Michigan advocates oppose choice - again!

Michigan advocacy organizations have once again expressed strong opposition to the Choice Resolution adopted by the Michigan Association of Community Mental Health Boards (MACMHB). The Choice Resolution confirms the right of people served by our local community mental health agencies, including people with developmental disabilities, to live  in the least restrictive setting that is appropriate to the needs of the individual and is the individual’s personal choice. It recognizes that there are differences in service preference among consumers and honors choice regardless of the individual’s philosophy of service delivery.

The Michigan Department of Community Health, with the support of state advocacy organizations, has stated its intent to limit and eventually eliminate all specialized services that serve people with disabilities in group settings (day programs, group homes, sheltered workshops, etc.). The Choice Resolution was a response to that threat and received strong support from families and other individuals alarmed by the policy direction of the MDCH. (Now is the time to encourage the new administration in Lansing to take a second look at these policies.)

The Choice Resolution was adopted by the MACMHB Executive Committee in August 2010 and was then voted on by the full membership of the organization during a state conference in October 2010 where it passed unanimously. The most recent letter from the advocacy organizations has been discussed by the MACMHB steering committee and will be responded to. The MACMHB continues to stand behind the Choice Resolution.

Until I can get this posted on line, here is the body of the advocates' letter, dated December 15, 2010, to Mary Anderson, President of the MACMHB.:

It is extremely disappointing to see the board Association adopt the position they did on the CHOICE (sic). What has been endorsed, implies poor stewardship of public monies and ignores best practices, evidence and years of progress in Michigan and even throughout the county (sic).

Your position attempts to modify "least restrictive environment" and skips altogether "most integrated setting" both of which are statutory requirements of the public mental health system. You're (sic) association maintains that any person, or in this case, any person's parent can choose whatever they want for their adult son or daughter. That could include another Mount Pleasant Center.
 
What is best for the person; what will accomplish legitimate public mental health ends; what is most effective; what is most fiscally sound; what follows the letter and intent of the law; none of these matter, and evidently neither does the research and data which indicate the superiority of small residential settings when it comes to choice.

It has become even more apparent that MACMHB, as a trade organization for providers, is willing to have a small, albeit loud, fringe group dictate their policy and the values of the organization; It is also apparent that your Association does not value the position of this state's leading advocacy organizations working on behalf of persons with developmental disabilities.

Without common values or principals, we obviously need to alter our common advocacy and support. Our past history of supporting the CMHSP and current PIHP system will need to be re-evaluated. If we do not share a vision nor seek the same outcomes, our paths must diverge. Sadly, we see no other way.

The letter is signed by Dohn Hoyle from the ARC Michigan, Glen Ashley from UCP Michigan, Norm DeLisle from MDRC, and Elmer Cerano from MPAS.

I look forward to more discussions on small, albeit loud, fringe groups dictating policy and values of their organizations to people with disabilities and their families.

Grandma Jane: February 20, 1916 - December 10, 2010

Baby Ian and Grandma Jane

Jane Alexander Barker - Grandma Jane to Danny, Ian, Jennie and 12 other grandchildren - died on December 10, 2010 in Monterey, California. I will remember her fondly for her sunny disposition, her energy and determination, and her love for her large family and their devotion to her.

Jane was born in New York City.  Her family moved frequently, spending time in Kansas City, MO, Miami Beach, FL, New Orleans, and then Orlando, FL.  She married Roger Barker, "Grandpappy" to all those grandchildren, in 1939. Her life was filled with both sorrow and joy. Her third child, Jimmy, drowned when he was 16 months old. Her brother Elliot and his wife died in a plane crash a few years later, leaving behind two boys who Jane and Roger adopted into their large family.

Even with six children, Jane was an inveterate volunteer. She was a girl scout leader for 16 years and president of the "pink ladies" at Orange memorial Hospital in Orlando. One of her proudest accomplishments was establishing a day care center for single mothers and low-income families at her church.

Jane had deep roots in Michigan. In 1926 her father purchased a cottage on Walloon Lake in Northern Michigan where she spent summers as a child and came back again and again until her last visit two summers ago. Her beloved Tanglewood cottage was where she felt most at home.

Jane had many enthusiasms including knitting, needlepoint, sewing, weaving and embroidering. She was an avid reader, often sharing murder mysteries, historical novels, and seamy potboilers with her eldest son (who is also my husband). She became a computer geek, amazing one of her granddaughters with her ability to set up a new computer system on her own and her insistence that she have a decent internet connection before she moved to California at the age of 90 to live with her daughter. She also wrote three self-published memoirs in the 1990's: a memoir of her own life, a history of her husband's family, and remembrances of Wildwood Harbor on Walloon Lake.

Jane Barker was a survivor. With her family, she survived the 1926 hurricane that swept over Miami beach by getting up on furniture as water flooded under the kitchen floor. She later survived a tornado which struck the Georgia town where she went to college. She survived over 40 years of smoking cigarettes and then gave them up cold-turkey. She leaves us with her stories about her mother and father, her grandmother, various aunts and uncles, her numerous friends and acquaintances, and all the lessons that can be learned from a long life, well lived.

Grandpa Fred is 100 years old

Before the New Year becomes the Old Year, I have to catch up on a few items.

My father Fred Howard - Danny, Ian, and Jennie's Grandpa - turned 100 years old on December 9th, 2010. He lives in Ann Arbor in an assisted living facility with my mother, who is only 97. Although he doesn't see or hear very well and can't get around without his walker, he is still holding doors open for women and children, making sure my mother gets her medications every day, and managing his life with as little interference as possible from the nosy people who keep coming by to check up on him.

I was lucky. My parents were always available in a crisis when Danny and Ian were younger. Mostly they kept me company when my husband would have to go out of town and I was stuck here alone with the kids. Come to think of it, those occasions were crises and if I hadn't had my parents' help, my sanity would have been in jeopardy. Even in recent years, when Ian was still living at home, although my father was not able to help much with actual care, he took over laundry duty, a task that kept him busy and feeling useful.

In his long life, he has always been busy and useful. He went to the University of Chicago on a full scholarship that he won in a city-wide writing contest in High School. He dropped out during his first year to become an actor until the depression hit and he had to come home and find a real job.  He worked in bookstores and eventually met and married my mother who had a young son, my half-brother John. In World War II he joined the Army Air Force and flew missions over North Africa and Italy as a bombardier. He bailed out of plane over Sicily and sent my mother the parachute handle for Christmas that year.

He worked at the Library of Congress for 15 years after the war where he was on the team editing the Wilbur and Orville Wright papers. He co-authored with my mother a collection of wartime letters and later published a novel. After the Library of Congress, he worked as an editor for many years for publishers in the Washington, D.C. area. At the age of 77, he published a biography of the Wright Brothers called "Wilbur and Orville", a book that was highly acclaimed and for which he later won a Christopher Award.

Now that my parents are very old, I am seeing first hand the differences in how we deal with disabilities in old-age and developmental disabilities that occur early in life. For one thing, we don't do as much pretending with people who are elderly: we don't expect them to work after they have reached the point in their lives where that is no longer possible or desirable and we don't berate them for choosing to live in "congregate" facilities if that is where they want to live and will get the best care. We also don't showcase the healthiest and most capable people who have attained a great age and pretend that that is proof that everyone can attain the same level of functioning into old age if only we have high expectations and adhere to an ideology that denies any other outcome of old age. Living well to an advanced age has as much to do with genes and luck as it does with attitudes, expectations, and circumstances over which we have no control.

Fred and Janet with grandson and family

Merry Christmas!

Flash Mob sings Hallelujah Chorus in mall food court

Attack on parent-guardians, Texas style

According to an article in the Texas Tribune from September 15, 2010, the parents of an adult woman with Down Syndrome were removed as her guardians in a secret hearing by a Probate Court judge, after they became involved in a dispute with her group home over psychotropic medications for their daughter.

By all accounts, the Covingtons were good parents, caring for their daughter Ceci at home for more than 30 years. Ceci moved into a group home that her parents thought would give her good care, but that changed over time. Ceci began having headaches and tantrums. Her mother took her to doctors who diagnosed her with sinus problems and sleep apnea. Without the knowledge or permission of her parents, the group home began giving Ceci psychotropic drugs, assuming that her problems were psychiatric in nature.

When the parents disputed the need for psychiatric medication, the group home asked the Probate Court in a secret session to remove the parents as guardians for abuse. Secret or ex parte hearings are legal in Texas guardianship cases in emergencies to remove someone from an abusive situation. Not only did the parents lose custody of their daughter, but they were not allowed to see her for two months.

The Covingtons and other parents with similar experiences fought back through the media and the state legislature. In response, the presiding probate judge in Texas is quoted as saying, “What you have going on here is people who have done something wrong coming down to the Legislature, going to the newspaper, instead of trying their case in a court of law. In essence, they’re trying to intimidate judges.”

Looking into Guardianship abuses in Texas is like stepping into a hornet's nest of corruption and bureaucratic malfeasance against the elderly and disabled. According to the Examiner.com in Austin, Texas, state legislative hearings on guardianship included reports of abuses "in which family members were denied or removed from guardianships" and were subject to "bureaucratic bullying and institutional stonewalling".        

The Covingtons whose legal bills exceed $55,000, were scheduled to have a hearing about the removal of guardianship for their daughter in October, but it was postponed by the judge. According to the Texas Tribune article, "the judge who first removed Ceci from her parents recused himself from the case in July, following several families’ accusations against him at a legislative hearing in Austin."

In testimony before the Texas State Senate in May, 2010, Lou Ann Anderson had this to say about guardianship abuses:
 
"I am not before you here today to say that all guardianships are bad or abusive. Sometimes they are needed. However, whether initiated by public or private entities, hijacking the personal liberty and/or property of any Texas citizen for some self-enriching purpose is wrong. Motives may be direct financial gain through 'spending-down' the ward's assets, indirect gain by adding them to an institutional headcount eligible for taxpayer-funded subsidization or a combination of both. In any case, it's time for real dialogue to address naming all the true culprits, exposing the lack of recourse experienced by caring, responsible families, acknowledging the civil and property rights violations that occur and recognizing how these victims can end up a burden on honest, hard-working Texans as they are unnecessarily shifted into taxpayer-funded programs."

More information on guardianship problems in Texas can be found on the Website for GRADE, Guardianship Reform Advocates for the Disabled and Elderly.

MACMHB membership unanimously approves Choice Resolution

The Choice Resolution was adopted by the Executive Board of the Michigan Association of Community Mental Health Boards (MACMHB) on 8/6/2010. It was then voted on by the General Assembly of the MACMHB during the state conference on10/19/2010 and passed unanimously.
 
The Choice Resolution was a response by Community Mental Health Boards to family concerns about Michigan Department of Community Health policies to limit and eventually eliminate so-called legacy programs including day programs, sheltered workshops, licensed group homes, and other specialized services and placements in group settings.

The ARC Michigan and UCP Michigan opposed the resolution.

The resolution is a statement confirming the right of consumers of Mental Health services to choose from an array of services and supports based on their needs and preferences. The policy applies to members of the Association - all CMH Boards in Michigan.