Michigan mental health policy in conflict with rights?

In Michigan, our local Community Mental Health (CMH) agencies provide services to people with developmental disabilities according to state and federal mandates and under contract to the Michigan Department of Community Health (MDCH). In providing services, the state and local CMHs must honor and protect the rights of the individuals they serve.

Promoting integration and inclusion in community life is part of federal and state mandates, but the degree to which this occurs is always tempered by the needs and preferences of individuals with disabilities. In their zeal to promote inclusion, state administrators and some advocacy groups are promoting policies that appear to conflict with individual rights to appropriate services by eliminating or limiting the services and settings available to people with developmental disabilities. To these administrators and advocates, any specialized program that provides services in group settings to people with developmental disabilities is segregated and discriminatory, whether or not the people served consider these programs necessary and part of their community.

Of most concern, is the intent of the MDCH to reduce and eventually eliminate so-called legacy programs: group homes, day programs, sheltered workshops, and other "disability-only" programs.

Vision for All Individuals with Developmental Disabilities

A draft policy that comes from The Standards Group, a part of the Michigan Association of Community Mental Health Boards (MACMHB), has been distributed and discussed at meetings with state officials and local CMHs. [The latest version of this comes from the DD PIT SUBGROUP dated 2/16/10 and was discussed at a recent conference of the MACMHB.] It is based more on an ideology and a philosophy of how things should be, rather than on official law or policy. It describes a vision for all people with DD, regardless of the severity of the person's disabilities, cognitive abilities, or medical or other issues affecting the individual.

According to the "vision", an acceptable activity for a person with DD to contribute to his or her community might be for the person to volunteer for Neighborhood Watch, but volunteering with a group of others with disabilities would not be an appropriate choice. Other unacceptable practices include living in a licensed group home, attending a day program, doing things in the community in groups rather than with a friend or two, and engaging in activities that the general population would not engage in on a regular basis. Rather than relying on already established legal mandates to improve the mental health system, this document is promoting an ideology and vision for the future that not all of us share.

Olmstead Misinterpreted

Another justification for eliminating specialized programs for people with developmental disabilities, is based on a misinterpretation of the Olmstead decision, a 1999 US Supreme Court decision that determined when care in an institution is unjustified and considered discrimination under the Americans with Disabilities Act. Olmstead is often used to justify closing all institutions and by extension community programs that are considered "institutional" in nature. In fact, the court opinion says the opposite:

“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. 2176, 2187 (1999).

In determining when a person should be moved to community placement from an institution, the court applied a three-part test, including that the transfer to a less restrictive setting is not opposed by the affected individual.

The Olmstead decision reinforced the individual's right to choose. Extending that to choices made regarding community services and settings, there is no reason to believe that Olmstead restricts choices for "disability-only" programs. In addition, there has been no genuine legal challenge to the authority of guardians or conservators of adults with developmental disabilities to make decisions on behalf of the person according to state law.

The state continues on a path toward eliminating specialized services for people with developmental disabilities and undermining their rights mandated by federal and state law. It does so with little scrutiny from either the public or our legislature.

More information on Olmstead .

More on opposition to the state vision from the Holland Sentinel.

Dental care without Medicaid

Now that Michigan Medicaid no longer pays for preventive dental care for adults, we are not relying on dentists that accept Medicaid for our sons' routine dental care. The state's decision to drop dental care is cruel and short-sighted, but finding a dentist who was willing to try a different approach with our son Danny was an eye-opening experience.

Danny has severe cerebral palsy and profound mental retardation. Most importantly, when it comes to working on his teeth, he has a severe aversion to touch, especially around his face, mouth, hands and arms. And, at 33, he is strong. His movements are mostly uncontrolled, and if he is agitated, he is capable of inadvertently smashing you in the face, if you are not careful.

In the past, the only sedation that Danny received before dental appointments was Valium. Danny would have a nice Valium-induced nap on his way to the dentist and be fully awake and agitated during the dental exam and cleaning. Then, on the way home, he would have another nap before the Valium wore off. This time, we sought out someone who would try IV sedation before working on his teeth. As it turned out, Danny got the most thorough dental exam and treatment ever with a minimum of trauma.

Danny is generally healthy, with no heart or respiratory problems and with a history of tolerating both IV sedation and general anesthesia well. An experienced nurse anesthetist worked with the dentist and dental hygienists to sedate Danny and keep him "under" enough so they could work on him. The nurse anesthetist monitored Danny the whole time for blood pressure, heart rate, and oxygen saturation. Danny also received fluids through the IV and oxygen at least part of the time. The nurse controlled and monitored the amount of medication throughout. When it was all over, Danny came out of it immediately and was just fine. While Danny was under sedation, they did a complete set of X-rays, photos of his teeth, and a thorough deep cleaning. Danny had inflamed gums, but no cavities or periodontal disease. He did not need any other dental work, but the dental team was prepared for anything. His teeth are so clean now, he could eat off them.

It was costly, but having talked to a friend who looked into work being done on her child at a local hospital under general anesthesia, the expense was a fraction of what that would have cost.

This could have been done a long time ago, but we were discouraged from even contemplating it by one dentist who insisted that IV sedation didn't usually work on "people like Danny". Another dentist said it was too expensive, unsafe, and Medicaid would probably never approve it. He also said it was unsafe to use sharp pointy objects to clean Danny's teeth and thought brushing his teeth with anti-bacterial mouth wash every day was sufficient. He would not recommend using anesthesia unless Danny had more obvious dental problems, like loose teeth and rotting gums (he used more technical language than this). Then I asked, if we could pay to have him anesthetized ourselves rather than trying to get approval from Medicaid, would they do it? Suddenly, the issue of safety dropped from consideration and he said he could probably arrange for the hospital to do it. We decided to look for a less ethically challenged dentist.

Danny is fortunate in many respects: he has a good set of choppers, he is relatively healthy despite all his problems, and he has family who are able to pay for good dental care. But I question the wisdom of the state allowing a whole segment of the population to go without access to preventive dental care, knowing the bad effects this has on general health that we will all pay for eventually, and knowing that some people like Danny who cannot communicate whether the pain and discomfort they are experiencing comes from a tooth ache or a belly ache, will suffer needlessly from the lack of care.

Look here for more information on trauma-free dental care.

Autism groups clash over National Council on Disability nominee

President Obama nominated eight people to serve on the National Council on Disability. All but one have been confirmed by the U.S. Senate. Ari Ne'eman, a 22-year old man with Asperger's Syndrome, has stirred up enough controversy that his appointment has been blocked by one or more Senators.

Ne'eman is the President of the Autistic Self Advocacy Network (ASAN) based in New Jersey. He is known for his views on neurodiversity, the idea that people with autism and other disabilities represent diversity in the broad spectrum of human behavior and thought. Attempts to treat and cure them, he believes, are not only unnecessary, but may lead to their eugenic elimination. He emphasizes working toward acceptance, integration, and enforcement of the rights of people with disabilities. Ne'eman and ASAN believe that funds spent on treatment and cures for autism should be diverted to the goals that ASAN promotes.

Other autism groups, such as Cure Autism Now and the Autism Action Coalition, object to Ne'eman's opposition to autism research. And who can blame them? After all, research into conditions such as juvenile diabetes and a variety of mental illnesses, has increased understanding of the causes for these conditions and has improved treatments by reducing symptoms and making them more tolerable. Research has not resulted in the elimination of people with these conditions as Ne'eman fears for people with autism, and it has certainly brought cures closer to reality. Ethical questions about what we do with the results of research are always present and research into autism is no different.

Ne'eman's views on neurodiversity and autism research and the fact that he is a self-proclaimed advocate for all people with autism should cause families of people with more severe forms of the condition to doubt his ability to adequately represent their family members. Everyone on the Board of Directors of ASAN, the organization that Ne'eman heads, has high functioning autism or Asperger's Syndrome along with multiple academic degrees and accomplishments hopelessly unattainable by people on the low-functioning end of the autism spectrum. And it turns out that ASAN's promotion of civil rights for people with disabilities is highly selective.

In New Jersey, legislation, which ASAN supports, has been proposed to close most of the developmental centers (Intermediate Care Facilities for the Mentally Retarded - ICF/MR) and move the residents to community placements. Advocates whose family members live in these facilities have responded to surveys asking if they want their relatives to move. 96% of those who responded (61% of those solicited responded) say they do not want their family members moved. Their family members mostly have severe and profound mental retardation and many of them are at the far end of the autism spectrum from ASAN's Board of Directors.

What ASAN and many other advocacy groups will tell you is that the U.S. Supreme Court Olmstead decision supports the closure of institutions everywhere and that New Jersey is merely doing what it has been required to do since 1999. What they will not tell you is that the Supreme Court in Olmstead specifically said that its intent was not to force people out 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. 2176, 2187 (1999).

Olmstead sets up criteria for evaluating a resident's need for community care which includes the condition that the individual (or his or her guardian), does not oppose the transfer from institutional care. Ne'eman, ASAN, and many other advocacy groups have been willing to ignore the rights of residents of ICFs/MR to promote their own ideology opposing the existence of these facilities. The bumper-sticker slogan, "Nothing about us, without us", apparently does not apply to the residents of these facilities, their families, or anyone else who needs the specialized services and placements that these groups oppose.

The idea that Ari Ne'eman is not autistic enough to serve on the National Council on Disability is beside the point. I'm sure he has valuable insights into the treatment of people with Asperger's Syndrome and high-functioning autism, but he does not represent all people with autism any more than I represent all parents whose children have cerebral palsy. The self advocacy movement has ironically allowed self advocates such as Ari Ne'eman to substitute their group judgment for that of disabled individuals, a practice just as bad as allowing doctors, government, insurance companys, or schools to make unilateral decisions about people's lives without ever needing to include them in the decision making or respect the differences in their needs and choices.

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For more information on this controversy, see:

• Erasing Autism? from Newsweek, May 16, 2009
• Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, from the NY Times, March 27, 2010
• See numerous interviews with Ari Ne'eman on YouTube.com
• Life on the other end of the autism spectrum: Planet Autism from Salon.com, September 27, 2003
• Letter to President Obama from groups opposing Ne'eman's appointment
• VOR Olmstead Resources
• New Jersey Choice press conference video of Robin Sims, parent of NJ ICF/MR resident and President of VOR: introduction and extended remarks

Ann Arbor Easter Bunny

The painted boulder on the University of Michigan campus is transformed into a ghastly Easter Bunny.

The AACIL: Activities for People with Disabilities

The Ann Arbor Center for Independent Living (AACIL) offers lots of activities for people with disabilities. Although their focus is generally on people with physical disabilities, they also serve people with other developmental and cognitive disabilities. Even if your child has never participated in AACIL programs, it is worth a look to see if there might be something for a more severely impaired child or adult.

The AACIL also has an email news letter with updates on CIL activities:

eNews for Youth
A Periodic ePublication of the Ann Arbor Center for Independent Living
for Young People with Disabilities

Call to be placed on the email list.

Contact the AACIL at:

Ann Arbor Center for Independent Living
3941 Research Park Drive
Ann Arbor, MI 48108
(734) 971-0277
phone: (734) 971-0826 fax: (734) 971-0277

Disabled Children and the Invisible Fence

In an article that appeared in Sunday's AnnArbor.com (3/28/10), Annie Zirkel has hit the nail on the head:

"Raising a child with disabilities is like living in a yard with an invisible fence."

The fence expands and contracts, sometimes fencing in your other children whom you hoped might escape some of the limitations of life with disabilities and sometimes expanding into new possibilities that make life seem a little brighter and less claustrophobic for everyone concerned.

As Annie says, envy of people not confined by the invisible fence occasionally rears its ugly head. Many years ago, I remember going to a party at my daughter's middle school a few weeks before the winter break at the end of February. I was eavesdropping on a conversation between two mothers, one of whom was trying to decide whether her family should go skiing in Colorado or spend the week in a friend's condo in the Bahamas. Oh, please!

My plan was to take every measure necessary to preserve my sanity during the dreaded "vacation". That meant loading the boys into the van for their daily activity, an hour's ride through the countryside with music playing. This we called "airing out the boys" and it had become a ritual for maintaining happiness for them and sanity for us parents on weekends. I also hoped for a few hours of respite care from our wonderful and experienced sitter, but that depended on whether the other families who relied on her had gotten to her first. As for my daughter, I hoped she would have lots of invitations to visit friends. It was much easier to do fun things with her when the boys were in school and she was not.

I avoided most, but not all, of the activities for parents at "regular" school, because I could not get over how well put together and rested parents of "regular" children look. The contrast to my harried and sleep deprived friends from the "irregular" school was too painful and distracting. And, yes, I know that other people have awful things to deal with that don't always show on their faces or in their choice of wardrobe, but I still did not fit in.

Nevertheless, Annie has some wise words for people like me:

"I imagine I will always struggle with the challenges of this invisible fence. But I do take care not to spend too much time envying other's grass because it doesn't make mine grow any better. The best I can do is try to make our yard nicer, keep the edges from closing in, and work to appreciate our rare opportunities — no matter how brief or imperfect — for a change of scenery."

Annie Zirkel, LPC is an Ann Arbor parenting consultant and past editor of “A Different Path,” a Washtenaw newsletter for families raising children with special needs. You can find her at www.practicehow.com or contact annie@practicehow.com .

March 2010: News from the WCHO and the Recipient Rights Advisory Committee

I have been attending Washtenaw Community Health Organization (WCHO) Board meetings for most of the last year in an attempt to understand and follow changes in the agency during the current economic crisis. Very few outsiders attend these meetings—most of the participants and attendees are either Board members or staff from the WCHO or CSTS (Community Supports and Treatment Services). The Board deals with complex issues concerning money and policy that affect the people they serve but, in my opinion, their decisions are not always anchored in the realities of life that we and our family members face each day. The Board does best when we keep them informed and connected to how their actions affect our family members.

For example, at the end of last summer, there were plans afoot to contract out all the vocational and skill-building programs that were operated by CSTS, a public agency. This was part of the County Board of Commissioners move to close a huge budget deficit. Families went to the WCHO and the Board of Commissioners with heartfelt arguments for why the CSTS programs should not be eliminated or changed. Eventually the CSTS employees' union made concessions to the County Board, their employer, that preserved most of their jobs. Then, the WCHO decided to continue contracting with CSTS for vocational and skill-building programs without interruption. Another outside agency that provides supported employment and skill-building programs for other WCHO consumers, was going to be dropped by the WCHO, which would have caused disruption to the people served by that agency. The outside agency felt that the WCHO had made the decision with inaccurate information. The WCHO then decided to continue the contract without interruption. Not all policy and funding decisions work out as well as this one did, but it would never have happened if no one had spoken up.

WCHO Board funding outlook

During a Board discussion on WCHO funding, the Executive Director Patrick Barrie said that continued federal stimulus funding and Medicaid funds would help the agency (and the state) make it through the next six months. If the health care reform legislation makes it through Congress, there will be many opportunities to expand Medicaid funding and to take advantage of demonstration projects. This could avoid cuts that are under consideration by the Michigan Senate. If health care reform fails, there are other possibilities to consider, (passing out Prozac was suggested) but no one is very optimistic about any of these. [Health care reform did pass, so hold the Prozac for now.]

Recipient Rights Advisory Committee Report

The Recipient Rights Advisory Committee for the WCHO has worked on decreasing the number of complaints having to do with "Failure to Report". (If an employee of a WCHO programs fails to report a possible rights violation, that is in itself a violation of rights.) Through training of people who work in group homes, supported living situations, and in other programs funded by the WCHO, the Recipient Rights Office has emphasized the responsibility of employees to report rights violations that they see in their work with people served by the WCHO. There has been a dramatic increase in the number of rights violations reported, perhaps due in part to this emphasis.

There is concern by the Recipient Rights Committee in the large number of substantiated complaints in unlicensed supported living sites for people with developmental disabilities. There were 71 reported for the last fiscal year. Rights complaints in licensed group homes for people with developmental disabilities came in a distant second, with 26 complaints. Substantiated rights complaints increased 50% overall during the last fiscal year.

The Recipient Rights Advisory Committee believes that there should be further investigation of this problem. Some of the causes of the problem may be outside the scope of the Recipient Rights Office, however. For instance, when there are complaints that services are not suitable to the individual’s needs, it may be that Person-Centered Plans are not adequately addressing the needs of the people served. The cause of the problem may lie with staff training, lack of accurate information to families, misunderstanding of PCP requirements, etc.

The WCHO Board is interested in supporting the idea of further investigation into these problems, but asked that the committee come up with a more specific proposal.