Thursday, January 27, 2011

Transportation in Washtenaw County features an article today about plans for significantly improving public transportation in Washtenaw County. Three plans have been proposed by the Ann Arbor Transportation Authority (AATA). 20 community forums are scheduled from January 31st to February 23rd in communities all over the county to receive public input on the plans.

The three scenarios offer varying degrees of improvements in county transportation over the next 30 years. The basic plan, called "lifeline plus" calls for increasing the frequency of rides, expanding access to the transportation system, especially for people with disabilities and the elderly, expanding hours of operation, bus stop improvements, and expanding links to other city transportation systems. The two other plans offer further improvements and expansion that will provide more flexibility in the system with a view toward reducing suburban sprawl and promoting compact land use.

Transportation improvement planning has been underway for a year. After the forums, AATA will consider public input, pick a plan, and begin implementation.

The availability of reliable and accessible transportation is vital to improving access to jobs and social and recreational opportunities for people with disabilities. Get involved to find out how AATA plans will affect your disabled family member.

For more information, visit the AATA Website on proposed transportation plans for Washtenaw County and see the schedule for 20 community meetings to be held over the next month.

For more information on transportation issues and disabilities, contact Carolyn Grawi at Ann Arbor Center for Independent Living, (734) 971-0277, or email

Share any concerns you have about transit with Representative Rick Olson from York Township, Washtenaw County. He was recently appointed to the House Committee on Transportation in the Michigan House of Representatives. Phone: (517) 373-1792 ; E-mail: .

Tuesday, January 25, 2011

No excuse for violations at Oakland County group homes

This article from The Detroit News, "Repeated violations found at Oakland County group homes", January 10, 2011, is all too familiar. Every year or so a local newspaper features a story about group homes that could just as well have been written last year or the year before that or ten years ago. The story goes something like this: Group home residents live in squalid conditions, are subjected to mistreatment by group home employees, and are neglected to the point where they wander off and get into serious trouble with the police and their neighbors. It is also not unusual for an employee to claim, as happened in this case, that he or she was fired for trying to bring problems to the attention of his or her supervisors.

There are many group homes that provide excellent care and have none of the problems cited in this article. When the best choice for a person is to live in a group home, I think the best care for people with severe developmental disabilities is provided in homes that have strong family involvement and oversight, community support from local churches or other community organizations, and whose management welcomes and encourages this support. What families have to worry about are the many group homes that provide adequate care, but not much in the way of a fulfilling life for their residents and homes that provide neither adequate care nor much of a life for their residents and end up endangering the health, safety, and well-being of the people who live there.

Licensed group homes are operated under strict rules to assure safety and the protection of residents' rights. The caseloads of licensing monitors, however, have been increasing, bringing into question whether monitors can adequately do their job. In addition, administrators in the Michigan Department of Community Health have stated that they want to eventually eliminate group homes as an option for people with developmental disabilities. It is difficult to believe that the State will do much to improve the quality of failing group homes when they would prefer that they disappear.

There are things that families can do to improve the living situation of group home residents.

The first line of defense to protect a resident of a group home is to have a good person-centered plan and service plan that describe in detail all the services the person needs and how they will be delivered. Many problems go back to poor planning. Furthermore the plan of services must take into account the preferences and choices of the resident that are so important for the person's happiness and satisfaction with his or her living situation.

Most of the rights of recipients of mental health services fall under these broad categories listed in the Michigan Mental Health Code:

  1. A recipient shall receive mental health services suited to his or her condition.
  2. Mental health services shall be provided in a safe, sanitary, and humane treatment environment.
  3. Mental health services shall be offered in the least restrictive setting that is appropriate and available.
  4. A recipient has the right to be treated with dignity and respect.

Any violation of these rights can be reported to the local Recipient Rights Office. In Washtenaw County, Recipient Rights can be reached at (734) 544-3000. Anyone can make a complaint to recipient rights, whether or not you are related to the person involved. As a complainant, you should receive a written response to your complaint, written updates on the progress of the rights investigation, and a written summary of the conclusion of the investigation and the actions that have been taken to correct the situation.

A Rights Complaint form is available here.

Adult Foster Care Licensing provides an extra layer of monitoring and oversight for group homes and deals with the most serious rights violations and safety issues.  These can involve the death of a resident, accidents or illnesses that require hospitalization, displays of serious hostility, self-inflicted harm or harm to others, and destruction of property. Also included in investigations are incidents involving the arrest or conviction of a resident and absence without notice.

If a resident has a guardian, the guardian must be notified in writing within 48 hours of an incident or event that triggers a licensing investigation. A licensing complaint form can be found here. In addition to the complaint form are rules for AFC homes and notice requirements when a complaint has been received.

AFC maintains a Website on licensed group homes. Look for Special Investigation Reports that go beyond routine licensing inspections for information that may indicate serious problems at a group home.

The best and most reliable monitors of group homes are family members and friends who drop in frequently, ask lots of questions, and do not let serious incidents go by without reporting them to the proper authorities.

Thursday, January 20, 2011

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.

Sunday, January 16, 2011

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.

Friday, January 14, 2011

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