Where to begin? Guardianship and the Michigan Guardianship Association

In the rush of news and events over the past few months, it is hard to know where to begin to cover issues that affect people with DD and their families. The U.S. Congress failed to pass radical reforms to our health care system but succeeded in passing radical reforms to federal tax policies that included changes to Obamacare. Both efforts were done without holding public hearings that would have allowed the public and people who actually know something about healthcare, taxes, and the economy, and how they affect our population of people with intellectual and developmental disabilities, to weigh-in before the legislation was voted on.

Recently, Congress reauthorized CHIP, the federal Children’s Health Insurance Program, that enrolled 8.9 million children in 2016. CHIP was designed to cover uninsured children whose families have modest incomes but are not poor enough to qualify for Medicaid. It is paid for with federal and state Medicaid funds. The CHIP program was enacted in 1997 and has consistently received bipartisan and popular support. Nevertheless, it was held hostage to extract concessions while Congress battled over the federal budget and immigration.

Creepy sexual misconduct allegations overwhelmed the news, exposing a broader problem of bullying and harassment, some of it anonymous and on the internet. The problem extends way beyond official government and party politics. People with disabilities and their families are among the victims.

Next on the horizon will be attempts to rein in the cost of Medicaid, Medicare, and Social Security to reduce the deficit caused by tax breaks that most significantly benefit corporations and extremely wealthy individuals.

Meanwhile, life goes on. In our case, this has meant dealing with Danny B.’s 16 trips to the Emergency Department in 2017 and five hospitalizations for aspiration pneumonia. Consider also the life of a 24/7 caregiver of a daughter with severe disabilities as portrayed on Regie’s Blog: “Why I can’t take your call…”, 1/23/18.

I have been accumulating news stories and accounts of events that I want to dig into and write about, so I will begin with guardianship and a guardianship conference that I attended in October 2017.

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Why Guardianship?

The Barker Boys, Danny (41 years old) and Ian (33 years old), have profound developmental and intellectual disabilities. They are adults, but function at the level of infants less than one year old. They can let others know generally how they feel and whether they are happy or upset, but they do not have the ability to communicate in any specific way. They need someone to represent their interests and make decisions for them, because they are not able to act on their own behalf. 

In Michigan, Guardianship is granted by a Probate Court to protect individuals who are not capable of making or communicating decisions in some or all aspects of their lives. My husband and I have co-plenary (full) guardianships for both our boys who are developmentally disabled.

According to a variety of reports and studies (see, for example, pages 3-4 of a 2014 survey of state laws and guardianship practices), about 75% of all guardianships are obtained by parents, other family members, or close friends of the individual needing guardianship. People who do not have close family members or friends to take over this responsibility may have to rely on public or professional guardians who should be held to at least the same ethical standards and oversight responsibilities as families and friends. Michigan Guardianship law for people with DD [see pages 87 to 93 of the PDF version], assures that guardians have access to all the information they need to fulfill their responsibilities. It also provides numerous protections to individuals with DD to prevent unnecessary guardianship, to limit guardianship to only those areas where it is needed, and to promote the maximum amount of independence possible for each individual.

As co-guardians, my husband and I have the authority to represent Danny and Ian when needed, including in person-centered planning through our local community mental health agency, to have a say in how they are cared for, to give consent (or not) to services in the individual service plan, to consent (or not) to medical treatment, to have access to records that are the basis for these decisions, and to disagree with judgements made by others that are not in the best interests of our sons. We can also represent them in complaint and fair-hearing procedures to assure the accountability of service providers and agencies working on their behalf.

Without the protections of guardianship, Danny and Ian would forever be at the mercy of whomever is in control of the situation they find themselves in, whether or not that person knows them or cares about them. Guardianship clearly defines the authority to make decisions, the responsibilities of the court-appointed guardian to the individual and the court, and accountability of everyone involved to act in the best interests of the person under guardianship.

Michigan Guardianship Association

I joined the Michigan Guardianship Association (MGA) and attended their Fall Conference on 10/27/17. I joined out of a desire to establish connections with an organization that provides support and education for court-appointed guardians to help them fulfill their duties under the state’s guardianship laws. The MGA also advocates for the organization to the Michigan legislature on guardianship issues.

The Fall Conference focused on issues related to professional guardians who are appointed by the court and collect a fee for providing the service, but family guardians also participated. Attendance at the conference was an opportunity for social workers involved in guardianship to earn Continuing Education Units required by state licensing.

Most of the meeting agenda was about guardianship for adults who are aging, those with traumatic brain injury, and adults with mental illness. As is usually the case in reports and studies on guardianship, there are few distinctions made between different populations that are covered by guardianship laws. The DD population is a relatively small group with many characteristics that distinguish them from other adults who need guardianship. Developmental disabilities are lifelong and most people with DD do not accumulate money or property that cause many of the disputes associated with the guardianship of aging adults.

Speakers included a physician who is also a state legislator giving the physicians perspective; elder law attorneys who discussed Medicaid and long Term Care, Medicaid “spend downs", end-of-life decisions, and how to protect an individual’s assets. Also speaking were a community mental health worker discussing the issue of hoarding as a special designation in the DSM (the Diagnostic and Statistical Manual of Mental Disorders), a Probate Judge on the financial exploitation of vulnerable adults, and an attorney with an expertise in veteran’s benefits.

The DD population was not singled out at the conference and it is obvious that it is a minority among people who need guardianship. Unfortunately, many influential advocacy organizations for people with intellectual and developmental disabilities (ID/DD), such as The ARC Michigan, oppose guardianship for people with ID/DD, regardless of the severity or nature of the individual’s disability. The rationale for this is based on a set of questionable beliefs, to say the least. Among them is the belief that everyone with ID/DD can make and communicate their own decisions, although some do this in “non-traditional ways”. These groups promote Supported Decision-Making, a method based on the idea that all people with ID/DD can make their own decisions with support from an informal network of advisors. The advisors do not need to be court-appointed and do not bear any legal responsibility for ensuring the success of outcomes. Supported Decision-Making might help those who need guardianship the least, if at all. But as a replacement for guardianship, it does not require the protections of guardianship for those who are the most vulnerable.

The MGA supports guardians and maintains contacts with the state legislature to protect and improve guardianship for those who need it. The organization would benefit from having more emphasis on the needs of the population of people with intellectual and developmental disabilities and their families and more members from our community.

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See also: 

Guardianship vs Supported Decision-Making

Diluting Guardianship Rights

Issues to Consider Regarding Guardianship and Supported Decision-Making

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 

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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

Documents from the Michigan Home and Community-Based Medicaid Waiver Conference, 10/2017

The Michigan Association of Community Mental Health Boards (now called the Community Mental Health Association of Michigan) sponsored the 2017 Annual Home and Community-Based Waiver Conference last October. The written materials from the conference are available on the Community Mental Health Association (CMHA) Website.

NAME CHANGE: The Michigan Association of Community Mental Health Boards is changing its name - “…The Association’s new name will be the Community Mental Health Association of Michigan. This new name retains the words ‘community mental health’ to represent the association’s link to the community mental health movement that, fifty years since its genesis, is in robust and continual development. However, you will notice that the name no longer contains the word ‘Boards’. While the Association is still led by the members of the Boards of Directors of the state’s public Community Mental Health centers (CMHs) and public Prepaid Inpatient Health Plans (PIHPs) – with Board members making up 2/3 of the Association’s Member Assembly – the Michigan Mental Health Code (the state law under which the public BHIDD [Behavioral Healthcare and Intellectual/Developmental Disability services] system in Michigan is governed has not, for years, used the term ‘Board’ to describe the local and regional organizations that make up the public BHIDD system. Additionally, none of the Association’s members use the word 'Board' in their names.”

Local CMH agencies serve people with mental illness and developmental disabilities, as well as other populations needing public social, health, and behavioral services. Along with representing the Michigan Community Mental Health agencies, the CMHA represents the PIHP’s (Prepaid Inpatient Health Plans), the regional administrative agencies that, among other things, distribute Medicaid funds to local agencies.

I attended one day of the HCB Waiver conference in October and did not come close to covering all the topics offered. The CMHA has made available all the written materials for the conference sessions. In my experience, families usually find that topics that provide information on the services available in Michigan and how to access them are the most helpful to begin with. I recommend for starters the  written materials on the following topics:

• Children’s Special Health Care Services Program Overview
• Children’s Waiver Program Overview (CWP)
• Use of the Choice Voucher System in the CWP 
• Understanding the Medicaid Administrative Fair Hearings Process and New Managed Care Regulations 
• HSW Waiver Overview (Habilitation Supports Waiver for DD)
• Children’s Waiver Program – Advanced Issues 
• HSW Advanced Issues – Focus on Compliance and Quality 

I sometimes disagree with the interpretation of policies that are part of the discussion on Medicaid Waivers, but at least the written documents from the conference give families enough information to explore these topics further as well as providing state and local contacts that may be helpful in obtaining services for a DD family member.

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A quick reference to acronyms and their meanings:
 

HSW - the Habilitation Supports Waiver, the Michigan Medicaid Waiver for people with developmental disabilites

CWP - the Michigan Children's Medicaid Waiver Program

HCBS - Home and Community-Based Services

BHIDD - Behavioral Healthcare and Intellectual/Developmental Disability services system

CMH - Community Mental Health

PIHP - Prepaid Inpatient Health Plans; regional administrative agencies that distribute Medicaid funds to local agencies

U.S. Representatives raise concerns about restrictions on group settings for people with disabilities

Three U.S. Representatives wrote a letter to the Centers for Medicare and Medicaid Services (CMS) on 11/27/17 to ask for changes in guidelines for the federal 2014 Home and Community-Based Settings rule. John Faso (R-NY), Jackie Rosen (D-NV), and Raja Krishnamoorthi (D-IL) expressed their concern that the “Guidance on settings that have the effect of isolating individuals receiving HCBS from the broader community” unfairly discriminates against “disability-specific, congregate, farmstead, and lifesharing communities” and that the guidance "reflects a fundamental misunderstanding of how [such settings] operate,"

Many innovative housing projects and planned communities for people with disabilities have been developed in recent years, only to be threatened by a loss of Medicaid funding to pay for services in settings that are deemed by CMS too much like institutions. Such settings may be acceptable to CMS only after going through a process of “heightened scrutiny” to assure that they are integrated into the broader community. Individuals and organizations supporting these housing options have questioned the CMS requirement, saying that CMS lacks the authority to limit the choices of people with disabilities in determining where they want to live. [see the Legal Vulnerabilities of the HCBS settings rule]

The letter from the U.S. Representatives goes on to say,

“We are particularly concerned that the guidance may have the unintended impact of discouraging and ultimately phasing out congregate and lifesharing models which promote individual independence, community integration, and enhanced quality of life for all served by these communities. …In subjecting these communities to a heightened scrutiny standard, CMS has introduced significant uncertainty to the future of these communities.

“By painting all congregate and farmstead communities with a broad brush, CMS threatens to remove a critical choice from individuals looking for a setting that provides individuals with a community that supports inclusion, not seclusion. We applaud CMS’ intent in the 2014 final rule to protect patient choice and dignity, but urge CMS to revise its subsequent guidance to clarify that congregate and farmstead communities based on the lifesharing model are not subject to the heightened scrutiny standard. We understand that these communities would welcome third party certification (such as the Center for Quality and Leadership) as an alternative to the current broad brush policy.”

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More resources: The Coalition for Community Choice ; Together for Choice; Madison House Autism Foundation 

Christmas 2017

Michigan: Proposed changes to the Medicaid Manual based on the federal settings rule

From the ARC Michigan Governmental Affairs Update, December, 2017:

"The Medical Services Administration (Medicaid) has published proposed policy creating a new Medicaid Provider Manual chapter for Home and Community Based Services in compliance with the final federal HCBS rule. Public comment will be accepted until January 1; the policy has a proposed effective date of January 1, 2018."

Here are the proposed changes - read carefully and comment.

Mail comments [due January 1, 2018] to:

Heather Hill

Bureau of Medicaid Policy and Health System Innovation

Medical Services Administration

P.O. Box 30479

Lansing, Michigan 48909-7979

Phone: 517-241-9397

E-mail: HillH3@michigan.gov [Comments may be submitted by Email!]

Policy Subject: New Medicaid Provider Manual Chapter for Home and Community Based Services (HCBS)

Affected Programs: MI Health Link HCBS Waiver, MI Choice Waiver, Managed Specialty Services & Supports Waiver, Habilitation Supports Waiver

Policy Summary: The Michigan Department of Health and Human Services (MDHHS) has developed a new Medicaid Provider Manual chapter for HCBS that describes the requirements under the HCBS Final Rule. These requirements aim to improve the quality of the lives of beneficiaries and allow them to live and receive services in the least restrictive setting possible and be fully integrated in the community.

Purpose: To ensure compliance with federal HCBS requirements. 

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More information and commentary on the HCBS Rule from The DD News Blog.

Update on Medicaid Home and Community-Based Services

The final implementation of the controversial 2014 Federal Home and Community-Based Settings rule has been delayed by the Centers of Medicare and Medicaid Services (CMS) until 2022, but that has done nothing too allay the fears of many people with disabilities and their families that it may be used as an excuse to discontinue funding for needed services and programs.

State Transition Plans (STP) are important for protecting the rights of people with disabilities to appropriate services in settings of their choice that assure integration into the larger community appropriate to the needs of the individual.

Michigan has identified settings that will undergo “heightened scrutiny” to assure that they meet the conditions of the settings rule before they are finally approved or rejected for HCBS funding. There are also grounds for legal challenges to the rule and commentary that explains why the Federal rule has been so controversial.

The following are links to resources and information to better understand what is at stake in the implementation of the federal settings rule:

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HCBS Advocacy

This is a Website supported by the Association of University Centers on Disabilities (AUCD).

From here you can find information regarding your state, including State Transition Plans that have received initial or final approval from CMS. So far only five states - Tennessee, Washington, Oklahoma, Kentucky, Arkansas - and the District of Columbia have final approval for their STPs.

According to HCBS Advocacy, although implementation of the rule has been extended to 2022, the deadline for final statewide transition plan approval is still March 2019.

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The Michigan Health and Human Services Website on the “Home and Community-Based Services Program Transition”

“As the Department develops new opportunities for stakeholders to provide feedback on this project, information about these events and opportunities will be published on this webpage. If you have any questions about this project, please send an email to HCBSTransition@michigan.gov.”

“Heightened Scrutiny”:

from CMS, “Home and Community-based Setting Requirements” - Heightened Scrutiny:

“Importantly, any setting regardless of location that has the effect of isolating individuals receiving Medicaid home and community-based services (HCBS) from the broader community of individuals not receiving HCBS is also presumed to be institutional, and therefore requires information from the state to overcome that presumption and describe how the HCBS settings requirements are met. States have an obligation to identify settings that are presumed institutional. …[The] final regulation …describes the process of “heightened scrutiny” that states can use to rebut or overcome this presumption. In particular, the regulations indicate that a settings described above “will be presumed to be a setting that has the qualities of an institution unless the Secretary determines through heightened scrutiny, based on information presented by the state or other parties, that the setting does not have the qualities of an institution and that the setting does have the qualities of home and community-based settings.”

Heightened Scrutiny in Michigan: 

In Michigan: Providers have been notified if they are subject to heightened scrutiny. Family members are encouraged to ask their provider about their status with regard to state implementation of the federal rule. 

from the HHS HCBS Transition Program:

“For those providers whom the department may submit for further review by the Centers for Medicare and Medicaid (CMS) there will be a public comment period. During this time all members of the public, including family members, will have an opportunity to share their opinions about whether the setting is home and community based. These comments will be taken into consideration before the department makes the final decision regarding submission to CMS.”

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May 9, 2017 letter from CMS extending the deadline for full implementation of the settings rule:

“Extension of Transition Period for Compliance with Home and CommunityBased Settings Criteria”

“In recognition of the significance of the reform efforts underway, CMS intends to continue to work with states on their transition plans for settings that were operating before March 17, 2014 to enable states to achieve compliance with the settings criteria beyond 2019. Consistent with the preamble language, states should continue progress in assessing existing operations and identifying milestones for compliance that result in final Statewide Transition Plan approval by March 17, 2019. However, in light of the difficult and complex nature of this task, we will extend the transition period for states to demonstrate compliance with the home and community-based settings criteria until March 17, 2022 for settings in which a transition period applies. We anticipate that this additional three years will be helpful to states to ensure compliance activities are collaborative, transparent and timely.”

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From Together For Choice Blog, 11/14/17: 

TOGETHER FOR CHOICE

Together for Choice Meets with CMS Administrator Seema Verma

"Together for Choice was invited to meet with Seema Verma, CMS Administrator, on November 1, to discuss the future of Medicaid. Approximately twenty other organizations participated in this invitation only meeting. The focus of the discussion was CMS’s Settings Rule which defines what constitutes a “community” setting and is therefore eligible for Medicaid waiver funding. I was the only person at the meeting who advocated for choice. I argued that the Settings Rule should be changed to honor the choices of individuals and their families regarding where to live and spend their days and to expand residential and day programming options. All of the other participants said that they did not want any changes to the Settings Rule or the CMS guidance under the Rule.

"Administrator Verma stated that she wanted Medicaid to be beneficiary focused and to put people first. She also said that she wanted to provide the states with more flexibility on administering Medicaid programs. In fact, she said that she wanted to give states an 'unprecedented level of flexibility.' She also acknowledged that individuals with disabilities receiving Medicaid should be viewed differently from non-disabled individuals receiving Medicaid. She wants the states to be creative and innovative in developing Medicaid programs and she repeatedly said that she wants less process and more focus on outcomes. In that connection, she said that CMS will be developing a Medicaid scorecard for states…

"Brian Neale, the head of Medicaid services at CMS also spoke. He indicated a preference for revising the CMS guidance to address the unintended consequences of the Rule rather than amend the Rule.

..."We will continue to advocate for choice by following up with Administrator Verma and Director Neale. Please join our voices to preserve choice and expand quality options by joining Together for Choice. Click HERE to join."

Scott Mendel
Chairman, Together for Choice

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Misericordia’s Developmental Training Program No Longer Subject to “Heightened Scrutiny”

2/2/2017

...“In early November, Illinois issued for public comment a draft of its transition plan. The plan listed all the facilities in the state that it believed should be subject to 'heightened scrutiny.' Misericordia’s DT program was one of the facilities on the list. The reason the state gave for subjecting Misericordia’s DT program to 'heightened scrutiny' was that it was located on a campus and was close to Misericordia’s ICF/DDs. We immediately asked all of our families with a family member living in a Misericordia CILA [Community Integrated Living Arrangement] (these are the individuals receiving “waiver” funding) to submit a public comment to HFS explaining how Misericordia’s DT program does not isolate their family member from the broader community.

• We asked each family to include in its comment: all of the activities their family member engages in both on and off campus to show how full and integrated their life is. 
• We asked the families to explain that their family member was engaging in the employment opportunities and other activities they choose. 
• We also had the families point out that the state was applying the wrong standard in deciding that DT should be subject to heightened scrutiny. 

"We explained that the rule (quoted above) does not require heightened scrutiny just because a setting is located on a campus and is close to an ICF/DD. In fact, the CMS rule says nothing about location. Instead, heightened scrutiny is limited to settings that isolate individuals. By having each family explain how their family member is not isolated, we were able to show that DT did not come within the settings that required heightened scrutiny.”…

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

from Covington and Burling, LLP, 1/17/17

“We believe that both the regulations and subsequent CMS guidance can be challenged as exceeding CMS’s authority. The effect of the regulations is to limit the choices of living situations for individuals with disabilities, and to replace the preferences of individuals, families and guardians with the preferences of CMS as to which setting best suits the needs of a particular individual.” 

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“The Federal Government’s Quiet War on Adults with Autism” 

by Jill Escher, 4/19/16

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The Coalition for Community Choice and the Madison House Autism Foundation have been following the implementation of the Federal settings rule since 2014. They have extensive knowledge of State Transition Plans and the effort to preserve innovative housing solutions for people with autism and other developmental disabilities. For questions, see contact information here.

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Another threat to replacing the preferences of individuals and their families and guardians with the preferences of CMS and federally-funded advocacy organizations, is the promotion of Supported Decision-Making (SDM). SDM is based on the belief that all people with disabilities can make and communicate decisions for themselves regardless of the nature or severity of their disabilities. Many SDM advocates refuse to acknowledge that disability can impair an individual's capacity to make decisions and they support the total elimination of guardianship. 

See Guardianship vs. Supported Decision-Making

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"The idea that one residential model is appropriate for the entire spectrum of intellectual ​and developmental disability — from college-educated self-advocates to profoundly impaired individuals at risk of detaching their own retinas or bolting into traffic — is patently absurd."

by Amy Lutz in "Myth - Truth", an article on Pennsylvania's proposed bill to close all Intermediate Care Facilities for Individuals with Intellectual Disabilities

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"VOR Celebrates the ADA and Recognizes the Full Meaning of the Olmstead Decision"

The Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision protect people with disabilities from discrimination in their choice of residential settings, but they do not exclude the choice of institutional settings necessary for individuals to receive the services they need, nor do they ban congregate settings of more than 4 individuals with disabilities receiving services in a group setting.

See also, 

VOR Olmstead Resources

and

“The Olmstead Decision has been Misinterpreted”


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HCBS Update as a Word Document