Thursday, December 10, 2009

Healthcare for everyone?

When and if health care reform legislation is passed by Congress and signed by the President, it will not be the last word on health care in America. We have much to overcome to achieve a system that comes close to the fairness, quality, and cost-effectiveness of systems in other wealthy nations.

In his book, The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care, T.R.Reid describes our flawed system of health care (if it can even be called a "system") and compares it to health care in other countries where he has lived and worked, including Germany, Japan, France, England, and Canada. He not only seeks a solution to our health care problems as a country, but is personally looking for the best treatment for a bum shoulder. (Surprisingly enough, the most successful treatment yet for his shoulder injury he finds in India where he checks himself into a clinic for several weeks. After consulting with an astrologer, he goes through a rigorous program of exercise, reading of Hindu scriptures, massage, and a restricted dietary regimen. All this results in less pain, a greater range of motion in his shoulder, and a 9-pound weight loss. He compares this to the prospects of surgery for a complete shoulder replacement, recommended to him by an American orthopedic surgeon.)

The strength and weakness or our own system of care is its diversity: we provide socialized medicine to the military, veterans, and native Americans; a single-payer system of health insurance through Medicare and Medicaid to people over 65 and those who are poor and disabled; employer-based health care insurance to others; and for the uninsured, an out-of-pocket system resembling that of the poorest countries where medical care is based entirely on the ability to pay.

All the other industrialized countries that Mr. Reid covers in his book have certain characteristics in common: each has come to the conclusion that providing basic health care to everyone is a moral obligation and this achievement is the source of national pride; private health insurance is provided only on a non-profit basis; and health insurance and health care are heavily regulated and controlled by the government. All health care systems, including ours, rations care. No matter how good health care is in a particular country, people complain about it. All systems have their flaws and all are threatened by rising costs.

T.R. Reid has been interviewed many times on TV and radio. To get an idea of what he has to say about health care systems and what works and does not work, listen to an interview he did on August 24, 2009 with Terry Gross on Fresh Air, a National Public Radio show.

Wednesday, November 25, 2009

Flu shots benefit pregnant women and their babies

Two new studies show that pregnant women who are given flu shots during their pregnancy can reduce the risk of having children born prematurely or with low birth rate. [The studies did not include women vaccinated for the H1N1 (swine flu) virus.]

An article in Science News, November 21, 2009, entitled Flu shots for moms-to-be benefit babies, reports on research conducted in Georgia and Bangladesh.

Saad Omer of Emory University in Atlanta identified over 4,000 pregnant women of whom 15% had received a flu shot. Those who received the flu shot were overall 40% less likely to have a baby born prematurely and 70% less likely to have a premature baby if the mother received a flu shot during peak flu season.

The second study was conducted by Mark Steinhoff at Cincinnati Children’s Hospital Medical Center and a Bangladeshi team. They found that babies born to flu-vaccinated women in Bangladesh were less likely to get the flu in their first year of life. On average, women who didn’t get flu shots gave birth to babies weighing about a half-pound less than those born to women getting the shot.

The article goes on to say that flu vaccination rates in the United States are "dismal". Only 15 -21% of pregnant women receive flu shots during flu season.

Thursday, November 19, 2009

Update on WCHO vocational programs

See update here.

Developmentally disabled consumers in vocational and skill-building programs in Washtenaw County can expect these programs to continue, although some consumers receiving supported employment services will be working through another provider.

At the November 17, 2009 meeting, the Washtenaw Community Health Organization (WCHO) Board voted to discontinue the contract with CHS, a provider of supported employment services, and reassign consumers receiving supported employment services to Workskills, another supported employment provider, and Community Supports and Treatment Services (CSTS). The CSTS skill-building programs (day programs and PACE groups) will continue as is. No consumers will lose vocational and skill-building services.

The programs provided by CSTS were threatened earlier in the year by drastic lay-offs and cuts by the Washtenaw County Board of Commissioners in order to plug a $30 million hole in the county budget. The County renegotiated labor contracts with county employee unions, saving $5.2 million over the next two years and 120 - 150 county jobs at CSTS.

The WCHO, which contracts for services from CSTS, will be able to fund the vocational and skill-building programs by consolidating some programs and using increased Medicaid funding from the federal government.

All three of the supported employment service providers (CSTS, Workskills, and CHS), had few complaints from
recipient rights or customer services, but CHS is having serious financial problems. [It was noted at the meeting that there have been complaints about the choice of jobs available through supported employment programs.] The WCHO Board decided that the option of maintaining the contract with Workskills and CSTS would least disrupt consumers and still be cost-effective.

Changes are expected to be implemented by March 1st, 2010, which will allow time for adequate communication and negotiation with providers and adjusted work at CSTS.

Wednesday, November 11, 2009

Autism moms experience stress!

Who would have thunk it? The mothers of adolescents and adults with autism experience chronic stress.

Disability Scoop, an on-line source of news on disability issues, reports that a study published in the November issue of the Journal of Autism and Developmental Disorders has found that mothers of autistic adolescents and adults have stress hormone levels consistent with soldiers in combat.

Researchers also found that:
  • Autism moms spend significantly more time care giving than moms of those without disabilities.
  • On any given day they are twice as likely to be tired and three times as likely to have experienced a stressful event.
  • These moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.
  • On a day-to-day basis, the moms experienced more stressful events and have less time for themselves compared to the average American mother.

On the bright side, the autism moms were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability. I assume this occurs after the moms' antidepressants kick in.

In conclusion, we really need to do more to support autism moms.

I don't know whether to laugh or cry. Just file this away under "Duh".

Free dental exams, November 14, 2009

I received this information from the University of Michigan Dental school. Just so you know, before attempting to participate in this, the Dental School does not treat people with unusual medical or behavioral problems. If you have a DD family member who is able to cooperate during the exam you might give it a try. They are only giving exams to the first 150 people who show up, so there may be lines.

This is available to anyone over the age of 5 regardless of income. If you know someone who needs a dental exam, whether they have a disability or not, let them know about this opportunity. This is just an exam - X-rays, oral cancer screenings, and oral hygiene instruction. Treatment is not being offered.


Each year, the University of Michigan School of Dentistry Student Council sponsors Dental Health Day, offering free dental screenings to Ann Arbor and surrounding communities. Because of the increasing cost of dental care, lack of information about dental services and changes in insurance coverage, many people refrain from seeking dental evaluation and service until they are experiencing pain, or find themselves in an emergency situation. Dental Health Day was designed to allow more people, who would otherwise refrain from seeking dental treatment, to receive basic dental health care, free of charge, reducing risks of emergencies.

This year, the 2009 Dental Health Day will be held on November 14. Individuals regardless of income, and as young as five, can participate in the program between 9:00 a.m. and 2:00 p.m. An appointment is not necessary. However, patients will be seen on a first-come, first-served basis. Treatments will not be provided. Registration will start at 8:30 and will continue until 12 noon or until 150 patients have been evaluated. All participants will receive FREE oral exams, FREE oral cancer screenings, FREE dental x-rays and FREE oral hygiene instruction.

For more information, contact the School of Dentistry at (734) 763-6933 or by e-mail (

Kate Ratliff
Dental Health Day Chair
University of Michigan School of Dentistry
Student Council

University of Michigan School of Dentistry
1011 N. University
Ann Arbor
Please enter the School of Dentistry at the North University Avenue entrance. Parking will be available at the Fletcher Street parking structure.

Monday, November 9, 2009

Class action lawsuit to compel Michigan to restore Medicaid dental benefits to adults

In July 2009, Michigan's Governor issued an executive order to discontinue funding for Medicaid dental benefits for adults over 21 years old. Preventive dental care was eliminated and treatment was limited to emergencies to treat pain and/or infection only. After the state legislature failed to restore funding for preventive dental care during budget negotiations in October, a class-action lawsuit was filed on behalf of 400,000 adults on Medicaid to "ensure that their federally-protected rights to a certain minimum level of medical services are protected."

A statement by Dykema, the law firm handling the suit, claims that "Michigan is violating key federal regulatory and statutory mandates". These claims include:

  • Michigan has failed to adopt and maintain programs and policies that operate to make dental care available for Medicaid beneficiaries throughout Michigan;
  • The state is acting in violation of the efficiency. economy, and quality of care provisions of Medicaid;
  • Michigan has failed to properly notify the federal Medicaid program that Michigan has discontinued providing dental services to adult Medicaid recipients.

Revenues for the state have declined precipitously over the last year, and the reduction in Medicaid services was part of sweeping cuts to services funded by the state. The actions of both the Governor and the state legislature have probably aggravated the state's budget problems. To "save" $5 million for dental benefits out of a total budget of more than $8 billion, the state will forego $16 million in federal matching funds from the federal government to fund Medicaid dental services.

The suit was filed October 28, 2009, in the U.S. District Court for the Western District of Michigan in Grand Rapids.

Medicaid dental benefits denied to adults in Michigan

Cutting off Medicaid dental benefits to adults with developmental disabilities is no small matter. In May of 2009, Governor Granholm did just that in an executive order in response to budget-wrecking declines in state revenues.

The cuts eliminating Medicaid-funded preventive dental care for adults over 21 years old, took effect on July 1st, 2009. They are described in changes to the state's Medicaid Provider Manual : "The adult dental benefit is limited to the following emergent/urgent services for the relief of pain and/or infection only... Routine examinations, prophylaxis, restorations, and dentures will not be covered. " In short, if you go to an emergency room with a toothache, Medicaid will pay for X-rays to diagnose the problem and for an extraction and maybe some painkiller, but will not pay to treat the underlying problem (such as periodontal disease), to fill a cavity, or to prevent the problem from occurring again.

For anyone who was already authorized for treatment of a dental problem before July 1st, 2009 and has a prior authorization on file, "providers have 180 days from the date the PA was approved to complete the services, according to existing Medicaid guidelines."

There are both short and long-term consequences to neglecting the dental health of people with severe disabilities: in the short-term, a tooth or gum infection that goes undiagnosed can result in pain, misery, infection, the loss of teeth, and even death. Ignoring gum and tooth disease may result in more expensive emergency room visits that fail to treat the cause of the problem. In the long-term, a lack of preventive dental care has also been implicated in the development of chronic diseases such as diabetes and heart disease.

As a parent, I mostly worry about someone like my Danny, who can't tell you that he is in pain or why he is uncomfortable. He can only show you in vague ways that something is the matter: he might have more seizures, be unable to sleep, scream (more than usual), or not want to eat. How do you rule out dental problems unless he has routine examinations, X-rays, and cleanings to diagnose problems early and either fix them or keep them under control? And what about people who have to be anesthetized for even routine dental evaluations? How bad will the problem have to be before Medicaid will authorize treatment or hospitalization or, in emergency situations, a dentist will have any confidence that a procedure will be covered by the person's Medicaid benefits?

There has been at least one death in Michigan since Medicaid adult dental benefits were substantially eliminated. According to The Grand Rapids Press in a story by Kyla King, Northern Michigan woman's death raises calls to restore adult Medicaid dental benefits, 10/22/09, a severely developmentally disabled woman from Alpena died reportedly from an untreated infection in her mouth. The woman had been scheduled for surgery in June 2009, but had other problems that postponed the surgery. Because of her severe disability, she needed to be hospitalized and anesthetized for the procedure. The dentists at the clinic in Cheyboygan, Michigan, were going to perform the procedure without charge, but the woman died while waiting for Medicaid approval of the $5,000 in hospital charges. The Michigan Department of Community Health admits that the death was indeed tragic and is looking into confirming the circumstances of the death.

The story in the Grand Rapids Press did not explain why there was a problem getting approval from Medicaid for the procedure when it was already scheduled for June, but was postponed. Was there not already authorization to do the surgery that would have covered the procedure for 180 days? Regardless of the details of the story, it is chilling that an infection in the mouth of a severely disabled woman could have resulted in death while awaiting Medicaid approval of coverage for a procedure that might have saved her life. How many more preventable deaths will it take before funding is restored for Medicaid preventive dental care?

Friday, October 30, 2009

WISD millage opponents funded by Ann Arbor real estate company

According to an article in, the opponents of the WISD millage proposal are outspending proponents by nearly $30,000. Most of the money has come from McKinley, an Ann Arbor real estate company.

Albert Berriz is the treasurer of Citizens for Responsible Washtenaw, an organization opposing the millage that would raise operational funds for local school districts. He is also CEO and president of McKinley.

Berriz was one of two community members on's editorial board, but resigned the position due to his involvement in the school enhancement millage campaign. came out against the millage on October 25, 2009.

The Washtenaw Intermediate School District millage election is on Tuesday, November 3rd, 2009.

WISD Millage Proposal on the Ballot 11/3/09

On Tuesday, November 3rd, 2009, voters will be asked to approve a millage increase proposal for the Washtenaw Intermediate School District (WISD). Although a large part of what the WISD does is related to special education, the purpose of this millage is to enhance operational expenses for all students in the 10 school districts in Washtenaw County. All funds raised will be passed on to local school districts. Neither the WISD nor the state will receive funding from this millage.

For a thorough report on the proposed millage, the reasons for it, the pros and cons, and background information on state and
local funding for K-12 education, I recommend the article in the Ann Arbor Chronicle by Mary Morgan entitled Does It Take a Millage?, October 19, 2009. It includes links to more detailed information and websites supporting and opposing the millage. also provides coverage of the issue here.

According to the Ann Arbor Chronicle article:

  • The proposal on the ballot calls for collecting 2 mills countywide, each year for five years. A mill is $1 for every $1,000 in a property’s taxable value (about half the market value). For a home in Ann Arbor with a market value of $200,000, an increase of 2 mills would add about $200 to the $1700 now paid in school taxes. The increase would raise $30 million to be distributed among the county’s 10 school districts based on the number of pupils in each district.
  • State control of education funding: In 1994 with the passage of Proposal A, the state, with the approval of the voters, took away much of the local control of school funding in exchange for easing escalating local property taxes and creating more equitable funding across the state. Proposal A put a cap of 18 mills on local property taxes for schools, although school districts can raise additional local millages for building construction, repairs, and maintenance.
  • Plugging holes in the state School Aid Fund (SAF): The School Aid Fund is made up of pooled revenues from property taxes, sales, income taxes, and other sources. The state pays a per-pupil-allotment out of this fund which is a variable rate set by the legislature. With declining revenues for the SAF, the fund has been shrinking. The amount available for the current fiscal year is still in dispute and it is possible that as state revenues fall, further cuts could be made later in the year. In the past, money from the state’s General Fund has been used to plug holes in the SAF, but the General Fund revenues are declining sharply. Federal stimulus money has also been used, but is not expected to be available beyond the 2010-11 fiscal year.
  • Local school districts: School districts are still uncertain about how much money they have available this year and are even less certain about what happens next year. The state caps the amount that can be raised from local taxes for operating expenses, but the Washtenaw Intermediate School District is authorized to levy enhancement millages for operating expenses. The millage increase is being proposed to fill the gaps in state and local funding to maintain quality education and to provide some stability in funding over the next 5 years.
  • Pros & Cons: Opponents of the millage contend that the schools have not made sufficient changes to lower their spending and that residents are in no shape to absorb additional taxes. Supporters of the millage say that the schools have been cutting expenses and consolidating services as well as getting some concessions from the unions. They also point to the importance of maintaining quality education to promoting economic development in the county.

Everyone agrees that changes are needed at the state level. Among those changes suggested are moving to a graduated income tax, expanding the state sales tax to services, controlling retirement costs, and considering changing term limits for legislators, all of which would help in the state’s overall financial crisis.

Information on elections in Washtenaw County here.

Information on polling locations here.

Jill Barker
Friends of the Developmentally Disabled

Wednesday, October 14, 2009

The University of Michigan studies thinking speed in children with cerebral palsy

This is a request for participants from the University of Michigan Adapted Cognitive Assessment Laboratory in a study of thinking speed in children with cerebral palsy:

The Adapted Cognitive Assessment Lab (ACAL) at the University of Michigan is actively recruiting students to participate in a Thinking Speed Study. Students must be:
  • Between the ages of 8 and 16 years of age.
  • Have a medical diagnosis of Cerebral Palsy.
  • Have a parent/guardian present to provide written and informed approval for their child to participate in the study.
  • Have no medical or psychiatric condition that affects the tests, including changing doses of medication or a history of brain injury
Participants can expect to spend two to three hours in the study, and will be paid a $50.00 honorarium for their time and effort.

This study is funded by the National Institutes of Health and the U.S. Department of Education and is approved by the University of Michigan’s Institutional Review Board (HUM00014311).

Standardized testing requires a child to speak, write, or point to answers. This study is designed to separate physical capability from measurement of thinking capability. The ACAL investigators conduct these tests through a computerized program that uses Visual Inspection Time and Assistive Technology. Visual Inspection time is measured by the amount of time a person needs to look at something before they can correctly make a simple judgment about what he/she just saw – slow movement does not mean slow thinking.

To learn more about how your child can participate in the Thinking Speed Study e-mail or call 734-936-6604 or 734-763-6189.

If you are interested in Cerebral Palsy research and Adapted Cognitive Assessment Laboratory studies you may also enroll your child with the University of Michigan’s engage Registry here.

Physical Medicine and Rehabilitation
Adapted Cognitive Assessment Lab
325 E. Eisenhower, Suite 100
Ann Arbor, MI 48108

Thursday, October 8, 2009

Update on Washtenaw County programs and other budget news

Donna Sabourin, the Director of Community Supports and Treatment Services, attended the last Friends of the Developmentally Disabled meeting on September 24th, 2009 and was able to give us an update on CSTS vocational services to people with DD.

Without knowing how much the Washtenaw Community Health Organization will be getting from state general funds, the WCHO granted an extension of the contract with CSTS for 90 days. Some cuts to CSTS were made final by the Washtenaw County Board of Commissioners, but these cuts did not affect vocational and skill-building services.

According to Donna, the WCHO would like CSTS to continue providing vocational services and to take in two other programs that were contracted to other providers. A work skills program that has provided supported employment services to one group of consumers for 10 years would go to CSTS along with a program for another group of consumers that has has had three providers in 5 years. By taking in these two programs, there will be less choice in providers for employment programs, but it will give the second group of consumers more stability. CSTS has also said that the agency can provide these services without increasing staffing, saving money for the WHCO.

At the time of the Friends meeting, Donna said that a tentative agreement on concessions from the employees union had been reached. According to, October 7, 2009, Washtenaw County workers union gives up raise to save jobs, the membership of AFSCME Local 2733 has indeed agreed not to take a previously agreed on 3% raise in 2010 and to forgo a salary adjustment in 2011. The agreement will save $5.2 million over the next two years and 120 - 150 county jobs. The union has also agreed to take 8 "bank days", similar to furlough days.

Bob Guenzel, Washtenaw County Adminstrator, according to, had high praise for the union:
I want to give a special pat on the back to our labor partners...They really came through and, remember, they didn't have to sit down to the table with us at all. They stepped up and, in my mind, really put the county first and put services first.

The Washtenaw County Board of Commissioners also voted unanimously to restore over $442,750 in human services funding in exchange for $450,000 in capital expense reductions. It appears that the county is on the verge of having a balanced budget for the next two years.

The state is operating on a continuation budget for 30 days while the legislature continues to negotiate a balanced budget. At the September WCHO meeting, there was discussion of the likelihood of severe and unprecedented general fund cuts to the Michigan mental health budget. The state seems unwilling or unable to come up with a long term solution to deficits in mental
health funding. The impact of reduced general funds for mental health will be felt more by people with mental illness than by those who are developmentally disabled.

The WCHO October meeting is scheduled for Tuesday, October 20th, 2009 from 6 - 8 p.m
. at the LRC, 4135 Washtenaw Ave, Ann Arbor. For a schedule of official meetings in Washtenaw County, you can view the calendar of events here.

Friday, October 2, 2009

Danny B. is thirty-three. Heavens, what does that make me?

Danny was born on the morning of October 2nd, 1976. He was small, but vigorous, the doctor said. As you can see, he looked a little worried in his first picture. As it turned out, he had a right to be worried.

A precipitous drop in his blood sugar was followed by seizures and brain damage (severe, as it turned out). Danny was transferred to Stanford Hospital from our smaller hospital in Redwood City, California, where he spent the next two weeks. One of the kinder
neurologists at the hospital told us that it might take him longer to learn to walk and talk than it takes other children. We are still waiting.

During that first year we made regular visits to the Stanford Neurology Clinic on Brain Damage day, as I began calling it. In those days Danny was having almost continuous small seizures which made him cranky. Unless he was eating or sleeping, he screamed. We were ushered into a small holding room, always painted a pale green, to wait for several hours before we were seen by the "pretend" doctor, an intern or a resident. Then, with our screaming child, we would wait for another hour for the "real" doctor to appear. He would ratchet up Danny's seizure medications and tell us to come back in a few weeks.

Finally, at one visit, we waited over three hours with our shreiking
infant before a new intern, the "pretend" doctor, walked in the room and said, "What seems to be the problem today?" I wanted to scream at this fool and tell him to look at the records before he walked in the room and "pretended" to be helping our son. John, my husband, was much cooler and told him calmly that if the "real" doctor was not in there to see us within ten minutes, we were going home. We waited twenty minutes and then walked out.

It felt like parent liberation day to us. When we got home, we received a phone call from the "real" doctor, furious that we had walked out. John asked him why they scheduled patients to wait for three hours before being seen? The "real" doctor said, fuming, that Stanford is a teaching hospital and they can't predict when patients will be seen. John said we lived close enough that they could just call when they were almost ready to see us and then we wouldn't have to wait three hours. Interestingly enough, the neurologist wrote an almost apologetic letter to our pediatrician about the incident. We switched to a private neurologist after that. By this time we knew our limits when it came to putting up with unhelpful people and felt a little more in control of the situation with our poor baby boy.

Danny at ten, still not walking and talking, still screeching but not quite as much as he used to, and still having all kinds of problems secondary to cerebral palsy and the brain damage he suffered at birth, but isn't he cute? And his new school in Ann Arbor, Michigan, was his and our salvation, especially with the birth of our second son with cerebral palsy and our sweet newly adopted daughter.

Danny is now an exuberant young man, still having "Danny Days" now and then. He had his first party on Thursday as a favored alumni at his old school with yogurt pie for everyone. Today, he celebrated with cupcakes at his group home. Tomorrow, his grandparents will come over to have lunch and blueberry pie, one of Danny's favorites. Eating big gooey desserts is one of his greatest pleasures. His happiness is our happiness.

Happy birthday, Danny Boy!

Wednesday, September 16, 2009

Constitutional challenge to budget cuts?

This is from the MARO Employment and Training Association weekly update:


Michigan Protection and Advocacy Service (MPAS) stated this week that it is pulling together the agency's legal talent needed to consider filing a Constitutional Challenge against the state of Michigan if the State Legislature and governor move forward with the anticipated massive cuts in services to people with disabilities.

Elmer Cerano, executive director of the nonprofit agency stated, "In our frequent and intensive visits with State officials the answer is always the same, 'we have no money.' Of course we recognize the very real fiscal crisis facing the state; however, we take very seriously the promises of Michigan's Constitution, Article 8, Section 8, which provides:

Institutions, programs and services for the care, treatment, education, or rehabilitation of those inhabitants who are physically, mentally or otherwise seriously disabled shall always be fostered and supported.

Mark Cody, the organization's legal director stated, "Further reductions in General Fund appropriations for mental health services will place the most vulnerable of Michigan's citizens at risk. The state of Michigan is, or may soon be, in violation of the Michigan Constitution by failing to adequately fund services for individuals who are physically, mentally or otherwise seriously disabled."

Cerano has directed the agency's legal team to investigate the feasibility of bringing a Constitutional Challenge against the State for its failure to meet this constitutional requirement. "We will be carefully monitoring the impact of the budget cuts on the lives of people with disabilities," he says.

Elmer Cerano is the Keynote Speaker at the 2009 Michigan Rehabilitation Conference, October 21-23 at the Amway Grand Plaza in Grand Rapids.

Monday, September 14, 2009

Washtenaw ISD: Free sign language classes

This is from the Washtenaw County Special Education Information group:

Free Sign Language Classes
At Washtenaw Intermediate School District
1819 S. Wagner Road, Ann Arbor MI 48106
beginning on Wednesday, October 14, 2009

Instructor: Barbara Leonard

Twelve free sign classes will be held on Wednesdays,
beginning on October 14th.

Textbook required: Signing Naturally I.
(Wait until first class before purchasing.)

School/Preschool Signs -- 4:30 p.m. to 5:30 p.m. Learn:
  • the sign alphabet
  • signs for everyday phrases related to the school environment
  • signs for song, rhymes, and stories
  • proper use of gestures, idioms, body language

Basic ASL -- 6:30 to 7:30 p.m. Learn:
  • the sign alphabet
  • signs for everyday phrases
  • finger spelling
  • proper use of gestures, idioms, body language
  • deeper look into the characteristics of American Sign Language
The best way to register is to register on the WISD website . Click on Services--Staff Development Services--Workshop Registration or use this link .

If you do not have access to a computer, you can call Barbara Leonard
at 994-8100 x1532 and leave a message with your name, address, and
phone number.

Friday, September 11, 2009

Washtenaw County funding cuts for DD services

The Washtenaw County Board of Commissioners (BOC) met on September 2, 2009. During public participation at the beginning of the meeting, at least five people, some with their disabled family member, made statements to the commissioners opposing proposals to reduce funding to Community Supports and Treatment Services' (CSTS) vocational and skill-building programs. The BOC was genuinely moved by the family members who talked about how much they rely on these programs for their loved ones and the distress it causes when programs are abruptly changed or terminated. The commissioners appeared not to be aware of the heartfelt opposition to these proposals.

The meeting was covered by and the Ann Arbor Chronicle .

Part of the meeting that was not covered by local on-line news, were comments and questions by Ronnie Peterson, a commissioner from Ypsilanti. He has personal experience with a disabled uncle whom his family cared for and was especially sympathetic to the concerns of families. First, he emphasized that the BOC has not taken any steps on CSTS funding. He was surprised by the opposition from families concerning cuts in funding by the county that could result in CSTS losing many programs that families rely on. He wondered what steps CSTS had taken to involve and inform families of possible funding cuts, before the BOC was notified of the impact these cuts would have on CSTS programs. He said he would not want to approve something opposed by consumers.

Donna Sabourin, the director of CSTS, spoke much later in the meeting to update the BOC on CSTS funding. She said the Washtenaw Community Health Organization (WCHO) contracts with the CSTS to provide the vocational and skill-building programs that serve a large number of people with developmental disabilities. She presented three options for the future of these programs:

  1. The WCHO receives Medicaid funding for the vast majority of people participating in these programs and expects increases in Medicaid funds to help pay for services. The WCHO might increase funding to CSTS to make up for the cuts in funding from Washtenaw County and keep current programs, if funding permits.
  2. The WCHO could contract with other entities to provide the same services at less cost.
  3. The WCHO already uses other contractors to provide some vocational services. There has been a problem with some of these programs having to switch providers every year. The CSTS could bring these programs back to CSTS without increasing CSTS staffing, thereby saving money and maintaining their current programs with WCHO funding, including the increases in Medicaid funding.
The 3rd option may be the best, but it would require approval of the WCHO based on that agency’s estimate of future funding.

BOC meetings are available for viewing by webcast here. Past meetings are found in the archives. Under the viewing screen, there is a place where you can select an agenda item (such as Public Participation) and go directly to viewing that part of the meeting.

Important meetings coming up:

WCHO Board Meeting: Tuesday, September 15, 2009, 6 – 9 p.m. at the LRC building at 4135 Washtenaw Ave., Ann Arbor. Contact information: Suzanne Gondek at (734) 544-3014 or .

Washtenaw BOC Meeting: Wednesday, September 16, 2009, 6:30 p.m., Board Room in the Administration Building at 220 N. Main St., Ann Arbor.

Jill Barker
Friends of the Developmentally Disabled

Wednesday, September 2, 2009

Quote of the Day

"If you want to build a ship, don't drum up the men to gather wood, divide the work, and give orders. Instead, teach them to yearn for the vast and endless sea."

Antoine de Saint Exupery

Monday, August 31, 2009

Cuts to Mental Health Services: Survival of the Fittest?

This letter appeared in on Sunday August 30, 2009:

When I read the article about slashing services to Washtenaw County's Community Support and Treatment Services in the
news, I thought: "Yep, here we go again with the survival of the fittest."

The (relatively young and healthy) people in power (elected to represent us, NOT resent us) could survive a cut in pay or hours, but the seniors and handicapped and mentally ill, WILL surely suffer to varying but great degrees.

Advocates must constantly remind these decision makers that the level of a community is determined by how well we take care of those who cannot take care of themselves (in all the myriad different ways).

Please put your heart before your head or wallet.

Jane Mariouw, Ann Arbor

Monday, August 24, 2009

August 18th WCHO board meeting with public comments on proposed cuts to CSTS

The Washtenaw Community Health Organization (WCHO) Board met on August 18, 2009. Since the WCHO's last Board meeting, the Washtenaw County Board of Commissioners met to discuss the possibility of cutting County services, including mental health programs. This is a summary of parts of the Board meeting that relate to that issue:

Patrick Barrie, the WCHO Executive Director, and Board members reiterated that the WCHO has a responsibility to provide services written into person-centered plans for people with developmental disabilities and that, in any case, those services will be provided whether it is through Community Supports and Treatment Services (CSTS) or through other contracted providers.

Washtenaw County is obligated to fund 10% of the WCHO budget, but it has gone well beyond that in the past in supporting mental health programs. It is the discretionary part (above their 10 % contribution) that can be cut.

The Impact Statement of program cuts from Donna Sabourin, CSTS director, is laid out on pages 11 - 22 of this document .

Public Participation:

During public participation at the beginning of the WCHO Board meeting, I noted that Donna Sabourin had presented Washtenaw County with an impact statement of possible cuts to CSTS and asked if there had been any attempt to consider consumers and family members’ views regarding possible cuts? (Board members agreed that they need to improve communication with families and consumers.) After I became aware of the possibility of cuts from the County, I heard more specifically that this could mean laying off 60 people from CSTS jobs in vocational, training, and day programs.

One of my concerns is that these types of programs (day programs, workshops, PACE programs, and enclaves) are easy targets for elimination by the state with support from advocates who would tell you that everyone can work at a paying job and live in the community like everyone else and that these programs are isolating and discriminatory. For people who need these programs, they are a lifeline for both consumers and their families and are a useful and necessary part of the system of care and services.

Another family member commented that contracting out services (which is a possibility if the County makes severe cuts to CSTS) is not always the best plan for the long term. He works for a car company that did that. They found that workers had a lower level of skills and that they saw a general degradation of services. They went back to hiring their own people rather than outsourcing the work.

More information on the WCHO and County and state budgets:

  • The WCHO has a fiscal year that begins on October 1st. The County' s fiscal year begins on January 1st. The cuts the county is contemplating would go into effect on January 1st, 2010.
  • Everyone is awaiting the State budget. At this time the strongest and most reliable funding will be from Medicaid. The Medicaid match from the federal government will be going up, based on the state’s financial problems. The state will be paid under the old rates until the state files a new agreement with the federal government.
  • The state got an increase of $1 billion in Medicaid stimulus money. With state revenues declining precipitously, the state used up the stimulus funds in three months. The state would have been in even worse shape without it.
  • Barbara Levin Bergman who is a County Commissioner and WCHO Board member said the WCHO needs a better method of explaining budget problems and offered her phone number for anyone who had questions about it. Here is her email address: .

After the meeting, I asked Barbara Levin Bergman which of the Commissioners meetings are the most important to attend. She said all of them. I will try to attend as many as possible and will pass on what I find out. I would love to have company at these meetings if any of you can attend.

Here are the meetings through the month of September:

  • 8/26 Administrative Briefing 5:00 p.m. Administration Conference Room
  • 9/2 Ways & Means Committee 6:30 p.m. Board Room, Administration Building
  • 9/2 Board of Commissioners 6:45 p.m. Board Room, Administration Building
  • 9/3 Board Working Session 6:30 p.m. Board Room, Administration Building
  • 9/9 Administrative Briefing 5:00 p.m. Administration Conference Room
  • 9/16 Ways & Means Committee 6:30 p.m. Board Room, Administration Building
  • 9/16 Board of Commissioners (Annual Meeting) 6:45 p.m. Board Room, Administration Building
  • 9/17 Board Working Session 6:30 p.m. Board Room, Administration Building

The other thing that Barbara Bergman suggested for us to do is for anyone with concerns about these proposed cuts to contact their own County Commissioner.

  • Here is a map of the County so that you can determine who your Commissioner is.
  • Here is a list of all the Commissioners with their contact information.

It is important for the County to understand that these programs, whether or not they are mandatory as far as the County is concerned, are essential for many people with developmental disabilities who have very few options available. Both they and their families are adversely affected by abrupt changes in their lives more than most people.

If you would like more information about the WCHO Board and what it is doing, you may ask to be put on an email list to receive the packet of materials sent out to the Board before every meeting. Email Suzanne Gondek at

Jill Barker

Thursday, August 20, 2009

Healthcare without the shouting

If you are tired of discussions about health care that involve shouting and swastikas, there are a couple of NPR programs on the subject that are both illuminating and civil.

The August 20, 2009 Here and Now (The Uninsured Congressman) features a discussion with
Representative Steve Kagan, a Democrat from Wisconsin, who is also a doctor. He has elected to go without health insurance until his constituents have available something similar to the health insurance offered to members of Congress. This is an interesting discussion of variability in health care costs and how he bargains for the care that he pays for.

On July 28, 2009,
Paul Krugman, Nobel Prize-winning economist, and Stuart Butler, a native of Britain and vice president for domestic and economic policy studies for the conservative think tank the Heritage Foundation, discuss how health care is financed on Fresh Air with Terry Gross. It is interesting how much they agree on.

Tuesday, August 18, 2009

Seeing Red - More on cuts to CSTS

Here is a statement dated August 10, 2009, from Bob Guenzel, the Washtenaw County Administrator on budget reduction options for programs that receive county funds. One thing that is important to understand is that when Guenzel talks about non-mandated services, he means that the county is under no obligation to fund certain programs but has done so in the past because of the benefit to the community. The WCHO does have an obligation to continue providing services written into person-centered plans for people with developmental disabilities, even if they are no longer provided by Community Supports and Treatment Services (CSTS).

Guenzel says:
At last Wednesday's Ways and Means meeting I presented the Phase II 2010/11 budget reduction options to the Board of Commissioners. These options included the reduction or elimination of many worthwhile programs, and undoubtedly will directly impact the community and the organization.

It's important to remember, however, that these are only options at the present time -- not my recommendation. No decisions have been made. There are no easy choices, and over the next few months the Board will deliberate the proposed alternatives and determine where the necessary budget reductions will be necessary.

The largest amount of money to be saved, however, comes from mental health programs provided by Community Supports and Treatment Services (CSTS). According to Sally Amos O'Neal from customer services, up to 60 jobs may be cut from vocational and training programs such as day programs, enclaves, PACE programs, and job coaching.

Important dates in the Washtenaw County Board of Commissioners budget process include:
  • September 11th - 2010/11 Budget Adjustment Recommendations Phase II will be posted to the web
  • September 16th - Guenzel will present his 2010/11 Budget Adjustment Recommendations Phase II to the Board
  • November 18th - The Board is scheduled to adopt a balanced budget
Another document worth looking at if you want the gory details on possible cuts to various programs, how much money will be saved and how many people will be laid off, look here. Those specifically involving mental health are on pages 11 - 22.

Friday, August 14, 2009

Slashing of mental health services begins

AnnArbor.Com reported last week in an article entitled "Washtenaw County Board has tough decisions to make; 181 county jobs on the line", that the Washtenaw County Board of Commissioners is on the brink of cutting 181 county jobs. The County is facing a $30 million deficit.

While many other cuts are being considered, the largest are in Mental Health services:

The county could realize up to $2.4 million in savings through reductions to mental health services, which would eliminate 91.4 full-time jobs.

Employees of Community Supports and Treatment Services, the public agency in Washtenaw County that provides mental health services to people with developmental disabilities, mental illness, and substance abuse problems, work for Washtenaw County. The County's proposal so far is to eliminate over 90 positions at CSTS. ALL vocational programs, including several day programs, PACE groups, job coaches, and enclaves will either be eliminated or contracted out in this proposal.

The exact impact of this is uncertain. The WCHO gets about 10% of its funds from the county. At a Washtenaw Community Health Organization Board meeting earlier this year, it appeared that county cuts would not have much impact because the WCHO relies mostly on state and federal funds and the agency has been successful in obtaining grants that make more funds available.

The WCHO has sent out a letter to consumers with the following paragraph:
At the request of the County, Donna Sabourin, Executive Director of CSTS, submitted an impact statement to the Washtenaw Board of Commissioners showing the possible impact of cuts in county funding. The proposal listed possible position reductions, and potential outsourcing, cutbacks and/or elimination of various CSTS operated programs. While it is necessary for CSTS to clearly identify reduction options and scenarios for the Board of Commissioners, the WCHO has an obligation - under state law and federal waiver requirements - to make available certain services to particular priority groups and eligible beneficiaries, within the constraints of the funds appropriated by the Legislature for these purposes and populations. To meet these obligations, the WCHO’s contract with CSTS for the budget year that begins October 1st may stipulate provision of programs/services that are different from those currently prioritized by CSTS for retention, reduction or elimination.

No final decisions have been made with regard to program, provider, or service changes.

At this point, questions about the letter to consumers should be directed to Sally Amos O'Neal from WCHO Customer Service: Phone: (734) 544-6807 Email:

In the meantime, most of the groups that are being affected by the cuts have raised Holy Hell at recent meetings of the County Commissioners. I think it's time to make the concerns of people with developmental disabilities heard, but we need more information. The next Board meeting of the WCHO is on Tuesday, August 18, 2009 from 6:00 pm to 8:00 pm at the Learning Resource Center at 4135 Washtenaw, Ann Arbor, MI (enter from Hogback Road, near the Washtenaw Ave. Interstate 23 overpass).

There is time for audience participation at the beginning and end of the meeting.

Other meetings coming up are the County Ways and Means committee on 9/2/09 6:30 to 6:45 followed by the Board of Commissioners from 6:45 - 8:00 pm. Check the calendar here for information on the location of these meetings and contact information.

I am not sure yet which are the most important meetings to attend, but let's begin with the WCHO Board meeting on Tuesday August 18, 2009 so that we can ask some pertinent questions about what is happening. Even if all the services are outsourced, these kinds of cuts will gut the CSTS of experienced employees, which can't help but have a huge impact on our family members.

I will send updates when they are available. If any of you have any information or questions about this, let me know.

This and further information will be posted on my blog at

Jill Barker
Friends of the Developmentally Disabled

Thursday, August 13, 2009

Michigan Conference on Medicaid Waivers

Home and Community Based Waivers are available to provide a wide array of services to people living at home or in other community settings including group homes. Your developmentally disabled family member may already have a waiver - if that is the case, you were asked to give consent to use waiver services instead of placement in an Intermediate Care Facility for the Mentally Retarded (ICF/MR).

Families usually don't receive much information about the waivers, the services they pay for, and how your local Community Mental Health agency is spending the money from the waiver. But access to HCBS waivers is often vitally important to getting all the services your family member needs to live safely and comfortably in whatever setting is appropriate.

This conference may help you to fill in the gaps in your knowledge about Medicaid waivers and how it might help your family. I'm hoping that's the case. As always, these mental health people are in love with acronyms and funny language ("wrap-around facilitators"???) Here is the the text of the flyer sent out by the MACMHB and the Michigan Department of Community Health:

MI Association of Community Mental Health Boards, in partnership with the MI Department of Community Health presents:

Annual Home & Community Based Waiver Conference
September 9 & 10, 2009

Kellogg Hotel & Conference Center
MSU, East Lansing, Michigan

3 Featured Waivers:
  • Children's Waiver Program (CWP)
  • Habilitation Supports Waiver (HSW)
  • Serious Emotional Disturbance Waiver (SEDW)

Workshop Goals and Objectives: Learning objectives for each educational activity are identified within the body of the brochure.

Who Should Attend: Case managers, supports coordinators, wrap-around facilitators, clinicians, administrative staff, providers, consumers, and family members.

Consumers & Family Members: A special rate is available for consumers and family members. [The special rate is $50 for the whole 2-day conference.]

Continuing Education Credits: The Michigan Association of Community Mental Health Boards (MACMHB), provider #1140, is approved as a provider for social work continuing education by the Association of Social Work Boards (ASWB) through the Approved Continuing Education (ACE) program. MACMHB maintains responsibility for the program. Social workers participating in this conference (9/9/09-9/10/09) may receive a maximum of 10.5 continuing education clock hours.

Evaluation: There will be an opportunity for each participant to complete an evaluation of the conference and the instructor. If you have any issues with the way in which this conference was conducted or other problems, you may note that on your evaluation of the conference or you may contact MACMHB at 517-374-6848 or through our webpage at for resolution.

Includes Plenary Sessions such as:
  • “Asperger’s and the Five Senses”and Concurrent Workshops such as:
  • "Medication and the Child and Teenage Brain: What do Psychiatrists do? What do Medications do? Can we all Work as a Team?"
  • "Getting Started in Self-Determination"
  • "Benefits and Community Supports for Persons with Developmental Disabilities and Mental "Illnesses
  • "Increasing Independence for Children with Autism through Visual Supports"
  • "Project ImPACT: Teaching Parents of Children with ASD Strategies to Enhance Their Child’s Social Communication"
  • and much more

Other MACMHB Trainings here.

Wednesday, August 12, 2009

WCHO Oversight of Provider Agencies

In May 2009, the WCHO Board asked for a report from the Organization Operation Committee (that is an awkward name, but that really is what they call it) to give the Board a better understanding of how the WCHO carries out its oversight and monitoring responsibilities of the provider agencies that are contracted to provide services to WCHO consumers.

This request was motivated in part by problems with Community Residence Corporation, an agency that provides community living supports to consumers in unlicensed settings as well as staffing for licensed group homes. According to a report to the OOC on Provider Oversight & Monitoring (June 2009), since Michigan was granted the Medicaid 1115 Waiver, Community Mental Health agencies have created opportunities for more consumer choice, resulting in the growth of the contractor provider network. Many consumers have moved out of licensed settings into smaller supported living sites. Currently there are over 220 individual service delivery sites that must be monitored. This rapid growth in the number of sites has strained the capacity of the WCHO to assess the services being provided and to oversee and monitor contracted providers.

The June 2009 report goes on to discuss "risk management" and the current "monitoring framework".

I did not attend the July WCHO Board meeting, but at the August 5th, 2009 OOC meeting there was further discussion of
continuing problems with oversight of provider agencies. Community Residence Corporation has been given provisional status to continue to provide services. Although there has been staff training, there was a question as to whether training included a "competency component" - did the training make the staff more competent at handling situations that have caused problems in the past?

There was also a discussion of two contracts that WCHO was recommending be approved:

One was to add residential services for a consumer with predatory sexual behaviors who is leaving Mount Pleasant Center to a contract with Spectrum Community Services. Spectrum has experience with this population and has a licensed home in Wayne County that will cost the WCHO $188,106 per year. (There are three other residents who live in the home at the same cost per person.)

Leila Bauer, a WCHO Board member and OOC member, had questions about the ability of Spectrum to provide the services. She has been in contact with families whose family members live in a supported living situation managed by Spectrum. Even though staff are there 24 hours per day, the police have had to be called several times, and there have been some serious incidents. Families do not know what their rights are or who to complain to and Spectrum has not been responsive.

decided to recommend the contract for additional services by Spectrum. In addition, a recommendation was made by the committee for the WCHO Board to file a recipient rights complaint on behalf of the consumers at the supported living site and for recipient rights to begin an investigation into the quality of services being provided.

The second contract was for the CHC Group, LLC that currently provides services in Monroe County. The proposal is to add CHC to the community living supports panel to provide Supported Employment services in Washtenaw County. The OOC has been discussing the problem of having too many providers to oversee, and the question came up as to why they should add another provider? The OOC recommended approval of the contract, but was not entirely comfortable with the decision.

These particular items on the OOC agenda were the ones I paid attention to because they affected people with developmental disabilities. There were other items involving other WCHO consumers, but those groups will have to get their own blog.

The Committee had many thorny issues to deal with and I had the impression that they lacked all the information necessary to feel comfortable with their decisions, but they are expecting to recieve more information and to be kept informed by WCHO staff.

Tuesday, August 4, 2009

Detroit Researcher to Discuss OCD on ABC's Primetime

A Children's Hospital of Michigan psychiatrist and researcher at Wayne State University in Detroit, Dr. David Rosenberg, will appear tonight on ABC's "Primetime" at 10 p.m. to discuss the role of glutamate in Obsessive Compulsive Disorder (OCD). According to an article in the Detroit Free Press, "WSU prof ties chemical to obsessive compulsive disorder", 8/4/09, an imbalance of glutamate might explain OCD.

The discovery in Dearborn, Michigan, that a man with OCD was keeping more than 100 Chihuahuas in filthy and inhumane conditions, has brought the issue to light recently. The behavior the man exhibited was probably an extreme form of the disorder called hoarding.

The article also refers to another extreme case in a local nursing student whose fear of choking prevented her from eating since the age of 10. She has since been successfully treated for her OCD.

According to the Free Press article:
Rosenberg said glutamate keeps the fear center of the brain on high alert, even when there is nothing to be afraid of. “When you check the door to make sure it’s locked,” the fear center “gives you the all clear, the door is locked, and you go to sleep. In children with OCD, you never get that signal, and in fact the fear cen­ter warns the danger is worse than before,” Rosenberg said. OCD sufferers are haunted by anxieties that never go away...

Treatments are available for the disorder.

Thursday, July 16, 2009

Work: A Civil Right or A Choice?

I guess I should feel fortunate that my two adult sons will never be able to do anything that resembles work. The most rabid ideologues who insist that even the most profoundly disabled citizens can and should work at a paying job, tend not to spout this kind of rhetoric around people like my sons. How foolish to talk about a person who can't speak, feed himself, wipe his own nose,and who needs a diaper change every couple of hours as a good candidate for a paying job.

On the other hand, I know people whose sons and daughters can and want to work. Their children are in the heartbreaking position of having the hardest time proving themselves worthy of employment when times are good and the first to be layed off when times are tough.

In Washington state, as in Michigan, the idea of paying jobs for everyone is part of the move toward inclusion that has exceeded the bounds of common sense. An article in the Seattle Weekly, Developmentally Disabled, Unable to Speak...Ready to Work?, reports on the state's 3-year-old policy that encourages all developmentally disabled people to find paid employment.

The article begins and ends with the often frustrating task of an employment consultant for a non-profit organization that provides training and support for integrated employment of people with disabilities. He has a case-load of 12 people with severe disabilities for whom he attempts to match their skills to paid employment. His first successful job placement was in January 2009 but it only lasted three months. Another job lasted for an hour and other job possibilities evaporated with hiring freezes.

The article recounts some interesting personal stories about the push for integrated employment and reveals a healthy skepticism by parents. As one parent says, "It's their agenda. It's not my daughter's agenda."

Washington state has decided that all activities it funds for developmentally disabled adults under age 62 will be related to finding and keeping jobs. Sheltered workshops, that have worked well for some and not for others, are being phased out. Recreation programs are no longer being offered as an alternative to job programs except for a limited number of people (35) who have been granted an exemption by the state.

Ray Jensen, the director of King County's Developmental Disabilities Division sees employment as a civil right and further claims that any program that congregates developmentally disabled people is no longer desirable or allowable: "I can show you law after law that says we can't segregate people."

I do not have the foggiest idea which "law" he is referring to, but it must be the same imaginary law that advocacy groups in Michigan cite when they claim that the existence of residential facilities, group homes, center-based school programs, and other programs designed specifically for people with developmental disabilities violate the civil rights of the people they serve.

Phasing out and eliminating costly but necessary programs for people with severe disabilities will save the state money, but the article points out some of the added costs of the state's approach. The cost of a full-time job coach for one man is $2,250 per month (that's around $33,000 per year). A sheltered workshop where one supervisor looks after a group of seven people costs about $7 per hour compared with $25 per hour for one-on-one support. One family referred to in the article decided to have their daughter live in a full-time, live-in institution paid for by the state, because there was no other way to get services appropriate to their child's needs.

A full array of programs is obviously necessary to meet the needs of this diverse population. As one parent puts it, keeping in mind the civil rights of her daughter,
"If she is too disabled to work, then she doesn't get [state assistance]. If you think about discrimination against people with disabilities, you expect that from the outside world-- not from people in the disability community."

Tuesday, July 7, 2009

WCHO Recipient Rights

Yet another meeting...

The Washtenaw Community Health Organization is our local Community Mental Health agency that serves people with developmental disabilities as well as people with mental illness and substance abuse problems. Anyone who suspects that a person receiving services through the WCHO has had his or her rights violated may file a complaint with the WCHO Office of Recipient Rights. It is especially important for employees of provider agencies to file complaints on behalf of the people they work with and it is a serious offense if they fail to do this.

Rights violations include various degrees of neglect and abuse, unnecessary invasion of privacy and confidentiality, unsafe living conditions, failing to provide services suitable to the person's needs, failing to treat the person and family with dignity and respect, to name just a few. The Policies and Procedures for the CMH Partnership of Southeast Michigan provides comprehensive information on the rights of people served in the mental health system.

The Recipient Rights Advisory Committee for the WCHO met on June 18, 2009 to review recent data on rights complaints. The data for the second quarter of this fiscal year (January through March, 2009) shows a large increase in the number of complaints received over the same quarter last year (118 versus 66 last year) as well as a large increase in the number of substantiated allegations (allegations that the Recipient Rights determined to be rights violations). This year there were 72 substantiated complaints as opposed to 30 last year during the same quarter.

There have been serious problems with one provider agency that has generated a number of complaints, but this is not enough to explain the increase. The most complaints have been from residential group homes for the developmentally disabled (19) and supported living placements (39). Supported living placements are unlicensed and serve up to 4 people with developmental disabilities with services provided in the home.

Only two of the incident reports came from families or guardians with 58 originating from the Office of Recipient Rights, 25 from recipients, and 24 from staff. It is especially important for families and guardians to be aware of complaint procedures and to use them when problems arise to ensure accountability and to correct problems within the system of care.

For more information on rights violations, go to the WCHO Recipient Rights Web site on how to file a complaint.

The Recipient Rights Advisory Committee meets quarterly with the next meeting in September 2009. There are two openings on the committee. If you are interested in joining the committee or have other questions about recipient rights, contact:

Shane Ray, Recipient Rights Supervisor
(734) 544-3000

Thursday, May 21, 2009

WCHO Board Meeting, May 19, 2009

"I go to meetings so you don't have to."

The Washtenaw Community Health Organization receives state, federal and local funds to serve people with developmental disabilities, mental illness, and substance abuse problems in our county. I have started to go to WCHO Board meetings to glean information that might be relevant to people with developmental disabilities and to get a better understanding of what exactly the WCHO does and why.

Much of the time I feel like I am in a Peanuts comic strip listening to the adults talking, who never say anything except,
"blah, blah, blah..."
It comes out a little differently here though - more like,
"blah, blah, ORR, blah ARR. blah, blah, Engagement Center, blah, OOC, blah, blah, blah, Integrated Health Care Management, blah, blah, SAMSA, blah, blah, blah, PIHP, etc."
I have confidence that some of this will be decipherable with time.

Here is what I learned:

Patrick Barrie, the WCHO acting Executive Director, gave the Director's Report:

  • The Governor's Executive Order from a couple of weeks ago laid out cuts of $10 million in"non-Medicaid" funds for mental health. CMH Boards will have cuts in funding from 1-5%, with Washtenaw County lucking out at the 1% level, at least so far. This amounts to a $74,000 cut in state funds.
  • The governor's order was quickly approved by the legislature, so there is no going back to restore the $10 million, but there may be appeals concerning the distribution of the cuts for the state's community mental health agencies.
  • The WCHO is going to get two grants for disease management programs. A phrase repeated several time was "Integrated Health Care" which has something to do with merging behavioral health care with medical health care. Using the phrase is apparently one way to make sure that mental health care is not forgotten in the push for health care reform. Everyone is a bit nervous about how mental health care will fit into the health care system of the future.
  • Policies on 1115 waivers (these are Medicaid waivers that allow a flexible use of Medicaid funding) are redone with every administration. Policy changes are expected at the federal level, but so far no one has been appointed to head the Federal Centers for Medicare and Medicaid Services.

At the April WCHO meeting, there was some discussion about the Engagement Center. I assumed that this was something like a clubhouse for people with mental illness, but that would be wrong. As was made clear at the May meeting, it is a place for people who are intoxicated by alcohol or drugs to go. Its purpose is to divert people to a more appropriate setting than a hospital emergency room to sober up. It could be used by people with developmental disabilities if they found themselves in this condition. Not likely for my kids.

The WCHO's Application for Renewal and Recommitment, the ARR, will be submitted to the state in June to renew the contract to provide mental health services. A summary was provided for the Board's approval.

As usual, the Devil is in the details.
I doubt that the Board has a much better idea than I do of what the WCHO is promising to do. Under the category of Assuring Active Engagement (there's that word again), the ARR promises full implementation of the "DD Outcomes tool", whatever that is. The agency will also "refine reports to analyze data pertaining to Community Life Domain.." and adopt system-wide the Evidence-Based Practices for Supported Employment (as opposed to practices not based on evidence?). Under Improving the Quality of Supports and Services, something or someone will "move to relational based contract where outcomes and performance targets are established with providers".

My head hurts.

A WCHO sub-committee, the Organization Operation Committee or O.O.C., submitted a preliminary communication regarding management and oversight of certain providers who staff supported living arrangements for particular consumers. Reading between the lines, there have been some problems with this and the committee is reviewing policies for monitoring these providers. An initial assessment indicates that these policies are inadequate. The size of the provider network has contributed to the inability to adequately monitor the provider's performance.

Intriguing. I will find out more. The next meeting of the O.O.C. is on June 3rd, 2009, 8 - 10 am at the Library Learning Resource Center, 4135 Washtenaw Ave., Ann Arbor, near the intersection of Washtenaw Ave. and Hogback Rd.

Martha Bloom, a parent of a DD adult, was sworn in as a new WCHO Board member. She is the VP of the Ann Arbor Area Community Foundation and involved with other families in Intentional Communities of Washtenaw .

More information on the Internet:
  • The Calendar where you can find when and where the WCHO and its subcommittees meet.
  • A list of WCHO Board Members and contact information.