A Disability Organization Misleads Self-Advocates and Families to Promote a Call-in Campaign to Legislators

TASH, an influential disability organization that “advocates for human rights and inclusion for people with significant disabilities and support needs - those most vulnerable to segregation, abuse, neglect, and institutionalization”, recently sent out this Action Alert to self-advocates and families:

January 25, 2018

Dear Self-Advocates and Family Members,

We need you to take action right now! Our representatives and senators are hearing from Voice of the Retarded (VOR) and other parent groups that believe we should live in institutions and that the community is not a safe place for us to live. We need to tell them that the community is not bad and there are safe places. We need to tell them that there are many people with disabilities living in the community that are safe and happy, and have the support they need. So please ask your groups to do the following: 

• Call your legislators and tell them about how you live in the community and how you are happy. 
• Ask your members and other people with disabilities to write and share their story. 
• Go visit your legislators and tell them how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community. 
• Share this alert with others and ask them to do the same. 

Please email your letters to Tia Nelis, TASH's Director of Policy and Advocacy, at tnelis@tash.org.

Thanks,
TASH's Self-Advocacy Committee

As a parent of two sons with profound intellectual and developmental disabilities and as a member of VOR for more than 15 years, I am compelled to respond to the TASH Action Alert to correct misleading information and to stop the misuse of that information to promote a call-in campaign to legislators.

VOR’s Name

The name of VOR is VOR ! The organization was founded in 1983 as “Voice of the Retarded” at about the same time that TASH was changing its name from “The Association for the Severely Handicapped” to “The Association for Persons with Severe Handicaps”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations removed the word "Retarded" from their names and from the discussion of issues related to this segment of the developmentally disabled population.

"The Association for Persons with Severe Handicaps" eventually became TASH, just as "The Association for Retarded Citizens" became The ARC, and "Voice of the Retarded" became VOR. I believe VOR started using the acronym for the organization as its primary identification more than 10 years ago and the name was officially changed with the passage of Rosa’s Law in 2010. Rosa's Law removed the term mental retardation from most federal legislation and substituted the term intellectual disability. The definition did not change, however, and Rosa’s Law did not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

Institutional vs. Community Living

To say that VOR believes that people with disabilities “should live in institutions and that the community is not a safe place for us to live” is false and misleading. A Policy and Position Statement is on the VOR Website that includes these statements:

“VOR supports both ICF/IID homes and quality community-based service options based on individual need. VOR advocates for the right of individuals with intellectual and developmental disabilities and their families to choose from a full array of high quality residential and other support options including own home, community-based, and large settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)." 

and

“VOR supports safe and appropriate quality care in the community. When federally-licensed specialized settings (e.g., ICF/IID) are closed, individuals with profound I/DD, multiple disabilities, serious medical problems, and behavior challenges are removed to 'community-based' settings often with poorly trained staff and inadequate health and safety measures in place. Individuals with severe disabilities living at home or in other community settings often experience the same problems with poor care. By developing and promoting community care standards, VOR aims to address this widespread concern and avoid predictable tragedies, as reported in the media, state audits and peer-reviewed studies.”

Furthermore, VOR’s position on institutional care is consistent with the 1999 U.S. Supreme Court Olmstead decision. The importance of individual choice is repeated throughout Olmstead’s majority opinion as follows: “We emphasize that nothing in the ADA [Americans with Disabilities Act] or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”..."the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk...Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting..."..."For some individuals, no placement outside the institution may ever be appropriate.”..." Each disabled person is entitled to treatment in the most integrated setting possible for that person –recognizing on a case-by-case basis, that setting may be an institution.”

Safety in the Community

Safety in the community for people with disabilities is of paramount importance to most people with disabilities and their families. In January 2018, The U.S. Department of Health and Human Services, the Administration on Community Living and Office for Civil Rights issued a joint report on an investigation of community group homes. According to Disability Scoop in an article about the joint report, “An audit of three states found that officials routinely failed to follow up on incidents ranging from head lacerations to loss of life in violation of federal and state policy. The issues are believed to be systemic affecting people with developmental disabilities residing in group homes across the country.”

In other living situations where people with disabilities live in unlicensed and poorly supervised settings and without sufficient support services, incidents of abuse and neglect occur, but they often go undocumented.

While VOR is concerned with safety in all settings where people with disabilities live and receive services, VOR has never claimed that safety does not exist nor that it is not possible in community settings.

The TASH Action Alert

There is nothing wrong with self-advocates and families telling legislators “how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community,” but the implication in this Action Alert is that VOR is a threat to community living. On the contrary, VOR supports a full array of services and residential, employment, and educational options to meet the needs of a diverse population.

TASH owes an apology to its members, especially to self-advocates and families, whom the organization has misinformed. I hope that, at the very least, future pronouncements by TASH will be checked more closely for accuracy and will avoid unfounded accusations about other organizations.

Jill Barker
Ann Arbor, Michigan

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About TASH

About VOR

VOR Olmstead Resources

"Celebrating the 17th Anniversary of the Olmstead Decision: Opportunities and Choices"

Comments to the IACC from an MD addressing needs of people with severe autism

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). The following are comments from Lee Wachtel, MD, a child psychiatrist at the Kennedy Krieger Institute in Baltimore, MD:

Lee Wachtel, MD 
January 17, 2018

Hello, my name is Lee Wachtel, and I am a child psychiatrist working at the Kennedy Krieger Institute in Baltimore, where I run an inpatient unit for children, adolescents and young adults with autism who require hospitalization for severe, often life-threatening, and certainly life-limiting, challenging behaviors. I have been in this position for nearly 15 years, and would like to speak today on behalf of my patients, and their families, many of whom have remained under our care at KKI for years, right into adulthood.

The vast majority of our patients are significantly afflicted, and would be characterized in the DSM5 [Diagnostic and Statistical Manual on Mental Disorders] as having autism requiring extensive supports and with intellectual disability. They don’t come to KKI for their autism or ID, however, but rather for the severe self-injurious, aggressive and disruptive behaviors that they display, often within the context of further severe psychopathology that can run the gamut from anxiety, mood and psychotic disorders, and more. These kids are really suffering, and so are their families. These parents will move heaven and earth for their children – one of the hardest parts of the job is telling moms and dads on our waitlist that we don’t have a bed for their bloody and battered child TODAY – but none of our parents are glad that their child has autism, or see their son or daughter’s autism and associated suffering as part of neurodiversity. In fact, most of the parents would sell their soul for their child to not have autism. As one parent who spent 30 years campaigning for the best services for his son recently told me, “I would walk through perdition’s flames for my son, but I don’t buy into the autism fairytale.”

Not my words, but those of a parent who has walked the autism walk for 30 years. And I hear many such comments. I know very well that this type of response, and the mere existence of the types of severely afflicted autistic kids in our care, flies in the face of the overriding 2018 agenda for autism, where everything is rosy and diverse, and some even suggest the removal of the autism as a psychiatric illness. I would suggest that the DSM5 characterization of autism does not accurately describe the condition, and that there are likely many conditions currently all thrown together into the autism rubric, which only hinders science and our ability to make important advances to help everyone along this range of diagnoses. But I’m less for splitting hairs over diagnosis, and more for making sure that those who don’t currently fall into the happy and hopeful side of the diagnosis – at least not happy and hopeful today, but with the potential for so much improvement – still have a voice, and do not become the black sheep of the autism community just because they aren’t blogging or reciting soliloquies at Lincoln Center. Because these autistic kids with severe behavioral, psychiatric and medical concerns, as well as significant cognitive disability, really do exist, and so do their families, who are less than enamored with autism, and are frankly heartbroken and exhausted. These kids need our understanding and help just as much as the autistic child contemplating best strategies to succeed at college. And these kids will continue to need the support of the autism community as they become adults, as they will not be able to live independently, will require extensive supports and substituted decision-making, and can’t be pushed into models that just don’t meet their unique needs.

I encourage the IACC, and autism community in general to consider several things. First, the IACC needs to prioritize research on the treatment of self-injurious and aggressive behavior. These behaviors are highly prevalent — studies show about 1/3 of autistic kids engage in SIB and over half in aggressive behaviors, yet very little attention is paid to this devastating problem. The IACC should host a panel focused on these dangerous behaviors. Not only are these behaviors dangerous to the children and families involved, but they often preclude participation in inclusive, community-based educational and vocational programs. These behaviors are often physiological in etiology — typically from a co-morbid psychiatric disorder, and do not represent “communication” from non-verbal individuals. It is a medical problem that requires medical solutions.

Second, the IACC must promote a choice-based approach to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population.

Finally, we need to invite more parents of severely affected autistic children to have seats on the IACC. These parents represent children who can’t represent themselves, and they require a voice.

Thank you.

A Glossary of Terms for Understanding both Institutional Care and Home and Community-Based Services for DD

In Michigan, Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities are funded by a Medicaid HCBS Waiver called the Habilitation Supports Waiver (HSW). The HSW is meant to be a companion program with Medicaid-funded Intermediate Care Facilities for individuals with intellectual disabilities (ICFs/IID). The waiver allows the state to “waive” some Medicaid requirements to provide services to people eligible for institutional settings (including ICFs/IID) who choose to be served in community settings as long as the costs do not exceed that of institutional care. These services are available in a variety of community settings, including group homes, supported living homes, one’s own or family’s home, specialized day programs, and specialized work programs.

Although there is a great deal of pressure by some government agencies and advocacy groups to eliminate programs that provide services in group or “congregate” settings, their availability should be based on the needs and preferences of the individuals involved and not on an ideology that dismisses these programs as unnecessary or harmful to people disabilities.

The establishment of ICFs/IID in the early 1980’s was a welcome reform to the scandalous conditions in many institutions at the time. For better or for worse, Michigan has eliminated public ICFs/IID, although some individuals continue to need the level of care that can only be provided in ICFs or skilled nursing facilities. The public, including families of people with the most severe and complex disabilities, are mostly unfamiliar with the terminology related to ICFs/IID. A better grasp of the definitions used in the ICF program can result in a better understanding of both the ICF program and Home and Community-Based Services, so that people with intellectual and developmental disabilities receive the services they are entitled to in the settings that work best for them.

Recently, I came across an “ICF/IID Glossary” on a Website at the Centers for Medicare and Medicaid Services (CMS) that defines the terms that often come up when considering services and living situations.

Here are some excepts from the glossary that define terms and eligibility for services and programs:

Intellectual Disability (AAIDD)(2013)** 

An individual is determined to have an intellectual disability based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in adaptive skill areas; and the condition is present from childhood (defined as age 18 or less).

Intermediate Care Facility for Individuals with Intellectual Disabilities (42 CFR 435.1009)

Institution for individuals with intellectual disabilities means an institution (or distinct part of an institution) that --

1. Is primarily for the diagnosis, treatment, or rehabilitation of the intellectually disabled or persons with related conditions; and

2. Provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration of health or rehabilitative services to help each individual function at his greatest ability.

Institution (42 CFR 435.1009)

Institution means an establishment that furnishes (in single or multiple facilities) food, shelter, and some treatment or services to four or more persons unrelated to the proprietor.

[Note: an ICF/IID can be any setting from a small group home with four residents to a larger facility that serves many people in the same location. In Medicaid law an ICF/IID is considered an institution and is funded differently than community settings such as state licensed group homes and other programs. A distinguishing characteristic of an ICF/IID is that food, shelter (housing) and treatment services are included in the cost. In community settings, funding is fragmented and all the funding streams are often not taken into account when comparing costs. For example, with my sons who live in a group home, our community mental health agency funds services in the group home but my sons pay for room and board out of their Supplemental Security Income (SSI) from the federal Social Security Administration  and food is paid for separately. Cost comparisons between group homes and ICFs do not necessarily reflect these differences and end up exaggerating the costs of institutional care.]

Persons with related conditions (42 CFR 435.1009) 

[This defines who is eligible for an ICF/IID and therefore eligible for HCBS.]

Persons with related conditions relates to individuals who have a severe, chronic disability that meets all of the following conditions:

(a) it is attributable to, (1)cerebral palsy or epilepsy or (2) any other condition, other than mental illness, found to be closely related to intellectual disability because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of intellectually disabled and requires treatment or services similar to those required for these persons, (b) it is manifested before the person reaches the age of 22, (c) it is likely to continue indefinitely (d) results in substantial functional limitations in three or more of the following areas of major life activities: (1) self care; (2) understanding and use of language; (3) learning; (4) mobility; (5) self direction; (6) capacity for independent living.

Developmental Disability(P.L. 101-496)

A severe, chronic disability of a person 5 years of age or older which:

(a) Is attributable to a mental or physical impairment or is a combination of mental and physical impairments; (b) Is manifested before the person attains age twenty-two; (c) Results in substantial functional limitations in three or more of the following areas of major life activity: (I) self care;(ii) receptive and expressed language; (iii) learning; (iv) mobility; (v) self direction; (vi) capacity for independent living; and (vii) economic self sufficiency; and (e) reflects the person's need for a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are lifelong or extended duration and are individually planned and coordinated; except that such term, when applied to infants and young children (meaning individuals from birth to age 5, inclusive),who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.

Active Treatment (42 CFR 483.440(a)) 

[This is one of the services that distinguish ICFs/IID from other programs, but these types of services are also available in the HCBS program as determined through the individual service plan.]

Refers to aggressive, consistent implementation of a program of specialized and generic training, treatment and health services. Active treatment does not include services to maintain generally independent clients who are able to function with little supervision or in the absence of a continuous active treatment program.

Components of Active Treatment:

A. Comprehensive Functional Assessment (CFR42 CFR 483.440(c)(3)). The individual's interdisciplinary team must produce accurate, comprehensive functional assessment data, within 30 days after admission, that identify all of the individual's:

• Specific developmental strengths, including individual preferences;

• Specific functional and adaptive social skills the individual needs to acquire;

• Presenting disabilities and when possible their causes; and

• Need for services without regard to their availability.

B. Individual Program Plan (IPP) (42 CFR 483.440(c)). The interdisciplinary team must prepare an IPP which includes opportunities for individual choice and self management and identifies: the discrete, measurable, criteria based objectives the individual is to achieve; and the specific individualized program of specialized and generic strategies, supports and techniques to be employed. The IPP must be directed toward the acquisition of the behaviors necessary for the individual to function with as much self-determination and independence as possible and the prevention or deceleration of regression or loss of current optimal functional status.

C. Program Implementation (42 CFR 483.440(d)). Each individual must receive a continuous active treatment program consisting of needed interventions and services in sufficient intensity and frequency to support the achievement of IPP objectives.

D. Program Documentation (42 CFR 483.440(e)). Accurate, systematic, behaviorally stated data about the individual's performance toward meeting the criteria stated in IPP objectives serves as the basis for necessary change and revision to the program.

E. Program Monitoring and Change (42 CFR 483.440(f). At least annually, the comprehensive functional assessment of each individual is reviewed by the interdisciplinary team for its relevancy and updated, as needed. The IPP is revised as appropriate.

Community Integration (The Council)*

Refers to arrangements that enable individuals to live, work, learn and play side by side in the community with people who do not have disabilities.

Assessment (The Council)*

Refers to the process of identifying an individual's specific strengths, developmental needs and need for services. This should include identification of the individual's present developmental level and health status and where possible, the cause of the disability; the expressed needs and desires of the individual and his or her family; and the environmental conditions that would facilitate or impede the individual's growth, development and performance.

The Glossary explains some of the references cited and goes into more detail about the ICF/IID program.

See also a 2014 article by Tamie Hopp, "People as Pendulums:  Institutions and People with Intellectual and Developmental Disabilities", on the history of deinstitutionalization of people with ID/DD, the predictable tragic consequences, and often willful misinterpretations of the 1999 Supreme Court Olmstead decision. 

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