A Coffee Shop staffed with people with intellectual disabilities draws harsh criticism from federally-funded disability rights advocates

Bitty and Beau's Coffee, Ann Arbor

An Article in Disability Scoop, “Coffee Shop Hires Workers With Disabilities. Why Do Some Say That’s Bad News?” by Morgan Hughes, from 10/10/23 caught my eye for several reasons. One is that there has been a campaign for years by disability rights advocates to oppose and eliminate congregate settings for people with I/DD that provide services or residential programs in groups of more than 3 or 4 individuals. That includes opposition to congregate work programs, group homes, day programs, specialized school programs, larger residential settings such as Intermediate Care Facilities for individuals with intellectual disabilities, family-initiated residential communities, and anything else that advocates may construe as "too institutional”.

Many of the objections by disability rights advocates have been related to the use of federal or state funds paying for such programs. In the case of Bitty and Beau’s Coffee in Columbia, South Carolina, however, advocates have targeted a private business that receives no government funds and pays at least minimum wage to its employees. (It does not participate in the federal 14(c) waiver program.)

Bitty and Beau’s is a chain of 19 coffee shops in 11 states. The company employs more than 400 people, most of whom have disabilities.This includes a coffee business on South Main Street in Ann Arbor, Michigan, where it is part of a bustling business district in a university town. I have not visited the Ann Arbor shop, but by all accounts, the employees, their families, and the community at large enthusiastically support the presence of this unique business.

Objections to the coffee shop in South Carolina, come primarily from Able South Carolina, (AbleSC),  an organization “… established under the Rehabilitation Act to be run and operated by people with disabilities as a U.S. Department of Health and Human Services designated Center for Independent Living.” The organization received over 3.5 million dollars in government grants in 2021.

According to the article in Disability Scoop, local disability rights advocates say Bitty and Beau’s creates an environment where inspiration is the goal.

Kimberly Tissot, the CEO of AbleSC, “‘worried that employees with disabilities would be used like props, meant to offer customers smiles and hugs but not to be taken seriously as people…’ Businesses that employ only people with disabilities have also been known to pay below minimum wage because of a federal waiver that allows it, other disability rights advocates said.”...

“But critics say even if employees are earning a fair income, the store sends the wrong message to people without disabilities.

“‘It kind of plays off the heartstrings to get people to open their wallets,’ said Crush Rush, a local disability rights advocate and AbleSC board member." He calIs it crudely, "inspiration porn."

…“Despite the data, Tissot sees the business and those like it as counterproductive because she said the business segregates people with disabilities. She said that segregation can lead typically-developing people to think people with disabilities can only succeed in those environments. Tissot has a physical disability and a 13-year-old son with an intellectual disability.”

Integrated employment for thee, but not for me? 

The law (Title VII of the Rehabilitation Act establishing CILs) mandates that the majority of the CIL staff and individuals in decision making positions, including the governing board, must be individuals with disabilities. 

In other words, one could say that workers at AbleSC are employed in a congregate setting and serve primarily others with disabilities.

I see nothing inherently nefarious nor improper about Centers for Independent Living, but a little bit of self-reflection by the CIL disabled employees might temper the criticism coming from these organizations. Is it only when they are talking about people with intellectual disabilities that such congregate work arrangements are considered abhorrent? The hypocrisy is clear when one disability group attacks another on the basis of principles that they themselves do not follow.

“Nothing About Us, Without Us” except when “Us” doesn’t include you

Nothing in the Disability Scoop article indicates that representatives of AbleSC asked the employees of Bitty and Beau’s in Columbia, South Carolina, how they felt about their jobs and their place in the community. I think most of the workers in these businesses are able to communicate and if they are not, then why not ask their families how they respond to the work and whether they find satisfaction in what they do? 

I agree with Amy Wright, one of the owners of the company, who says “I really wish those same disability advocates would take that frustration they are feeling and direct it toward other businesses in Columbia that don’t hire anyone with a disability.” 

And for those who say they will boycott the business, that’s fine. That will make everyone’s life easier. 

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More information on CILs from the Administration on Community Living... 

Bitty and Beau's Coffee

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

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

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

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

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

The Housing Project for Young Professionals:

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

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

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

Here is what is planned:

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

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

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

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

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

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

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

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

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

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

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

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

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

What the studies DON’T show in the case against intentional communities

Amy Lutz, an autism parent and author, has written an article for her Inspectrum blog in Psychology Today called, “Ideology, Not Data; Studies fail to support the case against intentional communities”. She took exception to a recent blogpost by Ari Ne’eman, the founder of the Autism Self Advocacy Network (ASAN), “...depicting those of us who believe that more choices are better—virtually all the time, but particularly when it comes to residential and vocational options for the intellectually and developmentally disabled—as ‘fringe’ and ‘pro-institution.’” ASAN and other advocacy groups claim that their public opposition to farmsteads, intentional communities, and other larger residential settings is “overwhelmingly” supported by research.

Lutz took the next step in this controversy and read through the research cited by these advocacy organizations. She found that the studies are plagued with methodological flaws and their conclusions are sometimes the opposite of what the advocates would have us believe -- that intentional communities have many benefits over dispersed settings.

Among the many problems with the research is that the worst institutions of the past that housed thousands of people, many of whom had mild impairments, are used as the baseline to compare current settings. She also finds Inconsistency in defining key variables, such as size of the setting, the degree of disability of the individuals involved, and the variety of ways that settings are characterized:

“A final difficulty in assessing the research is the tremendous impact that degree of impairment has on this entire debate. Studies consistently report that residents of residential campuses score lower on IQ and adaptive functioning scales, and engage in more challenging behavior, including aggression and self-injury—factors that likely determined their placement in more restrictive settings in the first place….”

Lutz also addresses the ideology behind the movement to push all adults with DD into smaller dispersed settings that is motivated by the goals of social justice, inclusion, and combatting discrimination, often at the expense of individual needs and choice:

"…While Emerson’s concern [referring to an article by Erik Emerson] for social justice is noble, perhaps he might reconsider sacrificing the right of our most vulnerable citizens to choose where and with whom they live—a right I doubt he would relinquish for himself—to his vision of what an inclusive society looks like. Because if the 'subjective wellbeing' of my son and his peers isn’t important to Emerson, it is vitally important to them, as well as to parents such as myself, friends, providers, professionals and virtually any stranger on the street—who, if asked, would almost certainly agree that happiness is what all of us want, for all our children. Hardly a position to be dismissed as 'fringe.'"

Read the full article and pass it on.

Also by Amy Lutz: “Who Decides Where Autistic Adults Live?”

New Jersey attorney and parent speaks in defense of campus settings for ID/DD

Lisa Parles Speaking at the 2015 EASI Foundation and Families CCAN Conference

Lisa Parles, is a New Jersey attorney and the parent of a young man with severe autism. On October 15, 2015, speaking at a housing conference in Philadelphia, she gave an eloquent talk in defense of campus settings for people with intellectual and developmental disabilities. Her son Andrew lives in the Bancroft Lakeside community in Gloucester County, New Jersey.

Lisa Parles’ son went through a regression at the age of 19, something that is not uncommon among teenagers with severe autism and other developmental disabilities. At the time, he lost his ability to speak, had severe self injurious behaviors, and did not sleep for days on end. There are many people like Andrew that most people do not like to talk about, but Parles believes parents need to speak up about their children so that services necessary to help them will be available.

She believes that the campus setting with a full array of services on campus is a clinically superior model for a vast number of individuals affected with developmental disabilities. It provides economy of scale (more resources concentrated in one place serving more people at less cost per person), more flexibility for the individual and staff, on-campus resources for people who cannot leave the area without being harmed or causing harm to others, behavioral and nursing services available when needed, and a greater sense of family and community than is found in many smaller settings.

More from Lisa Parles:

The federal Home and Community-Based Services (HCBS) rule assumes measures of “success” that can actually be harmful for some people with severe DD: having access to food whenever one wants, being able to choose a roommate, having the freedom to come and go as one pleases, living at home vs. living in a group setting, to name a few.  Parles responds by saying, “[for] some people.. access to the refrigerator is eating until they die. A key to the house means elopement and [being] hit by something in the street. choosing a roommate is not an option because for my son he can’t have a roommate. When my son doesn’t sleep for two days, he almost can’t have a housemate.”

On the relatively high cost of maintaining someone in a congregate setting compared to another person living at home with one's family, she says, not only is living at home not possible for many with the most severe disabilities, but “Sometimes what it costs is what someone needs. So to say we can do twenty people in a home situation for the price of one in my view its the equivalent of saying we can give out a thousand bandaids or one surgery. When you need the surgery, the number of bandaids don’t count.”

On redefining “success”: “The direction we’re going…who’s getting to define what a community is, who’s getting to define what success is? They’re on the wrong path.”

Madison House Autism Foundation: Tour a community of 40 Neighbors with I/DD

From the Madison House Autism Foundation (MHAF). Follow this link to watch the video and see photographs of this amazing community:

By Desiree Kameka

In 2013, in the middle of a New Jersey suburb, a small apartment building was built to offer a supportive housing options to about 40 residents with intellectual/developmental disabilities (I/DD). Those who live there choose from either a one bedroom or two bedroom unit each with a living room, spacious bathroom, a small kitchenette, cable, internet, and telephone. There is no set schedule for any resident; some residents have jobs in the community, others volunteer with local charities or are working with vocational rehab to access employment opportunities. Residents live the life they want to live and go about their day with self-directed supports as needed.

As a resident of Mt. Bethel Village, one has the option to attend a day program in the community that can act as a stable support system or a safety net when job or volunteer options cannot fill one’s day. Mt. Bethel Village also includes an art studio, a gym, a library, a pool/ping pong tables, a dining area, and a community room with flat screen TVs and gaming consoles. Other amenities include transportation, an on-site nurse for medical management and referrals, housekeeping and/or laundry services, meal plans as desired, a receptionist, and 24-7 support staff as needed. When I visited Mt. Bethel Village, I had the opportunity to ask many residents why they liked living there. Most said things along the lines of, “I can be independent,” and “I have lots of friends.” Watch the video below to hear what residents think about their choice to move to Mt. Bethel Village. 

Mt. Bethel Village is currently home to about 30 residents with I/DD.  All of them have complete financial support of their family and can privately pay for their supportive housing apartment at a cost of at least $4,200 a month. One of the founders of Mt. Bethel Village used to be a direct support professional at a skilled nursing facility, having seen the dehumanization of people and their struggle to become completely dependant on others, he knew a better way of supportive living was possible. Herb eventually became the President and CEO of a senior assisted living community company.  

Mt. Bethel Village could be for only those who could private pay, but Herb would not allow that to happen. In the spirit of equity, and having a long list of hopeful individuals that could not move to Mt. Bethel Village without state support, they have fought to become an approved agency with the NJ Dept. of Human Services’ Division of Developmental Disabilities, their state Medicaid authority.

At the time of my visit in October 2015, the nine individuals who had been identified as a good fit had been waiting for over 10 months for the green light to move in, three of them are still waiting. While the majority of Mt. Bethel Village residents live in their own one or two bedroom apartment, those who access public funding must live in a three bedroom units. In order for these residents to move in, Mt. Bethel Village used their own funding to remove the walls from existing one and two bedroom units to accommodate the state mandate that three persons must live in an apartment. Considering over 26,000 individuals with I/DD in NJ are living with a family caregiver over the age of 60, and funding for an out-of home placement has only grown by about 3,000 in almost two decades, New Jersey should be doing everything in its power to ensure they will have the housing and supports needed for those who may soon lose their parents and be forcefully institutionalized for lack of options.

Mt. Bethel Village does not operate nor look like a typical apartment building, but more of a college dormitory or assisted living community with much more interaction among neighbors than a typical apartment complex. I can see how this can be confusing for the state to try and put it in an already preconceived settings checkbox, but just because it does not fit any of the current models of housing and may offer different kinds of amenities and built-in supports does not mean it’s institutional. For example, despite having private kitchens in every unit and the transportation with supports to go grocery shopping, most residents rarely decide to cook and prefer to have their meals in communal dining areas. Mt. Bethel Village has two chefs who offer several meal selections, oftentimes featuring at least one person’s favorite meal (the chefs know and request favorite dishes from residents). I had a delicious chicken tortilla soup with shrimp scampi during my visit. On the weekends, while some choose to go out to eat or visit family, others prefer to enjoy the family style dinner at Mt. Bethel. Having a common dining area has been described as a characteristic of an institutional setting by state and federal policymakers, but that seems unfair if residents have the choice and prefer not to plan, prepare, and eat in their apartment. Having a meal plan is a viable option and may improve quality of life for those whom going to the grocery store and planning meals is a stressful event. It offers a social outlet for those who would prefer not to eat alone in their apartment and offers a healthy alternative to the typical microwave dinners that many who don’t like or want to cook use for convenience.

Living in an intentional community provides the space to create a culture of access and neurodiverse leadership. Residents at Mt. Bethel Village have weekly opportunities to sit with the Executive Director, Carolann Garafola, to discuss community concerns and jointly plan solutions. Another fun culture-building initiative came from residents starting to host “Open House” events in their apartment where they create invitations, plan activities around a theme, prepare food and refreshments for their party guests, and of course, clean up after the party is over. Mt. Bethel Village offers a 2 week respite session that would give you the chance to really understand the benefits and considerations of living in an apartment building built specifically to meet the housing and support needs of peers with intellectual / developmental disabilities. Living in such a close-knit and socially stimulating environment may be too much for those who are not social butterflies, but of course one can always retreat into their own apartment as needed. Despite many residents telling me that their move occurred because their parents were sick or had passed away, my conversations with so many residents were full of joy, excitement, and pride in their home and life at Mt. Bethel Village.

All in all, to describe Mt. Bethel Village as institutional, a congregate facility, or isolating just because 40 individuals with I/DD live there is not only inaccurate but a gross disregard for their preferred home choice. When asked what he would change about living at Mt. Bethel Village, the young man in the video did not say, “We need more time in the greater community” or “more neurotypicals to be a better integrated setting.” He declared with enthusiasm that he wanted more friends to move into Mt. Bethel Village!

Recently, someone asked, “Do you support congregate settings?” My response was, “I support as many options as possible for people with disabilities to have choices, therefore it does not matter whether or not I agree with their choice or not – they have the right and dignity to choose.” Our discussion went back and forth and eventually culminated with him adamantly urging that people with disabilities do not want to live together. I have traveled all over the USA and seen countless examples of people with disabilities choosing and happily living in intentional communities among peers. Many of the individuals I’ve met lived on their own and were unsatisfied or even victims of abusive situations. I assumed he was simply unaware of the supportive housing communities I have visited. I asked if he would like to be introduced to self-advocates who have chosen to live as neighbors in intentional communities, and he refused to even give me his contact information to make introductions. His resistance has inspired me to start sharing interviews of residents living in an array of housing options all across the country. Stay tuned for more of these incredible stories!

The Olmstead Decision Has Been Misinterpreted

This is from VOR, a national organization that advocates for high quality care and human rights for all people with Intellectual and Developmental Disabilities (I/DD). Underpinning that advocacy is a respect for diversity of need and individual choice. 

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July 7, 2015

By Jill Barker, David Hart, and Tamie Hopp

The Olmstead decision, which interprets the Americans with Disabilities Act, is so clear that persistent misinterpretation by federal agencies can only be described as purposeful.

Introduction

The 25th Anniversary of the Americans with Disabilities Act (ADA) on July 26, 2015 offers an opportunity to set the record straight about what the landmark Supreme Court decision, Olmstead v. L.C., 527 U.S. 581 (1999),  actually says about the ADA’s “integration regulation.” 

The ADA’s “integration regulation” states:

“a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities.” [28 C.F.R. § 35.130(d)].

The Olmstead Court considered whether the ADA’s prohibition of discrimination by a public entity required “placement of persons with mental disabilities in community settings rather than in institutions.” (Olmstead at 587)

The Court’s answer: A “qualified yes.” (Id., emphasis added)

Since 1999, however, federal agencies and some advocacy organizations have lost sight of the individual when considering the rights established by the Olmstead decision. A thoughtful decision which balanced individual need, choice, and the state’s resources against a statute that also required consideration of individual needs, has been discarded for an interpretation that the ADA allows only for community placement. 

In sharp contrast, both the Olmstead decision and the ADA eschew absolutes. Neither support only community care or only institutional care:

[O]ne conclusion seems plain: some disabled individuals can benefit from community placement, and some may not. While all disabled are covered by the ADA, different remedies are recognized by the statute for different degrees of disability.” [Brief of VOR et al., as Amici Curiae, in Olmstead v. L.C., at 6 (February 3, 1999)]
 
The Olmstead decision and the law are so clear that persistent misinterpretation by federal agencies can only be described as purposeful.

The History of the Olmstead Decision: Lois Curtis, Elaine Wilson, and VOR

In 1995, two women, Lois Curtis and Elaine Wilson, courageously pursued their right under the ADA and its integration regulation to receive person-centered services and supports in the most integrated setting appropriate to their individualized needs. Their lawsuit against the State of Georgia, Olmstead v. L.C., made it all the way to the Supreme Court, and in 1999, culminated into what is now recognized as the landmark decision interpreting the ADA’s Title II “integration regulation.”

VOR is a national, nonprofit advocacy organization that has for 32 years supported the right of individuals with intellectual and developmental disabilities (I/DD) to receive services and supports according to their individual choice and need, regardless of setting. VOR and 141 of its affiliates and supporting organizations stood by Lois and Elaine, filing an Amicus Curiae brief in support of their right to receive community-based supports, while also arguing that the ADA does not mandate a singular placement option – the community – for all citizens with disabilities. Instead, VOR argued that the ADA’s protections extended to individuals with “degrees of disability” who are entitled to receive services, supports and accommodations according to what is most “appropriate to the needs of the individual,” which may sometimes be an institution.

Quoting VOR’s brief, the Court agreed:
 
“‘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.’” Olmstead v. L.C., 527 U.S. 581, 605 (1999) (quoting Brief of VOR et al., as Amici Curiae at 11).

The Court was clear that the ADA’s integration regulation does not mandate that people with disabilities be forced from facility-based care (“institutions”) when doing so was not appropriate to individual needs or contrary to individual choice.

The Court found that Lois and Elaine had suffered discrimination under the ADA, pointing to Lois and Elaine’s choices, their treating professionals opinion that for them community placement was appropriate factored directly into the Court’s holding, and the fact that the State had agreed to provide such services. Accordingly, the Court held community placement is only required (not always required), and institutionalization is only “unjustified,” when -

“[a] the State’s treatment professionals have determined that community placement is appropriate, [b] the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and [c] the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. Olmstead, 527 U.S. at 587 (emphasis added). 
 
The Court expressly recognized an ongoing need for facility-based care (“institutional” care) for some individuals with disabilities, stating –

“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.” Id. at 601-602.
 
Purposeful Misinterpretation
 
Olmstead is often incorrectly referred to as a community-only / deinstitutionalization mandate by disability advocates. Federal agencies, such as the Department of Justice (DOJ), the Administration on Intellectual and Developmental Disabilities (AIDD), the Centers for Medicare & Medicaid Services (CMS), and the National Council on Disability (NCD) perpetuate this misinterpretation of the Olmstead decision and pursue forced deinstitutionalization.

NCD, an agency within the U.S. Department of Health and Human Services, has published “Deinstitutionalization: Unfinished business” which encourages the closure and displacement of individuals with profound disabilities from homes of four or more residents, without regard for individual choice and need and contrary to Olmstead.

AIDD, within HHS, has likewise denigrated a proven system of facility-based care through lobbying, class action lawsuits and other tactics in support of forced deinstitutionalization, aimed at evicting the most vulnerable people with I/DD from their facility homes, under the guise of “integration” for all, contrary to Olmstead.

CMS finalized a new regulation that defines “community” settings for the purpose of receiving Medicaid Home and Community-Based Services (HCBS) funding. Although the rule does not require the elimination of congregate settings for providing residential and other services to people with I/DD, it certainly encourages such closures. For people with the most severe disabilities and highest needs, this may very well prove costly to states, if they maintain the same level of service for these individuals in non-congregate settings. Instead, the historical and more likely reaction by cost-conscious states will be to reduce services by eliminating congregate settings based on the allegation that the need for them has decreased when it has not, or reducing services by eliminating congregate settings just to avoid having to justify them to CMS and ideologically motivated advocacy groups, regardless of the needs and preferences of the individuals involved. Closing community congregate settings in response to the new rule will add to the existing gap in services left by historic deinstitutionalization. As a result, the whole system of care is likely to be undermined in the name of inclusion and integration, and contrary to Olmstead.

The DOJ’s Civil Rights Division is charged with enforcing “federal statutes prohibiting discrimination on the basis of race, color, sex, disability, religion, familial status and national origin,” including the ADA. Its technical assistance website on Olmstead is titled:

    “Olmstead: Community Integration for Everyone”

These are not mere words. DOJ’s Olmstead enforcement actions bear out an interpretation of Olmstead that mandates “community integration for everyone” by pursuing forced deinstitutionalization, without any regard to the choice or needs of affected individuals, contrary to Olmstead. Consider U.S. v. Arkansas in which Federal Judge J. Leon Holmes in the first paragraph of his decision dismissing DOJ’s claims wrote:

Most lawsuits are brought by persons who believe that their rights have been violated. Not this one. The Civil Rights Division of the Department of Justice brings this action on behalf of the United States of America against the State of Arkansas and four state officials in their official capacities alleging that practices at Conway Human Development Center violate the rights of its residents guaranteed by the Fourteenth Amendment, the Americans with Disabilities Act, and the Individuals with Disabilities Education Act. All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons—through their parents and guardians—disagree. U.S. v. Arkansas, 4:09-cv-33 ( 2011, E.D. Ark.) (emphasis added).

Over 150 media reports in more than 30 states in the past two decades reveal systemic concerns in small settings for people with intellectual and developmental disabilities (I/DD), including deaths, abuse, neglect, isolation, and financial malfeasance.

Across the country, thousands of fragile citizens have needlessly died in community settings as advocates aggressively pursued community integration without regard to the preparedness of these settings to receive fragile individuals, even while proponents began to acknowledge the predictable problems. As noted Samuel Bagenstos, former Principal Deputy Assistant Attorney General in DOJ’s Civil Rights Division and a key litigator in deinstitutionalization cases –

“It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.”[“The Past and Future of Deinstitutionalization Litigation,” 34 Cardoza L. Rev. 1, 21 (2012)].

More recently dramatic increases in mortality of individuals with I/DD in community settings has been widely publicized in Georgia and Virginia, two states which are in the process of implementing DOJ Olmstead settlements. In Georgia, there have been nearly 500 deaths in both 2013 and 2014 of individuals with I/DD in community settings, including 62 individuals who transferred from facility-based care per settlement requirements. In Virginia, the rate of mortality of those individuals with I/DD who transferred from facility care per settlement terms is double that of facility-based individuals.

Conclusion

Like the integration regulation itself, the Supreme Court’s decision requires consideration of an individual’s needs, while also holding that individual choice also matters.

However, don’t take our word for it.  Read the Olmstead decision.

There are tragic outcomes that lie in the wake of forced deinstitutionalization, which since 1999 has been improperly pursued in Olmstead’s name.

Lost in pursuit of the “integration” ideal is concern for the individual. Person-centered planning, which is held up as the ideal by the government, advocates, and nonprofit organizations alike, is short-changed by system change advocacy to eliminate specialized care options for those who need it, which is exactly what the Olmstead court cautioned against. Instead, Olmstead and the ADA reinforce the right of choice, requiring a level of integration that meets the needs of the individual.  This right of choice is preserved only if we maintain a full range of options to meet the full range of needs for a diverse population.

About the Authors

Jill Barker is the First Vice President of VOR. She has two sons with profound intellectual and developmental disabilities living in a community setting in Michigan. David Hart, from Massachusetts, is the Chair of VOR’s Legislative Committee. Tamie Hopp, from South Dakota, is the former VOR Director of Government Relations & Advocacy and currently a volunteer for VOR. More information can be found at www.vor.net.

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.

VA plans to close facilities for DD as numbers on waiting list soar

An editorial from the Lynchburg Virginia News Advance questions the wisdom of the state legislature failing to address the concerns of parents and guardians of Virginia’s four remaining residential “training centers” [Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs/IID].

“The training center closings result from a consent decree Virginia, under the administration of former Gov. Bob McDonnell, entered into with the U.S. Justice Department, which has been pushing states to care for its disabled citizens in community-based group homes, rather than in residential hospital-type settings. In the 2012 settlement, it is important to note that the Justice Department did not require the closing of Virginia’s four training centers; rather the state chose to go that route to come up with the money for group homes.” [emphasis added]

Most of the remaining residents in the facilities have the most intense needs and include people who have profound physical, mental, and behavioral disabilities. Under the terms of the Department of Justice settlement, these people would be moved to community settings where they would theoretically receive the exact level of care that they now receive  at less cost to the state:

“Except — and here’s the scary part for guardians and families — the needed group home infrastructure in the commonwealth simply does not exist. Currently, there are thousands of people on the state’s waiting list for a group home spot. And that waiting list has only grown in the three years since the McDonnell administration decided to embark on the closure of the training centers, a path chosen because Richmond didn’t want to spend any additional money to build out the group home network before the training centers would close.” [emphasis added]

The editorial board asks, “To all its foes — from the Assembly Democrats and Republicans to the McAuliffe administration, we ask this question: Are you too tightfisted to care properly for the least among us?…Time and again, though, the answer has been yes.”

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

Use it or lose it: Allowing more community use of a facility for DD is less costly than closing it down

The argument being made to close Southbury Training School in Connecticut, an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID), is the same faulty argument being made in Michigan to justify closing programs that provide residential, employment, and day program options in congregate settings. It goes like this: When compared to the average cost of serving individuals in the community, congregate settings are far too expensive — close them down and there will be plenty of money left over to serve more people with disabilities!

Often overlooked in this calculation, is the fact that the people served in licensed congregate settings generally have more severe disabilities and need more specialized services than people living at home or in the so-called community. When people with highly specialized needs are served in community settings, it can be just as costly if not more costly than in group settings. In reality, costs savings often come as a price to people with disabilities and their families in the form of fewer services of lower quality.  

Comparing the average cost of supporting people who require less intensive supports in the community to the cost of supporting distinctly non-average individuals who need more intensive supports and services is not a fair or accurate comparison. While costs should not be the only consideration for where and how a person with DD is served, it is inevitably raised as a factor by disability advocates who try to justify eliminating programs that do not conform to their ideology of full inclusion for every person with a disability. 

The following are excerpts from an editorial that appeared in the Hartford Courant on 2/20/15: “Using Southbury Training School Is Only Real Solution” by Martha Dwyer and Tamie Hopp. Martha Dwyer is president of the nonprofit Home and School Association of the Southbury Training School. Tamie Hopp is director of government relations and advocacy for VOR, a national nonprofit that represents primarily individuals with intellectual disabilities and their families/guardians.

*********************************************************** 
There is a crisis in the care of people with intellectual and developmental disabilities in Connecticut. At least 2,000 individuals who are living with their families are on the waiting list for placement in a residence, many for more than 20 years and many in desperate situations. [emphasis added] 

Many people believe that closing Southbury Training School and the state regional centers and moving residents to four-person (or smaller) group homes will free up funds to enable individuals on the waiting list to be placed in residences. This is incorrect and will create more problems than it will solve...

The numbers don't add up. There are approximately 313 individuals at Southbury and 191 at regional centers. At least 125 new group homes would have to be renovated and staffed to provide highly specialized services for these individuals. Moving a resident of Southbury to the community generally takes one to two years, and this during periods when only a few residents are moved at a time. To move 500 people would take years and a huge amount of money. Residents at Southbury and regional centers have been given priority over people on the waiting list for years and that would have to continue indefinitely to close Southbury and the regional centers. That would help no one on the waiting list for many years.

…Seventy-eight percent of Southbury residents have severe or profound intellectual disabilities, the vast majority have significant functional disabilities (a majority need help walking, eating, toileting, or dressing), and 83 percent have additional disabilities such as cerebral palsy, blindness, deafness, epilepsy or mental illness...they do not live in a segregated environment but interact on a frequent basis, to the extent they physically and intellectually can, with people in the community. They will be moved from their familiar surroundings and they will be exposed to a smaller group of unfamiliar people...

There is a better, more comprehensive solution that no one is talking about: Open Southbury and the regional centers for future placements and use Southbury for outpatient services and skilled nursing care for aged members of this population and respite services for families. Repairing and reopening cottages on the Southbury campus and using available regional center beds would be less expensive and faster than seeking homes in the community for individuals on the waiting list.
 
… The state should expand the sophisticated medical, dental and psychiatric facilities already in use at Southbury and make them available to people on the waiting list and in the community. It would make more sense to use the facilities the state already owns, and thereby bring down individual costs, than to waste this beautiful resource. We believe this would save money and improve service throughout the state.

...Southbury is a ready, compassionate solution centered on meeting people's true needs, not a numbers game that simply does not add up.

Read the complete editorial here....

Insights into HCB settings controversy: seniors and the continuum of care

I have recently begun to follow a New York Times reporter, Paula Span, at The New York Times Blog “The New Old Age - Caring and Coping”. Paula Span covers issues relating to seniors and their caregivers, who, as it turns out have some things in common with people with developmental disabilities and their caregivers. 

A recent column by Span,  “Dementia, but Prettier”, is a comment on movies that tackle the subject of dementia. She notes that many attractive actresses have taken the leading roles of people being swallowed up by this progressively disabling condition. While praising the acting and some of the films on dementia, Span has doubts that caregivers will see these movies as anything but prettied-up versions of real-life that disguise and deny the realities of the experience.

In another recent blog post, “Unmet Needs Continue to Pile Up” 12/9/14, Span discusses a recent study that compares how well or poorly seniors do in terms of how many needs go unmet across a continuum of living situations. As Span explains,”’Unmet needs,’ …refers to care or help you require but don’t get. If, when you’re elderly or disabled, you aren’t able to shop or cook, you lack the strength to go outside, you can’t keep track of your bank account or your medications — and no one assists you with those functions — you have unmet needs.”
 
In the debate about whether congregate care can provide people with disabilities the care they need and “integration appropriate to their needs”, the study offers some insight: it all depends on how needy the person is and how well those needs can be met satisfactorily over the continuum. Span also asks the question of whether moving into an assisted living facility or nursing home is worth the extra costs involved in meeting the needs of seniors - “…how often those supposed solutions actually provide enough services to merit their very high price tags. When someone is spending $3,500 a month for assisted living… are there fewer activities the resident can’t manage? Does he or she have fewer unmet needs?”

The national study is entitled “The Residential Continuum From Home to Nursing Home: Size, Characteristics and Unmet Needs of Older Adults”. It is published in the Journals of Gerontology,  and the authors are Vicki A. Freedman (from our own Institute for Social Research at the University of Michigan) and Brenda C. Spillman. Here are the results of the study as published in the abstract for the Journal: 

"Of 38.1 million Medicare beneficiaries ages 65 and older, 5.5 million (15%) live in settings other than traditional housing: 2.5 million in retirement or senior housing communities, nearly 1 million in independent- and 1 million in assisted-living settings, and 1.1 million in nursing homes. The prevalence of assistance is higher and physical and cognitive capacity lower in each successive setting. Unmet needs are common in traditional community housing [living in one's own home] (31%), but most prevalent in retirement or senior housing (37%) and assisted living settings (42%). After controlling for differences in resident characteristics across settings, those in retirement or senior housing communities have a higher likelihood of unmet needs than those in traditional community housing, while those in independent or assisted living settings have a lower relative likelihood." [emphasis added]
 
Although it is apparent at first glance that people have more unmet needs in congregate care, the numbers need to be adjusted to take into consideration the higher need for physical assistance and the lower cognitive capacity of seniors in congregate care. This translates into  a lower prevalence of unmet needs in congregate care. This adjustment for the severity of the disabilities, the increasing needs that go with severity, and how well those needs are met over a continuum of settings is often missing in discussions of where is the best setting for people with disabilities to live.

On the issue of costs, Span says of the study result, 

“…[it] looks like a classic good news/bad news finding. On the one hand, seniors and families are getting something for that $3,500 a month and more (frequently way more) in assisted living: Even though they are older and more physically and cognitively impaired, they don’t have more unmet needs than younger, healthier seniors in their own homes.

“The bad news, though, is that unmet needs remain too high in all these settings. In their own homes, in senior housing and retirement communities, in assisted living, lots of people aren’t getting the help they manifestly need.”

"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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Talking points for protecting DD individual housing choices

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

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

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

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

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

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

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

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

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

According to the Talking Points:

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

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

Wyoming : Working together better than circling the wagons

..not circling the wagons

This editorial is from the Caspar Wyoming Tribune and appeared in the VOR Weekly News Update for September 27, 2013   

It also appeared in the Lander Journal (“Working Together,” 9/25/2013), the Gillette News Record (“Wyo. needs to do more for developmentally disabled,” 9/25/2013) and the Wyoming Tribune Eagle (“Families of the disabled must carry their torch,” September 20, 2013)

Connie Howard is VOR’s Wyoming State Coordinator. Connie’s son, Mark, has profound intellectual disabilities and has received high quality, specialized supports in both facility-based and community-based settings.  

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

We must work together, not apart 
by Connie Howard
 
September 21, 2013 
Casper Star Tribune
Casper, Wyoming 

I have been advocating for people with developmental disabilities for 53 years. By no coincidence, that’s also how old my son is.

Mark is developmentally disabled. While young, I never said “I want to be an advocate for people with disabilities when I grow up.” Like so many other families of individuals with developmental disabilities who daily advocate for their loved ones, my son has brought out the advocate in me.

While my advocacy is certainly motivated by my son and his needs, I also recognize that he is part of something much bigger. Mark is part of a population of developmentally disabled adults who are served by a complex web of state and federal programs all designed to ensure that he and his peers are adequately and safety served in settings of their choice. 

Calling on the general public to support the least-abled among us is the greatest moral test of our government and its people, as noted so aptly by Hubert Humphrey.

The compassion of the general public in helping to provide my son and his peers the supports they need is not lost on me. I recognize that what Mark receives is a blessing, not an entitlement.

But, the system is not perfect and that motivates me too.
 
The system allows aging parents to continue caring for their middle-aged loved ones with developmental disabilities long beyond what is reasonable. The system allows 600 Wyomingites in desperate need of services to wait. Worst of all, because it can hinder (or stop) progress, legislative debates about the system’s future encourage infighting among advocates for people with disabilities.

Recent proposals suggest that Wyoming’s main Medicaid programs for people with disabilities – the Wyoming Life Resource Center and community-based programs—must be cut (translation: individuals will lose services) to provide funding for people waiting for services.

Don’t get me wrong. People in need should not have to wait another day. But, how is “robbing Peter to pay Paul” a solution?

Yet, even as every advocate sees the injustice of depriving one segment of the population to meet the needs of another, it still takes a collective resolve to avoid “circling the wagons” in support our own programs.

On Sept. 26, Gov. Matt Mead, like many state officials and legislators before him, will visit the Wyoming Life Resource Center. I am encouraged by these visits. Too often, elected officials make policy “sight unseen.” Mead will see firsthand the wonderful care my son and his peers receive. He’ll see profound needs being served so compassionately.

If given the chance, I will use this opportunity to encourage the governor’s support for a broad continuum of supports, services, residential, and employment options that match the broad spectrum of abilities, needs and preferences within the disabled population. I vow not to “circle the Wyoming Life Resource Center wagon.” My support for WLRC will be clear but not exclusive. A continuum of service options is needed.

I will also continue my advocacy in Cheyenne, attending rallies in support of expanded community-based programs, while also speaking in support of the great need filled by WLRC.

I will also encourage many more fellow advocates to do the same. As Pastor Rodger McDaniel wrote in his blog, “The developmentally disabled, their families and advocates should flood the Capitol building. They should occupy the rotunda of the building, filling it with the faces of the people who will suffer the impact of the choice the Legislature made.”
 
Families of Wyomingites with developmental disabilities must carry the torch for our loved ones, and we must do all we can to carry this torch hand-in-hand. 

For if not us, then who?

The ARC Michigan to the State : Stop funding congregate settings

...sentenced to a bucolic lifestyle

The ARC Michigan is at it again, demanding that the state discontinue Medicaid funding for people with developmental disabilities participating in programs that don't meet the ARC's approval. This time around, The ARC MI, a state advocacy organization for people with DD, is backed up by five other advocacy groups whose executive directors co-signed a letter to James Haveman, the director of the  Michigan Department of Community Health (MDCH). Despite the backing of the Autism Society of Michigan, the Epilepsy Foundation of Michigan, the Michigan Disability Rights Coalition, United Cerebral Palsy of Michigan, and Michigan Protection and Advocacy Service, the ARC is still not persuasive in arguing that people with DD  are being discriminated against when they choose to participate in specialized programs designed for people with disabilities.

The complaint by these advocates appears to be based on the misconception that any congregate setting (a setting that serves more than two or three people with disabilities in a group to provide specialized services or residential options) is by definition discriminatory. They claim that this comes from the Americans with Disabilities Act (ADA) and the 1999 U.S. Supreme Court Olmstead decision, but this is easily disproved. This misreading or misinterpretation of the law makes one wonder if the executive directors of these influential organizations have ever read the ADA or Olmstead. Their misconception, however, is  prevalent among many government-funded advocacy groups and is even being used by state and federal governments as an excuse to eliminate specialized services and programs for people with DD. Who knows whether the advocates have deliberately misinterpreted the law, or whether they have come to believe their own misconceptions after hearing them repeated over and over again.

The project that is receiving the most attention from these groups at the moment is Benjamin's Hope, a non-profit in Holland, Michigan. This is a newly opened parent-initiated project that will eventually house 24 people with autism and other developmental disabilities in custom-designed homes. A 40-acre campus will provide recreation, meaningful employment, and other programs for both residents and the larger Holland and Ottawa County communities. It is a public/private model, that uses public funds for direct care. Medicaid "Home and Community Based Services" funds pay for direct services for participants but specifically do not pay for housing, food, or other basic supports. (HCBS funding is generally available for eligible DD adults regardless of where they live.)

The advocates shrilly contend that the existence of projects such as Benjamin's Hope reverses policies "in the direction of integration and inclusion…" They find them "unwarranted and frightening", calling the "demand" for public dollars "a form of blackmail...They are saying we will decide where and ho[w] people, including our children, with developmental disabilities will be served well past our life time. They will be isolated, segregated and served in institution-like situations, albeit a private one, using public dollars."

"…should Medicaid/CMS [the federal Centers for Medicare and Medicaid Services] end up permitting funding, generations of persons with developmental disabilities will be sentenced to occupy isolated settings separate from real community and the rest of us, even if at some artificial point community contact is attempted." [click here for more on the controversy over proposed CMS rules.]

Blackmail? Isolation and segregation? Institution-like situations? That's strong language for these organizations to use, especially considering that their letter offers no evidence to support any of these accusations. I know of no individuals living at Benjamin's Hope, for instance, who had to blackmail their local Community Mental Health agency to receive funding. It is safe to assume that people involved in the project were funded only after a careful process of individual evaluation, person-centered planning, and the weighing of possible alternatives. Their families most likely did a great deal of soul-searching before they made the momentous decision to place the care of their loved-ones in the hands of others.

Just how isolated and segregated are the people living at Benjamin's Hope? Within two weeks after the ARC Michigan letter was written and signed, Benjamin's Hope held its grand opening,"the Firelight Festival of Hope", that included not only the people directly involved in the project, but hundreds of people from the community enthusiastically showing their support.  In addition, State Senator Arlen Meekhof and state Representative Amanda Price presented a tribute honoring the non-profit, signed by Lt. Governor Brian Calley whose daughter has autism. The success of Benjamin's Hope is strongly  linked to the fact that it is engaged with and supported by its surrounding community.

Furthermore, as far as I am aware, no one involved in Benjamin's Hope or any other family-initiated and community-supported project ever suggested that they intend to impose their model of community living on any individuals who do not want it. This is in sharp contrast to the approach taken by the professional advocacy organizations.

Perhaps the ARC and the co-signers of the letter to the State would not have found projects such as Benjamin's Hope so "frightening" if they had ever bothered to talk to the people involved or to their families. None of the executive directors who signed the letter bothered even to contact the director of Benjamin's Hope.

Could there be a more obvious display of the arrogance of advocates who are so sure that they know what is best for everyone that they never have to contemplate the harm they may be doing to the people they claim to represent?

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

Links to documents:

Letter to CMS from Dohn Hoyle, the ARC MI Executive Director, 8/13/13
Letter to CMS from U.S. Representative Huizenga supporting Benjamin's Hope
Letter to MDCH from The ARC MI and other advocacy groups 9/3/13

The ADA, Olmstead, and Choice: 

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.
 
Olmstead Resources
1999 U.S. Supreme Court Olmstead Decision
Olmstead Presentation by Bill Burke
What Olmstead is Not