More Choices for people with IDD and their families in Washtenaw County, Michigan

This is a note from Becky Altschuler, another resourceful parent who is creating a program for adults who are not candidates for vocational programs but need a variety of community activities:

Due to the need for high quality day programs for young adults with disabilities, a group of parents is starting a new program in Ann Arbor. This program is intended for young adults who've aged out of the school system (recently or not so recently), and are not candidates for vocational programs. If space is available, we'll also welcome young adult students during the summer break. 

Our goals for this program are to get our kids out in the community and to involve them in a variety of activities. We will meet Wednesdays and Fridays staring June 19, from 9 am - 4 pm at the Ann Arbor Center for Independent Living. 

If you'd like more information about whether this program is a fit for your son or daughter please contact me at A2becky40@gmail.com. We also welcome anyone who wants to work with us to create meaningful options for our kids in adulthood.

California : Crisis in Community Care and the Desperate Situation for Service Providers

This is from Bay Area Autism News, September 2015: "The Desperate Situation for Service Providers"

Carol McKinney from Harmony Homes testifies before the California legislature about the lack of funding and what it means to the people her agency serves and the workers who have endured the shameful lack of commitment to people with developmental disabilities.

Maryland: Physical fitness and people with disabilities

from:
 
Inclusive Gym Gets People With Disabilities in Fitness Spirit

by June Soh

July 31, 2015

Teamwork is an integral part of the health and fitness program at Spirit Club, a gym in suburban Washington where most of the participants have autism, Down syndrome or other developmental disabilities.

“Our main focus is the same thing as any other gym, which is to help people be active and healthy," said Jared Ciner, who created the club in Kensington, Maryland, two years ago. "The difference is that we do modify a little bit to make sure that it is right pace for the people we are working with, so that everybody can follow along...."

Some seniors imprisoned by their independence

People who have severe developmental disabilities, mental illness, or physical disabilities with medical complications, or any combination of these, face similar problems with obtaining appropriate services and with assumptions made about them by people who are unable or unwilling to see them as individuals with differing needs. The same goes for people who are aging. ["Aging" seems to be the term I am supposed to use to talk about people like myself who are old and getting older by the minute. Apparently, some people are offended by the "O"-word.]

In an article in the New York Times, “At Home, Many Seniors Are Imprisoned by Their Independence", 6/19/15, Paula Span examines the conundrum of older people who have managed to “age in place” but find that when their physical or mental condition gets worse, they lack the care and support they need to engage in a life outside of their own homes.

According to a report in JAMA Internal Medicine, “Almost two million people over age 65, or nearly 6 percent of those Americans (excluding nursing home residents), rarely or never leave their homes...The homebound far outnumber the 1.4 million residents of nursing homes.” [Homebound is defined as those who have not left their homes at all or had gone out no more than once a week.]
 
People who are homebound are sicker and have more dementia and depression than those who are not. Their ability to get out depends on the accessibility of their physical environment and whether they have assistance to help them get out safely to the places they desire to go.

Span also mentions that a 2011 study on unmet needs of older Americans “…turned up an interesting comparison: When the researchers controlled for demographic characteristics and health and function, people in assisted living facilities actually got outside more often than those in their own homes.”

While the ideal of "aging in place" may be the desired goal of most older Americans, “…older adults’ desire for familiar surroundings, and their fear of institutionalization and its financial burdens, have apparently led millions to fight to remain in homes they can rarely leave. Our national celebration of independence as a value may not help.”...

Amy Murray of the Carter Burden Center for the Aging in New York adds that “Remaining at home, however difficult or isolating that becomes, gives older people a sense of control that may prove illusory...They feel like they have their freedom even though they don’t, really."

All this is relevant to the current push to get people with developmental disabilities out of congregate settings including institutions, group homes, center-based day programs, and planned communities designed for people with autism and other developmental disabilities. For some people the "freedom" to live in the community adds to feelings of isolation and a loss of connection.

Summary of 4/14/15 meeting on community living services in Washtenaw County, MI

The 4/14/15 meeting in Ann Arbor was sponsored by the Washtenaw Community Health Organization (WCHO) and Community Supports and Treatment Services (CSTS) to discuss the future of community living support services. These local Community Mental Health (CMH) agencies provide Medicaid-funded services to people with disabilities, including people who are developmentally disabled and mentally ill and their families. 

The meeting was attended by about 100 [make that 180!] people eager to hear whether the WCHO [facing a budget deficit of $3.8 million] and CSTS had plans to cut services that allow individuals and their families to survive and thrive in community settings.

The meeting began with a PowerPoint presentation on “Utilization Management”, a fancy term for assuring that public funds are spent for the purposes intended by law and policy. The full presentation can be linked to here on the WCHO Website. [Click on “Town Hall Announcement” and then “CLS PowerPoint Presentation”] . The emphasis was on “medically necessary” services and a plan to review and evaluate Individual Plans of Service (IPOS’s), looking at those plans with the highest utilization rate first. These reviews may or may not result in cuts to services for individuals. 

There was nothing new as far as CMH agencies' obligation to be fiscally responsible and to provide Medicaid services that are "medically necessary".  Here is a blog post from The DD News Blog with the definition of medical necessity. The definition does not limit recipients of services to what would ordinarily be considered strictly medical services. It includes services to maintain or improve functioning and allow a person to live in the community.

As is usually the case, the most interesting part of a public meeting is the public and the questions and observations of people who went out of their way to attend the meeting. Here are some of the issues that were raised by the crowd:

The letter that went out to recipients of services under “Self-determiniation” arrangements announcing a decrease in the pay rate for direct service providers: 

• This was not the main topic of the 4/14 meeting, but the explanation for decreasing the pay was that Washtenaw County wants pay rates to conform to rates in the other counties in the 4-county affiliation of the Community Mental Health Partnership of Southeast Michigan. 
• Someone pointed out that there is no requirement that pay rates for every county be the same and that Washtenaw has the highest cost of living in the four-county region.  
• It is ironic that pay rates for direct service providers under self-determination living arrangements are being cut, while the Federal government through its rule on Home and Community-Based service settings encourages these kinds of living arrangements over congregate care and is applying pressure on states to move in this direction. Cutting pay rates is a sure way of making it harder for individuals to hire direct care staff who are competent and reliable.

The CSTS PowerPoint emphasizes the success of the WCHO and CSTS in cutting hospitalization times for people with mental illness. An audience member spoke of talking to family members of people with severe mental illness who say that hospital stays are way too short and do not allow people to adjust to new medications and to transition back to the community.

There were also complaints that families were already being threatened with service cuts, including people needing care and supervision 24 hours a day. Some were told there was no appeal of service cuts, even though there is both a local and state appeals process required by law. For more information see Recipient Rights and page 24 and 25 of the Guide to Services.

More meetings:

Check the announcements page of the WCHO Website for more information on a meeting scheduled for May 7, 2015 at St. Luke Lutheran Church in Ann Arbor.

The WCHO Board of Directors meets on the third Tuessday of every month.

The new pay rates for direct care workers for Self-determination go into effect on May 15, 2015, but there will be a meeting before that date to discuss concerns of consumers.

Washtenaw County, MI : CMH to announce rate decrease for Community Living Services

Update 4/16/15: About 100 people attended the WCHO/CSTS meeting on Tuesday, April 14, 2015 to discuss Community Living Services and potential cuts in services when they are found on further evaluation to not meet "medical necessity" criteria. The above letter was for people who hire providers through "Self-determination" arrangements. Although this was not the main subject of the meeting, it did come up. There will be future meetings on the "Self-determination" decision and on other Community Living Services. Stay tuned.

***************************************
 
The Washtenaw Community Health Organization and Community Supports and Treatment Services are holding a meeting tonight to discuss plans affecting Community Living Supports for people with disabilities. These include staffing for people in their own homes.

According to a letter sent to consumers (individuals with disabilities and their families who receive services), the rate of pay for these direct care workers will be reduced to $13.88 per hour, which includes worker’s compensation, transportation, community participation, taxes, and training. The letter says that “While this is not a reduction in your current level of services, it may reduce the amount you can pay staff.” WCHO also encourages consumers to meet with their clinical teams and consider options, “including the option to use one of our contracted providers for CLS services”.

The change will go into effect on May 15, 2015.

People whose services are funded through Medicaid Waivers, especially those with exceptionally high needs, find themselves extremely limited by the allowable amount of funding available to pay service providers. The higher the needs, the more skilled and reliable direct care workers need to be to fulfill those needs. Reducing the hourly wage of workers who, if they do their jobs well, take on tremendous responsibility to do difficult work leads to diminishing returns: a high turnover rate, poorer care, and sometimes no care at all.

The change in rate is justified as “necessary to ensure that Washtenaw County’s rate is the same as our regional partners and to ensure that we are being fiscally responsible.” Another way of looking at it is that both these things might be accomplished by raising the rate of our regional partners and ensuring a more stable and reliable workforce all the way around.

Videos: CA innovative housing for Autism and other DD

[These are videos from the San Francisco Bay Area Autism Society housing conference, May 10, 2014.]

Part 1: Autism / Developmental Disability Housing Options: The Growing Need

...Soaring demand with lack of housing options

Part 2: Housing Options: Single-Family Home Based Models 

 ...Overview of autism/DD housing options based on a single-family home model, including living with parents, legacy homes, licensed group homes, unlicensed co-ops and adult foster care.

Part 3: Housing Options: Multiplex and Intentional Community Models

...Overview of autism/DD housing options based on multifamily or congregate models, including market-rate apartments, affordable "set-aside" units, investment-based multifamily complexes, and nonprofit intentional communities.

Part 4: Needed Policy Changes

...Overview of many of the policy changes necessary to facilitate the creation of new housing options for adults with autism or developmental disability.  

"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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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..."

DD Services : Wayne County Michigan

Winter Extended

Ed Diegel, a parent from DD Advocates of Michigan, has been covering problems with the service delivery system for people with developmental disabilities in the Detroit/Wayne County area of Michigan for a long time. Recently, he has sent out email newsletters that include family testimonials to illustrate the problems that families experience. It is refreshing to see families willing to come forward to tell their stories. Experiences shared among families attempting to find appropriate services for their loved ones make us all feel less isolated and and a little less frustrated by the process.

As Ed says, in his first newsletter of 2014, "Without this exchange of stories we are easily treated as individuals with bothersome problems rather than as partners in a process that needs to be corrected; we end up feeling marginalized and being treated as if we are the problem rather than part of the solution…"

One theme running through the family testimonials is the insistence by Community Living Services (CLS), the largest provider network in the Detroit area, that clients adhere to the organization's ideological principles in selecting services, rather than allowing the needs and preferences of individuals and their families determine the services provided. While other agencies willingly support individual choice in skill building programs, sheltered workshops, and day programs, CLS has determined that these programs are off limits and not sufficiently integrated into the community, even though they are services covered by Medicaid. Many of the complaints have to do with the PEP Center in Livonia that provides services that CLS refuses to pay for, although other provider networks are more accommodating.

Ed says, "The PEP program has thrived over the recent past. Starting off in rented space on Five Mile it is now in its third building; each of the moves was required in order to support growing enrollment. It is the only day program that I consistently hear positive support for; admittedly, I travel in a small circle, but the observation is valid. They are doing something different to maintain enthusiasm and yet the largest MCPN in the county refuses to contract there."

This is from the Fosgard family:

"Cory has attended exercise class and other opportunities at the Pep Center in Livonia.  The staff is loving, caring and professional. They treat Cory with respect, and he enjoys his time there.  I had wanted to use this center for Cory’s respite dollars and for work opportunities after he graduates.  Unfortunately, Community Living Services will not allow his dollars to be used there.  They do not feel the program fits their 'vision'.   I believe their slogan, 'Your life your way' is hypocritical.  The life Cory enjoys is being denied by people who do not know him, or what is best for him.  Programs for persons with special needs are not one size fits all."

Ed comments: "The whole concept of Self Determination is to allow individuals to live where and with whom they choose and to spend their support money on the programs they believe will be most beneficial. In this environment an individual is allowed to hire support staff, choose a home to live in (as long as it meets certain CLS guidelines), budget home and food and entertainment dollars but then be told that, empowered with all these other life choices, they are too inept to choose an appropriate skill building program!"
 
From the Seizer family:

"…CLS will not let [our daughter participate in the PEP Center program].  This is in direct opposition to the slogan on their business cards which says:  'Your Life, Your Way'. That’s not what Kara is experiencing as a CLS consumer, she is being asked to set up her life 'CLS’s Way'…Also by forcing the family to change providers to get the pep center services, [we] will have to discontinue working with staff who have worked very successfully.

"It also is not healthy for Kara to be with a one on one direct hire person 5 days a week. She needs and wants the socialization and friendships in her life. We would like to stay with CLS and not have to switch to Synergy but in April it will be a year and it seems we are advocating but no one is listening."

From the Whalen family:
 
"This past year we have heard much about CLS and their push to be rid of day programs.  We originally joined CLS because their motto was 'Your Life, Your Way.'  Because their current philosophy is changing to your life, their way, we are in the process of switching Mike to Consumer Links."

[Wayne County residents having problems with Community Living Services can expect little help from the state's largest advocacy organization for people with DD, The ARC Michigan. The philosophy of CLS is identical to that of our state ARC. This is not surprising when one realizes that the Chairman of the CLS Board of Directors is Dohn Hoyle who is also the Executive Director of The ARC Michigan. This presents a conflict of interest when parents turn to the self-proclaimed defenders of the rights of their disabled children only to find the ARC is so deeply entangled with the largest provider network in the area.]

Anonymously, from another parent about heartbreaking conditions in a loved ones group home:
 
"My son and so many others cannot speak for himself.  He cannot tell me if they really went for a walk or if the staff was sound asleep.  Saturday I was told my son was going on a specific outing.  I know staff at the place where the outing was to be, he was never there.  If I say anything, nothing is done.  Per management I have no right to know if staff is talked to…

"It has been a difficult struggle.  Recently I have made many calls to various people.  Unless I want to file recipient rights, they do nothing.  I personally know other people who have made calls concerning a group home.  No change whatsoever. I had hoped the new 'Authority' [Detroit Wayne County Mental Health Authority] would open their eyes and see that things are not as they portray.  It is a sad situation.  Thank-you for a least letting me tell you about my concerns."

If you want Ed Diegel to send you his newsletters, contact him at ddadvocates@gmail.com . The newsletters are also posted on the PEP Center Website.

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.

VOR: Respecting Individual Choice

VOR is a national organization that supports a full range of service and residential options to meet the diverse needs of people with disabilities. Unlike many nationally known advocacy organizations for people with intellectual and developmental disabilities, VOR receives no government funds. VOR supports individual and family participation in decision-making . 

The following is a statement of Key Principles : Ensuring Rights and Opportunities for All People with Disabilities

******************************************

September 2013 

Respecting Individual Choice: The Rights of All People with Disabilities

VOR is a national organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).

For 30 years, VOR has been representing families of individuals with I/DD, many of whom experience severe and profound developmental disabilities, have multiple physical disabilities, and are medically fragile or experience dangerous behaviors.

Underpinning each “Key Principle” is respect for diversity of need and individual choice. Most individuals with disabilities are capable of determining job opportunities, leisure activities, and housing options, and have the right to exercise individual choice, with any necessary supports. Other individuals experience profound I/DD or other serious I/DD and medical and/or behavioral disabilities. These individuals have rights, too, and need the support of their families and legal guardians to ensure that their choices for housing, employment, and services are safe, comfortable and responsive to their needs.

In developing principles that reflect individual differences, VOR rejects a “broad brush” approach to rights and principles which apply to most individuals with disabilities, but not all. In our view, such an approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk. Principles relating to “choice,” “inclusion,” “integration” and “community” become limiting – not liberating - goals. “Choice” no longer means true and informed choice, and “inclusion,” “integration,” and “community” relate to type of living arrangement – bricks and mortar – without regard to access to services, reliable transportation, appropriate work opportunities, time with friends (disabled or not) or whether there is any real interaction with neighbors. Isolation in the name of integration is not “community.”

VOR embraces the rights of ALL individuals with disabilities and supports a system that is responsive and respectful of individual needs and preferences. We recognize the need for a broad continuum of supports, services, residential, and employment options that match the broad spectrum of abilities, needs, and preferences within this population.

In conclusion, VOR’s Key Principles in support of “Ensuring Rights and Opportunities for People with Disabilities” are fully inclusive of the entire disability population and do not narrowly  limit choice to specific housing and employment options. We strongly believe that the preferences and needs of some disabled individuals should not deprive another segment of the population of their rights and preferences. VOR advocates for reason, recognizes diversity, and supports the rights of all individuals to live in a community of their choice.

Ensuring Rights and Opportunities for All People with Disabilities

Key Principles

General Principles

“Individuals with disabilities” describes a widely diverse group of people, ranging from people with mild physical and/or intellectual disabilities to those with profound or other severe intellectual disabilities, along with medical or behavioral disabilities.

“Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.” DD Act, 42 U.S.C.15001(c)(3)(2000).

Most individuals with disabilities are capable of living just like people without disabilities and should have the opportunity to do so. These individualswith disabilities should have control over their own day, including which job or educational or leisure activities they pursue, and where and how they live, with any necessary supports.

Support for full community integration of most individuals with disabilities should not be interpreted to deprive individuals with profound intellectual and developmental disabilities (I/DD) or other serious I/DD and medical and/or behavioral disabilities from assurances of proper care of their health and safety needs, and individuals with disabilities should not be forced to accept services or participate in activities they do not wish to accept. As Justice Ginsburg wrote in the Olmstead decision, “Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case by case basis, that setting may be in an institution.” (emphasis added)

Choice

Individuals with disabilities and, where appointed by a court, their legal guardians, should have the opportunity to make informed choices among all legally available options. They must have full and accurate information about their options, including what services and financial supports are available.

Employment

Most individuals with disabilities should have the opportunity to be employed in regular workplaces. Most individuals with disabilities can be employed and earn the same wages as people without disabilities. When needed, individuals with disabilities should have access to supported or sheltered employment, or other day activities, to ensure fulfilling and productive experiences.

Housing

Individuals with disabilities have the right to choose where to live from an array of residential options.

Most individuals with disabilities can live in their own homes with supports and they should get to decide where they live, with whom they live, when and what they eat, who visits and when, etc.

These choices for most individuals with disabilities should not deprive individuals with profound I/DD or other serious I/DD and medical and/or behavioral disabilities from the right to live in congregate arrangements, multi - unit buildings or complexes that cater to specific needs, according to individual choice and need.

Public Funding

Government funding for services should support implementation of these principles to assure a full array of residential and service options to accommodate the diverse needs and preferences of the disabled population. Financing for long-term services and supports must be responsive to the needs of all individuals with disabilities, recognizing that the cost to care for individuals must necessarily vary and be responsive to varying needs.

For more information about VOR, visit www.vor.net.

VOR’s Policies and Positions Statement, which reinforce VOR’s Key Principles, are found here.

An inclusive community prison for violent felon with DD

This is a video of a TV news report from WMTV in Madison, 7/18/13, about a violent 26-year-old felon with developmental disabilities who is locked in a house in the city of Baraboo, Wisconsin. Neighbors are frightened and don't know why he is there, local politicians are raising questions with the state about him, and the police are making crisis plans for what to do if the man escapes.

According to the report, "Neighbors fear violent felon locked in Baraboo home" by Phil Levin, on the WMTV Madison website: 

"The home has fortified windows, a padded cell and doors that lock from both sides. Staff carry panic buttons and wear bite sleeves, but since the man was moved to the facility in February at least ten staff members have suffered injuries in altercations. Police reports indicate employees sustained broken bones, bites, scratches and other injuries trying to contain the man."
 
It goes on:

"[The residence] is sparsely furnished with a locking cell in its interior..many of the altercations begin when the man is assigned a 'time-out' in the padded room. Reports and staff indicate the man has broken doors and windows and sometimes maneuvers behind staff in apparent attempts to try and strangle them."

A politician weighs in:

"'Any time you can get someone with disabilities into a community setting, that's the best thing for everybody, it's a win-win for everybody,' said [State Senator Jon] Erpenbach. 'In this particular situation with the violent nature of this individual, and I can't stress this enough this individual requires four staff members within this house dressed in kevlar so they are not harmed to deal with this particular individual, there might be a better way to deal with the whole situation.'"

Interesting that the politician and a former staff member interviewed on TV do not question the underlying idea that living in the community is always the best thing that can happen to people with developmental disabilities even though everyone acknowledges that in this case it is not working to anyone's benefit. 

The only person who expresses any real concern for the man who is being subjected to imprisonment "in the community" is Police Lt. Rob Sinden who asks, "'If we have ten incidents where this individual has sent people to the hospital, how many times has he [the resident of the home] been injured?"
 
Indeed. What is happening to that poor man who tries to strangle people when he is "assigned" to the segregation cell?

Home Sweet Prison Home.

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.

Community Living: the Medicaid customer service mess

Happy Dan

Government-funded advocates from all over the country are intent on liberating people from institutions that provide them with the care they need to survive and whose families do not want them to leave. The same  advocates have decided that people who do not live in institutions are being oppressed by specialized services that expose them to too many people with disabilities. In their ideological fervor, they are helping states eliminate and limit access to programs and residential options for people with DD. I assume the states could not be happier to have the help of advocates in closing these relatively expensive programs.

Here's something that might distract these advocates for awhile from undermining the infrastructure of services available to people with DD: Put your efforts into untangling the mess that is Medicaid customer service that causes despair and outrage in anyone trying to penetrate the Medicaid wall of inefficiency and ineptitude.

I've written about this before, but here we go again.

Here's the deal: Danny needs a replacement part on his wheelchair for the tilt mechanism to work. This is vital for repositioning, which he needs frequently for his care and comfort. The wheelchair repair service set the chair in one position to still make it usable. Then they sent in all the paper work for Medicaid to authorize the purchasing of the part. Medicaid has such a huge backlog, that wheelchair repair waited for four weeks for Medicaid to respond. When they called about the authorization for service a week ago, they discovered that Medicaid had no evidence that an authorization request had been sent to them. Wheelchair repair started the process all over, faxing in the paperwork. When I called this morning, the wheelchair service said I might have better luck as a parent finding out what has happened to the order for a replacement part.

I called the Medicaid help line [1-800-642-3195] to begin several rounds of responding to automated menu items and listening to messages about how they probably could not help me on this line. After something about cervical cancer and Medicaid hearings, a message played that said "Check your local phone book for dentists. We do not have lists of dentists who take Medicaid". 

"Why not?", I said to no one in particular. Some of the messages were so well done that I believed I was finally talking to a human being only to find out that I was still on an automated call.

I finally did get through to someone named Dan. To be sure, I do not blame Dan for any of what ensued. He probably is just some guy who is waiting to find a real job and is doing the best he can in the meantime holding on to one of the worst jobs on earth: listening to people like me complain about Medicaid and reminding him that their inefficiencies hurt real people.

Dan quizzed me, first gathering information about me and then information about Danny, including his Medicaid number. I was not listed as Danny's guardian, although I sent in the paperwork for that years ago. Dan was therefore unable to impart any information of a confidential nature. But he did place me on hold for ten minutes, so that he could figure out who I could call, depending on Danny's Medicaid classification.

Dan will send me the form to fill in (again) so that I will be listed as Danny's guardian and will then be permitted to discuss his case more specifically on the phone. What I then learned is that even when I am listed as Danny's guardian, it won't make any difference: I will have to ask the provider of the service to find out about the status of the Medicaid authorization to replace the broken part. While Danny no longer has a workable tilt mechanism on his wheelchair, I will be running around in circles with the provider who is already banging his head against the proverbial wall.

In other words, there appears to be no way for an individual or a guardian to directly intervene to find out about the status of a request for Medicaid authorization for a service.

Meanwhile, I am spending most of my energy on trying to keep government-funded advocates from "helping" to liberate my sons and people like them from the services they need.

Go figure.