Monday, May 21, 2018

People with severe IDD and those with Serious Mental Illness experience similar barriers to treatment and care

This is a talk by D.J. Jaffe from on barriers to treatment for people with serious mental illness. It was presented to the National Conference for Behavioral Health in Washington, D.C. in April 2018. Jaffe is the brother-in-law of a woman with schizophrenia.

According to the Website, “Mental Illness Policy Org. was founded in 2011 to provide unbiased and easy-to-access information for the media and policy makers about the care and treatment of people with serious and persistent mental illness. The issues facing the seriously mentally ill differ from the problems that affect the much broader population of people who have issues like anxiety and mild depression. The needs of the seriously ill often get lost in the larger dialogue about mental health. Being honest about this population requires addressing difficult issues like violence and involuntary treatment, issues many organizations prefer to avoid.”

Of course there are differences between people with severe mental illness and people with intellectual and developmental disabilities (IDD), but there are some striking similarities in the barriers to appropriate care and treatment for both populations. Those with severe and profound IDD also “get lost in the larger dialogue…” about people with disabilities. There is a reluctance to acknowledge the severity of these disabilities for fear of stigmatizing the entire population of people with disabilities, not to mention the profound effect these disabilities have on families and caregivers. To be sure, we are talking about a small but significant minority in both populations whose needs cannot be dismissed or swept away by ignoring reality or by wishful thinking.

Here are a few excerpts from Jaffe’s talk that caught my attention:

“We fail the seriously mentally ill when we try to convince government that it is stigma rather than lack of services that presents the major barrier to care for the seriously mentally ill”

“…when we mislead about violence, after incidents like Parkland, Virginia Tech, Aurora Colorado, we pull out our most popular claim: the mentally ill are no more violent than others. Nonsense. The untreated seriously mentally ill are more violent than others and …we know it… We fail the seriously mentally ill when we try to hide that because we prevent solutions. “

“If we really want to reduce stigma, we have to reduce the violence.”

“The police step in when one condition is met - the mental health system fails.”

“…We mislead officials into thinking we should spend more improving mental health and mental wellness in the masses rather than on treating the seriously ill. As a result of our advocacy the ability to get care has largely become inversely related to need. The least seriously ill are going to the head of the line and the most seriously ill are going to jails, they’re going to shelters, they’re going to prisons, and they are going to morgues.”

“Funds have been moving from state hospitals, which by definition serve the seriously ill, to community programs…but that’s not where patients are moving. Patients are moving from hospitals, which are going way down, to jails which are going way up. But we in the industry still claim that if we reduce hospitals we will reduce institutionalization. That has nothing to do with reality.”

“We have to make it easier for people to get treatment before they become a danger to self or others rather than preserving laws that require them to become a danger to self or others… We have to stand up against Bazelon, Protection and Advocacy, the ACLU…and others who believe being psychotic, delusional, hallucinating is a right to be protected rather than an illness to be treated…”

So-called evidence-based programs are “generated by the promoters of the treatments who want us to ignore their conflicts of interest…”

“The seriously mentally ill are being shunned and shut out of the engagement”

On stigma: “Any mom of somebody with serious mental illness, any social worker who works [with the seriously mentally ill]..knows that the biggest barrier to care is there’s no services available…”


D.J. Jaffe's talk on Youtube

"Insane Consequences: How the Mental Health Industry Fails the Seriously Mentally Ill" by D.J. Jaffe

Review of "Insane Consequences" by Pete Earley

Monday, May 7, 2018

Delaware: The McNesby Act would ensure full funding of I/DD services

From the Ability Network of Delaware

The Michael McNesby Full Funding for Adults with I/DD Act (HB 104) will ensure that funding for services is brought up to levels recommended by the [Delaware] Department of Health and Social Services over the next 3 years.

Currently, funding is inadequate, which stresses the entire system and could put adults receiving services in danger. The lack of proper funding means that the Direct Support Professionals that deliver services are underpaid, which leads to employee turnover, which can diminish the quality of the care.

The McNesby Act will deliver $9 million in state funding to programs for adults with intellectual and developmental disabilities in the next state budget.

Friday, May 4, 2018

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.

Wednesday, May 2, 2018

Iowa: Managed Care and Privatization of Disability Services Create a Crisis

What's the matter with Iowa? Managed care and privatization of Medicaid for the State's poor and disabled have created a crisis in the delivery of Medicaid services. The Des Moines Register features over 60 articles from 2015 to the present reporting on the rocky road to the takeover of Medicaid by private health insurance companies.

Michigan should take note. We have a modified managed care system that so far preserves services provided by public Community Mental Health agencies and (at least theoretically) ensures that all medically necessary services will be provided to people with developmental and other disabilities. The move to privatize all services under private Medicaid Health Plans (MHP) is underway, however, with the implementation of three pilot projects and one demonstration program in the state.

Here is a sampling of articles from the Des Moines Register:

The Register’s Editorial: Medicaid plan is gift for private firms, 3/22/15

The Des Moines Register foresaw problems with the idea of privatized managed care for Iowa’s poor and disabled citizens. The editorial board encouraged the public to be skeptical, especially when the state throw’s out numbers, out of context, to show how expensive Medicaid is. It turns out that in 2015, Iowa was doing pretty well in serving people with disabilities and other low income citizens and keeping costs down in comparison to other states:

“In fiscal year 2013, a Medicaid recipient in this state cost an average of $5,491 — less than the per-person cost in 29 other states and much less than people insured by private coverage. For an adult who is not a senior or disabled, Iowa spent an average of $2,000 on health care, less than that spent in 47 other states, according to research from the Kaiser Family Foundation. Health insurance for a state lawmaker costs Iowa taxpayers about $9,000 per year.”

...“Administrative costs are low because the program is largely managed by the government, which is not beholden to stockholders or obligated to pay huge CEO salaries. The cost of operating the program is currently 4 to 8 percent, according to the Iowa Department of Human Services, which oversees Medicaid. When privatized, the cost could grow to as much as 15 percent. Those are dollars not spent on actual health care.”

...“In its comments to state officials, the Iowa Hospital Association noted that managed care companies reduce costs by denying coverage for services, including emergency room visits. The association is 'deeply concerned' that the private model could reduce access to care and reimbursement rates for providers.”

Branstad touts Medicaid contracts, but few hospitals signed

by Tony Leys,, 11/19/15

Signs of trouble. 
The takeover of Medicaid by private health plans was scheduled to go into effect January 1st, 2016 [the starting date was later moved to April 1, 2016], but by November 2015, most hospitals and physicians had not signed contracts to participate in the new system.

“Gov. Terry Branstad, who is pushing to shift management of the state’s Medicaid program to private companies on Jan. 1, said Thursday that the firms have signed more than 12,000 contracts with pharmacies, doctors and other health care providers.

“But most Iowa hospitals and physicians have not signed contracts to participate in the new system, according to the Department of Human Services. The issue is important, because the managed-care companies are supposed to show they have broad networks of health care providers willing to care for the new plans' members."

…"None of the four managed-care companies reported signing more than 17 of the 118 Iowa hospitals now participating in Medicaid. One of the companies, WellCare of Iowa, said it hadn’t signed up any hospitals. Another, AmeriHealth, said it had signed up just two.”

…”Branstad contends the shift to managed-care companies will save millions of dollars for the state and federal governments while offering flexibility and coordinated care to Medicaid recipients.

“Critics fear the change to for-profit management will lead to service cuts. They say Iowa’s 560,000 Medicaid recipients are being put in the impossible position of choosing a managed-care plan next month without knowing whether their doctors, hospitals and other health care providers will be participating in any of the networks.”

Iowa Medicaid payment shortages are 'catastrophic,' private managers tell state

by Tony Leys, 12/21/16

By December 2016:
“The for-profit companies running Iowa’s Medicaid program have been complaining to state administrators that the controversial project is 'drastically underfunded' and that the situation has been a 'catastrophic experience,' newly released documents show.

"One managed care executive wrote that Iowa’s recent offer to give the companies an extra $127.7 million in state and federal money this budget year 'is not acceptable.' He added that without major changes, the privately run Medicaid program could be unsustainable.”

…”Gov. Terry Branstad last year ordered the shift to private Medicaid management, which took effect April 1. Branstad, a Republican, predicted the private companies could allow the state to save tens of millions of dollars by helping the program’s 600,000 poor or disabled participants stay healthy. Critics are skeptical of the savings estimates, and they say the main effect of the switch has been to tangle Medicaid recipients and care providers in red tape.”

….”During a Statehouse hearing last week, a Democratic legislator asked executives of the three companies if they planned to ask for big raises in their payments for next fiscal year. They declined to answer.

“We really just don’t discuss those things in public settings,” Cheryl Harding, who is Iowa president for AmeriHealth Caritas, told Sen. Joe Bolkcom of Iowa City.”

Nevertheless, the health care plans complained that the plans were vastly underfunded and unsustainable. 

State should hold managed care accountable 

by Michael Bugeja, Iowa View contributor, 7/29/17 

This is the editorial viewpoint from a conservative Republican: The writer refers to a teenage “victim” of Medicaid who has a severe mental illness. Medicaid is pressuring treatment facilities to shorten the length of treatment regardless of the recommendation of the professionals involved. 

“As the former director of the Greenlee School at Iowa State University, I know Gov. Terry Branstad. I usually sat next to him at the Iowa Newspaper Association convention head table. I have the utmost respect for Gov. Branstad. His service to the state of Iowa is exemplary. But he made one colossal misjudgment in privatizing services for the mentally ill and others dependent on Medicaid services and managed care. 

"As a fiscal conservative Republican, I understand why he did it and why he believed that privatization saves the state millions of dollars. It may appear so on the surface, but savings in one area often results in expenses in others, and Iowa communities are paying the price.” 

AmeriHealth's exit should curtail disabled residents' suit against Iowa, state lawyers say

by Tony Leys, 11/6/17

A class action lawsuit was filed in June 2017 by Disability Rights Iowa on behalf of 6 disabled Iowans, “who argue that the state’s shift to private management of Medicaid led to illegal cuts to their in-home care services. The plaintiffs say without those services, they could be forced to move into nursing homes, violating their constitutional rights.” The class action is on behalf of about 15,000 Iowans with disabilities.

Meanwhile, Amerihealth Caritas, one of the Managed Care Companies announced that it is dropping out of the state’s Medicaid program, “because of a contract dispute. The state lawyers noted in a court filing last week that AmeriHealth oversees Medicaid benefits for all six initial plaintiffs in the Disability Rights Iowa lawsuit. None have had their benefits overseen by the remaining two managed-care companies, UnitedHealthcare and Amerigroup.”

By its very design, managed-care Medicaid discriminates against severely disabled Iowans

by Bill Dodds, Iowa View contributor, 1/26/18

"By its very design, managed-care Medicaid discriminates against disabled Iowans who require costly, long-term treatments simply to live in their communities. It’s the only way today’s managed-care organizations (MCOs) can deliver on their promise to slow the growth of Medicaid spending and generate profit for shareholders.

"Iowa, like many states, has sought to gain control over the increasing costs of its Medicaid program by doing away with a state-run system in favor of managed care. This has resulted in state contracts with multiple managed-care organizations in an attempt to incent these companies to compete in Iowa for Medicaid members by offering services that best meet their needs while simultaneously reducing costs.

"This might sound good in concept but is difficult to achieve in reality, especially for recipients who have severe mental illness and disabilities. At Optimae, we have seen this play out daily in the lives of the more than 5,300 Iowans we serve."

…"It is virtually impossible for an MCO [Managed Care Organization] to determine which of the millions of units of services provided each year is truly 'medically necessary,' given that more than 600,000 Iowans receive services under Medicaid. To compensate, the companies focus on managing the most expensive services, especially those that are long-term. This includes longer term inpatient and outpatient services, including home health and home- and community-based services for individuals with disabilities, and nursing and residential care facilities."

…”Additionally, the MCOs in Iowa and most other states are publicly traded, for-profit companies. Their management is under pressure to constantly produce better financial results for shareholders, meaning taxpayer dollars that previously paid for Medicaid services are now set aside for profits. This puts the most expensive services at even greater risk for reductions by the MCOs regardless of the outcome."

Iowa House passes Medicaid cleanup bill in effort to address managed care woes 

by Brianne Pfannenstiel,, 3/8/18

“The Iowa House of Representatives approved legislation Thursday that lawmakers said would begin to fix some of the problems that have plagued the state's Medicaid system. "

...“The Iowa House of Representatives approved legislation Thursday that lawmakers said would begin to fix some of the problems that have plagued the state's Medicaid system. “

Wednesday, April 25, 2018

Facing the Housing Crisis for DD with a Diversity of Solutions

NOS Magazine is a “news and commentary source for thought and analysis about neurodiversity culture and representation”. For the uninitiated, neurodiversity is a controversial approach to disability that includes the belief that autism and other disabilities are a normal variation of human behavior and should be accepted as a social category on a par with gender, ethnicity, and sexual orientation. According to the NOS Website, “NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.”

NOS published an article entitled "Developmental Disability Community Faces a Housing Crisis" by Cal Montgomery on 4/5/18. The author begins by referring to an article published in USA Today, “Don't let my son plunge off the 'disability cliff' when I'm gone” by Michael Bérubé on 4/2/18, where the father of a son with intellectual disabilities describes the common experience of parents of adults with ID working to create a balance so that their son has opportunities to live as independently as possible with the supports he needs to do that: “Our experiences have shown us how much help people with intellectual disabilities need to live independently. That paradox divides the disability community.”

Bérubé also puts in a plug for “intentional communities” that “integrate people people with intellectual disabilities into communities in meaningful ways, 24 hours a day, 7 days a week…We must nourish and support these social arrangements; they are a powerful social good.”

Intentional communities are one solution (certainly not the only one) to the housing crisis that the author ironically rejects, based on the idea that they are too institutional and therefore should be cut off from Home and Community-Based Services funding and forced to apply for Medicaid funding for institutional settings. There is an undercurrent of resentment toward people who can benefit from and want to live in congregate settings (settings serving more than 3 or 4 people with disabilities together) and whose safety and well-being could be jeopardized in “scattered-site housing”, the ideal setting promoted here for everyone who is not in an institution. It seems, according to the NOS article, that HCBS funds belong to those who want and need services restricted to the setting that the HCBS advocates are promoting. It seems that those with more extensive needs who need something different are taking funding they are not entitled to if they choose to live in an intentional community.

In regard to institutions, the NOS article is misleading. It implies that Intermediate Care Facilities for people with Intellectual Disabilities (ICFs/IID) are readily available to people with more severe disabilities who need more controlled environments. In fact, some states have closed all their ICFs, many have severely limited or ended admissions, and others have made it nearly impossible for individuals needing this level of care to access it. These barriers have been put in place with the approval and support of most of the groups now pretending to promote an ICF as an acceptable alternative to community settings. [In the case of the advocates interviewed for the NOS article, that includes ASAN, the ACLU, IPADDUnite!, and ADAPT.]  

Furthermore, the word "institution" is used here only in a pejorative sense that is not shared by individuals and families who have experienced the life-saving services available in these facilities.

In addition, the author disparages Misericordia, a large campus-like setting in Chicago that serves 600 people with intellectual and developmental disabilities both on and off the campus in a variety of settings. Misericordia has built a “community of care” over decades responding to the many and changing needs of the people they serve. You need to see it to believe it - I encourage anyone who is in the Chicago area and interested in the services provided to schedule a tour and talk to the residents and their families who fully support Misericordia and its mission. 

The author also puts in a dig at VOR by getting the name wrong and misrepresenting what VOR stands for. I have been a member of VOR for over 15 years.

I sent comments to NOS Magazine to point out inaccuracies and misconceptions in the article. My comments did not make it through the moderation process, so I will publish them here: 


In response to this article: 

I have two adult sons with profound physical and intellectual disabilities who live in a group home that provides for their extensive needs in a setting with four other adults with similar needs. I have also been a member of VOR for more than 15 years. 

1. Although there is a housing crisis for people with disabilities, Home and Community-based Services (HCBS) can be provided almost anywhere that a person with a disability lives. Nevertheless, CMS has imposed on states and individuals with disabilities the regulation of settings, ie. housing, rather than services. The 2014 HCBS settings rule unnecessarily restricts individual choice and seems to demand full integration into “the community” to justify HCBS funding when the ADA requires integration “appropriate to the needs of the individual”. The most pressing crisis that threatens the system of community care is the low pay and poor working conditions for direct service providers. Raising the pay, improving benefits, and honoring the importance of these service providers is something we can all get behind, rather than spending energy and resources closing programs and dividing the disability community into Us vs. Them. 

2. What is an Institution? In Medicaid law, institutional services cover mainly Intermediate Care Facilities for people with ID (ICFs/IID), nursing facilities, and hospitals for mental diseases. ICFs/IID are an “optional” program under Medicaid that originally was a companion program to HCBS (also optional), allowing states to waive certain requirements for ICFs to pay for community care. Nothing prohibits institutional care for those who need it, so why is CMS trying to restrict funding to settings that resemble an institution, when an actual institution is OK? One other point, although an ICF/IID may be as small as a 4-person group home, not all settings with 4 or more people are “institutions” and there is no justification for using this arbitrary number for defining a setting as being too institutional. 

3. The name of VOR is VOR! The organization was founded in 1983 as “Voice of the Retarded”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations (including VOR) removed the word "Retarded" from their names and from the discussion of issues related to this segment of the DD population. So when you see the acronym VOR, think “Voice of Reason”, to help you identify who we are. Also, check out “About VOR for positions and policy statements. We are often misrepresented by other advocacy groups. If you insist on calling VOR “Voice of the Retarded”, then for the sake of consistency, you must also refer to The ARC as the "Association for Retarded Citizens" and TASH as 'The Association for the Severely Handicapped". 


See also:

Letter to CMS from over sixty organizations and advocates supporting a full range of options for people with ID/DD

Wednesday, April 18, 2018

Organizations supporting a full range of services and residential options: "one size does not fit all"

The following is a letter dated 4/10/18 addressed to officials at the U.S. Department of Health and Human Services from over 60 community organizations and advocates for people with developmental and intellectual disabilities. It is in response to demands from, representing 20 organizations, that would force almost all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings. Congregate settings that serve more than three or four people with disabilities together would generally no longer be eligible for Home and Community-Based Services (HCBS) funding – whether or not those are appropriate or desired by Medicaid Waiver recipients. [Special Medicaid waivers fund Home and Community Based Services for people with developmental and other disabilities.] HCBS is regulated by the federal Centers for Medicare and Medicaid Services (CMS).

Here are the email addresses of people who received the letter, in case others wish to follow up with their own comments:

Secretary of Health and Human Services Alex Azar:

Administrator Seema Verma:

Calder Lynch:

Vu Ritchie:


April 10, 2018

Dear Secretary Azar, Administrator Verma and Mr. Lynch:

We are writing in response to the alarming demands for an expanded process of heightened scrutiny submitted by the Center for Public Representation and the National Health Law Program on behalf of twenty organizations (henceforth referred to as “the HCBS Advocacy Coalition”) determined to force all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings – whether or not those are appropriate or even desired by waiver recipients.

We applaud CMS’ desire to support adults with I/DD in community settings, and completely agree that those who want to live and work in the greater community should receive whatever services they require to succeed. However, the campaign to solely fund small, dispersed, “integrated” settings is just as dangerous, paternalistic, and ideological as the forcible institutionalization of the mid-20th century to which it responds. We reiterate, because this one point should be sufficient to end this debate, that this is an ideological crusade rather than an evidence-based agenda: although the aforementioned advocates have long maintained that “studies” show that small, dispersed settings are best for adults with I/DD, an independent review of the literature by Dr. David Mandell, ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, found that, although “decisions about [residential] care may have the most profound effect on well-being and happiness…our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

Not only is there no scientific evidence behind the one-size-fits-all model of residential and vocational supports, but the lack of more intensive, structured settings for our most impaired adults has resulted in catastrophic consequences. Mandell notes that “today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings that, as Mandell reports, “often are not up for the task of caring for individuals with more profound impairments.” Undoubtedly, it was his fear of exactly these outcomes that motivated Justice Anthony Kennedy to warn, in his concurring opinion to the 1999 Olmstead decision, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

But this debate isn’t just about those with the most severe intellectual and developmental disabilities. Many Americans choose to live with peers in retirement, religious and ethnic communities – there’s even an “adult dorm” in Syracuse for lonely Millennials. It is only when adults with I/DD choose to live and work with their peers that opponents claim these settings are “isolating” and “segregating” – resulting in the heartbreaking irony that adults with I/DD represent the only population in this country denied the civil right to decide where and with whom they live, and that this outcome is largely due to the influence of groups allegedly concerned with preserving the rights of the disabled. It is the height of arrogance for the HCBS Advocacy Coalition to insist it knows what’s best, even as applications pile up for new projects like First Place in Arizona, which consists of 55 apartments for adults with autism, and the 97-unit The Arc Jacksonville Village in Florida. We encourage you to visit these communities, as well as others all over the country whose names and contact information we would be happy to provide.

On a practical level, the more elaborate process of heightened scrutiny demanded by the HCBS Advocacy Coalition would devour the time and funding of already stretched agencies. Almost two hundred thousand individuals with I/DD were on waiting lists for Medicaid long-term supports and services as of June 2015. [emphasis added] We need to foster a creative environment in which adults with I/DD and their families are encouraged to work with providers to develop the environments they want. What we absolutely do not need is a landscape dominated by even more bureaucratic obstacles.

Importantly, this vision is very much in line with the Final [Settings] Rule as it was originally articulated by CMS. It acknowledged that regulations should be more “outcome-oriented…rather than based solely on a setting’s location, geography, or physical characteristics.” Secretary Price and Administrator Verma similarly emphasized the need for choice in their March 14, 2017 letter to the states’ governors, in which they expressed their commitment “to a new era for the federal and state Medicaid partnership where states have more freedom to design programs that meet the spectrum of diverse needs of their Medicaid population.” They noted that the states “are in the best position to assess the unique needs of their respective Medicaid-eligible populations and to drive reforms that result in better health outcomes.”

It is in line with these priorities as articulated by your own agency – as well as by the ADA and the Olmstead decision – that we ask you to retract the contradictory guidance that stigmatized farmsteads, gated communities, clustered housing and, more generally, all disability-specific settings as “isolating.” Not only does Federal law support the right of choice, but the concept of person-centered planning on which our system of service delivery is based mandates that these important decisions be made exclusively by waiver recipients and their families, from the most expansive range of home and workplace settings possible.

We look forward to participating in this critical conversation. 

Correspondence may be addressed to Amy Lutz via email at or by mail to EASI Foundation, P.O. Box 351, Villanova, PA 19085. 


Together for Choice (NV)

Autism Science Foundation (NY)



Autism New Jersey (NJ)

Madison House Autism Foundation (MD)

EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (PA)

Bergen County United Way (NJ)

Advocates for Community Choice (MO)

Special Moms Network LLC (NY)

...and many more

See the original 4/10/18 letter for complete information on references and the list of organizations signing on.

Olmstead Resources

The Federal Government's Quiet War Against Adults with Autism 

Legal Vulnerabilities of CMS’s Regulation of Home- and Community-Based “Settings”

Monday, April 16, 2018

Majority of people with Intellectual and Developmental Disabilities live with their families; only 13.5% in supervised residential settings

Data from "State of the States in Intellectual and Developmental Disabilities" 2015 

This is something to consider when family voices are discounted or dismissed for lack of "authenticity" when they speak on behalf of their disabled family members.

Many advocacy organizations promote the idea that if we close all institutions and other congregate settings (only 13.5% of people with IDD live in such settings), we will save vast amounts of money that can then go toward everyone living in their own home or with their families. The vast majority of people with IDD already live in their own homes or with their families, and yet we still have a nationwide crisis in care and housing for people with disabilities. To solve the crisis, we need to take a bold look at our nation's priorities and find the funds to pay for the services needed, rather than cannibalizing programs (such as supervised residential settings) that are more costly because they serve people who are the most vulnerable and hardest to care for. 

5.1 millionNumber of people with Intellectual and Developmental Disabilities (IDD)

13.5% or 604,200 live in a supervised residential setting.

15.7% or 795,700 live alone or with a roommate.

71% or 3.6 million live with a Family Caregiver :
  • 24.0% of the 3.6 million live with caregivers over 60 years old
  • 35.0% of the 3.6 million live with caregivers 41-59 years old 
  • 41.0% of the 3.6 million live with family caregivers less than 41 years old.