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.
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.
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.
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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