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