adults with Autism (ACAA) is a consortium of existing and in-formation organizations focused on sharing best practices and advocating for holistic, agricultural based employment and housing models for adults with autism."

The website continues with:

Our consortium was created to provide information to adults with autism, their families, academics, professionals, legislators, policy makers and others and as a portal to link to our member's sites and other relevant resources. We want to educate people about the common characteristics and differences in agricultural communities in the United States. Our website also exists to dispel the incorrect notion that agricultural communities are institutional, segregated congregate care models when, in fact, our members, residents, and day program participants are strongly woven into the fabric of their respective communities. We are non-urban, low density community based integrated models.

 
Agricultural communities are a terrific option for adults with autism in our community who prefer the choice of a non-urban, community based, active lifestyle that typically combines a variety of rewarding employment opportunities with quality, affordable housing and a wealth of activities in their local communities.

 
All of our communities report no openings and long waiting lists. Turnover is rare because we offer lifespan models. We are contacted daily by people from all over the world who want to have the choice of an agricultural model like one of ours. We give dozens of tours a year to interested adults and their families. We think the only way they will be able to access an agricultural model is to come together with others to create a model in their own area.
Creating a community is difficult but not impossible. Some of us are in formation but many have already created communities. Some have been in place for decades so the models are "time-tested" and successful.

 
A few weeks ago, I wrote a blogpost about Special Dreams Farm in St. Clair Township, Michigan. Another project in Kalamazoo County, Michigan, is called Autism Agricultural Community Option for Residential Needs or AACORN FARM. This link is to a progress report on AACORN's organization. The ACAA website has links to many other groups who have successfully set up agricultural communities or are attempting to do so and other resources.