Groundbreaking Survey of Families of Adults with DD

“….Dispels myths, shows institutional homes are part of our communities”

I’m not often quoted in press releases, but this has to do with a committee that I chair for VOR. We conducted a survey that gathered perspectives of families of individuals with profound disabilities who receive care in Medicaid Intermediate Care Facilities (ICFs) or in home and community-based settings.

VOR is a national nonprofit organization that advocates for individuals with intellectual and developmental disabilities, including autism. We are the only national organization that advocates for a full range of residential and service options for people with intellectual and developmental disabilities, including own home, community-based, and larger settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID).

Here is the press release for the survey report.

VOR represents a large number of families whose family members have severe to profound disabilities that are complicated by the presence of multiple disabilities, medical fragility, or severe behavioral challenges. Many, but not all, live in institutional settings, and have needs that are often overwhelming for families and smaller community settings such as group homes. We were able to gather responses from families and guardians in thirty states, representing 117 Intermediate Care Facilities (ICF/IID) and compare them with responses from families and guardians of people who lived in smaller community homes. 

Individuals who live in Medicaid-funded ICFs/IDD receive an institutional level of care. As a bundled service program, Medicaid ICF settings provide a set of services according to a standardized set of guidelines across the nation. The “Social Security Act created this benefit to fund ‘institutions’ (4 or more residents) for individuals with intellectual disabilities, and specifies that these institutions must provide ‘active treatment,’ as defined by the Secretary” [Centers for Medicare & Medicaid Services(CMS)].

The conclusions we reached from the survey results were:

• The responses to the ICF survey revealed a sharp contrast between common misperceptions of “institutions” as segregating and isolating environments and the perceptions of family members and guardians of individuals living in these settings. 
• Based on their own experiences, ICF respondents indicated a high level of satisfaction with their individuals’ ICF homes, staff competency, access to services and community integration. 
• Non-ICF respondents expressed general satisfaction in measures relating to integration, access to services, staff competency, and vocational opportunities but were evenly divided over whether their individuals would do poorly or well in an ICF as an alternative setting. ICF respondents by a strong majority believed that their individual would do poorly in a non-ICF community setting. 
• Most respondents for both surveys were informed about alternatives to their individuals’ current placements based on their own evaluations of different settings and, in some cases, the individuals’ prior placements in other settings. 

Especially revealing were the personal examples and responses provided by respondents, primarily families, in response to this question:

“What would you like our government to know about the current move to de-institutionalize ICF residents in favor of small community-based facilities?”  

What mattered most to families of those receiving care in both ICF and Non-ICF settings was that their family members with I/DD received the care they needed and that their right to individual choice was respected. As so aptly stated by one respondent –

“Good public policies should be based on experience, common sense and humanity. There should be deference and respect for the positions of families who have first-hand experience in the care and treatment of persons with life-long disabilities” (ICF Survey respondent). 

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About VOR

from the Nonprofit Quarterly, July 2014:  "People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities" by Tamie Hopp, VOR Director of Government Relations & Advocacy

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.”

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.

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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....

Disability Politics: Divide and Conquer

These remarks were made when Thom Tillis was the North Carolina Speaker of the House. He is now the U.S. Senator-elect from North Carolina:

"What we have to do is find a way to divide and conquer the people who are on assistance," Tillis said. "We have to show respect for that woman who has cerebral palsy and had no choice, in her condition, that needs help and that we should help. And we need to get those folks to look down at these people who choose to get into a condition that makes them dependent on the government and say at some point, ‘You’re on your own. We may end up taking care of those babies, but we’re not going to take care of you.’ And we’ve got to start having that serious discussion." 

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Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when she talked to reporter Beth Miller about federal funds paying for services for people with disabilities who choose to live in congregate care (more than 3 or 4 people with disabilities living together):

"...she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so. 

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

In response to these comments, Dr. Lanny Edelsohn wrote in an opinion piece about McMullin-Powell's remarks:  "...I am nonetheless most grateful for her finally revealing something that many in the disability community have long suspected but no one has yet had the courage or honesty to admit: that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money." [emphasis added] 

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Then there is this from The Press Democrat: "Close to Home: Time to end war over the Sonoma Developmental Center" by Kathleen Miller, 11/8/14. Kathleen is president of the Parent Hospital Association at the Sonoma Developmental Center in Sonoma Valley, CA. 

"...Following the [Halloween] parade, I took my son out to lunch. While at one of the local restaurants, I ran into a former SDC employee who now works for a community day program provider. Her clients were eating there also, and we enjoyed a brief minute to chat. I reminded her that it was parade day at Sonoma Developmental Center. She had always been an enthusiastic participant during her years working at the center, and we both agreed what fun it would be if her community clients could join with SDC residents and participate in the parade.

"She shook her head and shared that it was frowned upon for those in her program to in any way participate at SDC events. I didn’t have to ask why. It is an old battle that continues today.

"As long as I have been aware of developmental centers and community services outside of the centers, I have also been aware of the friction between them. Care providers tell their clients horror stories about what life is like inside developmental centers. They bring them to legislative hearings to urge for closure even if these same clients have never set foot inside of a developmental center."
.........

Kathleen Miller would like to create "...a seamless system that serves all of the developmentally disabled populations, including those that regional centers struggle with. We need to find ways to use the Sonoma Developmental Center infrastructure to create something special, a system that can fill the gaps in care that exist in today’s system. We need a system that cannot only help the center’s residents but those in community setting where services are not working."

She is disheartened by the old voices that only want closure, but she is also hearing new voices that give her hope:

"These new voices either know nothing about the old battle lines or want to rise above them. It is my hope that together we will be those who decide the future of Sonoma Developmental Center and of the system of care going into the future."

When more costs less: more RN's in nursing facilities equals better and less costly outcomes for patients

Some of the most severely developmentally disabled people have medical needs that go beyond what most community settings and group homes can provide and may only be adequately met in Intermediate Care Facilities for people with intellectual and developmental disabilities. But what is the cost of not meeting those needs through the availability of competent nursing services?

Here is a clue from an article in the New York Times, "Where are the Nurses?" by Paula Span, 8/13/14. It looks at the effects of too few registered nurses in nursing homes:

"The 1987 federal law intended to reform the country’s nursing homes required a registered nurse on-site only eight hours a day, regardless of the size of the facility. Supporters at the time understood that in a building full of sick and disabled elders, health crises could occur at any hour. But getting the legislation passed required substantial compromises, including in regulations allowing reduced nurse staffing.

"'It’s something advocates have wanted to return to ever since,' said Robyn Grant, director of public policy and advocacy for the National Consumer Voice for Quality Long-Term Care. 'I think most people will be both shocked and appalled that there’s not an R.N. on duty around the clock.'"

Representative Jan Schakowsky, Democrat of Illinois, wants to fix this through proposed legislation, HB 5373:

"Adding registered nurses will hardly solve all the quality problems at nursing homes, which need more staff of other varieties, too. But it’s important unfinished business.

"'Otherwise, we probably should refer to these facilities as something besides nursing homes: 'pre-hospitalization holding facilities,' perhaps, or 'well-intended residences for the incurably underattended to.' You can probably come up with a few even-less-flattering names yourselves.'"

Studies cited in the article support the idea that providing adequate nursing care in nursing facilities will save money in the long term: 

"Studies have repeatedly pointed to the importance of registered nurses. With higher registered-nurse staffing, patients have fewer pressure ulcers (aka bedsores) and urinary tract infections and catheterizations. They stay out of hospitals longer. Their homes get fewer serious deficiencies from state inspectors. Their care improves, but it costs less."
 
Perhaps we could learn something from this for people with DD.

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.  

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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: Our Way or the Highway

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

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

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

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

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

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

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

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

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

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

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

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

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

Stated another way:

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

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

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


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Information on the ARC Michigan: 

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

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Letters from Hoyle to MDCH and MDCH to Hoyle:

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

Links to full text of Letters:

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

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

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

Maryland: ICF/ID admission determination requires due process

(from the VOR web site)

The Maryland Court of Special Appeals, in 2006, found in favor of Appellant, Mary Reese, who, on behalf of Virginia Massa, appealed the denial of Virginia’s admission to Holly Center, a state-operated Medicaid Intermediate Care Facility for Persons with Intellectual Disabilities (ICF/ID).

The Court agreed that Virginia was denied procedural due process because the Statute only provided for a hearing if the Secretary approved admission; it did not require a hearing when an application for ICF/MR admission was denied. Because ICF/MR admission is a state benefit, applicants who may be eligible have an interest that cannot be taken away without due process. To the extent that the Statute does not provide for a hearing when admissions are denied, the statute is unconstitutional.  

 
The case is Mary L. Reese, Guardian v. Department of Health and Mental Hygiene (Md. Ct. Spec. App. 2006).

Sometimes the right place is an institution

This is an unusual story coming out of Maryland. Mary Reese, the stepmother and guardian of a woman with severe intellectual disabilities fought for years to obtain the care her stepdaughter needed in an institutional setting, an Intermediate Care Facility for persons with Intellectual disabilities (ICF/ID). By challenging the state's denial of admission to the facility, Mary also set a precedent in the Maryland Court of Special Appeals that ruled that the state's denial of a hearing after denying admission to the facility is unconstitutional.

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Holly Honeymoon: Victory is Christmas present for one family and hope for others
by VOR, January 31, 2013

After an eight year journey, Virginia (“Ginger”) Massa now calls Holly Center home. Families in similar situations across the country will appreciate what a monumental challenge it was for Ginger and her family to secure placement at Holly Center. As a Medicaid-licensed intermediate care facility for persons with intellectual disabilities (ICF/ID), becoming a permanent resident meant bucking a state and national trend.

Ginger’s good fortune is not lost on Mary Reese, Ginger’s stepmother and a VOR Board Member. As a national advocate, Reese knows all too well that Ginger’s struggle for the past eight years is one shared by thousands of individuals across the country.  She recognizes that her job as an advocate is not done.

“Our elation at Ginger’s placement at Holly Center is diminished by the knowledge that thousands of others are ‘stuck’ in community residential programs without consistent care and comprehensive services that are so necessary for their well-being.  I wish we could have done more to change this system which is so heartless and cruel in the name of individual rights and the subjective interpretation of least restrictive environment.”
 
Looking back and ahead

Ginger's long journey, while certainly peppered with significant hurdles along the way, is not without success that will benefit others.

One early legal victory was the 2006 decision by the Maryland Court of Special Appeals ruling which stated that Massa was denied due process when Maryland's Secretary of the Department of Health and Mental Hygiene refused to even hear her request for an ICF/ID placement. The controlling statute was found unconstitutional because it only provided a hearing when ICF/ID admission was approved. No such hearing right was offered when ICF/ID admission was denied. Ginger's fight changed state law which now requires appeal hearings in each case.

"Families still face an uphill battle, but at least now there must be a fair hearing," remarked Reese. "In our case, it reset the clock and gave us hope; before it was nothing more than the Director's whim, letterhead and signature."

Reese, who has long been involved in VOR and now serves on its Board of Directors, credits VOR for recognizing that a victory for Ginger would benefit Ginger’s peers throughout Maryland.

"VOR convinced the law firm Sidley Austin, LLP, that Ginger's cause was a case worth taking," said Reese. Thanks to VOR, we had access to outstanding legal representation and advocacy to carry this cause forward." Sidley Austin attorneys provided pro bono representation to Ginger and Mary for more than 6 years.

Ginger: At home at Holly

"I've been telling everyone it felt like Ginger and I were in the film 'The Wizard of Oz,'" says Reese. "Remember how the film begins in black and white and then at the yellow brick road everything turns to Technicolor? That's the best way I know to describe what a dramatic change Ginger has experienced moving from her inadequate and, at times, unsafe, community placement to Holly Center, a licensed ICF/ID."

“Her life and care has taken such a dramatic change, it is hard to believe we could have ever grown to tolerate for so long the poor care provided in her community home," she adds.

"We will not abandon those who are not as fortunate," says Reese.

"Our greatest hope is that Ginger's long journey paves the way for others in Maryland and even across the country."

Connecticut: Abuse and neglect in residential facilities

Disability Scoop, in an article by Michelle Diamont, "Senator Seeks Federal Probe of Group Homes", 3/6/13, reports that the U.S. Senator from Connecticut Chris Murphy has asked for “an immediate investigation into the alarming number of deaths and cases of abuse of developmentally disabled individuals in group homes.”

The article says, "Specifically, Murphy urged Inspector General Daniel Levinson [in the U.S. Department of Health and Human Services] to focus on the 'prevalence of preventable deaths at privately run group homes across this nation,' citing increased privatization of residential services for those with disabilities in recent years."

It goes on to say, "The senator’s request comes in response to a recent series of articles in the Hartford Courant detailing cases of abuse and neglect of those with developmental disabilities at various residential facilities in Connecticut. The newspaper found that there were 76 deaths of those with developmental disabilities between 2004 and 2010 where officials cited abuse, neglect or medical errors…Murphy indicated that similar reports have emerged in recent years from Virginia, New York, Massachusetts, Louisiana and Texas."

This article from the Hartford Courant, "Abuse, Neglect Cited As Factors In Deaths Of Dozens of Developmentally Disabled In State Care" By Josh Kovner, Matthew Kaufmann and Dave Altimari details the Hartford Connecticut Courant's findings in its investigation of abuse and neglect in the state's facilities for people with developmental disabilities, including public and private group homes, nursing homes, and institutions.

According to the article, "The Courant's review of state records associated with the more than 100 deaths revealed systemic flaws in the care of the developmentally disabled, ranging from breakdowns in nursing care to gaps in the training of staff to lapses in agency oversight….

"Developmentally disabled people were scalded to death in bathtubs; were fatally injured in falls while on medication that affected their balance; choked to death on solid food while on ground-food diets; died of illnesses despite showing symptoms for days or even months; and succumbed while being physically restrained...

"In 2001, a Courant investigation of deaths of intellectually disabled people in state care identified 36 cases from 1990 to 2000 in which abuse or neglect played a role in the death. The Courant found more than twice as many cases from 2004 to 2011, despite added oversight by the agency now known as the Department of Developmental Services. Now, budget pressures are further straining a system that many believe has reached its breaking point."

The article includes links to other articles in the series investigating the care of developmentally disabled people in Connecticut.

The VOR Weekly News Update from March 8, 2013 also covers the Disability Scoop story and provides this link to a blog from the Southbury Training School. The blog post urges the state of Connecticut to reconsider its decades-long decision to close admissions to the training school and to see STS as part of the solution to the current crisis in care in Connecticut:

"STS is a critically important state asset.  On its campus are group-home-style residences as well as medical and dental facilities that serve both its own residential population and many people in the community.  Those facilities are staffed by on-site doctors and nurses and by specialists who regularly visit the residents, most of whom have severe and profound levels of intellectual disability and complex medical conditions…

"In response to a court settlement in 2010, the state has stepped up its efforts to encourage guardians to move residents out of STS and into the community-based group-home system.  However, there is currently a waiting list for residential placements in that system that is conservatively estimated at more than 1,000.  There are not enough group homes for people who need them. 

"Anyone who agrees to leave STS will be moved quickly to any open or newly built community-based residence.   But that means that they are moved ahead of many other people developmental disabilities, who may have been waiting for years for a residential placement.

"The result is that ever larger numbers of people are being kept at home with inadequate care or are being placed in nursing homes, which state officials acknowledge do not have the staffing expertise to care for them. "

News Coverage of debate over closure of institutions in Virginia

NCD Report on Deinstitutionalization: Part 2

“Two Key Truths….”

In its report on Deinstitutionalization, the National Council on Disability states that "two key truths” emerge as the underpinnings for the Americans with Disabilities Act, the 1999 Olmstead Supreme Court decision, and for the rationale to close institutions:

1. People with ID/DD [Intellectual and Developmental Disabilities] have a legal right to live in the community and to receive necessary services and supports. 
2. Life in the community provides opportunities for dignity, freedom, choice, and a sense of belonging that are not possible in an institutional environment.

The first “truth” is only half true. 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.

In dismissing the idea that anyone needs an institutional placement, the NCD report (page 56) says that, “Some of those who oppose institutional closure claim that some people with ID/DD are so severely disabled that they cannot handle or benefit from community living and that institutions are the most integrated setting appropriate to their needs.” The whole truth is that those who oppose institutional closure include the Supreme Court Justices who stated in the Olmstead decision:

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

And

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

The second “truth”, that opportunities for dignity, freedom, choice, and a sense of belonging are not possible in an institutional environment, is an assertion that cannot be proved or disproved. It is based on the subjective experience of a wide range of individuals, many of whom are unable to comprehend such abstractions or express their opinion about them.

The underpinnings of the NCD interpretation of the Americans with Disabilities Act and the Olmstead decision are fragile to non-existent as is their rationale for wanting to close all institutions.

NCD Report on Deinstitutionalization: Part 1

From the NCD Web site: The National Council on Disability (NCD) is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees, an Executive Director appointed by the Chairman, and twelve, full-time professional staff.

The National Council on Disability issued a report in October 2012 called "Deinstitutionalization: Unfinished Business". The report is a companion paper to an NCD Deinstitutionalization Toolkit designed to provide a how-to manual for all those interested in institutional closures.

What's wrong with this picture? The National Council on Disability is a federally funded agency that is using federal money to mount a campaign to eliminate another federal program that NCD members don't like. 

Intermediate Care Facilities for people with developmental disabilities (ICF/DD) are funded and regulated by Medicaid. They are considered to be institutions under Medicaid law, along with nursing homes, mental hospitals, and other hospital settings. Some ICFs are larger facilities, but they may be as small as 4-bed state-operated group  homes. They house some of the most severely disabled adults, including people who are medically fragile or have behaviors that make them very difficult to care for in community settings.  ICFs/DD come with an array of services that are often not routinely available elsewhere (for instance, nursing services, dental care, and other specialities). Funding covers total care and is not fragmented the way it is in most community settings.

Residents of institutions have protections against abuse, neglect, and exploitation as well as the right to continue to receive institutional care, even if it conflicts with the ideology of advocacy organizations that don't want them to have this choice.

Although the NCD report emphasizes closing larger facilities, it arbitrarily (and without any specific authority to do so) redefines the word "institution" to include any setting that is "a facility of four or more people who did not choose to live together"(emphasis added). It appears the NCD is laying the groundwork for the elimination of a broad spectrum of living situations currently available to the DD population.

By calling for the closure of all larger facilities, the NCD misinforms the public on the intent of the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision with regard to institutional care for people with severe disabilities. It places at risk people who are the most vulnerable and difficult to care for. 

More Information:

Link to the NCD report.

My comments on the NCD report.

Comments from VOR, a national organization that supports a full array of residential and service options for people with ID/DD.

Comments from a Massachusetts blog, "The National Council on Disability can’t be serious"

Send comments to the National Council on Disabilities at PublicComment@ncd.gov

Because the NCD is a federal agency with oversight by the U.S. Congress, send copies of you comments to President Obama, your U.S. Senators (Carl Levin and Debbie Stabenow in Michigan) and your U.S. Representative (find here)

Planned community for adults with DD in Jacksonville, Florida

An article in The Florida Times-Union (jacksonville.com) reports on a project by The ARC of Jacksonville to build a 32-acre community for people with developmental disabilities:

 "The Hodges Community would include independent and semi-independent living, as well as recreational and transportation opportunities and a community center. It is set to break ground in 2013 and would take five to 10 years to build."

The land was donated by a group of families in 1969 with the stipulation that it go to help people with developmental disabilities.

The article also says that, "Plans for the community will include different types of housing, including condominiums, apartments and houses and a few small group homes. Families will be able to choose from a 'menu' of options depending on the person's need." The Jacksonville ARC also contemplates having facilities such as soccer fields for use by the general public  to encourage interaction with residents.

Parents and the ARC of Jacksonville enthusiastically support the plan. Apartment-living has not been successful or possible for many adults with DD and parents hope that the support of a planned community will increase the likelihood of success.

There have been objections to the plan from an organization called Henderson Haven that provides advocacy and community services to people with developmental disabilities. Lee Henderson, executive director of the organization, complains that this is a step backward toward segregation. Full inclusion with supports should be the goal, rather than another form of accepted segregation, as he characterizes the planned community approach.

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Objections have been raised with similar projects in Florida and other states. In my opinion, the objections to housing and services that group people with disabilities together do not hold water. Communal living situations are not necessarily discriminatory and segregating as critics claim, if they are appropriate to the needs of the individual and freely chosen over other options. Even the choice of an institutional option (an Intermediate Care Facility for the Mentally Retarded/Intellectually Disabled - ICF/MR) is supported explicitly by the Supreme Court Olmstead decision. 

The use of the Medicaid Home and Community Based Services waiver that allows states to provide services in the community for people who are otherwise eligible for an ICF/MR, must give the individual the choice of an ICF/MR or have  the written consent of the eligible individual or the person's legal representative to "waive" the institutional option.

The idea that all people with developmental disabilities can be successfully served using community resources in community settings is at best unproven and at worst demonstrably false. Abuse, neglect, and exploitation can happen in any setting, not because of the size of the setting or how it is organized, but because people with developmental disabilities are especially vulnerable to abuse, neglect, and exploitation. That mistreatment, criminal or otherwise, occurs in community settings is documented in grim detail here.

In Florida, there is a waiting list of around 20,000 people with DD who go without services. According to the Web site Left Behind in Florida, the waiting list makes up 40% of all families who have a family member with DD who is eligible for assistance.

A planned community is one more option from which families may choose and should not be seen as competition to fully inclusive settings that many people can benefit from. Projects that originate with the individuals and families who need services and garner support from a wide variety of community organizations are the most likely to succeed, the most likely to use resources wisely, and the most likely to be accepted by the community at large. Here is an example. 

There is no shortage of ideas for improving the lives of people with developmental disabilities, but advocacy groups that deliberately narrow the choices based on their fervent belief in an unproven ideology are an impediment to a system that can truly meet the needs of the full range of people with DD, especially those who are either not served at all or inadequately served by our current system.

Autism groups clash over National Council on Disability nominee

President Obama nominated eight people to serve on the National Council on Disability. All but one have been confirmed by the U.S. Senate. Ari Ne'eman, a 22-year old man with Asperger's Syndrome, has stirred up enough controversy that his appointment has been blocked by one or more Senators.

Ne'eman is the President of the Autistic Self Advocacy Network (ASAN) based in New Jersey. He is known for his views on neurodiversity, the idea that people with autism and other disabilities represent diversity in the broad spectrum of human behavior and thought. Attempts to treat and cure them, he believes, are not only unnecessary, but may lead to their eugenic elimination. He emphasizes working toward acceptance, integration, and enforcement of the rights of people with disabilities. Ne'eman and ASAN believe that funds spent on treatment and cures for autism should be diverted to the goals that ASAN promotes.

Other autism groups, such as Cure Autism Now and the Autism Action Coalition, object to Ne'eman's opposition to autism research. And who can blame them? After all, research into conditions such as juvenile diabetes and a variety of mental illnesses, has increased understanding of the causes for these conditions and has improved treatments by reducing symptoms and making them more tolerable. Research has not resulted in the elimination of people with these conditions as Ne'eman fears for people with autism, and it has certainly brought cures closer to reality. Ethical questions about what we do with the results of research are always present and research into autism is no different.

Ne'eman's views on neurodiversity and autism research and the fact that he is a self-proclaimed advocate for all people with autism should cause families of people with more severe forms of the condition to doubt his ability to adequately represent their family members. Everyone on the Board of Directors of ASAN, the organization that Ne'eman heads, has high functioning autism or Asperger's Syndrome along with multiple academic degrees and accomplishments hopelessly unattainable by people on the low-functioning end of the autism spectrum. And it turns out that ASAN's promotion of civil rights for people with disabilities is highly selective.

In New Jersey, legislation, which ASAN supports, has been proposed to close most of the developmental centers (Intermediate Care Facilities for the Mentally Retarded - ICF/MR) and move the residents to community placements. Advocates whose family members live in these facilities have responded to surveys asking if they want their relatives to move. 96% of those who responded (61% of those solicited responded) say they do not want their family members moved. Their family members mostly have severe and profound mental retardation and many of them are at the far end of the autism spectrum from ASAN's Board of Directors.

What ASAN and many other advocacy groups will tell you is that the U.S. Supreme Court Olmstead decision supports the closure of institutions everywhere and that New Jersey is merely doing what it has been required to do since 1999. What they will not tell you is that the Supreme Court in Olmstead specifically said that its intent was not to force people out of institutions:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).

Olmstead sets up criteria for evaluating a resident's need for community care which includes the condition that the individual (or his or her guardian), does not oppose the transfer from institutional care. Ne'eman, ASAN, and many other advocacy groups have been willing to ignore the rights of residents of ICFs/MR to promote their own ideology opposing the existence of these facilities. The bumper-sticker slogan, "Nothing about us, without us", apparently does not apply to the residents of these facilities, their families, or anyone else who needs the specialized services and placements that these groups oppose.

The idea that Ari Ne'eman is not autistic enough to serve on the National Council on Disability is beside the point. I'm sure he has valuable insights into the treatment of people with Asperger's Syndrome and high-functioning autism, but he does not represent all people with autism any more than I represent all parents whose children have cerebral palsy. The self advocacy movement has ironically allowed self advocates such as Ari Ne'eman to substitute their group judgment for that of disabled individuals, a practice just as bad as allowing doctors, government, insurance companys, or schools to make unilateral decisions about people's lives without ever needing to include them in the decision making or respect the differences in their needs and choices.

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For more information on this controversy, see:

• Erasing Autism? from Newsweek, May 16, 2009
• Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, from the NY Times, March 27, 2010
• See numerous interviews with Ari Ne'eman on YouTube.com
• Life on the other end of the autism spectrum: Planet Autism from Salon.com, September 27, 2003
• Letter to President Obama from groups opposing Ne'eman's appointment
• VOR Olmstead Resources
• New Jersey Choice press conference video of Robin Sims, parent of NJ ICF/MR resident and President of VOR: introduction and extended remarks

More on H.R. 1255 ... pro and con

I received a comment from a reader who completely disagrees with my post about HR 1255. H.R 1255 is a proposed bill that allows residents of Intermediate Care Facilities and their legal representatives to opt out of class action lawsuits that could result in the closure or downsizing of the facilities where they live. I have seen many of these arguments before and they still don't hold up under scrutiny:

[Click here to see the full comment. Excerpts from the comment are in red.]

"Having a full range of appropriate remedies, including the use of a class action, has been a keystone to protecting the civil and legal rights of individuals with developmental disabilities in all facets of their lives, including community integration. The Developmental Disabilities Act of 2000 reaffirmed the authority of the Protection and Advocacy systems to use any and all legal remedies appropriate to ensure the protection of individuals with developmental disabilities, including class actions."

H.R. 1255 does not exclude the use of class action lawsuits by Protection & Advocacy. HR 1255 applies only to federally-funded attorneys before a lawsuit is filed and only to facilities that are certified as Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) and funded by the federal government.

Protection & Advocacy may proceed with a class action on behalf of those who consent to being represented, after all residents are given a time-limited option to not participate. It does make it less likely, however, that a class action would proceed, if most of the residents of a facility and their legal representatives oppose closure and support the availability of services provided in that setting. It might also avoid some of the results of deinstitutionalization that have occurred in the past - increased deaths, abuse, and neglect in community settings of the extremely vulnerable citizens who have been moved from these facilities.

"...current Federal Rules of Civil Procedure provide guardians and family members with a number of protections, or 'voice', including appropriate notice, class certification requirements, the right to intervene, and a fairness hearing on the final outcome..."

According to VOR:

...P&A has done (only) what is minimally required by law with regard to notice to residents and their legal guardians. Rule 23 does not require notice in class actions that seek injunctive relief, including class actions against ICFs/MR, in advance of or at the time of the filing of the suit. It requires notice to the class members only at the time of a settlement. These class action lawsuits also do not allow for class members to opt out.

Intervention is not an adequate option for legal guardians to the right to opt out. Intervention is not a matter of right and even when families discover in time that a suit is being brought and find the resources to seek intervention (a considerable burden), the request may be denied by the court (often on the grounds that the state is representing their interests). In addition, intervenors do not have the same rights as parties.

"A regrettable part of the history of people with developmental disabilities, particularly those with severe cognitive or intellectual disabilities, is that all too often the public and private systems designed to serve them have not served them well – even engaging in abusive and neglectful treatment of individuals. At the same time, families, guardians or representatives remain unaware of the situation, often relying on the abusers themselves to assure them that all is well."

I agree that often the public and private systems designed to serve people with developmental disabilities do not serve them well. This includes the system that supports federally-funded advocates who claim to represent people with developmental disabilities, regardless of whether the advocates know anything about them personally or have ever met them. Families are the first line of defense in protecting their family members against neglect, abuse, and poor quality services, regardless of where their disabled family members live. It takes a unique blend of arrogance and ignorance to dismiss the relatives and guardians of people with developmental disabilities as gullible fools. To presume that federally-funded attorneys are better equipped to determine what is best for our family members is dangerous and insulting.

"The glaring example that exposed the horrendous abuse and neglect of people with developmental disabilities in institutional settings nationwide was the 1972 expose of the Willowbrook institution in New York. However, such offenses have continued to occur today, and most often in large and inappropriate institutional settings far from the eyes of the community. In March in Texas, it was discovered that staff that had been hired to care for the residents had been forcing them into “fight club” style battles."

The abuse at Willowbrook took place 37 years ago, and as the commenter notes, there have been a lot of changes since then. One of the changes is that the federally-funded facilities, ICFs/MR, are more regulated and monitored than most group homes and other living arrangements in "community" settings. Better regulation and monitoring does not in itself guarantee better care. People with severe and profound mental retardation and severe behavior problems are vulnerable to abuse, neglect, and exploitation, not because of where they live, but because of their vulnerability. Preventing abuse, neglect, and exploitation takes vigilance by families, care providers, and public agencies as well as policies that allow a rapid response and resolution to these incidents.

No reasonable or compassionate person could condone the exploitation of people with disabilities for the amusement of their caretakers, as appears to have happened in Texas, any more than one should condone some of the horrific incidents in Michigan's community group homes, documented on the Adult Foster Care licensing website. But to advocate for eliminating any option that people with developmental disabilities rely on for their safety and security and for services appropriate to their needs, is a disservice to the people we claim to want to protect and advocate for.

"Enactment of legislation such as H.R. 1255 will jeopardize the well-being of thousands of individuals with disabilities by curtailing the ability to protect these individuals from systemic problems causing abuse and neglect, such as insufficient staff and lack of staff oversight in the Texas “fight club” example. This bill restricts the civil and human rights of individuals with developmental disabilities."

Insufficient staff and a lack of oversight is a significant problem for people with developmental disabilities whether they live in community settings or in facilities, but opposition to H.R. 1255 does nothing to alleviate the problem.

H.R.1255 is fully consistent with disability policy: the Developmental Disabilities Act of 2000 says that "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..."; the Supreme Court Olmstead decision states that there is "no federal requirement that community-based treatment be imposed on patients who do not desire it...". To say that it will jeopardize the well-being of thousands of people with disabilities is over-blown and deceptive hyperbole.

HR 1255 protects rights of residents of facilities to opt out of participation in class action lawsuits

Most people would be surprised to hear that a federally-funded organization, such as Protection and Advocacy, may file a class action lawsuit to close down or downsize a facility for people with developmental disabilities without notifying the residents or their families that a lawsuit has been filed or asking them whether they wish to participate. With bi-partisan support, U.S. Representative Barney Frank has reintroduced a bill, HR 1255, that allows residents of Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) and their legal representatives to opt out of class action lawsuits that could result in residents being moved against their wishes.

VOR (Voice of the Retarded) explains why this bill is desperately needed:

...Twenty-eight federally-funded class action lawsuits have been filed, resulting in the closure of at least 15 ICFs/MR in 9 states, involving thousands of individuals with developmental disabilities. Federally-funded attorney groups are most often motivated by a bias against the ICFs/MR option when filing these lawsuits. Since 1996, every federally-funded class action has been for the primary purpose of removing residents from their ICF/MR home ('community integration'); the condition of care at the targeted ICFs/MR was not at issue in any of these cases. An added offense is the fact that most of lawsuits filed against U.S. Department of Health and Human Services (HHS)-funded ICFs/MR are filed by HHS-funded Protection and Advocacy (P&A) agencies, making these cases, in effect, HHS v. HHS, an absurd use of scarce federal dollars.

Federal law (see e.g., the DD Act) embraces the policy that individuals and their families/guardians are the “primary decisionmakers” regarding the services and supports received. H.R. 1255 would help ensure that this promise is real for ICF/MR residents and their legal guardians who find themselves caught up in a lawsuit they do not support, being represented by attorneys who do not even consult them.

HR 1255 requires that the federally funded entity (usually P & A) notify an ICF/MR 90 days before filing a class action lawsuit against the facility. The facility then notifies residents and their legal representatives (usually close family members) and gives them the opportunity to elect not to have the lawsuit apply to them. P&A or other organizations may still file the lawsuit on behalf of those who wish to participate. The bill does not in any way interfere with the organization's ability to file lawsuits on behalf of individuals in the facilities or to otherwise protect their rights. Neither does it affect the right of other developmentally disabled citizens to appropriate community services.

Whether you have a family member living in an Intermediate Care Facility or not is beside the point. If federally funded lawyers ever decided to pursue a lawsuit on behalf of your family member, would you want to be notified? Would you want to have the right to decide whether or not these attorneys represent your family member or whether the lawsuit is needed? HR 1255 leaves these decisions to the people affected by the lawsuit and their families and guardians, not to federally-funded attorneys.

Many influential advocacy groups support the closure of all facilities and all other "disability-only" programs designed specifically to meet the needs of people with developmental disabilities. They have sent out alerts urging you to tell your Representatives to oppose this bill on the grounds that it will harm the efforts of parents and advocates to work for community services and supports needed to live in the community. I'm surprised that they provide links to the bill itself, because anyone who reads it will see that it has nothing to do with this. I guess they don't think you will bother to read it. I hope you will. And while you're at it urge your Representative to co-sponsor and support the bill.