I am generally well-informed on issues affecting my developmentally disabled sons, but this took me by surprise. The Role of Guardians in Arrangements that Support Self-Determination for Individuals with Developmental Disabilities Technical Advisory (I'll simplify this and call it the RGASSDIDDTA) is a draft of a policy that was sent out for public comment in August 2010. It is addressed to all the Community Mental Health programs, consumers, families, advocates, and stakeholder's in Michigan's mental health system, but I doubt that many people are aware of it. I did not see it until last Friday and today was the due date for comments.
If you have not seen this and want to make your views known on guardianship for people with developmental disabilities, send an e-mail to Michael Head at the Michigan Department of Community Health (MDCH) in care of Ellen Sugrue Hyman at hymane@michigan.gov and ask that the comment period be extended beyond September 30 to allow families and organizations time to consider the impact this might have on their loved-ones. Even if the comment period is not extended, send in your comments anyway and let the MDCH know what you think about this.
The RGASSDIDDTA contains many references to law and policy that are difficult to check, especially ones from the Michigan Medicaid Provider Manual, a large and cumbersome document. References from law are mixed in with state guidelines and opinion, as if they all have equal weight. Some are taken out of context or are misleading. For example, there is a quote from the Honorable John Kirkendall that supposedly supports the idea that guardianship is not necessary to support people with developmental disabilities. Before he retired, Judge Kirkendall was the Washtenaw County Probate Court Judge who routinely granted guardianship to parents of adults with developmental disabilities. He signed the court orders for guardianship for both of my sons.
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My comments on the RGASSDIDDTA to the MDCH:
Danny and Ian are severely physically and mentally disabled. They are unable to communicate in any specific way or to care for themselves. They are not able to speak on their own behalf or to exercise their rights under law. For these reasons, my husband and I were appointed co-guardians for both of our sons through the Washtenaw County Probate Court.
Guardianship is an invaluable tool that protects my sons and others like them from neglect, abuse, and exploitation. With the authority that comes with guardianship, families are better able to monitor living situations and services, to assure that rights are respected, and to take action when things go wrong. Community Mental Health (CMH) agencies are not immune from making unwise and uninformed decisions about people with developmental disabilities. Sometimes a guardian who intervenes on behalf of their disabled loved-one is the only line of defense for a vulnerable person placed in harm’s way.
When a plenary or full guardian is appointed, the Probate Court must specify that the individual is totally without capacity to care for himself or herself. In the case of a partial guardianship, the court determines the areas that should remain under the control of the individual and specifies in what areas the person does not have the capacity to make decisions. This draft policy from the MDCH fails to recognize the responsibility and the authority of Court-appointed guardians to make decisions in areas where a person has “legal disabilities”. This and an earlier policy from 2003 (the MDCH Self-Determination Policy and Practice Guideline) are both flawed in this respect.
Self-Determination is a method of delivering services to people with developmental disabilities that allows the individual with a disability to have more control over the services they receive, the people who provide the services, and the expenditure of public funds to pay for the services. This is an option that must be made available by CMH agencies for anyone who desires it, including people with the most severe disabilities who have guardians who speak on their behalf. People who want and need a more traditional program of services may choose not to use Self-Determination.
In any case, CMH agencies are obligated to use the person-centered planning process to develop an Individual Plan of Services. This process must promote community life and honor the individual’s preferences, choices, and abilities. When there is a real or perceived disagreement between the guardian and the individual, the draft policy wrongly assumes that the guardian is dismissing the “preferences, choices, and abilities” of the individual.
Many people with developmental disabilities, though certainly not all, have difficulty expressing themselves and their communication may be easily misinterpreted. If someone answers “Yes” to every question that is put to them, it would be wrong to interpret this as a definitive expression of a choice. If an individual’s judgment is impaired, as when a person makes decisions impulsively and without reflection, others need to take into consideration the safety and welfare of the person before making this the basis for an important decision. Some people with developmental disabilities are so eager to please that they will agree to almost anything - another reason to proceed cautiously before coming to an agreement on a plan of services. Person-centered planning is a cooperative effort, but ultimately the guardian’s opinion is a stand-in for that of the individual in areas where the person is unable to make their own decisions. The agency can agree or disagree with the guardian and either side can pursue administrative or other legal remedies to resolve the dispute. But to limit access or restrict the use of Self-Determination by a guardian who is supposedly in conflict with the expressed goals of the consumer is wrong and discriminatory.
This draft policy encourages CMH agencies to use the most aggressive methods available for dispute resolution with guardians, who are most often parents, siblings, other family members, or family friends of the disabled person. Other than suggesting the use of mediation services, the policy leaves out other administrative remedies that must be available to settle disputes such as Medicaid fair hearings. Instead it suggests direct court challenges to guardianship, equating disagreement over the person-centered plan with a guardian’s failure to fulfill his or her responsibilities under the guardianship law. This does great damage to a process that is supposed to be a cooperative effort to design services that best meet the needs of a vulnerable person. Challenges to guardianship are legal and necessary in some cases, but to encourage the use of this legal tool to punish and pressure guardians to conform with the wishes of a local CMH agency is an improper use of these legal procedures.
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I sent copies of my comments to Janet Olszewski [ norris@michigan.gov ], the Director of MDCH, family organizations for people with developmental disabilities. and Senate and House Health Policy Committees. You might also send your comments to your state legislator and anyone else who might have an interest in this.
This is a copy of the Michigan Mental Health Code. Guardianship is covered in Chapter 6 beginning on page 87.
Here is an interesting court case where a CMH tried to have a guardian removed because "The current Guardian is not acting in the ward's best interest in the areas of health, social and vocational opportunities, and proper housing/residential." What did the guardian do to deserve this? The guardian complained about injuries her sister received in her group home, she was upset that no one was helping her sister with her laundry, and she brought her sister hot dogs at the group home when she didn't like the dinner that was being served. This is on the Website of Martha Churchill, an attorney from Milan, Michigan.
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