Thursday, July 21, 2016

Michigan Primary Election, August 2nd, 2016

The first week in August is an awful time to hold a primary election. It’s almost as if the political parties didn’t want too many people to vote. Hmmm? That’s enough to make me want to vote.


On August 2nd, 2016, there will be a primary election in Michigan to elect candidates for office who will be on the ballot in November. Because of gerrymandering and other perfectly legal political shenanigans, many, if not most, areas of the State are heavily weighted to assure political domination by one party or the other. This means that the primary election may be your best shot at making sure that state and local candidates that you favor win in November.

This is a column by Brian Dickerson from the Detroit Free Press, July 2, 2016, describing the importance of participating in primary elections:

"For those who mean to exercise the rights our revolutionary predecessors took such trouble to secure, July is no time for a sabbatical.

"That’s especially true in Michigan, where partisan manipulation of political boundaries has made most November election contests for legislative or congressional office hopelessly one-sided. In most instances, voters who wait until fall to start paying attention will forfeit any meaningful opportunity to participate in the selection of their state and local representatives."


Here is a link
 to the Michigan Secretary of State’s Website with a list of all the candidates running in August. To find out about local issues on the ballot, you should be able to find this on your County Website. Here is information about Washtenaw County. 

In addition, the NPR radio station at Easter Michigan University, WEMU, has ongoing coverage of local candidates and issues:

Soapbox Summer Series

DURING MORNING EDITION AND ALL THINGS CONSIDERED

"WEMU’s popular election feature, 'Soapbox Summer' has returned for the 2016 primary election season. Any candidate whose name will appear on the August 2 primary ballot in Washtenaw County is eligible to participate. No reporter questions, no interruptions or interference. Soapbox summer gives candidates the opportunity to say exactly what they want, how they want. It gives WEMU listeners and area voters the opportunity to hear a candidates' message, unfiltered. Soapbox Summer will begin airing during Morning Edition with David Fair beginning Monday, July 11th and will be rebroadcast on All Things Considered as well as online at wemu.org."

Go forth and vote.

Tuesday, July 19, 2016

Project TENDR: Targeting Environmental Neuro-Developmental Risks


A consensus statement  from Project TENDR, "Targeting Environmental Neuro-Developmental Risks" was published in Environmental Health Perspectives, Volume 124/Issue 7/July 2016. The following is from the summary with additional excerpts from the consensus statement:

"...Leading scientific and medical experts, along with children’s health advocates, came together in 2015 under the auspices of Project TENDR: Targeting Environmental Neuro-Developmental Risks to issue a call to action to reduce widespread exposures to chemicals that interfere with fetal and children’s brain development. Based on the available scientific evidence, the TENDR authors have identified prime examples of toxic chemicals and pollutants that increase children’s risks for neurodevelopmental disorders. These include chemicals that are used extensively in consumer products and that have become widespread in the environment. Some are chemicals to which children and pregnant women are regularly exposed, and they are detected in the bodies of virtually all Americans in national surveys conducted by the U.S. Centers for Disease Control and Prevention. The vast majority of chemicals in industrial and consumer products undergo almost no testing for developmental neurotoxicity or other health effects….This consensus statement lays the foundation for developing recommendations to monitor, assess, and reduce exposures to neurotoxic chemicals. These measures are urgently needed if we are to protect healthy brain development so that current and future generations can reach their fullest potential."

A Call to Action


“The TENDR Consensus Statement is a call to action to reduce exposures to toxic chemicals that can contribute to the prevalence of neurodevelopmental disabilities in America’s children. The TENDR authors agree that widespread exposures to toxic chemicals in our air, water, food, soil, and consumer products can increase the risks for cognitive, behavioral, or social impairment, as well as specific neurodevelopmental disorders such as autism and attention deficit hyperactivity disorder (ADHD) …This preventable threat results from a failure of our industrial and consumer markets and regulatory systems to protect the developing brain from toxic chemicals. To lower children’s risks for developing neurodevelopmental disorders, policies and actions are urgently needed to eliminate or significantly reduce exposures to these chemicals. …”

Majority of Chemicals Untested for Neurodevelopmental Effects

“...Only a minority of chemicals has been evaluated for neurotoxic effects in adults. Even fewer have been evaluated for potential effects on brain development in children …Further, toxicological studies and regulatory evaluation seldom address combined effects of chemical mixtures, despite evidence that all people are exposed to dozens of chemicals at any given time.”

Need for a New Approach to Evaluating Evidence

"...Some chemicals, like those that disrupt the endocrine system, present a concern because they interfere with the activity of endogenous hormones that are essential for healthy brain development. Endocrine-disrupting hormones (EDCs) that are essential for healthy brain development include many pesticides, flame retardants, fuels, and plasticizers. One class of EDCs that is ubiquitous in consumer products are the phthalates. These are an emerging concern for interference with brain development and therefore demand attention..."

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Environmental Health Perspectives  (ISSN-L 0091-6765) is a monthly peer-reviewed journal of research and news published with support from the National Institute of Environmental Health Sciences (NIEHS), National Institutes of Health, U.S. Department of Health and Human Services.

Monday, July 18, 2016

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

From VOR, the best Website for Olmstead Resources

The Department of Justice (DOJ) recently recognized the 17th anniversary of the U.S. Supreme Court Olmstead decision by pointing out the strides that have been made in providing more opportunities for individuals with disabilities in mainstream American life. As we celebrate this aspect of the Olmstead decision, let us not forget the fullness of the ruling and the emphasis the Court placed on individual choice to protect health and safety and the basic rights of individuals with intellectual and developmental disabilities (I/DD). 

Too often, some disability rights advocates and federal agencies have read Olmstead as a mandate for all individuals with I/DD, regardless of their individual needs, to be served in community-only settings. Federal “Olmstead enforcement” activities are an example of how some have misread the Olmstead decision and the Americans with Disabilities Act (the ADA) to the detriment of the individual rights of those who were intended to be the beneficiaries of these landmark actions. Driven by the DOJ Civil Rights division and the Administration for Community Living (ACL) of the Department of Health and Human Services, these activities are aimed at eliminating opportunities for individuals with I/DD to live and work in more structured, congregate settings which provide higher levels of care, including nursing, therapy and behavioral supports. While community living may work well for many people who are capable of making decisions with a little help, congregate settings furnish life-sustaining services for those who need more care to assure their health and safety.

By closing down congregate homes and specialized work settings for individuals who choose and require these programs, Olmstead enforcement actions have had the effect of denying Americans with I/DD the freedom to choose where they live and work and with whom they associate, even going so far as to indicate just how many people with I/DD may live and work together in the same setting.

In pursuing its one-size-fits all agenda, the DOJ fails to appreciate that it is undermining its own recognition of the fact that people with I/DD are not a monolithic group and should be treated as individuals:

"...public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do,” (U.S. Dept. of Justice analysis of ADA)

Ironically, DOJ enforcement activities target the homes and workplaces of many of the most fragile individuals with disabilities, despite the Civil Rights Division’s pledge,

“to uphold and defend the civil and constitutional rights of all individuals, particularly some of the most vulnerable members of our society." (Emphasis added.)

These actions which restrict freedoms for people with I/DD are happening in direct contradiction to the law and Supreme Court decision that DOJ and ACL profess to be upholding. 

Fortunately, a fair and honest reading of Olmstead provides a path that maximizes the living and work options for individuals with I/DD. While encouraging the maximum community integration, Olmstead makes the individual with disabilities the ultimate arbiter of what she or he believes is best. The Court's respect for choice is recognized in the second prong of the holding which gives the individual the right to reject a placement, regardless of what anyone else thinks is best for her or him:

“(b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual,” Olmstead v. L.C., 527 U.S. 581, 587 (1999).

Justice Ginsburg expanded on the reason for this right in her majority opinion:

“...[N]othing in the ADA 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." Olmstead, at 601 – 602.

Justice Ginsburg went to explain the ongoing role of large facilities in her concurring opinion:

“[For some individuals, no placement outside the institution may ever be
appropriate . . . . ‘Some individuals, whether mentally retarded or mentally ill,
are not prepared at particular times - perhaps in the short run, perhaps in the
long run - for the risks and exposure of the less protective environment of
community settings;’ for these persons, ‘institutional settings are needed and
must remain available.’ ” . . . 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” Olmstead, at 605.

Sadly, the DOJ and ACL actions sweeping all individuals with I/DD into a monolithic group that can only be served in one officially sanctioned manner (i.e. small houses in urban settings) have led to tragic results for thousands of individuals with severe and profound I/DD, both in terms of quality of life and longevity of life. Investigative reporting by newspapers across the country (including The Washington Post and The New York Times) have documented the tragedies that have befallen people with I/DD when they have been forced out of their congregate care homes into a community unprepared to meet the health and safety needs required for their very survival.

Intermediate Care Facilities for individuals with Intellectual Disasbilities (ICF/IID), disability farms, intentional communities, sheltered workshops and facilty-based day programs all serve people with more intensive needs yet are labeled by the DOJ as "institutional" and out of compliance with Olmstead. Thus, the tragedy warned against by Justice Kennedy in Olmstead has come to pass:

“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.” Olmstead, at 610.

By focusing on the freedom of the individual to choose from a range of options, the ADA and the Olmstead decision reflect a uniquely American attitude toward services for the disabled, as well as the inherent goodness and compassion of the American people. Congress and the Supreme Court did not intend for the ADA and Olmstead to be used to eliminate opportunities and basic freedoms for our most vulnerable citizens. Rather, this law was meant to expand choices and protect rights.

The Congress must not allow DOJ and ACL to misuse Olmstead and the ADA to create a sub-class of American citizens whose personal lives are dictated by a one-way-suits-all lifestyle. As we celebrate the ADA and the anniversary of Olmstead, let’s protect and promote their full meaning so that all Americans with disabilities can live safe and happy lives of their choosing.

VOR is a national disability advocacy organization which supports a full continuum of quality care options for individuals with disabilities and individual choice of services. VOR supports community settings for those who choose and can benefit from them, but we also recognize and advocate for individuals with profound and other high needs who choose and require more intensive care in congregate settings.

Thursday, July 14, 2016

Understanding Guardianship Part 3: Public guardians and Wards of the State


A 2005 report, “Wards of the State: A National Study of Public Guardianship” by Teaster, Wood, Karp, Lawrence, Schmidt, and Mendiondo, gives this definition of public guardianship:

Public guardianship is the appointment and responsibility of a public official or publicly funded organization to serve as legal guardian in the absence of willing and responsible family members or friends to serve as, or in the absence of resources to employ, a private guardian. Since the 1960s, states and localities have developed a variety of mechanisms to address this ‘unbefriended’ population, often serving as ‘guardian of last resort.’”

The report is written from the point of view that if a mentally incapacitated person needs a guardian and has a willing and responsible family member or friend who can take on that role, this is better for the individual and less costly for the state. But if there is no one to do this, the state must find a way to fill the need for guardians. The relevance of this report is that it highlights conflicting policies within the system of care and protection for people with disabilities. We now have federally-funded advocacy organizations and agencies that, rather than encouraging families and friends to step up to the responsibility of becoming guardians, are doing more and more to discourage guardianship. This is occurring through the promotion of less formal (and less accountable) means of making decisions for people who are mentally incapacitated through Supported Decision-Making.  

The “Wards of the State" study is a combination of an extensive literature search on the topic of public guardianship, a review of case studies, and the results of surveys involving guardianship program staff from Florida, Illinois, Indiana, Iowa, Kentucky, Missouri and Wisconsin with additional material from phone interviews and focus groups. [The page numbering of the 2005 report is inconsistent and confusing. Instead of using the page numbers at the bottom of the page, I will give you the page number of the downloaded PDF file of the report: p. 8 of the PDF]

[A more recent report from 2007, “Wards of the State: A National Study of Public Guardianship” by Teaster, Wood, Lawrence, and Schmidt, is based on the 2005 report and was published in the Stetson Law Review, Vol. 37. According to a footnote on p. 194,  “Although the data used in the study were collected in 2004, this Article includes updated statutory information added after the project report...This Article relies heavily on the results and summaries developed by the Authors in [the 2005] Public Guardianship Study…” The 2007 report is based substantially on the 2005 report and comes to similar conclusions.]

There is conflicting evidence on the effect of public guardianship on people who are disabled because of advancing age or who acquire disabilities at other stages in life for a variety of reasons. One observation of the 2005 report  is that, “In truth, we have very little data to refute or substantiate this. Statistics are scant. The number of adults under guardianship in the United States remains unknown...This paucity of research makes it difficult to assess the results of guardianship reform efforts.” [p. 21 of the PDF]

The 2005 and 2007 Public Guardianship Reports cover the recent history of guardianship, its abuses, and attempts to reform it. Here are some highlights of the report that I found interesting and relevant to todays controversies over guardianship and the promotion of Supported Decision-Making as a substitute: 
  • “Wards. Individuals under guardianship appear to have shifted somewhat from the older adult population (e.g., persons aged 65+) to a younger population (e.g., persons ages 18-64). In many ways, reported anecdotally, younger wards reflect a more challenging client mix. Primary diagnoses of wards were typically  developmental disabilities, mental illness, and mental retardation [intellectual disabilities]… rather than AD [Alzheimer’s Disease] or other dementias… “
  • “Public guardianship programs may be categorized into four distinct models…(1) a court model; (2) an independent state office; (3) a division of a social service agency; and (4) a county agency. [p. 180 of PDF] Most states run public guardianship programs as a division of a social service agency, although this system is the most prone to conflict of interest between the agency’s role of a guardian (monitoring and advocating for services) and the role of a social services agency (providing for services). [p.6 of the PDF]
  • “Overwhelmingly, when respondents provided information on strength, weaknesses, opportunities and threats, the greatest strength was that of the public guardianship staff. Most staff members [of agencies providing public guardian services] worked under difficult conditions with less than adequate remuneration and with difficult clients. Turnover of staff was reportedly surprisingly low. The predominant weakness of programs was the lack of funding…” [p. 8 of PDF]
  • “In most states, a majority of public guardianship wards are institutionalized….The Olmstead case provides a strong mandate for re-evaluation of extent of institutionalization of public guardianship clients.” [p. 180 of PDF] [This has been a contentious issue in states that are pursuing deinstitutionalization contrary to the wishes of facility residents and their families. Overzealous state guardians have at times been perceived as acting for the interests of the state to close institutions, rather than in the wards' best interests. See also, “The Olmstead Decision has been Misinterpreted]
  • “Not surprisingly, …was the assertion, by nearly every program in every state of a critical lack of funding, which translated into circumscribed services for wards and inadequate staffing to meet ward needs. This is more significant now than in the past, as the demographic imperative portends more and more individuals needing guardianship services.” [p. 9 of PDF]

These are among the conclusions of the report [p. 12 of PDF]:
  • States have significant unmet needs for public guardianship and other surrogate decision-making services.
  • Staff size and caseload in public guardianship programs show enormous variability.
  • Public guardianship programs are frequently understaffed and underfunded.
  • Although some public guardianship programs use ratios to cap the number of clients, most serve as guardian of last resort without limits on intake.
  • Funding for public guardianship is from a patchwork of sources, none sufficient.
  • Very little data exist on public guardianship.
  • Oversight and accountability of public guardianship is uneven.

This report is a comprehensive study - I have barely scratched the surface. 

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Supported Decision-Making has been promoted as a replacement for guardianship despite a lack of standards and very little evidence of its effectiveness in protecting people who are mentally incapacitated. When advocates and federal agencies speak pejoratively about guardianship and charge that people who seek it are depriving their loved-ones of their rights, is it any wonder that state courts and public agencies have difficulty in finding family members and personal friends of the individuals involved who are willing to be guardians? If the state can’t get families and friends to take on the responsibility of guardianship, the increased use of public guardians as “the last resort”, seems inevitable. Is it not likely that the unintended consequences of the Supported Decision-Making movement will be a detriment to the people they are claiming to help?

Saturday, July 9, 2016

DD Programs and Services: Defunded and Dismantled

Here is a list of news articles I have collected since June 24, 2016 announcing program closures, Medicaid cuts, and endless waiting lists for services for people with DD and their families. It seems that DD services are the perfect target for states and local governments to “save” money and balance budgets. As for Home and Community Based Services (HCBS), the 2014 HCBS rule from the federal government that is scheduled to be fully implemented by March 2019 is the perfect excuse to "liberate" people from needed services while claiming to protect their civil rights. 

Wyoming: “Wyoming cuts freeze enrollment in treatment for disabled” - The Wyoming Department of Health will have $90 million in cuts out of a $975 million budget. The state will also lose $41 million in federal funds. The state will freeze the DD waiver program, provider rate cuts may force some providers out of business, and Medicaid will no longer cover fillings, dentures, hospital calls, prescriptions and other services for adult dental care patients.

New Jersey: “Audit: Move to group homes caused problems for some disabled people in N.J.” - Two intermediate Care Facilities for people with intellectual disabilities were closed ostensibly to save money, but community living resulted in problems for many of the 204 people with profound disabilities who moved: poor quality care, missed medical appointments, and an inability to participate in needed programs because behavioral problems were not addressed. One client went two years without a functioning wheelchair and another consumed foods that were medically harmful and could have caused choking.

Kansas: “State cuts to affect services to disabled” -  “…service providers…saw a 4 percent rate cut to targeted case management and intermediate care facilities. This means people who depend on these services can expect to see less of them in the near future.” One provider of services pointed out that for every dollar spent on DD programs, the federal government contributes 60 cents. “For this reason, he believes making cuts to programs that support those with disabilities is an inefficient way of balancing the budget, as the state will see less than half the amount cut returned to the general fund…we shouldn't balance those cuts on the backs of the poor and disabled.”

Tennessee: 

Chatanooga -Regulations end partnership that allowed adults with disabilities to work handling recyclables” - The Orange Grove Center in Chatanooga announced that it will close after 24 years. It's a substantial change to a longstanding partnership regarded by most as a win-win: the city received a service at an affordable price while providing jobs to members of a historically marginalized population that might struggle to find work.” The reason cited is the federal HCBS rule that “requires” that services be fully integrated and support full access to the greater community. 

[NOTE: This is a common though incorrect interpretation of the HCBS rule. There are no specific requirements that mandate a maximum size for settings or that prohibit funding of congregate settings (more than 3 people with disabilities served together) or that prohibit a setting from serving all or primarily people with disabilities.]      

Johnson City:Dawn of Hope transitioning people with disabilities out of facility, in to community” -  “At Dawn of Hope over 200 people with a broad range of disabilities get services, from those who are able to work, to those who are non-verbal, not able to walk on their own, and who need around-the-clock care…” To comply with the federal HCBS rule, (see note above), the facility has been getting people out into the public, though some refuse to go and staffing for some people is a problem. While some are looking at work opportunities, for those with more severe disabilities this has been extremely challenging. 

Washington State:Caregiving company departing county” - “Creative Living Services, based in Tukwila, announced in June that it is pulling out of serving clients in Jefferson County…because of what it called ‘extreme staffing shortages’ and pay rates that it also says are ‘not sustainable or competitive’ in the area…Creative Living Services is the only company currently approved by the state to serve adults with disabilities and assist them to live and assist them to live as independently as possible, often with each other.”

Ohio: DODD report shows most don’t choose community” - Ohio has announced the closure of two Development Centers (Intermediate Care Facilities for people with intellectual disabilities) by 2017. So far this has resulted in most affected individuals choosing to move to other private congregate facilities or developmental centers. “Only 27 individuals of the 89 who have left [the centers] have sought waiver housing”, smaller homes in community settings with HCBS funding. Many of those who have moved have suffered incidents such as an unanticipated hospitalization or nursing home stay, arrest or detainment by law enforcement, or bodily harm.”

Texas: “Medicaid Cuts Affect Children with Developmental Disabilities” - “Cuts in medicaid funding are making it more difficult for Texas children with developmental disabilities to get the help they need….The North Texas Rehab Center has announced it will not renew its contract with the Early Childhood Intervention program….It's the unfortunate effect of $350 million in medicaid cuts that was earmarked for pediatric therapy.”

Illinois: “Editorial: Illinois fails a moral test” - “During the past fiscal year, Illinoisans were at the mercy of a state budget impasse that disrupted institutions, programs and lives…For the past decade, however, the needs of people with intellectual and developmental disabilities have been chronically neglected by those in power…The consequences of that neglect make it more and more difficult for area agencies to serve the needs of people who, as the late Sen. Hubert Humphrey once said, are in ‘the shadows of life.’”

Wisconsin: “Paul Lundgren: Finding housing is very hard for the developmentally disabled” - A married couple with developmental disabilities finds it almost impossible to find appropriate housing despite having a housing voucher that guarantees payment of rent.  “…no preventive measures are designed to help people such as Shawn and Terri avoid homelessness. They will have to become homeless before anyone will help.”

Pennsylvania: “Families Face Indefinite Wait for Services” - Supports are available until age 21, then families experience "falling over the cliff”. Pennsylvania has a waiting list of 14,000 people waiting for Medicaid funding through the “Medical Assistance home and community-based waiver” with nearly 5,000 people on the “emergency list.”

Thursday, June 30, 2016

Understanding Guardianship Part 2: The Michigan "Preventing Guardianship" Project, 2002 - 2004

Two of the goals of the 1998  Michigan “Task Force on Guardianship and Conservatorship…” were seemingly contradictory:  to reduce the number of unnecessary guardianships and  conservatorships and to guarantee “an appropriate number of qualified and concerned guardians”. The Task Force report did not include how the Task Force would ascertain that a guardianship was unnecessary or the number of guardianships that were actually found to be unnecessary in the course of reporting on guardianships in Michigan. 

State Courts complain about the lack of guardians available for people who have no willing friend or family member to take on the responsibility of guardianship, at which time the courts are impelled to turn to professional state or corporate guardians. It is my guess (I’m still looking for definite answers to this question), that there are more abuses in the public guardian system because the relationship between public or state guardians and their wards is less personal and is more fraught with conflicts of interest. Could it be that the aggressive approach of disability advocates to discourage potential family guardians from seeking guardianship has the effect of pushing courts into using less desirable professional and state guardians? By always speaking of guardianship in a pejorative way and by portraying the desire to protect a disabled family member with guardianship as wanting to take away the person's rights, advocates may exacerbate the problem of state courts not having enough guardians available to protect people who have no one else to help them. 

Here is an example of a campaign in Michigan that was supposedly launched to reduce guardianships but was turned on families and others close to people with developmental disabilities to shame them into never seeking the protections of guardianship.

Advocates for people with developmental disabilities, including Michigan Protection and Advocacy Services (MPAS) and the ARC Michigan, had been leading a long-term campaign to dissuade parents and other family members from using Michigan’s guardianship law to acquire decision-making authority for their developmentally disabled loved-ones who cannot make decisions for themselves. Some of the advocates’ activities were funded by the Michigan Developmental Disabilities Council with federal funds under the Developmental Disabilities Assistance and Bill of Rights Act (The DD Act).

From 2002 – 2004, the Michigan DD Council awarded a grant of $200,000 to Washtenaw Association for Community Advocacy (a local ARC chapter) and Michigan Protection and Advocacy Services for the “Preventing Guardianship” project. Although the stated purpose of the grant was to reduce the number of guardianships in Michigan, it was clear from the grant proposal that the project leaders philosophically opposed guardianship for people with developmental disabilities, even those with the most severe disabilities. Promoting their philosophy was central to the “Preventing Guardianship” project. 

Families were subjected to anti-guardianship activities, including public meetings that were supposedly held to give information on alternatives to guardianship, but were in reality for the purpose of proclaiming the evils of guardianship and shaming families into believing they would be depriving their loved ones of their civil rights by contemplating guardianship.  This is despite a Michigan guardianship law that protects developmentally disabled people from neglect, exploitation, and abuse. The law contains extensive protections against unwarranted and overly restrictive guardianships. By undermining state law and ignoring DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers, the DD Act-funded project may have resulted in making people with DD more vulnerable to neglect, exploitation, and abuse and families less equipped to protect them.

Public agencies and organizations were also targeted to persuade them to adopt practices and position statements that reject the use of guardianship and proclaim that it is a denial of civil rights. The expectation was that organizations that provide supports to people with developmental disabilities “…will change policies and adopt position statements that reflect an attitude and philosophy recognizing that guardianship is a denial of self-determined lives, civil rights, and that alternatives should be used.”

Parents and other family members were confused and often offended by the advocates unwillingness to acknowledge that some people with DD are not capable of making some or all decisions for themselves. Especially offensive was the accusation by advocates that family members seeking guardianship were allowing the worth of their loved-ones to be diminished by having a court declare their disabled family member incompetent. There were also attempts to exaggerate the difficulty of getting guardianship in the Probate Courts by statements from advocates who said the process was expensive, difficult, and exhausting and should be avoided at all costs. In fact, Michigan Probate Courts are usually family-friendly and most parents obtain guardianship without an attorney. Some Probate Courts offer help to families before a guardianship hearing that includes helpful references to the law and other educational materials on their Websites. As long as the person who needs a guardian is eligible for SSI, there are no court fees. 

Groups opposing guardianship by family members who accept federal funds under the DD Act with enthusiasm, usually reject DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers regarding the services and supports they receive. Ignoring DD Act policy and undermining state law that protects developmentally disabled people from neglect, exploitation, and abuse should not have been rewarded with DD Act funds

Michigan’s law for guardianship for people with developmental disabilities: start here and navigate forward to other sections by clicking on the navigation arrow. 

Wednesday, June 29, 2016

Understanding Guardianship Part 1 : Facts and Data


Opposition to guardianship for people with developmental disabilities by disability rights advocates has been growing over the last twenty years as more funding becomes available for promoting alternatives to guardianship. Supported Decision-Making (SDM) is the most recent initiative that promotes “a process in which adults who need assistance with decision-making…receive the help they need and want to understand the situation and choices they face, so they can make life decisions for themselves, without the need for undue or over broad guardianship” [from “Supported Decision-Making: An Agenda for Action”, 2014, p.1]. The Federal Administration on Community Living (ACL), under the U.S.Department of Health and Human Services, has given millions of dollars in funding for multi-year projects to promote and do research on Supported Decision-Making. Among those receiving grants are the Quality Trust for Individuals with Developmental Disabilities for their National Resource Center for Supported Decision-Making and the Burton Blatt Institute at Syracuse University in New York.

While slogging through articles and reports on guardianship and its alternatives, I was struck by how little data is available on guardianship. Very few reports make distinctions between guardianships for people with severe developmental  disabilities, people with mental illness, physically incapacitated adults, and aging citizens who can no longer handle their own affairs or are affected by Alzheimer’s or other forms of dementia. To illustrate the importance of making these distinctions, my son Danny, who has been profoundly mentally and physically disabled since birth, has never accumulated property or wealth and is unlikely to be the target of unscrupulous probate attorneys who want to get their hands on his loot. Our guardianship is the best tool we have to make sure he is not taken advantage of and that his rights are protected. My mother, however, who lived to be 98 years old and had some degree of dementia by the time she died, was a good example of someone who had everything in place for my father and I to make decisions for her and could have been at greater risk of exploitation if she had been forced into a court-appointed guardianship.

Another question is, who are the guardians? It appears that the vast majority are close family members or friends of the person needing guardianship. Guardianship abuse from family members can occur, but it appears that corporate or state guardians with dozens of wards are far less likely to attend to the needs and wishes of people under guardianship. More stringent regulation of corporate and state guardians may be warranted, but family guardians may be overly burdened by too many requirements aimed at professional guardians and may not need the same kind of monitoring and supervision by the court. 

Much of the reporting on abuses in guardianship (see the National Association to Stop Guardian Abuse) is anecdotal. These anecdotes are rarely quantified to give an overall idea of the extent or causes of guardianship abuse. Although there are horrific stories about what can happen to people under guardianship, we rarely see stories about unpaid family guardians who defend their family members against agencies and individuals who, through neglect or the intentional desire to do harm or simply to save money, exploit vulnerable people with disabilities. And then there are advocacy organizations who claim to know better than the family what people need and are often the recipients of funds for projects that may conflict with the interests of the people the advocates claim to represent. 

Speaking of anecdotes, this has to do with guardianship procedures at our local Probate Court. In 1996, we filed a petition for guardianship for our son Danny. The Court appointed an attorney to represent him, ostensibly to protect his rights and to make recommendations as to his need for guardianship and whether he had any objection to my husband and I becoming his co-guardians. The attorney never called us to find out more about Danny. My husband and I finally met him in the hallway outside the courtroom 15 minutes before the hearing at which time the attorney thought I was the caseworker from Community Mental Health who would be submitting a report to the Court on Danny's condition. Near the end of the hearing, the attorney turned to Danny and asked Danny, who has never been able to talk or communicate in any specific way, if he had anything he would like to say to the Judge. Danny did not respond. Afterwards, we assume the attorney collected his $600 from the Court, the going rate for attorneys representing people who are too poor to pay attorney’s fees. There are lots of conclusions I could have drawn from this one instance of an attorney neglecting his duties, but I talked to other families who had good experiences with court-appointed attorneys who were both caring and fair.

With that said, this is a report from Michigan called the Task Force on Guardianship and Conservatorships; Final Report, September 10, 1998”. The Task Force was created in 1996 by the State Court Administrative Office (SCAO) after news stories were published about abuses by a professional guardian in Wayne County. 25 people were appointed to the Task Force, including probate court judges, probate court registers and staff members, both houses of the Michigan Legislature, relevant executive  branch agencies, several advocacy groups, the State Bar Association, academia, and members of the probate bar.

The goals of the Task Force were to make recommendations on the following topics:
  • Reduction in the use of guardianships and conservatorships;
  • Guarantee of an appropriate number of qualified and concerned guardians;
  • Guarantee of adequate monitoring of guardians and court operations; and
  • Institution of needed standards, training, and education.

The report said that two-thirds of the probate courts did not keep a statistical record of the total number of guardianships and of the percentage of guardianships that are limited (or partial) as opposed to plenary (or full). Although the idea of the Task Force was instigated by abuse by a professional guardian, it found that the vast majority of people filing guardianship petitions were family members or close friends of the person. Guardians often had guardianship recommended to them by other agencies or professionals. 

Here are some of the recommendations of the Task Force:

To reduce the use of guardianships and conservatorships, it recommended that local resources be established to assess the need for guardianship and develop alternatives to guardianship. It also recommended that an effort be made to educate personnel in hospitals, nursing homes, and other medical or psychological personnel to emphasize presumption of competency and alternatives to guardianship.

To reduce the unnecessary appointments of guardians, the Task Force recommended collecting better screening information on court forms, requiring court-appointed attorneys to include an evaluation of the functional capacity of the potential ward, and more training for judges on cognitive and physical impairments, mental illness, and the aging process. It would have been helpful to know how the Task Force ascertained whether a guardianship was unnecessary and how many unnecessary guardianships were found, but that was not mentioned in the report. 

Recommendations on how to better manage guardianships and conservatorships included minimum ethical standards for professional guardians, compelling courts to comply with statutes and court rules, requiring annual review of accountings, and restrictions on real estate transactions involving the ward’s property. These recommendations seem obvious and it is surprising these were apparently not already implemented by the courts that handle guardianships.

In addition, the report recommended that the Courts should increase the recruitment and training of volunteer guardians, and more guardians who are state-agency-funded and -monitored should be provided as guardians of last resort. This is also surprising, considering that the main complaint was that too many people had court-appointed guardians. The shortage of guardians available for appointment by the court is often mentioned in other reports on guardianship.

The report also includes this statement:

“Many of the recommendations may increase costs to the local funding units or state agencies. Implementation of such recommendations must only be done with a corresponding increase in appropriations to cover costs to avoid any unfunded mandates.”

Some members of the Task Force belonged to organizations that would later become recipients of the type of funding recommended by the report. This included representatives of Michigan Protection and Advocacy Services and the director of the Washtenaw Association for Community Advocacy, a local affiliate of the ARC. They received funding from the Michigan DD Council from 2002 - 2004 for the “Preventing Guardianship” project. 

More to come….

See also Comments to the National Council on Disability on Guardianship and Supported Decision-Making