Monday, April 27, 2009

How to eliminate a $10.3 million deficit

According to an article in the Detroit Free Press, 4/26/09, Macomb County Commissioners plan to vote to increase property taxes by 0.356 mills. The increase would cost the average homeowner only $27 a year more in taxes and turn the county government's $10.3 million deficit into a $1.2 million surplus.

County governments contribute to the cost of mental health services and a wide array of other social services and health programs. Revenues raised through tax increases do not erase all problems with the mental health system, but is does help. An informed and active citizenry is necessary to make sure the money is spent well and for the right purposes.

Sunday, April 26, 2009

Washtenaw Community Health Organization April 21st, 2009, Board Meeting

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

I don't particularly enjoy meetings like this. The people making the decisions affecting our family members get caught up in the technicalities of getting and spending money and overseeing programs in the abstract. It can seem very detached from the realities of life with a severely disabled family member. But considering Michigan's dire financial situation and the instability this creates in our system of care, I decided I need to keep up with what is happening locally as well as with the state. This is my attempt to make sense of our Washtenaw County community mental health system and its relevance to the people they serve:

The Washtenaw Community Health Organization is the administrative agency overseeing services to people with developmental disabilities, mental illness, and substance abuse problems. The WCHO collaborates with the University of Michigan to assure the provision of health care to the consumer populations. It contracts with other public and non-profit agencies to provide services. Community Supports and Treatment Services (CSTS), which used to be Community Mental Health, is the public agency that provides specialized services to consumers along with other contracting agencies.

The WCHO Board of Directors meets on the third Tuesday of the month at 6 p.m. at the Library Learning Resource Center, 4135 Washtenaw Ave., Ann Arbor, near the intersection of Washtenaw Ave. and Hogback Rd.

I did not get to the WCHO meeting in time to get copies of agendas, reports, etc., so I was missing the background materials that is available to the Board. That meant I had to stay awake and listen, not always an easy task.

The WCHO Board accepted a slate of new and returning Board members and elected officers.

In addition to overseeing mental health care in Washtenaw County, the WCHO serves as an administrative agency for three other county affilliates. There was discussion about scheduling a legislative meeting in Lansing including representatives from the affiliates to make their views known to legislators on the MDCH budget process. The feeling was that the Michigan Senate could be a stumbling block to the appropriations process and that it would be best to concentrate on talking with State Senators.

It is assumed that in May, reports will show a deterioration of revenues for the State.

The WCHO belongs to the Michigan Association of Community Mental Health Boards. The Association is changing its fiscal year and membership will cover the next 15 months, instead of 12 months. The cost will be over $2,000.

There was a lively discussion about whether MACMHB membership is worth the cost. It was generally believed that in the past, the organization offered leadership and policy direction. Recently the leadership has changed and the MACMHB is providing primarily training to CMH Boards. CMH Boards pay heavily to attend the state organization's conferences. [$2,000 doesn't sound like much in the grand scheme of things until you think about the help it might give a few families struggling to find respite care for their severely disabled adult children as parents try to hold onto their jobs and homes.]

Donna Sabourin, the director of Community Supports and Treatment Services, reported on the Community Crisis Response Team (CCRT) that responds to emergency situations where consumers are at risk for hospitalization for psychiatric problems. The service is primarily for people with mental illness, but the response team also has people experienced with developmental disabilities and will respond to crises involving both adults and children with developmental disabilities. Although many of the situations that the CCRT responds to end up with the person being hospitalized, the team has managed to divert a significant number by offering immediate stabilization and then follow-up that helps people get the services they need.

The CCRT will hold an Open House on May 1st, 2009, from 1 - 4 p.m. at 2051 S. State St., Ann Arbor, MI 48104 (phone:734-994-8048).

The CSTS is applying for a grant from SAMSA, the federal agency Substance Abuse and Mental Health Services Administration, for "behavioral health care integration". The grant is for $500,000 each year for four years.

The acting Executive Director of the WCHO is Patrick Barrie, who has worked in various capacities for the Michigan Department of Community Health (MDCH) for many years. The Board is seeking a permanent director and went into executive session to select the top three candidates for the position.

Tuesday, April 21, 2009

The Meaning of Life

Strange is our situation here on Earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to divine a purpose. From the standpoint of daily life, however, there is one thing we do know: that man is here for the sake of other men - above all for those upon whose smiles and well-being our own happiness depends. --Albert Einstein

There are other variations of this quote from Albert Einstein. I do not know where it came from originally. I happen to like this version, but I can't vouch for its authenticity.

Thursday, April 9, 2009

Autism: Research is pointing the way to understanding and treatment

According to a report on NPR's Morning Edition, April 8, 2009, Cyber Scout Puts Autism Studies On Faster Track, the Interactive Autism Network, IAN, is helping to recruit people with autism and their families for research. The Web site was created by the Kennedy Krieger Institute in Baltimore.

The inability to recruit people for autism studies has, in the past, held up research projects for months and years. IAN makes recruiting easier and allows large studies to proceed without delay. One such study was successful in linking high rates of depression in mothers with an increase in the likelihood of having a child born with autism.

Information needed to enroll in the database is given on the IAN Web site. It includes information on the eligible diagnoses considered for research.

Time Magazine, in its April 7, 2009 edition, features a story called Why Fever Helps Autism: A New Theory.

Parents of children with autism have been reporting for many years that their children's symptoms recede when they have a fever. Finally, the phenomenon was confirmed in a 2007 paper in the journal Pediatrics. Then two researchers at Albert Einstein College of Medicine tied the phenomenon to the locus coeruleus, a small knot of neurons located deep in the brain stem.

The locus coeruleus governs the release of the neurotransmitter noradrenaline which triggers the fight-or-flight response (alarm and arousal). It plays a role in the ability to pay attention to environmental cues, an ability that people with autism lack. It also regulates fever.

A malfunctioning locus coeruleus may be caused by genes damaged by environmental toxins and stress. A 2008 study showed that mothers who lived through a hurricane during pregnancy, had a greater likelihood of giving birth to an autistic child. Under extreme stress, the stress hormone cortisol from the mother may blast its way through the placenta and cause damage to this part of the brain. Yet another study shows a link between cortisol imbalance and Asperger's Syndrome.

As one step leads to another, the possibility of using medication to target noradrenalin receptors as a treatment for autism enters the realm of speculation.

See, it does pay to listen to parents.

Wednesday, April 8, 2009

More on H.R. 1255 ... pro and con

I received a comment from a reader who completely disagrees with my post about HR 1255. H.R 1255 is a proposed bill that allows residents of Intermediate Care Facilities and their legal representatives to opt out of class action lawsuits that could result in the closure or downsizing of the facilities where they live. I have seen many of these arguments before and they still don't hold up under scrutiny:

[Click here to see the full comment. Excerpts from the comment are in red.]

"Having a full range of appropriate remedies, including the use of a class action, has been a keystone to protecting the civil and legal rights of individuals with developmental disabilities in all facets of their lives, including community integration. The Developmental Disabilities Act of 2000 reaffirmed the authority of the Protection and Advocacy systems to use any and all legal remedies appropriate to ensure the protection of individuals with developmental disabilities, including class actions."

H.R. 1255 does not exclude the use of class action lawsuits by Protection & Advocacy. HR 1255 applies only to federally-funded attorneys before a lawsuit is filed and only to facilities that are certified as Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) and funded by the federal government.

Protection & Advocacy may proceed with a class action on behalf of those who consent to being represented, after all residents are given a time-limited option to not participate. It does make it less likely, however, that a class action would proceed, if most of the residents of a facility and their legal representatives oppose closure and support the availability of services provided in that setting. It might also avoid some of the results of deinstitutionalization that have occurred in the past - increased deaths, abuse, and neglect in community settings of the extremely vulnerable citizens who have been moved from these facilities.

"...current Federal Rules of Civil Procedure provide guardians and family members with a number of protections, or 'voice', including appropriate notice, class certification requirements, the right to intervene, and a fairness hearing on the final outcome..."

According to VOR:

...P&A has done (only) what is minimally required by law with regard to notice to residents and their legal guardians. Rule 23 does not require notice in class actions that seek injunctive relief, including class actions against ICFs/MR, in advance of or at the time of the filing of the suit. It requires notice to the class members only at the time of a settlement. These class action lawsuits also do not allow for class members to opt out.

Intervention is not an adequate option for legal guardians to the right to opt out. Intervention is not a matter of right and even when families discover in time that a suit is being brought and find the resources to seek intervention (a considerable burden), the request may be denied by the court (often on the grounds that the state is representing their interests). In addition, intervenors do not have the same rights as parties.

"A regrettable part of the history of people with developmental disabilities, particularly those with severe cognitive or intellectual disabilities, is that all too often the public and private systems designed to serve them have not served them well – even engaging in abusive and neglectful treatment of individuals. At the same time, families, guardians or representatives remain unaware of the situation, often relying on the abusers themselves to assure them that all is well."

I agree that often the public and private systems designed to serve people with developmental disabilities do not serve them well. This includes the system that supports federally-funded advocates who claim to represent people with developmental disabilities, regardless of whether the advocates know anything about them personally or have ever met them. Families are the first line of defense in protecting their family members against neglect, abuse, and poor quality services, regardless of where their disabled family members live. It takes a unique blend of arrogance and ignorance to dismiss the relatives and guardians of people with developmental disabilities as gullible fools. To presume that federally-funded attorneys are better equipped to determine what is best for our family members is dangerous and insulting.

"The glaring example that exposed the horrendous abuse and neglect of people with developmental disabilities in institutional settings nationwide was the 1972 expose of the Willowbrook institution in New York. However, such offenses have continued to occur today, and most often in large and inappropriate institutional settings far from the eyes of the community. In March in Texas, it was discovered that staff that had been hired to care for the residents had been forcing them into “fight club” style battles."

The abuse at Willowbrook took place 37 years ago, and as the commenter notes, there have been a lot of changes since then. One of the changes is that the federally-funded facilities, ICFs/MR, are more regulated and monitored than most group homes and other living arrangements in "community" settings. Better regulation and monitoring does not in itself guarantee better care. People with severe and profound mental retardation and severe behavior problems are vulnerable to abuse, neglect, and exploitation, not because of where they live, but because of their vulnerability. Preventing abuse, neglect, and exploitation takes vigilance by families, care providers, and public agencies as well as policies that allow a rapid response and resolution to these incidents.

No reasonable or compassionate person could condone the exploitation of people with disabilities for the amusement of their caretakers, as appears to have happened in Texas, any more than one should condone some of the horrific incidents in Michigan's community group homes, documented on the Adult Foster Care licensing website. But to advocate for eliminating any option that people with developmental disabilities rely on for their safety and security and for services appropriate to their needs, is a disservice to the people we claim to want to protect and advocate for.

"Enactment of legislation such as H.R. 1255 will jeopardize the well-being of thousands of individuals with disabilities by curtailing the ability to protect these individuals from systemic problems causing abuse and neglect, such as insufficient staff and lack of staff oversight in the Texas “fight club” example. This bill restricts the civil and human rights of individuals with developmental disabilities."

Insufficient staff and a lack of oversight is a significant problem for people with developmental disabilities whether they live in community settings or in facilities, but opposition to H.R. 1255 does nothing to alleviate the problem.

H.R.1255 is fully consistent with disability policy: the Developmental Disabilities Act of 2000 says that "Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options..."; the Supreme Court Olmstead decision states that there is "no federal requirement that community-based treatment be imposed on patients who do not desire it...". To say that it will jeopardize the well-being of thousands of people with disabilities is over-blown and deceptive hyperbole.

Friday, April 3, 2009

HR 1255 protects rights of residents of facilities to opt out of participation in class action lawsuits

Most people would be surprised to hear that a federally-funded organization, such as Protection and Advocacy, may file a class action lawsuit to close down or downsize a facility for people with developmental disabilities without notifying the residents or their families that a lawsuit has been filed or asking them whether they wish to participate. With bi-partisan support, U.S. Representative Barney Frank has reintroduced a bill, HR 1255, that allows residents of Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) and their legal representatives to opt out of class action lawsuits that could result in residents being moved against their wishes.

VOR (Voice of the Retarded) explains why this bill is desperately needed:
...Twenty-eight federally-funded class action lawsuits have been filed, resulting in the closure of at least 15 ICFs/MR in 9 states, involving thousands of individuals with developmental disabilities. Federally-funded attorney groups are most often motivated by a bias against the ICFs/MR option when filing these lawsuits. Since 1996, every federally-funded class action has been for the primary purpose of removing residents from their ICF/MR home ('community integration'); the condition of care at the targeted ICFs/MR was not at issue in any of these cases. An added offense is the fact that most of lawsuits filed against U.S. Department of Health and Human Services (HHS)-funded ICFs/MR are filed by HHS-funded Protection and Advocacy (P&A) agencies, making these cases, in effect, HHS v. HHS, an absurd use of scarce federal dollars.

Federal law (see e.g., the DD Act) embraces the policy that individuals and their families/guardians are the “primary decisionmakers” regarding the services and supports received. H.R. 1255 would help ensure that this promise is real for ICF/MR residents and their legal guardians who find themselves caught up in a lawsuit they do not support, being represented by attorneys who do not even consult them.

HR 1255 requires that the federally funded entity (usually P & A) notify an ICF/MR 90 days before filing a class action lawsuit against the facility. The facility then notifies residents and their legal representatives (usually close family members) and gives them the opportunity to elect not to have the lawsuit apply to them. P&A or other organizations may still file the lawsuit on behalf of those who wish to participate. The bill does not in any way interfere with the organization's ability to file lawsuits on behalf of individuals in the facilities or to otherwise protect their rights. Neither does it affect the right of other developmentally disabled citizens to appropriate community services.

Whether you have a family member living in an Intermediate Care Facility or not is beside the point. If federally funded lawyers ever decided to pursue a lawsuit on behalf of your family member, would you want to be notified? Would you want to have the right to decide whether or not these attorneys represent your family member or whether the lawsuit is needed? HR 1255 leaves these decisions to the people affected by the lawsuit and their families and guardians, not to federally-funded attorneys.

Many influential advocacy groups support the closure of all facilities and all other "disability-only" programs designed specifically to meet the needs of people with developmental disabilities. They have sent out alerts urging you to tell your Representatives to oppose this bill on the grounds that it will harm the efforts of parents and advocates to work for community services and supports needed to live in the community. I'm surprised that they provide links to the bill itself, because anyone who reads it will see that it has nothing to do with this. I guess they don't think you will bother to read it. I hope you will. And while you're at it urge your Representative to co-sponsor and support the bill.