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.
A Detroit Free Press article reports that the Michigan Medicaid budget for the 2011 fiscal year has finally passed both houses of the Legislature and awaits the Governor's signature. With $650 million of federal stimulus money, the Department of Community Health has avoided a threatened $50 million cut in mental health services and has restored dental, podiatry, and vision care for all Medicaid recipients. A 4% cut in reimbursement to physicians and hospitals has also been avoided.
In usual fashion, the Legislature has ignored the problem of future deficits starting in 2012 when the stimulus funds are no longer available. Next year, there will be a $500 million gap in the budget, but who cares? It's an election year and a large number of legislators will be gone or will have shifted to another house because of term limits. Tax increases for next year have been suggested by Republican Senator Roger Kahn from Saginaw Township, who predicts that the next Legislature will "enact a combination of spending cuts, reforms and tax increases to avoid a deficit."
Low-income people, including many people with disabilities, are eligible for SNAP (Supplemental Nutrition and Assistance Program) Bridge cards to purchase food. The Double Up Food Bucks program is sponsored by the Fair Food Network and doubles the value of Bridge card purchases of fresh fruits and vegetables at local farmers' markets.
The Bridge card holder purchases up to $20 worth of tokens at a participating farmers' market for $10 off the Bridge card. The tokens are then used to purchase fresh fruits and vegetables. Local markets participating in the program include: - Ann Arbor Farmers' Market at 315 Detroit St.
- Downtown Ypsilanti Farmers' Market on Ferris St. between Hamilton and Adams,
- Westside Farmers' Market at 2501 Jackson Ave., and
- Ypsilanti Depot Town Farmers' Market at 100 Market Pl.
Double Up Food Bucks helps farmers by increasing sales of fresh fruits and vegetables in a sustainable, dependable way. It allows eligible residents to purchase fresh fruits and vegetables that might ordinarily be out of their price range.
There are also many other locations in the Detroit area that participate in the program. Here is a list of farmers' markets throughout Michigan that accept Bridge cards.
[Click here for a link to a copy of the letter to the MDCH from Michigan advocacy groups.]
The Choice Resolution, supported by many family groups and individuals who work with people with disabilities, is intended to preserve specialized services and residential programs as an option for people with developmental and other disabilities. Even before the resolution had final approval, the ARC Michigan, UCP Michigan, the Michigan Disability Rights Coalition, and Michigan Protection and Advocacy Services wrote a letter to the Michigan Department of Community Health (MDCH) to avert the possibility that too much choice for people with developmental disabilities might interfere with the advocates' agenda. The letter, addressed to Janet Olszewski, the Director of MDCH, and dated July 15, 2010, expressed alarm over "increased segregation and congregation" of people with developmental disabilities. The advocates demanded that MDCH administrators soldier-on in their efforts to eliminate larger licensed community group homes housing more than six people. They did this apparently without any regard for the wishes, needs, or choice of the the people who actually live in these homes.
We know that the ultimate goal of the MDCH is to eliminate licensed group homes, sheltered workshops, day programs, and other specialized disability-only programs. The state must be thrilled to have influential advocacy groups supporting their plans, but families may question whether these groups represent the interests of their loved-ones when they are so dismissive of anyone who does not agree with them or share their ideology.
The letter, signed by Dohn Hoyle of the ARC Michigan, Glen Ashley of UCP Michigan, Norm DeLisle of MDRC, and Elmer Cerano from MPAS, goes to some lengths to portray the "decision makers" who don't agree with these advocates as ignoramuses: Surely, they've never read the Oklahoma Quality Tracking Project that followed the Hissom Lawsuit (1990-1995) and showed that "any home with more than two people showed less progress in Self-Care Abilities". They probably don't even know that Val Bradley, the President of the Human Services Research Institute, said that "...the bigger the residence, the less choice." Nor have they read the speech by Sam Bagenstos from the US Department of Justice about integration. Some of the decision makers may not even know that there is an Article 19 of the United Nations "Convention on the Rights of Persons with Disabilities". How dare they pretend to know anything about what is good for people with disabilities, other than what these advocates tell them.
Nevertheless, all the studies in the world and pronouncements by supporters of full inclusion for all do not change the obligation of the Michigan community mental health system to provide appropriate services to people with developmental disabilities, to allow full participation by the person served or their legal representative in making decisions, and to implement person-centered plans based on the needs, preferences, and choices of the disabled person.
The advocates, displaying either their own ignorance of the law or a willingness to distort the facts to further their goals, misrepresent the Americans with Disabilities Act and the U.S. Supreme Court's Olmstead decision to support their demands:
The letter says, "Title II of the ADA calls for providing public services in the most integrated settings", but the ADA regulations on integration say, "A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." [28 C.F.R. §35.130(d)]. That little phrase, "appropriate to the needs of qualified individuals with disabilities", that was so carefully omitted, changes everything. The needs of the individual define the extent to which the person will be integrated into the larger community.
ADA regulations recognize a dual mandate - the right not to be discriminated against and the right to reject services that the individual does not accept:
- 42 U.S.C. § 12132 : "Subject to the provisions of this subchapter, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the servicees, programs, or activities of a public entity, or be subjected to discrimination by any such entity."
- [28 C.F.R. §35.130(e)(1)] "Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept."
The Supreme Court's Olmstead Decision which addresses the question of whether unwanted institutionalization in a state-run facility is discrimination under the ADA, never mentions community-based congregate facilities. The statement in the letter that, "Olmstead certainly did not say it was permissible to build and house individuals in new segregated settings" is technically true but totally misleading.
The Olmstead decision says that transfer to a community placement from an institution is required and appropriate when –
- “(a) the State’s treatment professionals have determined that community placement is appropriate;
- (b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and
- (c) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” 119 S. Ct. at 2181.
Olmstead supports choice. It does not mandate the closure of institutions: “We emphasize that nothing 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.” 119 S. Ct. at 2187. The decision does not mandate the closure of community-based programs or residential placements of any size nor does it designate these programs as institutional in nature and therefore discriminatory.
The letter discusses experiences from the closure of Mount Pleasant Center, an Intermediate Care Facility for the Mentally Retarded (ICF/MR). Bill Allen and Angela Martin, who were responsible for discharging people from Mount Pleasant and monitoring them afterwards, came to the conclusion that "smaller is better and smallest is best", the letter says. "They maintain that was true for every single person who moved back to the community, some 120 persons. Their extensive experience leads them to believe that this is true for anyone with a developmental disability who would be served by the public mental health system."
The families of the people at Mount Pleasant Center are in a better position to respond to that statement than I am. I do know that the effects of the closure on former residents were mixed, with many families happy to have their family member living closer to them, but missing some of the services readily available at Mount Pleasant that are not available to them in community settings. Many of the families opposed closure of the facility and testified at hearings to that affect before the Michigan House of Representatives in March 2009. Some of the former residents of Mount Pleasant Center were not placed in the community, but were instead transferred to another ICF/MR at Caro Center, a state psychiatric hospital. On July 28, 2010, in a meeting with a state senator from Ottawa County and family groups, Michael Head from the MDCH confirmed that at least 10 people who were moved out of Mount Pleasant Center have died. Out of respect for former residents of Mount Pleasant Center and their families, the advocates should not be so quick to accept everything the state or its representatives tell them just because it bolsters their case for full inclusion for everyone.
All the groups signing the letter are recipients of federal funds for people with disabilities and should be held to higher standards for truth and accuracy. They are entitled to their opinions on inclusion, but not to misinterpretations and distortions of federal mandates.
