What's old is new again: Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

This is a post from The DD News Blog for August 12, 2018. Not much has changed since then, with the exception of a worldwide pandemic that killed over a million people in the US and revealed serious inadequacies in the country's healthcare system. It also shined a light on the heroics of healthcare workers on the front lines of the pandemic, who, at first had the admiration and respect of the public. Later, they suffered abuse from the misdirected anger of a portion of the public stirred up by conspiracy theories about the virus and vaccines. The system of care for people with I/DD and their families also suffered with programs closing, some temporarily, but others permanently. Severe work shortages, especially among direct service professionals, hampered an already distressed system, seemingly on the verge of collapse. We seem to be back, but not quite, to where we were when the whole thing began. 

This is a good place to start, heading into a new year with the same old controversies that must be resolved if we are going to rebuild a fair system that includes recognition of the full range of people served and the diversity of needs.

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

Sunday, August 12, 2018

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many I/DD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (I/DD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them.

To what extent is implementation of the Settings Rule improving the lives of people with I/DD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with I/DD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services.

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else.

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with I/DD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.  [He currently serves as general counsel of the US Department of Health and Human Services and is on leave from the University of Michigan Law School] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.”

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings.

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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

See also,

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

2018 Together for Choice Conference, 10/17 - 10/19

Together For Choice is a national non-profit organization formed "to protect and advance the right of individuals with intellectual and developmental disabilities (I/DD) to live, work, and thrive in communities and settings of their choice." TGF is sponsoring a conference in Chicago, October 17 to 19, 2018. I regret that I will not be there, but I hope that others will attend and that there will be plenty to share with people who could not be there in person.

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

Please join us October 17-19, 2018 on Misericordia's beautiful campus in Chicago.

Together for Choice is a national grassroots advocacy organization formally incorporated in 2017 with over 800 members in 47 states. Our mission is to protect and advance the right of individuals with intellectual and developmental disabilities (I/DD) to live, work, and thrive in communities and settings of their choice. We work with national networks, self-advocates, families, and service providers to advance choice, quality, and increased resources for the I/DD population. Since our incorporation, we have been educating the public and governmental officials on the need for Medicaid funding of choice-based housing and employment/developmental training models, as well as increased resources at the federal and state levels to ensure quality services. Our continued focus is to develop policy reform initiatives addressing the myriad of I/DD community needs.

Agenda and Conference Schedule

The conference includes an impressive array of speakers:

David Axelrod, Keynote Address

Rodney Biggert, "The Trials and Unanswered Questions of the 14(c) Certificate"

Taylor Brose, "The DSP Workforce Crisis: Finding Solutions"

William Choslovsky, "Protecting the ICF Entitlement: the Real Meaning of Olmstead"

Sr. Rosemary Connelly, RSM, Conference Opening Statements

Michael Diaz, "Creating Sustainable Community Partners to Enhance Service Options"

Jill Escher, "The National Council on Severe Autism: What is an Essential Care Non-Profit?"

Melissa Harris, "HCBS Regulation and Implementation"

Rob Johnson, Keynote Address

Jim Kokoris, Keynote Address: "A Special Life"

Paul C. Landers, "The DSP Workforce Crisis: Finding Solutions"

Christopher B. Lowther, "CMS's Medicaid Home- and Community-Based Settings Regulations: How We Got Here and Where We're Headed"

Crystal Makowski, Ed.D., "Where Do We Go From Here? Best Practices!"

Patrick Mannix, "America’s Workforce: Empowering All – Updates from the Office of Disability Employment Policy"

Molly Nocon, Housing Model Discussion

Philip J. Peisch, "CMS's Medicaid Home- and Community-Based Settings Regulations: How We Got Here and Where We're Headed"

Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many IDD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (IDD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them. 

To what extent is implementation of the Settings Rule improving the lives of people with IDD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with IDD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services. 

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else. 

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with IDD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases. [This is the same Sam Bagenstos who is running for the Michigan Supreme Court in the November 2018 election.] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.” 

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings. 

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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

See also, 

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

VOR documentation of "Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2015 to Present" 

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

VOR reply to Congress on the meaning of Olmstead, July 2018

Mary Lazare is the Principal Deputy Administrator and Acting Commissioner on Disabilities at the federal Administration for Community Living (ACL). Remarks that she made at the Autism Society of America 2018 National Conference in July set off an uproar among some disability advocates who claimed that she said she favored segregating people with disabilities. 

According to an article in Disability Scoop, "Talk Of Segregating People With Disabilities Alarms Members Of Congress" by Michelle Diament, 7/18/2018, "The lawmakers said they were told that Lazare said she believed the Supreme Court came to the wrong conclusion in the landmark Olmstead v. L.C. case, which affirmed the right of people with disabilities to access community-based living, and that she prefers segregated and institutional settings." The problem is that there is no complete transcript of her remarks, no recording of her remarks, and conflicting third-hand reports from people who claimed to hear the remarks or at least heard of them from other people. Her subsequent Tweet of Apology and Regret is ambiguous, but she does say "We also recognize Olmstead gives people the right to other choices [than 'community living']". That part is exactly right.

Three members of Congress wrote to the ACL wanting to know more about Lazare's remarks, but also revealing a misunderstanding of Olmstead that is consistent with a misinterpretation that some advocacy groups have been promoting since 1999. VOR wrote to the three lawmakers "to emphasize the need for ICFs/IID in a full continuum of care and to clarify the true meaning of Olmstead for these lawmakers and their associates."

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

VOR Reply to Congressional Letter to the ACL

July 22, 2018

Representative Jan Schakowsky, 115th Congress, Illinois District 9
Representative Greg Harper, 115th Congress, Mississippi District 3
Representative Jim Langevin, 115th Congress, Rhode Island District 2

Cc:
Lance Robertson, Administrator, Administration for Community Living
Mary Lazare, Principal Deputy Administrator, Administration for Community Living

Dear Representatives Schakowsky, Harper, and Langevin:

We are writing in response to your July 13th letter to Administrator Lance Robertson of the Administration for Community Living (ACL) regarding comments made by Principal Deputy Administrator Mary Lazare at the recent ASA [Autism Society of America] Conference. As there is no actual record of Ms. Lazare’s comments, we can only conclude that some of her statements deviated from the past positions expressed by the ACL, which have held that everyone does better in the community. Since the conference, accusations have flown around the internet, accusing the ACL of trying to re-institutionalize everyone and reverse the course of the last 30 years. We are concerned by the level of anger and hyperbole to which this issue has been raised.

Our concerns are legitimate, as our organization has been mischaracterized in many of these online diatribes. VOR is a national non-profit organization, founded in 1983 by families of individuals with intellectual disabilities (IDD). Many of our members have loved ones with severe/profound intellectual disabilities or behavioral problems. Many are non-verbal, non-ambulatory, have PICA or self-injurious behaviors, are subject to frequent seizures, or are medically fragile. Some families have loved ones with far less extreme disabilities, but feel that their needs are not being properly addressed by our health care system. VOR advocates for a full continuum of care, respecting the rights of all to the level of care that is most appropriate to their needs. We support the goal of community integration for those who desire inclusion, but we also support the need for high quality care, comfort and stability offered by Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) for those who have higher levels of need. We advocate for choice, and for supporting a full range of options to meet the diverse needs and goals of this population. Unlike other advocacy groups, VOR does not rely on government grants for funding. We are self-supported by membership dues and donations.

In response to the uproar about Ms. Lazare’s purported comments and your letter to the ACL, we are concerned that the 1999 Olmstead Decision continues to be misrepresented by advocates and by members of Congress. Olmstead is a well-balanced decision, supporting the ideal of providing access to the most integrated setting, but admitting that for some, the most integrated setting may be an “institution” (ICF/IID). The justices recognized the need to support ICFs/IID as part of a full continuum of services. The balance of Olmstead has been overlooked or ignored by many who quote only the passages about supporting what has become a mandate for integration-for-all.

Please read the accompanying document for further reference about the full meaning of Olmstead.

For years, our families have been told that their loved ones can receive the same level of support in HCBS waiver settings. We disagree. ICFs/IID are a vital component of our safety net. They are well regulated and must meet rigorous standards to qualify for certification from CMS. The current CMS State Operations Manual for ICFs/IID, Appendix J, contains 247 pages of requirements and protocols for treatment. There is no equivalent for HCBS waiver settings. While the level of service provided by ICFs/IID are not appropriate to most persons with IDD, they are vital to those with high levels of need.

In January, 2018 the HHS Office of the Inspector General, the ACL, and the HHS Office of Civil Rights issued a joint report addressing the under-reporting of critical incidents (abuse and neglect) of individuals with intellectual disabilities in HCBS waiver settings. This followed a November 21, 2016 series “Suffering in Secret” by the Chicago Tribunei and a 2011-2012 series “Abused and Used” in the NY Times. Just two days ago, the Auditor General of the State of Illinois issued a report on the performance of DHS oversight on the state’s CILA (group home) program, which found systemic failures in Illinois’ licensing and oversight of taxpayer-funded group homes for adults with disabilities. Even more distressing are the facts in the case of Georgia earlier this decade. A determination by the U. S. Department of Justice led the state to closing many of its ICFs/IID, without ensuring that the HCBS system was prepared to handle the medically fragile IDD population. The consequences were tragic. Over the years that ensued, many people died. A March, 2015 article in the Augusta Chronicle reported that 500 individuals died in group homes in the previous year.

Our purpose in this letter is not to point fingers or to say that one form of care is better than another. It is to say that the system as a whole needs to be re-evaluated, that we need to do better with the resources we have and build up every asset and resource we have. We need to stop diverting time, energy, and funds on ideologies and on committees and organizations that serve only a portion of our IDD population and devote our resources to direct care of individuals, sufficient wages for Direct Support Professionals, monitoring our system for abuse, neglect, and misuse of funds, moving people from the waiting list to appropriate services, and strengthening all of our existing forms of residential care, services, and employment opportunities.

The time has come to drop the dogmas that divide us and learn to support each other, to work to address the needs of all of our members and their families. Our waiting lists are too long. Too many of our people are underserved. Too many of our people are not receiving the right level of services and supports. Too much money is being wasted, spent on oversight agencies that fail to provide oversight or being diverted to lobbying groups that support their own self-interest instead of the interests of those they are tasked to serve.

Thank you,

Hugo Dwyer – Executive Director, VOR
Joanne St. Amand – President, VOR

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

See also, 

• "Ensuring Beneficiary Health and Safety in Group Homes..."
• "Suffering in Secret: Illinois hides abuse and neglect of adults with disabilities"
• New York Times, 2011 - 2012: "Abused and Used"
• Illinois: "Performance Audit of the July 2018 DHS Oversight of the CILA [Group Home] Program"
• Georgia: "Girl’s death among 500 in one year in community care"

2018 Together for Choice Conference, Chicago, IL

2018 Together for Choice Conference

October 17-19, 2018

Misericordia Home

6300 N. Ridge Ave. 

Chicago, IL 60660 

Join us to advance the rights of individuals with intellectual and developmental disabilities to live, work and thrive in quality communities and settings of their choice!

Registration is now open. See the Together for Choice Conference Page

Please note that this is a busy convention season in Chicago, so reserve your hotel early. We have a limited block of rooms reserved at the Hilton Chicago, which are available on a first-come, first-serve basis. We will provide transportation between the hotel and conference venues on Wednesday, October 17 and Thursday, October 18. We will offer transportation only to the conference at Misericordia Home on Friday, October 19.

If you need assistance reserving a room at a hotel other than the Hilton Chicago or have other conference inquiries, please contact Jonathan Neidorf at jonathann@misericordia.com or (773) 273-4716.

Together for Choice is a national grassroots advocacy organization formally incorporated in 2017 with over 800 members in 47 states. Our mission is to protect and advance the right of individuals with intellectual and developmental disabilities (I/DD) to live, work, and thrive in communities and settings of their choice. We work with national networks, self-advocates, families, and service providers to advance choice, quality, and increased resources for the I/DD population. Since our incorporation, we have been educating the public and governmental officials on the need for Medicaid funding of choice-based housing and employment/developmental training models, as well as increased resources at the federal and state levels to ensure quality services. Our continued focus is to develop policy reform initiatives addressing the myriad of I/DD community needs.

We look forward to seeing you in October!

Together for Choice Team

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

Preliminary agenda:

Wednesday, October 17: Opening Reception in Downtown Chicago (venue to be announced)

At our opening reception, you will enjoy a light dinner and cocktails while networking with other advocates of choice for individuals with intellectual and developmental disabilities (I/DD). Transportation will be provided to and from this venue for those staying at the Hilton Chicago.

Thursday, October 18

Full Day of Conference Programming at Misericordia Home

​You are invited to a full day of conference programming on Misericordia Home's campus in Chicago. The day's programming will be an opportunity for participants to hear from and engage in lively conversation with like-minded advocates for residential, work, and day programming choice for individuals with I/DD. Topics of discussion will include regulations around Home and Community Based Services (HCBS), as well as the future of specialized wages under Section 14(c) of the Fair Labor Standards Act (FLSA).

​We will also offer tours of Misericordia Home's campus, which provides a unique array of services designed to support a broad spectrum of needs.

​David Axelrod will be our keynote speaker during lunch. Mr. Axelrod, a 40-year veteran of American politics, is the former Chief Strategist and Senior Advisor to President Barack Obama. He currently serves as the director of the University of Chicago's non-partisan Institute of Politics, as a senior political commentator for CNN, and as the host of The Axe Files, a top-rated podcast jointly produced by CNN and his Institute.

​You will ​have the opportunity to hear from Together for Choice board members, all of whom have worked extensively to improve the lives of individuals with I/DD, both professionally and for their loved ones. They will discuss recent developments in their work and the direction of Together for Choice.

​This session will be followed by a cocktail hour, entertainment by Misericordia's HeartBreakers dance team, and dinner on Misericordia Home's campus with more opportunities for networking. Transportation will be provided from the Hilton Chicago to Misericordia Home in the morning and back after dinner.

​Friday, October 19

Half Day of Conference Programming at Misericordia Home

​Friday’s conference at Misericordia Home will offer an opportunity for presenters and conference attendees to share best practices related to housing models, micro-enterprise work opportunities, and the DSP workforce crisis. A wrap-up discussion will take place at noon followed by lunch. We will offer off-campus tours of Misericordia Home's group homes in the afternoon.

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:

Coalition for Community Choice

Together for Choice

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

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 HCBSadvocacy.org, 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: Secretary@hhs.gov

Administrator Seema Verma: Seema.Verma@cms.hhs.gov

Calder Lynch: Calder.Lynch@cms.hhs.gov

Vu Ritchie: vu.ritchie@cmas.hhs.gov

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

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 amy@easifoundation.org or by mail to EASI Foundation, P.O. Box 351, Villanova, PA 19085. 

Best, 

Together for Choice (NV)

Autism Science Foundation (NY)

ACCSES (DC)

VOR (IL)

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.

HCBSadvocacy.org

Olmstead Resources

The Federal Government's Quiet War Against Adults with Autism 

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

Michigan Congressman requests changes to Medicaid rule that restricts choice in housing and services

Representative Tim Walberg from Michigan’s 7th Congressional district has added his voice to legislators requesting changes to the 2014 Home and Community-Based Settings rule to ensure choice in housing and services for people with developmental disabilities.

In a letter dated February 16, 2018 to Seema Verma, Administrator for the Centers for Medicare and Medicaid Services (CMS), Representative Tim Walberg expresses his concern for feedback he has received from constituents about the HCBS settings rule that restricts personal choice and exacerbates already limited housing options for people with disabilities: 

“…The Settings Rule…imposes certain unworkable standards on many HCBS settings. In particular, the ‘heightened scrutiny’ standard applied to homes and communities designed for individuals with disabilities, such as campus settings, farmstead communities, apartment buildings designed for individuals with disabilities, day programs, and other ‘intentional communities,’ presumes that these settings are not suitable for individuals receiving Medicaid HCBS.

“The St. Louis Center, a residential community in Chelsea, Michigan, is one of these ‘intentional communities,’ where nearly 50 of my constituents live and thrive as a result of the personalized care they receive from the Center’s kind and loving staff. Having visited the St. Louis Center many times over the past decade, I can testify to the exceptional services provided to the residents, the warm, caring environment of the campus, and the underlying support system fostered by the staff which encourages each individual to grow and reach his or her full potential.

“Community integration is a laudable goal and one I fully support. Unfortunately, settings like the St. Louis Center will not be able to meet CMS’s heightened scrutiny test. I have heard these concerns firsthand from the residents who believe the final rule will force them to move out of their homes. As Michigan already faces a lack of housing and vocational options for individuals with developmental disabilities, these individuals and their families are incredibly worried they will lose their community and the place they choose to call home.

“Each individual living with disabilities has their own needs and faces unique, personal challenges. As a result intentional communities may not be the best option for everyone with a intellectual disability, as nobody should be forced to reside in any setting that is not his or her choice. Unfortunately, as the Settings Rule and related policies are currently being implemented, too many of the the most vulnerable constituents in my district face the threat of losing the safe and healthy community they have chosen to live in.

“To ensure the HCBS final rule expands the quality options available to individuals with developmental disabilities, rather than restricts those options, I respectfully request that you consider amending the Settings Rule to clarify that individual choice is paramount in determining whether a setting meets the requirements; and eliminate the presumption in subparagraph 441.301(c)(5)(v) that settings designed for individuals with disabilities do not meet the requirements.

“On behalf of my constituents in Michigan who would are impacted by the Settings Rule, I thank you for your consideration of these concerns. As a member of the House & Energy Commerce Committee, please know that I stand ready to work with you to ensure the HCBS final rule promotes greater choice for individuals with disabilities so that they can reside in the settings that best meets their distinct needs.”

See also, 

"U.S. Representatives raise concerns about restrictions on group settings for people with disabilities", 11/27/17 

HCBS Advocacy Website

"Guidance on Settings that have the Effect of Isolating Individuals Receiving HCBS from the Broader Community" from CMS, 3/17/2014

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

How the feds 2014 rule restricting group settings for people with developmental disabilities is a barrier to appropriate care

“Regulations that are at odds with the purpose and letter of the law have caused unnecessary suffering to individuals with ASD and their families for too long already. Why wait longer?” - Ed Dolan 

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

Ed Dolan from the Niskanen Center posted an excellent article last October, summarizing and expounding on the controversy over the 2014 federal Home and Community-Based Settings rule that attempts to restrict group settings for people with autism and other disabilities: “How Regulation Is Preventing Adults with Autism from Getting the Care They Need”, 10/16/17.

According to the HCBS rule, any group setting where services are provided to people with disabilities that resembles an “institution” is subject to “heightened scrutiny” by the federal regulatory agency CMS (the Centers for Medicare and Medicaid Services), making it less likely that the setting will be approved as a Home and Community-Based setting that may receive Medicaid funding. This is despite the fact that “institutions”, as they are strictly defined by Medicaid law, must be available to individuals eligible for their services and that that eligibility also allows the same individuals to waive their right to institutional care in favor of community settings with comparable services. Funding is then provided through “Medicaid Waivers” that allow states the flexibility to provide services in a variety of settings based on the needs and preferences of the individual. 

But the settings rule is being interpreted as a mandate for full community integration for all people with disabilities regardless of the appropriateness of care or the preferences of people with disabilities and their families. It has been used as an excuse to close programs and residential settings that serve people with more complex and severe disabilities and to thwart innovative programs that seek to create better options for people with a variety of disabilities.

Although Dolan concentrates on the autism spectrum, this article applies, as well, to people with other disabilities that present a range of needs that can only be met by states providing a full range of residential, work settings, day programs, and recreational and other services that meet the needs of this diverse population. 

Here are some excerpts from Dolan’s article:

The deinstitutionalization of people with mental illness did not go well for many people released from psychiatric facilities:

“For some, it resulted in ‘transinstitutionalization’ to prisons, homeless shelters, and emergency rooms. For others, it has meant living on the street…The situation of people with ASD is somewhat different, because their transition typically begins not from an institution, but from their families. Still, as we will see, they, together with their parents and guardians, find the same challenges in finding an appropriate community or institutional setting for treatment.”

The misinterpretation of the 1999 U.S. Supreme Court Olmstead decision:

“…From that date, institutional care would no longer be the one-size-fits all solution for the care of people with intellectual disabilities. In the years since, however, the federal government – acting through the Department of Justice (DOJ), the Administration on Intellectual and Developmental Disabilities, the Centers for Medicare & Medicaid Services (CMS), and the National Council on Disability – has interpreted Olmstead in a way that many think has turned the decision on its head.”

Quoting from the opinion of Justice Kennedy in Olmstead, “It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) 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. … In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” (Olmstead at 610).

Integration for all?

“What actually happens to such people, as adults, under the integration mandate? Sorry to say, they all do not live happily ever after, bagging groceries during the day, watching TV at night, and visiting the zoo with their group-home pals on the weekend. In reality, they often cannot find small group homes that will admit them. If they do get admitted, they risk being thrown out due to inappropriate and sometimes violent behavior, or because of the inability of staff to see to their needs while also keeping up with those of other residents under a 1:4 staffing ratio.”

Suggestions that adults with ASD remain at home with their parents:

“And what happens if Mom can’t deal with the frustrated and angry outbursts of 180-pound, 20-year-old Jimmy as easily as she did when he was a toddler? What if she is injured while trying to do so? What if Jimmy accidentally hurts a stranger while he and Mom are out shopping? Situations like that trigger 911 calls. Those, in turn, as Escher points out, often degenerate into a cycle of emergency room visits due to aggressive outbursts, hospitalizations under restraint or sedation, incarceration, crisis care placement, and nursing homes. Such measures can cost much more than appropriately staffed intermediate care options and do nothing to improve the patient’s welfare.”

“…Those who really want care for all might do better to shift the rhetorical focus to appropriate care and diversity of options. The goal should be to make it clear, to people who do not have close personal experience with ASD, that the breadth of the autism spectrum defies a one-size-fits-all solution.”

Broadening the coalition:

“It should not be hard to do so. After all, adult autism care is not an inherently partisan issue. ASD strikes without regard to parents’ political views. But drawing attention to the problems posed by regulators’ narrow interpretations of Olmstead may require changing the narrative.”

“Backers of current policy have seized the rhetorical high ground with their slogan of ‘community integration for all.’ Liberals are drawn in by the words ‘community’ and ‘integration,’ while (as Justice Kennedy warned) conservatives are easily sold on small group homes and parental custody as ways of providing care ‘on the cheap.’ But there are other ways to frame the policy debate.”

“Above all, the campaign for appropriate care and diverse options for adults with ASD should emphasize that such is the law, now. ASD advocates are not asking Congress to pass new legislation. They are not asking the Supreme Court to issue new interpretations of existing law. The Olmstead decision already explicitly recognizes the 'need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities.' Regulations that are at odds with the purpose and letter of the law have caused unnecessary suffering to individuals with ASD and their families for too long already. Why wait longer? “

Indeed. Read the full article here.

See also: 

VOR Olmstead Resources

VOR Comments to the U.S. Department of Justice on Regulatory Reform

"Who Decides Where Autistic Adults Live?" by Amy Lutz 5/26/15

"The Federal Government’s Quiet War Against Adults with Autism" by Jill Escher, 4/19/16