Wednesday, May 26, 2010

Goal for all special ed students: college and a career

According to an article on the Web site Disability Scoop from April 22, 2010, U.S. Secretary of Education Arne Duncan has insanely high goals for all special education students regardless of ability level: they should all leave school ready for college and a career.

In a speech to the annual convention of the Council for Exceptional Children in Nashville, he called on special educators "to take personal responsibility for the success of their students after graduation". The problem, as he sees it, is a lack of high expectations for these students. Those pesky disabilities that prevent my sweet baby boy (OK, he's twenty-five, but I'm his mother) from walking, talking, feeding himself, and 500 other things that most people learn to do by the time they are three, are definitely not the problem. The magic needed to transform high expectations into unattainable goals will be the upcoming reauthorization and amendment of the No Child Left Behind Act (NCLB).

There is another possibility, though. Maybe Arne Duncan is just confused about the meaning of the word "all"? After doing a little internet research on the NCLB goal of 100% proficiency for all students in reading and math by the year 2014, I discovered that schools only have to report test scores for 95% of their students. So five out of a hundred students, mine included, are outside the realm of "all".

It sounds dishonest to me to say "all" when you mean 95% of "all". But how
could honesty, truth, and accuracy possibly have anything to do with education?

Diane Ravitch on school reform

In recent years, school reform has focused on testing basic skills in reading and math and linking accountability to student test scores with the assumption that this improves education for all students. Reforms have also encouraged school choice by allowing charter schools to compete with regular public schools, while relieving charter schools of having to abide by the same regulations and mandates for serving all students that regular public schools must follow.

Diane Ravitch, in her new book "The Death and Life of the Great American School System: How Testing and Choice Are Undermining Education" (New York: Basic Books, 2010) warns of the perils of continuing on the path that was set by No Child Left Behind (NCLB), an education reform law signed by George W. Bush in 2002. The law is due to be reauthorized and amended by Congress this year.

Dianne Ravitch is a former assistant secretary of education under George (the 1st) H. W. Bush, a
former cheerleader of charter schools, and former supporter of George (the 2nd) W. Bush's NCLB. She is a historian who has written extensively about school reform movements and has changed her mind about the effects of school reform efforts because the facts don't bear out the claims that they are working.

Ravitch is especially concerned about the punitive nature of NCLB that uses questionable testing of reading and math proficiency to punish or reward teachers, principals, and schools based on the test scores of students. By law, in 2014, all students (actually only 95% of student's test scores will be counted) must be proficient in reading and math or the schools will face dire consequences. The emphasis is on closing public schools that don't perform and encouraging charter schools to replace them or have them run by entities other than local school districts. Closing public schools may sometimes be necessary, but overall, public schools do better than charter schools at educating students when factors such as the difference in how many disadvantaged and disabled children are being served are taken into account. Data-driven reforms do not reflect changes in curriculum that have reduced the time spent on teaching students history, literature, science, and the arts and increased time spent on bolstering skills related to filling in multiple choice questions on standardized tests.

The problem with No Child Left Behind, says Diane Ravitch, is that it "...was bereft of any educational ideas. It was a technocratic approach to school reform that measured 'success' only in relation to standardized test scores in two skill-based subjects [reading and math], with the expectation that this limited training would strengthen our nation's economic competitiveness with other nations. This was misguided, since the nations with the most successful school systems do not impose such a narrow focus on their schools."

A major flaw of NCLB is that states were allowed to come up with their own tests on which their success would be judged. Not surprisingly, the states cheated. If they needed to show more improvement to escape penalties, they lowered the score needed to pass the proficiency tests. If there were too many high school dropouts in New York City, for instance, the city began calling students who left school without a diploma "discharges" and they were not counted in the drop-out rate. In some instances, schools that showed astounding progress in terms of higher test scores, showed little improvement when measured against results on national standardized tests such as the National Assessment of Educational Progress or the SATs.

Charter schools were originally proposed in the 1980's to serve students who were consistently failing in our public schools to help them succeed. These schools were seen as the laboratory for innovation to foster new ideas to help public schools, but they have become the chief competitor with public schools. Although their quality can range from excellent to dismal, they generally are allowed to select students who raise their test scores and to dismiss or discourage students from enrolling who might make them look bad, including students with disabilities.

Promoting charter schools and other unproven reforms is a pet project of well-funded foundations that allow
extremely wealthy people to shelter their money from taxes and then use it to promote their own version of school reform. Their version is often not supported by the public and there is little scrutiny of whether their ideas actually work for the benefit of schools and students, but the amount of money flowing from the foundations overwhelms that coming from other sources.

Ravitch does not believe that the emphasis on managing schools as if they were businesses is helpful: "American education has a long history of infatuation with fads and ill-considered ideas. the current obsession with making our schools work like a business may be the worst of them, for it threatens to destroy public education. Who will stand up to the tycoons and politicians and tell them so?"

The author includes her well-considered opinion of what does work for improving schools, but there are no panaceas and nothing that does not take time and perseverance. Whether you agree with her or not, the ideas in Ravitch's book need to be taken into account as the issue of school reform is once again getting national attention.

Here is a link to a C-Span interview with Diane Ravitch about her book.

Tuesday, May 18, 2010

The ARC Michigan and UCP oppose Choice Resolution

Michael Vizena, the Executive Director of the Michigan Association of Community Mental Health Boards, contacted a number of advocacy groups before the May 17, 2010 meeting of the Executive Board to ask their opinion on the Choice Resolution. The Resolution affirms the right of community mental health consumers to choose services and settings from a full array of options based on their individual needs and preferences.

He received three responses before the meeting: Michigan Protection and Advocacy Services said in a brief e-mail, "This is an excellent policy statement." The ARC Michigan and United Cerebral Palsy of Michigan were adamantly opposed to the resolution.

Dohn Hoyle, Executive Director of the ARC Michigan, says "The statewide advocacy community, on behalf of persons with developmental disabilities, is united in seeking improved integrated models for supporting our fellow citizens with disabilities. This does not include old out-dated models and methodologies which congregate and segregate them."

He goes on to say, "At a time when strong mutual advocacy is called for, it is disappointing to see the Board Association staking out an apologist position, sanctioning almost anything a Board or provider would suggest, if they could find any people to agree with it. Such a document would be very divisive."

The Executive Director of UCP, Linda Potter, says,"I'm surprised the Boards Association would think of adopting such a statement, which is completely opposite to the spirit and intent of the Application for Renewal and Recommitment (ARR). The ARR gives us a vision of where we want to be. Why then adopt a discussion of 'choice' that acknowledges services that would be a turn backwards?"

Considering the stance of Michigan Protection and Advocacy on the choice issue and the many families that wrote and called in support of the Choice Resolution, Dohn Hoyle seems to have miscalculated the degree of unity in the advocacy community on this issue. The advocacy community has never been monolithic, and some of the fanatical, unbending positions that the ARC Michigan has taken over the years has done little to prevent unnecessary polarization. Neither Dohn Hoyle nor Linda Potter seem to have much faith that people with developmental disabilities and their families really do know better, even better than advocacy organizations, what they need and want.

MACMHB and DD policy

The Executive Board of the Michigan Association of Community Mental Health Boards met Monday night, May 17, 2010, at the Hyatt Regency hotel in Dearborn, Michigan. It was the first night of the organization's Spring conference.

The reason it is important to know what the MACMHB is up to is because this is one of the venues where state mental health policy gets discussed, hashed out, and sometimes handed over or taken up by the Department of Community Mental Health (MDCH) to be recirculated through all the CMH agencies in the state.

I was most interested in the Board's reaction to the Choice Resolution , a policy/value statement that shores up the right of developmentally disabled consumers to services and placements suitable to their needs and preferences. It is intended to counteract an alarming push by some advocates and the MDCH to limit and eventually eliminate specialized services for people with DD that are provided in group settings, which the advocates and MDCH consider to be segregated and discriminatory. They support choice, of course, but they want to limit choice to the services and settings they want our DD family members to have.

Three public comments (mine included), all supporting the Choice Resolution, got the ball rolling, so to speak. After a few routine agenda items were taken care of, Michael Head, Deputy Director of the Mental Health and Substance Abuse Administration for the MDCH, gave his report to the Board along with his comments on the Choice Resolution. During his report, he mentioned that he does not like to be demonized. So I will say upfront, that he did not have horns and if he had a tail, he hid it well.

Michael Head obviously did not like the criticism of the MDCH. The Board had received many e-mails from families objecting to the "Vision for All People with Developmental Disabilities", a draft policy paper coming out of The Standards Group, a strange little quasi-subcommittee of the MACMHB that I will try to explain at another time. In an odd attempt to both defend the Vision statement and disavow it, Michael. Head said that it was important to have a dialectic on these issues, but he didn't pay much attention to it and had never read it!

He feels he has been misrepresented and that his primary concern is for people with high vulnerabilities in the system whom he has decided do not do as well in larger facilities. He does not like the wording of the Choice Resolution and says it gives "a wink and a nod" to isolation and segregation. He also said the genesis of the wording for the statement came form MARO , a Michigan training and employment association that he said is trying to save the jobs of its members. Fortunately, parents from Western Michigan who were involved in the original wording of the statement on Choice, were sitting behind me at the meeting. They said the wording came from parents and had nothing to do with MARO.

In a display of confusion and general wimpishness, the Executive Board decided to table the Choice Resolution for another time. Michael Brashears from Ottawa County CMH and Jan Plas from Livingston County CMH, both supporters of the Choice Resolution, voted against tabling it and 19 others voted for tabling the resolution.

Later, in a report from The Standards Group, Laura Vredeveld said they had lots of calls from parents and advocates about the DD Vision statement and that no consensus had been reached on the document. Some advocates felt the document should be even more restrictive of services available. She said the most polarizing aspects of the Vision statement will be removed including value judgments on specific services and settings.

There was both passion and bluster in the discussion of the Choice Resolution and very little was resolved. There is no doubt that e-mails and phone calls from families voicing their opinion on choice and the vision statement had an impact on the Board members and the MDCH.

If you don't say anything, you don't have a say.

Monday, May 17, 2010

Meeting of MACMHB Executive Board in Dearborn tonight

The Executive Board of the Michigan Association of Community Mental Health Boards will meet tonight, May 17th, 2010, at the Dearborn Hyatt Regency. The address is 600 Town Center Drive, Dearborn, MI 48126. The meeting will be in the Marquis Ballroom on the second level. The Choice Resolution is on the agenda.

The meeting begins at 6 p.m. and there will be a public comment period at the beginning of the meeting.

Sunday, May 16, 2010

The "Choice Resolution": Policy on DD services and placement options

On Monday evening, May 17th, 2010, the Executive Board of the Michigan Association of Community Mental Health Boards (MACMHB) will vote on the "Choice Resolution", a policy statement that is intended to preserve choice for a wide array of programs and placements for all Community Mental Health consumers. A full array of services and placement options is necessary to meet the diverse needs of this population.

The proposed resolution is in response to the stated goal of administrators in the Michigan Department of Community Health (MDCH) to limit and eventually eliminate so-called legacy programs for people with developmental disabilities. Programs targeted include licensed group homes, sheltered workshops, day programs, and other specialized programs that serve people with DD in group settings.

A policy paper called “Vision for All Individuals with Developmental Disabilities”, although it remains in draft form, has been distributed and discussed at meetings between state officials and local CMHs as if it were already or were about to become the official policy of the MDCH. There have never been public hearings on the policy, even though it calls for radical changes in what are considered acceptable practices and options for people with developmental disabilities. The policy paper is based on an ideology and philosophy that is for the most part unsupported by existing law and its adoption would lead to the erosion of rights and choice for people with developmental disabilities.

Most disturbing is a statement from Michael Head, Deputy Director of the Mental Health and Substance Abuse Administration for the MDCH, of the Department's willingness to exploit the state's economic crisis to reach its goals: "The opportunity to advance change and delete poor practices and service options is enhanced with the specter of large budget reductions...".

If you support the Choice Resolution (see below), e-mail Georjean Knapp, Executive Board Clerk, at and ask that your message be forwarded to the Executive Board President Mary Anderson (Newaygo County CMH) and other members of the Executive Board.

Also, send copies to two members of the Exec. Board who are supportive of the resolution:
  • Jan M. Plas, Livingston County CMH - and
  • Michael Brashears, Ottawa County CMH -
Jan Plas is part of the affiliation that includes Washtenaw County.

For Wayne County: Cindy Dingel, Chair of the Detroit Wayne County Community Mental Health Board and Veda Sharp, Executive Director of the Detroit Wayne County Mental Health Agency will represent Wayne County at this meeting. Please contact Cindy, , and Veda today, , in support of the “Choice Resolution” .

A list of members of the Executive Committee can be found here . If you see someone on the list who is from your area and you can find their email, send them a message also.

If you want to call, the phone number for the MACMHB (517)374-6848.

Make your message personal (say why you have an interest in the issue) and as brief as possible but be sure that you get your point across.

The Choice Resolution

The Department of Community Health, CMHSPs and PIHPs shall honor consumer choice to the fullest extent possible when providing services and support programs for individuals with mental illness, developmental disabilities, or substance abuse issues. Consumer choices shall include skill-building assistance, rehabilitative and habilitative services, supported and integrated employment services program settings, including day program settings, residential settings, and other work preparatory services provided in the community or by accredited community-based rehabilitation organizations. The department of community Health, CMHSPs and PIHPs shall not arbitrarily eliminate or restrict any choices from the array of services and program settings available to individuals.

The Department of community Health, CMHSPs and PIHPs shall take all necessary steps to ensure that individuals with mental illness, developmental disabilities, or substance abuse issues be placed, in the quickest amount of time possible, in the least restrictive setting that is appropriate to the needs of the individual and is the individual’s choice.

Links to more information on the issue at DD Advocates of Wayne County:

Rita Bird Testimony concerning choice

MDCH Vision statement

Startling lead levels for students in Detroit schools

Several articles in Sunday's Detroit Free Press, May 16, 2010, cover startling new findings about the level of lead in Detroit public school students and the correlation of lead levels with lower IQ's and test scores.

Lead contamination is found in older homes with lead-based paint in paint chips, dust, and soil. It is also found in lead pipes or faucets, some toys and pottery glazes, and dollar-store jewelry. Although there is no safe level of lead, a blood level of 5-9 micrograms per deciliter and above is considered to be lead poisoning. Its affects are most harmful in children under 6 years old. Lead poisoning shows up as learning problems, hyperactivity, and problems with reading, memory, and paying attention. There are ways to make the problem better with a stimulating environment and a healthy diet.

In a study by the Detroit Public Schools and the city health department, 58% of about 39,000 children tested had a history of lead poisoning. 60% of students who performed below grade level on 2008 standardized tests had elevated lead levels. 30 Detroit elementary schools had at least 35% of the student population with 5 micrograms of lead or more. The figure is likely far higher because half the children had no record of lead tests. Kids in special education had higher lead levels.

Links to the Detroit Free Press articles:

Thursday, May 13, 2010

Disability cures and treatments: hype and hope

By the time Danny was five years old, it was pretty clear to my husband and I that we were going to be in the disabilities game for a long time. In the early years, I read and heard about many purported cures and treatments that promised to make our boy "snap out of it" and get on with his life as a normal person. There were always caveats, however. If the treatments and therapies did not have the desired effect, it was probably because the parents weren't doing it right or they weren't sufficiently committed to the idea to make it work. Because Danny's care was so exhausting, it was a relief to me when the latest fad proved to be without merit before I had a chance or inclination to try it out. After a while, the fads that I might have fallen for earlier began to seem absolutely bonkers.

At a United Cerebral Palsy conference, I sat through a presentation about how you can improve your child's emotional health and behavior by painting his room the correct color to match his condition. "The spinal cord is a rainbow!" said the man who was presumably paid to present this drivel. As I recall, he had charts and diagrams showing how the color of the room somehow worked its way through the eyes and brain to the spinal cord with miraculous effect. I later referred to this method as Cure by Interior Decoration.

Then there was patterning that promised that after a mere 8 or 9 hours per day of taking Danny through rigorous movement exercises, new pathways would be forged in his damaged brain, allowing him to progress. Swimming with dolphins, said Parade Magazine, improved the speech of Down Syndrome children by 20% (20% of what, it did not say). Behavior modification could produce improvement of inappropriate or sometimes just annoying behaviors through positive and negative reinforcement to encourage the child to behave. In case that didn't work, aversive behavior interventions were available to threaten, intimidate, and physically force the child to do what you wanted.

In an odd twist, advocates of Neurodiversity oppose spending money on research to find cures for autism and related disabilities. They believe that people with these conditions represent diversity on the broad spectrum of human behavior and thought. Since there is nothing wrong with them, they don't need to be cured. They especially oppose research on genetic causes of autism that might lead to their eugenic elimination. I wonder how many people with these "differences" take medication to reduce symptoms such as anxiety, depression, and obsessive compulsive disorder? Are they being true to their beliefs when they refuse to accept "differences" that can be conveniently treated with medication? Is it cheating for a person with seizures to take anti-seizure medication or a diabetic to take insulin? The Neurodiversity idea raises more questions that it answers.

Once in a while a really kooky idea comes along that actually works. The Ketogenic Diet, for instance, is a high-fat, low-carbohydrate diet that reduces or eliminates seizures in some kids. Recommending the diet doesn't take a lot of high-pressure salesmanship on the part of doctors who are willing to monitor kids on this diet, because the results speak for themselves. That this is a difficult diet to maintain and hard on families is acknowledged upfront and the parents ultimately decide whether it is worth a try to stop intractable seizures in their children.

Recently, the New York Times published an article, Promise Seen in Drug for Retardation Syndrome, 4/29/2010, that describes hope for a medical treatment for some symptoms of Fragile X Syndrome. Fragile X is "the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. ... FXS is the most common known cause of autism or 'autistic-like' behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development". (This is according to the National Fragile X Foundation Web site.)

Research on Fragile X is done by real scientists (rather than interior decorators and dolphin trainers) who work to improve understanding of the genetic causes of the syndrome in hopes of finding a way to lessen its symptoms and perhaps point the way to treating other related conditions. Here are the fascinating details from the article on how Fragile X Syndrome works, in case you're interested:

"Fragile X is caused by a genetic stutter in which a portion of the gene gets repeated like a scratched album. With each subsequent generation, the number of repeats tends to rise. So if a mother has 10 repeats, her child might have 11 or 12. For reasons that are not well understood, however, this process of repeat amplification can suddenly go haywire. So mothers who have 55 or more repeats tend to have children with hundreds.

"In anyone with 200 or more repeats, the body shuts off the gene. Since genes are used to make proteins, this genetic silencing means the encoded protein is never made. The absence of this protein in cells causes the wide-ranging effects of fragile X syndrome. Those with 55 to 200 repeats are considered carriers, and recent research shows they can have severe neurological declines late in life that mimic Alzheimer’s and Parkinson’s."

Getting back to the new discovery that the article features, scientists have found that fragile X patients have an "overload of unchecked synaptic noise" (the synapses are the junctions between brain neurons). The new drug produced by the drug company Novartis appears to reduce the noise by replacing at least one missing protein so that "memory formation and high-level thinking can take place allowing children to develop normally."

Wow! The president of the Fraxa Research Foundation that finances fragile X research says "this may be the key to solving the mystery of autism and other developmental disorders." A spokesperson from Autism Speaks says pretty much the same thing. A former researcher at another big drug company Merck says this is "the most promising therapeutic discovery ever for a gene-based behavioral disease." The best news is that if you are a mouse, a fish, or a fruit fly that has been genetically engineered to have fragile X, you will be rendered practically normal if you take a compound including the missing fragile X protein.

Is this too good to be true? Probably. If you read the article carefully you find out that the trial for the drug involved only a few dozen patients with fragile X and only some of those benefited. The study was too brief to measure effects on basic intelligence. Improvement was seen in an "undisclosed biological trait". A total of two parents were euphoric with the results of the trial. The Novartis results were not published or peer reviewed (this means they were not refereed by other experts in the field, including competitors, for publication). For commercial reasons, many details were not divulged. The drug is years from being available if it even survives more rigorous trials and further study.

The article includes many fascinating details of fragile X syndrome and how research has progressed over the years, but the drug companies and the groups that raise money for fragile X and autism research will probably benefit the most from the publicity. Parents are prone to euphoria when they hear of a solution to a difficult and sometimes desperate situation with their child, and who can blame them. Hope is never a bad thing, but exploitation of that hope for publicity and fundraising makes me queasy.

Buyer beware! You might want to investigate Web sites like Quackwatch before investing money, time, and energy in alluring cures and treatments that aren't all they pretend to be.