VOR Comments on proposed rules on Discrimination in Section 504 of Rehabilitation Act of 1973

The Department of Health and Human Services has issued a proposed rule "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", intended to update, clarify, and strengthen the implementing regulation for Section 504 of the Rehabilitation Act of 1973. 

VOR contends that the policies of HHS, notably the actions taken over the years by the Administration for Community Living and several of the organizations they subsidize (including State P&As [a.k.a. Disability Rights] and DD Councils, University Centers for Excellence, and the National Disability Rights Network) have regularly committed acts of discrimination against those with the most severe and profound intellectual and developmental disabilities and their families.

Below is the text of the letter to HHS:

To: U.S. Department of Health and Human Services, Office for Civil Rights

Proposed new implementing regulations on Section 504 of the Rehabilitation Act of 1973: Non-discrimination on the basis of disability in Health and Human Services programs or activities.

VOR – A Voice of Reason advocates for a full continuum of care and a full array of residential services and employment opportunities for all people with intellectual and developmental disabilities and/or autism. We would like to remind HHS of the broad diversity that characterizes the individuals who make up this population, from those who need some assistance to function in society to those who cannot survive without 24 hour around-the-clock assistance.

For the past 25 years, HHS has pursued “inclusion for all” policies that VOR believes have left behind the most disadvantaged members of this community. Before you take another step to dismantle more of these programs, we would urge you to review the purposes of the ADA, the Olmstead decision and the real-world effects on the most vulnerable population that we believe has been demonstrably hurt and even died as a result of these policies. [Some disability organizations call for sweeping changes to close all residential programs and services that provide care in congregate settings serving more that 3 or 4 people with disabilities.] We urge you not to just count the number of large facilities closed and people moved into the community, but to assess whether their needs are being met, whether there are sufficient well-trained staff and the overall the quality of their lives, including the frequency of abuse and neglect and the mortality rates relative to their former homes.

The ADA recognized the harm that our society had done by institutionalizing people who were “different” and called for giving them opportunities to participate in mainstream activities. Olmstead properly implemented that policy by permitting two individuals who wished to leave an institution and move into a less restrictive environment to do so, recognizing that institutional care was, by definition, segregated care. At the same time, Justice Ginsburg recognized that the I/DD population varied widely and that, for some people, an institution was the least restrictive environment.

Since enactment of the ADA, government policy has helped thousands of people who were capable of living and prospering in the broader community to leave institutions and lead a more productive and filling life. The DD System overseen by HHS has played a major role s in helping people who seek care in less restrictive environments to transition into Home- and Community-Based Services (HCBS) settings or receive more at-home or own-home supplemental services. We applaud the success of these programs. At the same time, we have been concerned that this movement has ignored the reality that Justice Ginsburg recognized that some people can benefit most from institutional care and that ideological blinders have eroded another key component of the DD System – intermediate care facilities for people with intellectual disabilities (ICF or ICF/IID).

Part of the premise for pursuing the closure of ICFs has been the usually unspoken view that parents who choose ICF care for their loved ones are not acting in their best interest. Nothing could be farther from the truth. Being the parent or sibling of a child with severe or profound intellectual disability or autism presents a lifetime of tremendous challenges. Aside from the daily challenges posed by the child her/himself, one of the most difficult challenges is navigating the DD System. Parents and guardians try to make informed choices from a limited set of imperfect options. Most families’ first choice is to have their child live at home. As the child ages and new challenges emerge, the parents have to re-assess those options, often choosing a small privately operated group home. If and when the group home system fails to meet their child’s needs, they usually seek a higher level of care in a larger congregate setting. Unfortunately, our system usually makes this difficult decision even more difficult to realize. Federal and state policies favoring HCBS care over the years have reduced the number of available beds in ICFs and created a two-tiered system, favoring HCBS funding and decreasing funding for the ICF system. While many proponents of HCBS’ inclusionary policies see this as progress, the families that rely on ICF services feel they have been victims of discrimination by their own community and by the very systems that have been put in place to serve them.

ICFs are not for everyone. Most people do benefit from some form of HCBS service. But not everyone. Larger congregate care facilities offer an economy of scale, allowing them to have 24/7 nursing, doctors on campus Monday – Friday and on call nights and weekends, dental clinics, psychiatric services and behavioral specialists, physical therapy, music therapy, swimming, and other services and amenities, most of which cannot be offered in a small group home. ICFs are more highly regulated by CMS and certification is far tougher than it is for HCBS services. Also, ICFs are required to offer active treatment, which may or may not be offered in group homes, but is not required. For people whose existential needs exceed their desire for acceptance by the non-disabled community, ICFs are essential.

Section 504 prohibits discriminatory acts in health care and human services, including denying qualified individuals the opportunity to participate in or benefit from federally funded programs and services. ICFs are federally approved, federally funded residential facilities. Many states have closed admission to these facilities, or ceased to create new opportunities to receive care in these facilities in favor of moving individuals to HCBS services. We contend that Section 504 must protect the right to care in ICF settings as well as in HCBS settings.

This discrimination has become accepted by all but those who need this level of care. The governors of several states have closed ICFs based on the biases of those who portray the ID/A population as a monolithic group that always benefits from community living. Presidential administrations have endorsed this ideology. The Department of Justice, too, has brought lawsuits, closing facilities for not meeting these arbitrary standards.

The bias in favor of HCBS care was memorialized on April 18, 2012, when the Administration on Developmental Disabilities and other agencies were combined into the Administration for Community Living (ACL). Over the past decade, ACL has pursued an ideology of “everyone does better in the community” that ignores the fact that many of those with severe and profound I/DD and autism cannot. As a result of this directive, ACL has funneled millions of dollars into state DD Councils and state Protection and Advocacy agencies (P&A). These agencies have targeted ICFs, launching far more on-site investigations in these facilities than in group home environments, and using federal funds to initiate class action suits aimed at closing ICFs (Illinois, Ligas v. Maram, and Ohio, Ball v. Kasich to name just two. In both of these cases, the court found for the families defending ICF care, but at a huge personal cost to the families involved).

In addition to funding the National Association of Councils on Developmental Disabilities (NACDD) and the National Disability Rights Network (NDRN), the ACL provides funding for the Association of University Centers on Disabilities (AUCD). The AUCD conducts studies on matters affecting people with I/DD and autism, but usually limits the topics of their studies to those which will point to successful outcomes of programs initiated by the ACL. They have not conducted studies on mortality rates of people who have been forced out of their ICF homes of thirty or forty years when state governors have acted, either independently or at the direction of the state P&A or DOJ lawsuits, to close these facilities. They have not attempted to document the outcomes of people who have been forced out of sheltered workshops and 14(c) employment opportunities and wind up in day programs with no work, no pay, and no options, and forced into an even more segregated community with a cohort of more severely disabled individuals.

Discrimination against the neediest people with ID/A also applies to employment opportunities. Employment facilities licensed under provisions of Section 14(c) of the Fair Labor Standards Act, aka sheltered workshops, have been under attack by many of the same groups that advocate for the closure of ICFs. Without these programs, most of those who participate in them would be left without daytime activities as the reality is that they cannot perform to a level that warrants paying them the minimum wage. Ideological dogma cannot change reality. Despite the fact that these are voluntary programs, and the fact that they are enthusiastically approved by a vast majority of those who participate in them (97%), non-participants with high acuity, non-intellectual disabilities, federal and state agencies, and federal and state legislators have been calling for these programs to be phased out and eliminated. Furthermore, we would contend that the states that have ended their 14(c) programs have already committed discriminatory acts against people with intellectual disabilities and autism, by denying qualified individuals the opportunity to participate in or benefit from federally funded programs, services, or other benefits. If we are indeed to rectify this discrimination, should we not insist that those states re-open access to 14(c) programs?

The normalization of these discriminatory policies by HHS also gives license to the Congress to enact legislation that further discriminates against the neediest component of the ID/A population. The continuing enactment of legislation that either increases funding for HCBS services only or establishes a favorable funding formula for those services instead of ICF services is yet another way that HHS is complicit in undermining services for those who need them the most. Advocating and supporting these discriminatory policies gut a federal program that remains on the books and provides valuable and often essential service. At the same time, it has not met its practical goals – to provide more money and better services for people who reside in HCBS facilities. It is past time for HHS to return to the basics of the ADA and Olmstead – to insure that individuals with ID can choose where they wish to live and to advocate for what is best for the individuals, as determined by them and their families and guardians, not by lawyers and professional advocates.

The Supreme Court’s 1999 decision in Olmstead is often cited as a mandate for inclusion by self-advocates, well-endowed advocacy organizations, and government agencies. As indicated above, that is not what the decision says. Olmstead protects choice in its three-prong test and specifically acknowledges the need for “institutional” care, i.e. intermediate care facilities, in some circumstances. Justice Ruth Bader Ginsberg cited an amicus from VOR in her decision, stating, “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.” [1]
The Court was very clear that Olmstead was not to be viewed as a one-dimensional “inclusion mandate”, recognizing the need for States to maintain a range of facilities for the diverse needs of persons with developmental disabilities:

"Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." [2]

“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." [3]

"[U]nder Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities [1] when the State's treatment professionals determine that such placement is appropriate, [2] the affected persons do not oppose such treatment, and [3] the placement can be reasonably accommodated , taking into account the resources available to the State and the needs of others with mental disabilities." [4]

"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. . . Some individuals . . . may need institutional care from time to time 'to stabilize acute psychiatric symptoms’. . . For other individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available." [5]

To be clear, we understand that we are asking the very agencies that created these policies and discriminated against those with the most severe and profound levels of I/DD and autism to cease these discriminatory practices. But, before you move further down this path, we ask you to look at our families and our loved ones through our eyes for a few moments:

Having a child with a severe or profound intellectual disability or autism involves a lifetime of extremely difficult choices. Our families ask for your help and support in making the best choices, from a full range of high-quality options, not from a rigid ideology that does not comport with reality. We ask for this support from those in government who oversee the DD system and provide those services, and from the community of people with I/DD and autism and their families, who should be the first to empathize with our challenges and provide emotional support. It’s time we end the discrimination against those with the most severe intellectual and developmental disabilities and autism. These ideals should be at the heart of any re-assessment of Section 504.

---------------------------------
[1] Olmstead v. L.C., 527 U.S. 581, at 605
[2] ibid, at 597
[3] ibid, at 601-602
[4] ibid, at 607
[5] ibid, at 604-605

Message from VOR to Congress: "Build Back Better", but don't ignore the needs of our family members with the most severe intellectual and developmental disabilities

VOR (a Voice Of Reason) held its annual Legislative Initiative last week, not in-person in Washington, D.C. as it is usually done, but virtually with Zoom meetings, emails, and good old-fashioned telephone calls. The message was clear and easy to understand: the ideology that "everyone does better in the community" is not universally supported within the disability community and it is not the reality that VOR families experience when programs and residential options are undermined or eliminated in the name of integration and inclusion.

The following is from the VOR Weekly News Update for May 21, 2021.

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

Why Do Good For Some? Why Not Everyone?

VOR's Legislative Initiative has been in full swing over the last week, and our meetings with people in congressional offices are likely to continue through next week and beyond. One theme that has come up over and over has been the idea that the Administration and members of Congress plan to make major changes, many would say long overdue changes, to the system that deals with services, supports, and employment opportunities for people with I/DD, and that we don't want our loved ones, and our choices for their care, to be swept aside in this effort to do good things.

We worry that the effort to rebuild the system is aimed at only supporting one ideology, the "everybody does better in the community" ideal, or the notion that HCBS [Home and Community-Based Services] services provide a level of care equal to that of Intermediate Care Facilities (ICFs). We know, from our own experience, that neither of these statements are true.

[ICFs/IID or Intermediate Care Facilities for Individuals with Intellectual Disabilities are federally-licensed and Medicaid-funded residential facilities, some as small as 4-bed group homes up to much larger settings. They serve people with the most severe degrees of I/DD and autism, and their families and guardians. These residential facilities offer a full range of services and 24-hour-around-the-clock support to meet the residents considerable needs.]

So we ask that our choices be supported in this effort to do good. The Biden Administration speaks about building back better. We'd like to take it one step further: Let's Build It Right, this time. Stop pitting the interests of one group of people with I/DD against the interests of another. Stop talking about a non-existent "institutional bias" while you are closing institutions and increasing funding for HCBS.

We support the idea of taking people off of waiting lists. But give them CHOICE. Support all options, and give people the opportunity to use whichever option best suits their needs, at this point in their lives. And if and when their needs change, let them then choose an appropriate option to meet their needs at that point in their lives. Just like our society does with non-disabled individuals.

The first two articles in this week's newsletter exemplify what we encounter daily. The Biden Administration, through the American Rescue Plan as passed by Congress, is giving states flexibility to expand disability services in the wake of the COVID-19 pandemic. But the money is only supposed to go to HCBS services. People in ICFs got COVID, too. The staff of ICFs got COVID, too. Why is the Federal Government only giving extra money to the recipients of HCBS services and their staff?

Again, we see that 500 CEO's have committed to programs that advance inclusion for people with disabilities. That is certainly laudable. But why are people still trying to shut down opportunities that people with I/DD currently enjoy, and thrive under, that do not fit the criteria of "integrated employment"?

Why are there no companies trying to create opportunities for people who have skills and the desire to work, but who are, for one reason or another, not candidates for succeeding in a competitive, integrated environment?

We ask that all people be included in the solutions, and that all options be funded. If there is going to be a $400 Billion increase in spending on disability services, shouldn't it be spent on the people who receive the services, and not divided according to the different ideologies or separate funding streams that have turned our systems into a them vs us system?

Let's build it right this time. Let's provide funds to meet the needs and aspirations of all individuals with I/DD, and let's make sure we fund all of the options that meet the needs of this diverse community.

Pennsylvania legislators propose a moratorium on the closing of two state facilities for people with intellectual disabilities

Residents and families of two Pennsylvania state-operated ICFs/IID will get a reprieve from closure. See blog post on the decision to close White Haven and Polk Centers.

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

House Co-Sponsorship Memoranda

House of Representatives

Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted:	September 25, 2019 11:22 AM
From:	Representative Gerald J. Mullery and Rep. Tarah Toohil, Rep. R. Lee James
To:	All House members
Subject:	Moratorium on Closing of White Haven and Polk State Centers

Fear of the unknown can be deeply debilitating and a feeling with which we are all familiar. Today, hundreds of families across this Commonwealth are grappling with the fear of their loved one being forced from the place they have called home for a large portion of their life. For others, they are struggling to find an alternative facility that will match the immense needs of their family member before time runs out. We support the integration of those living with intellectual disabilities into the community where they can thrive and become more independent. But for the residents of the White Haven and Polk State Centers, that is simply not a compassionate option. Many of these individuals require 24/7 attention and extensive medical care morning and night. Closing these facilities forces families to make excruciatingly difficult emotional and financial decisions for individuals whom we have vowed to protect. For some of these residents, the closure and forced exit could be incredibly damaging and traumatic. Before we uproot the lives of these vulnerable Pennsylvanians, we must truly understand the impact the decision may have on the remaining time they have and make readily available the resources to seamlessly continue care. That is why we are taking swift action to introduce legislation that would enact a moratorium on the closing of these facilities until we are better prepared as a state to respond to the impending result. Please join us in supporting this legislation and this critical decision to buy more time for the residents of White Haven and Polk and their families.

---

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

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

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

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

Michigan’s mental health system is failing many with severe autism

I have two adult sons with profound intellectual and developmental disabilities (IDD) as well as friends who have severely autistic family members. What these disabled populations have in common is that they are difficult and expensive to serve, no matter where they live. Finding appropriate services and residential settings is a relentless and frustrating task for most families, especially when choices are deliberately limited to encourage a one-size-fits-all mentality that promotes the idea that everyone can be fully integrated into "the community".

These stories about severely autistic children and adults have many parallels in the world of severe and profound IDD.

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

“Falling through the cracks” is a phrase that is frequently used to describe what happens to people with severe autism when they move from school to adult life without the safety net of services provided by the educational system. This also describes what happens to autistic children, many of whom have intellectual and other developmental disabilities, whose problems are too much for the educational system to handle. They are shunted into a world of psychiatric services that were never designed or intended to help people with IDD. 

Below are summaries and excerpts from two stories featured on Stateside, a Michigan Radio show that covers state and local issues, including struggles with the Michigan Mental Health system. To get the full emotional impact of these stories, listen to the interviews with family members and others on the Stateside Website. 

“They say their son needs to be in a psychiatric hospital. He went to jail instead.” 

By SARAH CWIEK, 2/18/19.

“A danger to themselves or others. That’s the threshold set by Michigan law to put someone in a psychiatric hospital….”

Damiean Odisho has severe autism and is described by his father Douglas as “…a big guy with the mind of a child.” Damiean’s parents have had to call the police to protect themselves from outbursts by Damiean that ended up in physical assault or the threat of physical assault. Damiean has autism and “a host of other psychiatric and special needs diagnoses…He’s on ten different medications.”

The police department in Warren, MI, where the Odishos live, know that Damiean is autistic and has issues with aggression. In the past, under similar circumstances, they have transported him to an emergency room while his mother Malinda petitions Macomb County Community Mental Health to admit him for psychiatric hospitalization. This time, however, the police transported him to the county Juvenile Justice Center, where Damiean was booked and charged with resisting arrest. He was obviously not capable of understanding his offense or controlling his overwhelming impulses, so the court released him to his parents and instructed them to return to the emergency room where they should again request psychiatric hospitalization. That request was inevitably turned down as it had been in the past, at which point the cycle begins again.

Quoted in the article is Sarah Mohluddin, the clinical director of an autism program at the University of Michigan: “I think it’s important for people to understand just how common aggression is in autism…But children who have these concerns with aggression have limited access to outpatient providers, and even more limited access to inpatient hospitalization and psychiatric beds. And there are very few psychiatric emergency centers that really know what to do in terms of assessing these children when they are in a psychiatric emergency.”

David Pankotai, the CEO of Macomb County Community Mental Health, had this to say: “Sometimes a hospital might look at a child who’s on the autism spectrum, and think that the issues are more related to environment and behavior as opposed to a psychiatric condition.”

The experts and the people responsible for providing services seem to admit that we have a lousy system of taking care of children and adults with severe autism who may injure themselves or others; they lament that sometimes there is nothing they can do about it.

Damiean turned 17 this year and his parents biggest fear is that he will end up the adult prison system, like so many adults with mental illness. His mother is left with this thought: “He’s going to have this disability for life. And we just work around it the best that we can.”

********************* 

“To find help for her disabled daughter, Michigan mother had to leave the state”
By STATESIDE STAFF, 2/19/19

This story is about a 19-year-old young woman with severe autism who has dangerously aggressive and self-injurious behaviors. In this case, the mother found a program that worked for her daughter, but it was in another state and now she is faced with bringing her adult daughter back with no prospects of finding a suitable residential setting for her in Michigan.

From the article:

Jackie [the daughter] has a severe form of autism.

“…She received a state Medicaid waiver for in-home help when she was around four years old. But Sibley [her mother] says the family struggled to find the long-term care her daughter so desperately needed.

“‘It’s very hard to find staff, especially when there are challenging behaviors involved. Most of the people that we had helping us would quit,’ Sibley said.

“After exhausting her options in Michigan, Sibley found the Kennedy Krieger Center in Maryland, a residential facility that specializes in treating severely autistic children. After a year on the waiting list, Jackie was admitted in March 2018. Sibley says that her daughter has received ‘phenomenal’ care there.

“Kennedy Krieger is typically just a three-to-six-month program. Healthcare providers there, knowing there were few options for Jackie back home in Michigan, extended her stay to over a year.” 

That extended stay at Kennedy Krieger with phenomenal care has been costly for Jackie and her family. The family’s private insurance will no longer pay for it and the family must find an alternative in Michigan. To add insult to injury, Michigan now considers Jackie a resident of Maryland and has said that she is no longer eligible for Medicaid in Michigan. That means that she will be denied a Medicaid Waiver that she has qualified for since she was 4 years old until the state agrees to take her back into Michigan’s Medicaid program. No one is paying the bills right now.

Sibley’s advice for Michigan: “Michigan needs to look at having some kind of facility — I think every state does — so that they can house these children that are not just on the spectrum, but severe cases.” 

*********************
Michigan’s obligations to people with developmental disabilities

The excuse that there is nothing appropriate for these children and adults is belied by the experience of numerous families that have found programs that work here and in other states for people with similar disabilities. That there is nothing readily available in Michigan is to some extent caused by decisions the state has made to no longer support a full range of services and residential options for this hard to serve population.

These stories are especially disturbing, because Michigan’s mental health system is obligated, in its agreements with the federal Centers for Medicare and Medicaid Services (CMS), to provide “medically necessary services” to all Medicaid-eligible people with developmental and other disabilities. That includes the social services and supports that allow people to live in community settings as well as the option of an ICF level of care. Most people with severe autism fall into the category of developmental disability and many also have intellectual disabilities.

Most families do not know that under our our state’s system of Medicaid managed care, Michigan does not allow waiting lists for services for people with disabilities who are Medicaid-eligible. But tell that to the families who are desperately struggling to find adequate services for their disabled loved ones, and they will tell you a different story of delay and denial. According to Michigan’s Medicaid Provider Manual, the mental health system “..may not deny services based solely on preset limits of the cost, amount, scope, and duration of services. Instead, determination of the need for services shall be conducted on an individualized basis.” 

In other states, Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are one option for this hard to serve population. These are technically institutions under Medicaid law, but the word “institution” has been used in only a pejorative sense for so long that families react with fear and loathing to the prospect of “institutionalization”. The ARC Michigan, the state’s most influential DD advocacy group, had the goal of closing all institutions for many years. It has also promoted the elimination of all congregate settings (settings serving more that 3 or 4 people with DD together in one place) even while it is evident to most people that community care is grossly underfunded and of some of it of poor quality. The ARC’s Website showed a video on the history of Michigan Institutions that was produced as if it were a horror show with creepy music and newsreels of huge institutions going back as far as 90 years.

The 1980’s brought significant reforms to the system of longterm care for people with IDD, including the introduction of Medicaid waivers for Home and Community-Based Services as a companion and alternative to the highly-regulated ICF program. Our most influential disability advocacy groups nationwide have been working for years to eliminate ICFs/IID, even for very hard to serve populations. In Michigan, they have all but succeeded, although when I have brought this subject up at meetings, I often hear that there are still ICF beds in the state, but they are only whispered about and not mentioned in polite company. At the same time, families desperate for appropriate residential settings in Michigan are left with seeking out other institutional options such as hospitalization in psychiatric facilities or placements in group homes that are often not willing to take on the most severe behavioral problems.

ICFs/IID along with innovative intentional communities, group homes, and other family-initiated projects can provide a safe and non-isolating environment that both protects residents and in some cases gives more freedom to the people living there, than could ever be provided in an apartment in a community unprepared to care for people with severe autism and IDD. 

Here is something to think about: Why is it that so many families report that their children have been helped and accommodated in educational programs, but there is apparently an unwillingness or inability by the adult services system to replicate that success when these same children reach adulthood? 

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

More blogposts and articles on this topic:

From Washington State: Because We Care -- Beyond Inclusion 

A series of Blog posts - "Stuck in the Hospital"

Another perspective from the mother of an autistic daughter in California: 

"Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails "
By EVA LOEFFLER, 2/25/19

“People with ASD and ID are hospitalized at a rate six times higher and will likely have longer psychiatric hospital stays than people without ASD. Many will not receive appropriate treatment that is tailored to their unique needs due to lack of understanding, knowledge, and training by mental health professionals. A recent study found that mental health treatments are challenging due to individuals limited communication skills, unique individual challenges, as well as the mental health field’s tendency for diagnostic overshadowing, which is the assumption to contribute behaviors to the developmental diagnosis, not necessarily the mental health diagnosis.” 

"Joey Jennings' Story"

by Sue Jennings, EP Magazine, December 2017

We Need a Full Continuum of Care for Adults with Severe Autism
By Joan Kelley, 4/25/19

Tom Dwyer's message to the President's Committee for People with Intellectual Disabilities

Hugo Dwyer is the Executive Director of VOR, a "Voice Of Reason speaking out  for people with intellectual and developmental disabilities". He traveled to Washington, D.C. in November to deliver a birthday message about his brother Tom, a resident of Southbury Training School in Connecticut, an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID). This appeared in the Winter 2018 edition of the VOR Voice.

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

Executive Director’s Message: Tom Dwyer Speaks to The President 

My brother Tom turned 62 on November 8th of this year. He lives at the Southbury Training School, a state-operated ICF in Connecticut. STS has been Tom's home for his entire adult life, and I can honestly say that I don't believe Tom would be alive today without the quality care, love, and community that STS has given him.

Tom probably doesn’t know what a birthday is. He is severely developmentally disabled. Tom has autism, bi-polar disorder, Pica, Parkinsonism, and what was once called profound mental retardation. He has one detached retina and his vision is poor. He uses a wheelchair but he can be walked with a gait belt. And Tom is non-verbal.

I did not go to Connecticut to bring him his birthday present that day. Instead, I took a train down to Washington, D. C. to give him his gift. I went to Washington, D. C. to give Tom a voice.

I attended a meeting of the President’s Committee for People with Intellectual Disabilities (PCPID), hosted by the Administration for Community Living (ACL). I addressed the committee on behalf of Tom and on behalf of all of our loved ones with severe/profound intellectual and developmental disabilities. My voice, Tom’s voice, your voice, was the only voice that spoke on behalf of the most severely impacted members of the I/DD Community.

No one told me that the public wasn’t allowed to address the Committee at this meeting. Fortunately, no one had told the first speaker that either. When the Liaison from the Office of Health and Human Services to the Office of the President finished his opening remarks, centered around the committee’s intent to speak about Competitive Integrated Employment, he asked if there were any questions. I put up my hand, and not knowing any better, he picked me.

I introduced myself to the committee, and told them about Tom, that it was his birthday and I was there to speak for him, and for our VOR families with loved ones who need and want services in Intermediate Care Facilities (ICFs). I told them that our families have been marginalized and overlooked for decades, our preferred services closed down or cut back, that admissions to ICF’s have been closed in many states, including at STS. I told them that we were being denied our right to choice, and that as parents and siblings and guardians, we had the right to make these choices. I went on to say that many other individuals with intellectual disabilities are being denied the opportunity to work in center-based employment with specialized wages. The choice of sheltered work environments is being denied by people who see this as detrimental to the wishes of those who seek competitive employment. I told them that our voices have not been heard in their meetings, and that I was there in hopes that the more severely intellectually disabled populations would have a seat at the table at the President’s Committee for People with Intellectual Disabilities.

After I spoke, the committee announced that members of the public were not to be granted the opportunity to speak at this meeting. Except for two women who had been hired as ASL interpreters if needed, I was the only person attending as a member of the public. But I stayed and watched and introduced myself to individual members when on breaks. I made sure the members of the committee were very aware of who I was and who I was there to represent.

The President’s Committee appears to have already set their agenda. It will focus on the less severely impacted members of the community, their hopes for inclusion, for integrated competitive employment, even for attending college. These are all noble, admirable goals. We all want all of these things for all of these individuals and their families. Inclusion is fine, but we want our loved ones to be included, too. A report to the President of the United States about the community of people with intellectual disabilities is not complete if it excludes the most severely intellectually disabled.

I hope that the Committee did hear Tom’s voice that day, and that they will see fit to invite our families to be part of their discussions next year. And I hope that maybe someday, Tom’s voice will be heard by the President himself. Or herself, if it takes that long.

Hugo Dwyer

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

See also, 

"Disability Housing: Institutional Avoidance" by Micaela Connery, The Huffington Post, 12/6/17: "Institutions aren’t a failure of the past, they’re a reality of the present."

Southbury Home and School Association

Meet VOR: A Voice of Reason

This description of VOR, an organization that I have belonged to for over 15 years, was part of the packet of materials passed along to every member of the US House of Representatives and the US Senate in June 2018. Regretfully, I missed this year's VOR conference, but VOR's message is clear: even though we represent a small minority (about 5% of the I/DD population), we support a full range of services and residential options to meet the needs of all people with I/DD. 

"The goals of one group should never be placed at odds with the needs of the other. "

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

Meet VOR:  A Voice of Reason, speaking out for people with Intellectual and Developmental Disabilities

For 35 years, VOR has advocated for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). Our membership is mostly comprised of families of individuals with severe or profound intellectual disabilities, often complicated by significant medical, psychological, or behavioral conditions. Many of our loved ones are non-verbal or non-ambulatory. Many engage in self-injuring behaviors. They often require 24/7 care, provided by well-trained and caring direct support professionals. Our family members constitute a minority within a minority. They represent about 5% of the entire population of individuals with I/DD. The home and community-based settings that work for many people with I/DD often fail to meet the needs of these severely disabled, vulnerable individuals.

To acknowledge the extensive range of needs and aspirations of all members of this diverse population, VOR supports Individual and Family Choice, and a Full Continuum of Care. In order to have choice, there must be a full range of quality options available, tailored to meet the intellectual, psychological, behavioral, and physical needs of this diverse population. One size never fits all. 

We support the goals of those who aspire to integrate into the society around them in their choices of residence, education, and employment. We also support the needs of those who would be endangered in an under-protected environment, who can never integrate fully because they cannot even perform the simplest of daily skills, like brushing their teeth, washing, toileting, or verbalizing their needs, their desires, their agitation, or their anger. The goals of one group should never be placed at odds with the needs of the other. We support all residential options, including the individual’s own home, family home, group homes, intentional communities, and larger congregate settings, such as public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF’s/IID, or ICF’s).

By the same principle, we support a full range of employment opportunities for people with I/DD. We support the drive for integrated, competitive employment and laud the proliferation of programs aimed at helping people with intellectual disabilities achieve their full potential. But we oppose the movement to eliminate center-based employment, sheltered workshops, and the movement to eliminate compensatory wages by eliminating Section 14(c) of the Fair Labor Standards Act. People who cannot compete in the open job market need this opportunity. They enjoy this level of work, the peer environment, and the opportunity to be productive. The movement toward competitive employment for some should not mandate the elimination of programs that work for others. 

There is no singular solution that is appropriate to all individuals with I/DD. Yet, this is the underlying premise of policies promoted by many powerful advocacy groups. This is a dangerous assumption, especially for the most vulnerable... 

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

For more information on VOR, read more of the 2018 conference materials

"Nothing About Us Without Us": An empty slogan for residents of facilities for intellectually disabled

Unfortunately, this is typical of how residents of Intermediate Care Facilities for people with intellectual disabilities (ICF/IID) and their families are treated in discussions about closing these facilities. This is from the VOR email news update of 8/10/18:



The Press and Us

A small online news service in Connecticut ran a series of articles this week, ostensibly about how the state's financial problems affect non-profits that offer a variety of services to people in the CT, and how they need more support from the public, religious groups, and the State. While the 10-article series covered a number of non-profits, the focus of the reporting was limited to one topic.

What this series really amounted to was this year's forum for the opponents of Southbury Training School [a state run ICF/IID]. Last year, they funneled $50,000 through the CT Council on Disabilities and the ARC of CT to pay for a program on Connecticut Public Television wherein they made their claims that everyone does better in the community and that closing all ICFs will magically provide services for people on the waiting list. All of this is opinion dressed up as news, and none of the people involved in this story have ever bothered to visit Southbury Training School or any of the three remaining Regional Centers.

We've heard this all before. We know different. We've seen tens of thousands of beds disappear from ICFs over the last three decades while waiting lists have grown at an even greater rate. We have seen the differences between what is offered at ICFs and at HCBS [Home and Community-Based Services] waiver settings. We know that one size does not fit all and that the needs of the higher functioning members of the IDD population have little in common with the needs of the most severely intellectually disabled.

We are not going to link to these stories this week. Our members have read this before, and we don't want this news outlet to get any more "hits" than they already have. Instead, what we are going to do is remind our readers of how important our contacts with the press are, how much power the press has, and the need to find reporters who are interested in all sides and nuances of the stories they write, and to work with those reporters. It's not a matter of fake news - it's about good, responsible reporting...

U.S. Department of Health and Human Services finds group home residents at risk of serious harm

In January 2018, the U.S. Department of Health and Human Services issued a report with several other agencies "to identify instances in which the State agencies that administer the State Medicaid program did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities who reside in group homes." [page 3 of the Report] The Federal waiver refers to Home and Community Based Services (HCBS) that are provided to people with developmental and intellectual disabilities who live in community settings rather than in institutions such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). Although blanket assertions are often made that living in community settings is superior in every way to living in an ICF/IID, the safety and oversight of community group home settings are
 being questioned in this report. 

The following is a summary of the report with comments from VOR, a national nonprofit organizations that advocates for high quality care and human rights for all people with intellectual and developmental disabilities. Many VOR members have family members who are residents of ICFs/IID or have needs similar to this population.

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

Joint Report from U.S. Department of Health and Human Services’ Office of Inspector General (OIG), Administration for Community Living (ACL), and Office for Civil Rights (OCR): 

[This was published in the 2018 Spring edition of the VOR print newsletter , The Voice.]

In January of 2018. three agencies operated by the U.S. Department of Health and Human Services, acknowledged systemic shortcomings in protecting residents of HCBS waiver group homes from incidents of abuse and neglect. The Office of the Inspector General (OIG) determined that up to 99 percent of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. The report stated, “Group Home beneficiaries are at risk of serious harm. OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries at risk of serious harm. These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.”

The report grew out of investigations into under-reporting of critical incidents by group home providers in Connecticut, Massachusetts, and Maine that had been conducted by the OIG in 2015. The reports found drastic under-reporting of incidents resulting in trips to the emergency room and/or hospitalizations by group home providers. Concurrent with those investigations, the Inspector General also looked into critical incident reporting by ICF’s in NY State. That investigation determined that NY’s ICF’s had an excellent record of reporting incidents, and that no actions or recommendations were necessary.

OIG highlighted under-reporting critical incidents of abuse and neglect in privately operated group homes, including “deaths, physical and sexual assaults, suicide attempts, unplanned hospitalizations, near drowning, missing persons, and serious injuries. Critical incidents requiring a minor level of review generally include suspected verbal or emotional abuse, theft, and property damage. For critical incidents that involve suspected abuse or neglect, the HCBS waiver and State regulations also require mandated reporting.” It found that in the states under study, “the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities.”

The report identified four Compliance Oversight Components that “help ensure that beneficiary health, safety, and civil rights are adequately protected, that provider and service agencies operate under appropriate accountability mechanisms, and that public services are delivered consistent with funding expectations.”
1. Reliable incident management and investigation processes;
2. Audit protocols that ensure compliance with reporting, review, and response requirements;
3. Effective mortality reviews of unexpected deaths
4. Quality assurance mechanisms that ensure the delivery and fiscal integrity of appropriate community-based services.

In conclusion, the three agencies proposed that the Center for Medicare and Medicaid Services (CMS):
1. Encourage States to implement comprehensive compliance oversight systems for group homes, such as the Model Practices, and regularly report their findings to CMS;
2. Form a “SWAT” team to address, in a timely manner, systemic problems in State implementation of and compliance with health and safety oversight systems for group homes
3. Take immediate action in response to serious health and safety findings, for group homes using the authority under 42 CFR § 441.304(g).

Comments: Most families who have signed the HCBS Waiver would have had reasonable expectations that the four oversight components listed above were in place all along. The first three of these components are mandatory licensing requirements of Intermediate Care Facilities. As for the “SWAT” teams, isn’t that the job that has been expected of Protection and Advocacy agencies in each state? If not, then what is expected of them by HHS and CMS? And why do these agencies tell us that our loved ones can receive the same level of care in group homes that they receive in ICF’s, and encourage us to leave the ICF’s, when they know that these problems remain unchecked in the HCBS waiver system?

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

See also, "Feds Urge Steps To Make Group Homes Safer" by Shaun Heasley, Disability Scoop, 6/29/18. 

Forced de-institutionalization of people with DD: lives lost and lives disrupted

The following is an article is from The Voice: News and Views of VOR Supporters for Spring 2018. 

VOR is a national non-profit organization funded solely by dues and donations. It receives no government support. VOR represents primarily individuals with intellectual disabilities and their families and guardians.

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. VOR supports the expansion of quality community-based service options; it opposes the elimination of the specialized facility-based (institutional) option.

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

U.S. House of Representatives - Judiciary Committee, Subcommittee on Constitution and Civil Justice Hearings: Examining Class Action Lawsuits Against Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) 

On March 6th, 2018, the House Judiciary’s Subcommittee on Constitution and Civil Justice convened to examine the harmful effects of class action lawsuits aimed at closing Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF's/IID). The hearing came at the request of Judiciary Committee Chairman Bob Goodlatte (R-VA). and was chaired by Rep. Steve King (R-IA).

Martha Bryant, Mother, RN, BSN & VOR member, Caroline Lahrmann, Mother, VOR State Coordinator for Ohio & past president, and Peter Kinzler, Father, longtime VOR Member, Director & Legislative Committee Chair testified against class action lawsuits. Alison Barkoff of the Center for Public Representation and the Consortium for Citizens with Disabilities, spoke on behalf of those in favor of using class action lawsuits against ICF's/IID and opposed having to provide notification to families and guardians of individuals residing in these homes who would become part of the class.

First to testify was Martha Bryant, a constituent of Congressman Goodlatte who spoke about her son Tyler. Tyler and his brother Taylor were the two surviving brothers of a triplet pregnancy and were born prematurely at 29 weeks. Tyler had severe physical and intellectual disabilities, functioning at the level of a 15-20 month old baby. He was non-verbal and non-ambulatory. His condition required ICF-level care which he had received at Central Virginia Training Center (CVTC) for most of his life.

With complete disregard for his needs, Tyler was forced from his home at CVTC on Jan 17, 2017 as the result of a class action lawsuit initiated by the [U.S.] Department of Justice (DOJ). Tyler was moved to an inadequate and inappropriate non-ICF facility 139 miles away without his mother’s consent, and with no regard for her objections or guidance about the needs of her sons. Tyler could not tolerate the transfer. He was sent to the hospital where he spent 49 days, most of those in the ICU. Less than two months after his transfer, Tyler died in the Richmond hospital alone, more than 100 miles away from his mother who was not present at the time. She was notified of his passing by phone. [emphasis added]

The committee then heard from VOR’s Caroline Lahrmann, the mother of severely intellectually and physically disabled twins who reside in a private ICF in Ohio. Mrs. Lahrmann gave testimony about the class action suit initiated by her state’s Protection and Advocacy agency (P&A) - Disability Rights Ohio (DRO) - aimed at closing all of the state’s public and private ICF’s and uprooting 5,900 people with I/DD from their homes and forcing them into HCBS-waiver settings. The suit would treat all of these 5,900 individuals as if they were one and the same, with the same needs and levels of disability as the six people chosen by DRO to be named parties in the suit. Mrs. Lahrmann quoted from Olmstead to describe the manner in which DRO’s lawsuit violates the spirit and letter of that decision. DRO’s lawsuit has cost the families who oppose it over $100,000 to date. These families are forced to fight against being named as participants in a class action suit that is the antithesis of their wishes for their loved ones. She went on to say that the ability to opt out of these suits is not sufficient, that this type of class action suit should be prohibited on the grounds that, “P&A’s bring class actions against Medicaid accommodations that are needed and chosen by their own clients.” [emphasis added]

Opposition testimony was then provided by Alison Barkoff, a long-time professional advocate for the waiver system who favors closing all ICF’s. Ms. Barkoff told of her family’s refusal to put her brother into an ICF forty years ago, and their struggle to provide for him for years before he was able to receive supplemental at-home services. Her testimony contended that she has seen people leave ICF’s and thrive in the community. She praised the class action suit that resulted in the death of Tyler Bryant for having given community services to the son of a woman named Brenda Booth, who refused the care offered by the state of Virginia in an ICF in favor of waiting for community placement. Ms. Barkoff spoke of “expansion of services” without acknowledging that this expansion in one sector, waiver-based care came at the cost of ICF level care within the system. She did not mention the people who have suffered trauma and death by being displaced from their homes – only of those who have received services as a result of these actions. Rather than advocate for more funds and more services, her approach is to take from one group of people and give to others, and to use expensive class action suits as the way to enact that redistribution of services. [emphasis added]

VOR’s Peter Kinzler was the last to testify. He is the father of Jason, 42, who functions at the intellectual level of a 6-month old and requires 24/7 care for all aspects of living. For 37 years, Jason received excellent care at North Virginia Training Center. In 2016, NVTC was closed by a class action suit by DOJ, in accordance with their policy, “Community Integration for Everyone”. They did this under Federal Rule 23(b)(2) [regarding class action lawsuits], which swept all individuals residing in ICF’s into the suit, with neither advance notice nor the right to opt out. DOJ claimed to have consulted with “a whole laundry list" of people in the system. The only people not consulted were the families of the residents of the ICF. Despite near unanimous opposition by the families, DOJ went on with their case. They opposed the families motion to intervene in the case, forcing them to spend over $125,000 in legal fees. The judge then ignored the families’ opposition and accepted a settlement between the DOJ and the State of Virginia. Mr. Kinzler’s family was forced to choose between putting Jason in a group home forty minutes from his home or into an ICF 160 miles away. To make things worse, the closure timetable was not tied to the creation of resources sufficient to handle the displaced individuals. Such displacements have resulted in considerably higher rates of mortality among this fragile population. [emphasis added]

After testimony, Rep. Goodlatte, Rep. Cohen (D-TN), and Chairman King asked the participants a number of questions to illustrate the issues brought up in their testimony. Mr. Cohen asked Ms. Barkoff if there were protections for people who oppose class action suits. She insisted that these protections exist, making a bill that would allow families to opt-out unnecessary. Her response was in direct conflict with the experiences and testimony of Ms. Bryant, Mrs. Lahrmann, and Mr. Kinzler. Rep. Goodlatte asked Ms. Bryant if others who had been forced out of the CVTC had suffered or died as a result of their displacement. She stated that of the 42 people transferred into the community, Tyler was the tenth death that she knew about. When asked by Rep. Goodlatte about the importance of being able to intervene in these class action suits, Mrs. Lahrmann replied that the judge in her case told her that without the ability to intervene, she would have had no rights in the case in which her children were unwilling participants. [emphasis added]

Toward the end of the hearing, Rep. Goodlatte asked several questions of Ms. Barkoff that highlighted the inconsistencies in testimony. He asked if she was aware of any class actions P&A’s conducted against group homes. She skirted the question several times and never gave a direct answer. He went on to ask her if the P&A’s had an anti-institution agenda. She replied that in her opinion, they did not. He went on to say that the process as it exists, is inflexible and that it does not recognize the needs of people in ICF’s or their families, and that more protections were needed.

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

The written testimony and the full video of the hearing is available here.

Here is a link to the hearing on YouTube. The hearing begins at 5:18.

U.S. House Hearing on Class Action Lawsuits that are used to close Facilities for people with Intellectual Disabilities

The U.S. House of Representatives Judiciary Subcommittee on the Constitution and Civil Justice held a hearing on the use of class action lawsuits brought by government-funded agencies that often result in the closure of facilities for people with intellectual disabilities. Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are medicaid-funded and highly regulated homes for tens of thousands of people with severe and profound disabilities. Parents and guardians whose family members live in these facilities were given a chance to voice their objections to lawsuits that include their family members against the wishes of the individuals and their families and without regard to the best interests of the individuals involved. Alison Barkoff from the Consortium of Citizens with Disabilities defends the use of class action lawsuits and represents many of the advocacy organizations that have been involved in promoting deinstitutionalization of all people with disabilities regardless of the severity or nature of their disabilities. 

This is from the VOR Website: 

***************************
VOR Testimony at House Judiciary Committee Hearings 

On March 6th, 2018 the House Judiciary Committee convened to examine the harmful effects of class action lawsuits aimed at closing Intermediate Care Facilites for Individuals with Intellectual Disabilities (ICF's/IID). The hearing came at the request of Chairman Bob Goodlatte.

Testimony was presented by Martha Bryant, Mother, RN, BSN & VOR member, Caroline Lahrmann, Mother, VOR Ohio State Coordinator & past president, and Peter Kinzler, Father, longtime VOR Member, Director & Legislative Committee Chair. Alison Barkoff of the Center for Public Representation spoke on behalf of those in favor of using class action lawsuits against ICF's/IID and opposed to providing notification to families and guardians of individuals residing in these homes. 

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

You can listen to the oral testimony at the Judiciary Committee Website or on Youtube and link to the written testimony by clicking on the names below.

At 19 minutes, begin testimony by Martha Bryant, mother and RSN, BSN, from Amherst County, Virginia.

At 24:50 minutes, begin testimony of Carolyn Lahrmann, mother and former president of VOR, from Columbus, Ohio

At 32 minutes, begin testimony of Alison Barkoff, sister and co-chair, from the Consortium of Citizens with Disabilities.

At 38 minutes, begin testimony of Peter Kinzler, father and attorney, from Alexandria Virginia.