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:
Sunday, May 16, 2010
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.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."
"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."
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.
Saturday, May 1, 2010
Tuesday, April 27, 2010
Michigan mental health policy in conflict with rights?
In Michigan, our local Community Mental Health (CMH) agencies provide services to people with developmental disabilities according to state and federal mandates and under contract to the Michigan Department of Community Health (MDCH). In providing services, the state and local CMHs must honor and protect the rights of the individuals they serve.
Promoting integration and inclusion in community life is part of federal and state mandates, but the degree to which this occurs is always tempered by the needs and preferences of individuals with disabilities. In their zeal to promote inclusion, state administrators and some advocacy groups are promoting policies that appear to conflict with individual rights to appropriate services by eliminating or limiting the services and settings available to people with developmental disabilities. To these administrators and advocates, any specialized program that provides services in group settings to people with developmental disabilities is segregated and discriminatory, whether or not the people served consider these programs necessary and part of their community.
Of most concern, is the intent of the MDCH to reduce and eventually eliminate so-called legacy programs: group homes, day programs, sheltered workshops, and other "disability-only" programs.
Vision for All Individuals with Developmental Disabilities
A draft policy that comes from The Standards Group, a part of the Michigan Association of Community Mental Health Boards (MACMHB), has been distributed and discussed at meetings with state officials and local CMHs. [The latest version of this comes from the DD PIT SUBGROUP dated 2/16/10 and was discussed at a recent conference of the MACMHB.] It is based more on an ideology and a philosophy of how things should be, rather than on official law or policy. It describes a vision for all people with DD, regardless of the severity of the person's disabilities, cognitive abilities, or medical or other issues affecting the individual.
According to the "vision", an acceptable activity for a person with DD to contribute to his or her community might be for the person to volunteer for Neighborhood Watch, but volunteering with a group of others with disabilities would not be an appropriate choice. Other unacceptable practices include living in a licensed group home, attending a day program, doing things in the community in groups rather than with a friend or two, and engaging in activities that the general population would not engage in on a regular basis. Rather than relying on already established legal mandates to improve the mental health system, this document is promoting an ideology and vision for the future that not all of us share.
Olmstead Misinterpreted
Another justification for eliminating specialized programs for people with developmental disabilities, is based on a misinterpretation of the Olmstead decision, a 1999 US Supreme Court decision that determined when care in an institution is unjustified and considered discrimination under the Americans with Disabilities Act. Olmstead is often used to justify closing all institutions and by extension community programs that are considered "institutional" in nature. In fact, the court opinion says the opposite:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).
In determining when a person should be moved to community placement from an institution, the court applied a three-part test, including that the transfer to a less restrictive setting is not opposed by the affected individual.
The Olmstead decision reinforced the individual's right to choose. Extending that to choices made regarding community services and settings, there is no reason to believe that Olmstead restricts choices for "disability-only" programs. In addition, there has been no genuine legal challenge to the authority of guardians or conservators of adults with developmental disabilities to make decisions on behalf of the person according to state law.
The state continues on a path toward eliminating specialized services for people with developmental disabilities and undermining their rights mandated by federal and state law. It does so with little scrutiny from either the public or our legislature.
More information on Olmstead .
More on opposition to the state vision from the Holland Sentinel.
Promoting integration and inclusion in community life is part of federal and state mandates, but the degree to which this occurs is always tempered by the needs and preferences of individuals with disabilities. In their zeal to promote inclusion, state administrators and some advocacy groups are promoting policies that appear to conflict with individual rights to appropriate services by eliminating or limiting the services and settings available to people with developmental disabilities. To these administrators and advocates, any specialized program that provides services in group settings to people with developmental disabilities is segregated and discriminatory, whether or not the people served consider these programs necessary and part of their community.
Of most concern, is the intent of the MDCH to reduce and eventually eliminate so-called legacy programs: group homes, day programs, sheltered workshops, and other "disability-only" programs.
Vision for All Individuals with Developmental Disabilities
A draft policy that comes from The Standards Group, a part of the Michigan Association of Community Mental Health Boards (MACMHB), has been distributed and discussed at meetings with state officials and local CMHs. [The latest version of this comes from the DD PIT SUBGROUP dated 2/16/10 and was discussed at a recent conference of the MACMHB.] It is based more on an ideology and a philosophy of how things should be, rather than on official law or policy. It describes a vision for all people with DD, regardless of the severity of the person's disabilities, cognitive abilities, or medical or other issues affecting the individual.
According to the "vision", an acceptable activity for a person with DD to contribute to his or her community might be for the person to volunteer for Neighborhood Watch, but volunteering with a group of others with disabilities would not be an appropriate choice. Other unacceptable practices include living in a licensed group home, attending a day program, doing things in the community in groups rather than with a friend or two, and engaging in activities that the general population would not engage in on a regular basis. Rather than relying on already established legal mandates to improve the mental health system, this document is promoting an ideology and vision for the future that not all of us share.
Olmstead Misinterpreted
Another justification for eliminating specialized programs for people with developmental disabilities, is based on a misinterpretation of the Olmstead decision, a 1999 US Supreme Court decision that determined when care in an institution is unjustified and considered discrimination under the Americans with Disabilities Act. Olmstead is often used to justify closing all institutions and by extension community programs that are considered "institutional" in nature. In fact, the court opinion says the opposite:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).
In determining when a person should be moved to community placement from an institution, the court applied a three-part test, including that the transfer to a less restrictive setting is not opposed by the affected individual.
The Olmstead decision reinforced the individual's right to choose. Extending that to choices made regarding community services and settings, there is no reason to believe that Olmstead restricts choices for "disability-only" programs. In addition, there has been no genuine legal challenge to the authority of guardians or conservators of adults with developmental disabilities to make decisions on behalf of the person according to state law.
The state continues on a path toward eliminating specialized services for people with developmental disabilities and undermining their rights mandated by federal and state law. It does so with little scrutiny from either the public or our legislature.
More information on Olmstead .
More on opposition to the state vision from the Holland Sentinel.
Monday, April 19, 2010
Dental care without Medicaid
Now that Michigan Medicaid no longer pays for preventive dental care for adults, we are not relying on dentists that accept Medicaid for our sons' routine dental care. The state's decision to drop dental care is cruel and short-sighted, but finding a dentist who was willing to try a different approach with our son Danny was an eye-opening experience.Danny has severe cerebral palsy and profound mental retardation. Most importantly, when it comes to working on his teeth, he has a severe aversion to touch, especially around his face, mouth, hands and arms. And, at 33, he is strong. His movements are mostly uncontrolled, and if he is agitated, he is capable of inadvertently smashing you in the face, if you are not careful.
In the past, the only sedation that Danny received before dental appointments was Valium. Danny would have a nice Valium-induced nap on his way to the dentist and be fully awake and agitated during the dental exam and cleaning. Then, on the way home, he would have another nap before the Valium wore off. This time, we sought out someone who would try IV sedation before working on his teeth. As it turned out, Danny got the most thorough dental exam and treatment ever with a minimum of trauma.
Danny is generally healthy, with no heart or respiratory problems and with a history of tolerating both IV sedation and general anesthesia well. An experienced nurse anesthetist worked with the dentist and dental hygienists to sedate Danny and keep him "under" enough so they could work on him. The nurse anesthetist monitored Danny the whole time for blood pressure, heart rate, and oxygen saturation. Danny also received fluids through the IV and oxygen at least part of the time. The nurse controlled and monitored the amount of medication throughout. When it was all over, Danny came out of it immediately and was just fine. While Danny was under sedation, they did a complete set of X-rays, photos of his teeth, and a thorough deep cleaning. Danny had inflamed gums, but no cavities or periodontal disease. He did not need any other dental work, but the dental team was prepared for anything. His teeth are so clean now, he could eat off them.
It was costly, but having talked to a friend who looked into work being done on her child at a local hospital under general anesthesia, the expense was a fraction of what that would have cost.
This could have been done a long time ago, but we were discouraged from even contemplating it by one dentist who insisted that IV sedation didn't usually work on "people like Danny". Another dentist said it was too expensive, unsafe, and Medicaid would probably never approve it. He also said it was unsafe to use sharp pointy objects to clean Danny's teeth and thought brushing his teeth with anti-bacterial mouth wash every day was sufficient. He would not recommend using anesthesia unless Danny had more obvious dental problems, like loose teeth and rotting gums (he used more technical language than this). Then I asked, if we could pay to have him anesthetized ourselves rather than trying to get approval from Medicaid, would they do it? Suddenly, the issue of safety dropped from consideration and he said he could probably arrange for the hospital to do it. We decided to look for a less ethically challenged dentist.
Danny is fortunate in many respects: he has a good set of choppers, he is relatively healthy despite all his problems, and he has family who are able to pay for good dental care. But I question the wisdom of the state allowing a whole segment of the population to go without access to preventive dental care, knowing the bad effects this has on general health that we will all pay for eventually, and knowing that some people like Danny who cannot communicate whether the pain and discomfort they are experiencing comes from a tooth ache or a belly ache, will suffer needlessly from the lack of care.
Look here for more information on trauma-free dental care.
Wednesday, April 14, 2010
Autism groups clash over National Council on Disability nominee
President Obama nominated eight people to serve on the National Council on Disability. All but one have been confirmed by the U.S. Senate. Ari Ne'eman, a 22-year old man with Asperger's Syndrome, has stirred up enough controversy that his appointment has been blocked by one or more Senators.
Ne'eman is the President of the Autistic Self Advocacy Network (ASAN) based in New Jersey. He is known for his views on neurodiversity, the idea that people with autism and other disabilities represent diversity in the broad spectrum of human behavior and thought. Attempts to treat and cure them, he believes, are not only unnecessary, but may lead to their eugenic elimination. He emphasizes working toward acceptance, integration, and enforcement of the rights of people with disabilities. Ne'eman and ASAN believe that funds spent on treatment and cures for autism should be diverted to the goals that ASAN promotes.
Other autism groups, such as Cure Autism Now and the Autism Action Coalition, object to Ne'eman's opposition to autism research. And who can blame them? After all, research into conditions such as juvenile diabetes and a variety of mental illnesses, has increased understanding of the causes for these conditions and has improved treatments by reducing symptoms and making them more tolerable. Research has not resulted in the elimination of people with these conditions as Ne'eman fears for people with autism, and it has certainly brought cures closer to reality. Ethical questions about what we do with the results of research are always present and research into autism is no different.
Ne'eman's views on neurodiversity and autism research and the fact that he is a self-proclaimed advocate for all people with autism should cause families of people with more severe forms of the condition to doubt his ability to adequately represent their family members. Everyone on the Board of Directors of ASAN, the organization that Ne'eman heads, has high functioning autism or Asperger's Syndrome along with multiple academic degrees and accomplishments hopelessly unattainable by people on the low-functioning end of the autism spectrum. And it turns out that ASAN's promotion of civil rights for people with disabilities is highly selective.
In New Jersey, legislation, which ASAN supports, has been proposed to close most of the developmental centers (Intermediate Care Facilities for the Mentally Retarded - ICF/MR) and move the residents to community placements. Advocates whose family members live in these facilities have responded to surveys asking if they want their relatives to move. 96% of those who responded (61% of those solicited responded) say they do not want their family members moved. Their family members mostly have severe and profound mental retardation and many of them are at the far end of the autism spectrum from ASAN's Board of Directors.
What ASAN and many other advocacy groups will tell you is that the U.S. Supreme Court Olmstead decision supports the closure of institutions everywhere and that New Jersey is merely doing what it has been required to do since 1999. What they will not tell you is that the Supreme Court in Olmstead specifically said that its intent was not to force people out of institutions:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).
Olmstead sets up criteria for evaluating a resident's need for community care which includes the condition that the individual (or his or her guardian), does not oppose the transfer from institutional care. Ne'eman, ASAN, and many other advocacy groups have been willing to ignore the rights of residents of ICFs/MR to promote their own ideology opposing the existence of these facilities. The bumper-sticker slogan, "Nothing about us, without us", apparently does not apply to the residents of these facilities, their families, or anyone else who needs the specialized services and placements that these groups oppose.
The idea that Ari Ne'eman is not autistic enough to serve on the National Council on Disability is beside the point. I'm sure he has valuable insights into the treatment of people with Asperger's Syndrome and high-functioning autism, but he does not represent all people with autism any more than I represent all parents whose children have cerebral palsy. The self advocacy movement has ironically allowed self advocates such as Ari Ne'eman to substitute their group judgment for that of disabled individuals, a practice just as bad as allowing doctors, government, insurance companys, or schools to make unilateral decisions about people's lives without ever needing to include them in the decision making or respect the differences in their needs and choices.
********************************************
For more information on this controversy, see:
Ne'eman is the President of the Autistic Self Advocacy Network (ASAN) based in New Jersey. He is known for his views on neurodiversity, the idea that people with autism and other disabilities represent diversity in the broad spectrum of human behavior and thought. Attempts to treat and cure them, he believes, are not only unnecessary, but may lead to their eugenic elimination. He emphasizes working toward acceptance, integration, and enforcement of the rights of people with disabilities. Ne'eman and ASAN believe that funds spent on treatment and cures for autism should be diverted to the goals that ASAN promotes.
Other autism groups, such as Cure Autism Now and the Autism Action Coalition, object to Ne'eman's opposition to autism research. And who can blame them? After all, research into conditions such as juvenile diabetes and a variety of mental illnesses, has increased understanding of the causes for these conditions and has improved treatments by reducing symptoms and making them more tolerable. Research has not resulted in the elimination of people with these conditions as Ne'eman fears for people with autism, and it has certainly brought cures closer to reality. Ethical questions about what we do with the results of research are always present and research into autism is no different.
Ne'eman's views on neurodiversity and autism research and the fact that he is a self-proclaimed advocate for all people with autism should cause families of people with more severe forms of the condition to doubt his ability to adequately represent their family members. Everyone on the Board of Directors of ASAN, the organization that Ne'eman heads, has high functioning autism or Asperger's Syndrome along with multiple academic degrees and accomplishments hopelessly unattainable by people on the low-functioning end of the autism spectrum. And it turns out that ASAN's promotion of civil rights for people with disabilities is highly selective.
In New Jersey, legislation, which ASAN supports, has been proposed to close most of the developmental centers (Intermediate Care Facilities for the Mentally Retarded - ICF/MR) and move the residents to community placements. Advocates whose family members live in these facilities have responded to surveys asking if they want their relatives to move. 96% of those who responded (61% of those solicited responded) say they do not want their family members moved. Their family members mostly have severe and profound mental retardation and many of them are at the far end of the autism spectrum from ASAN's Board of Directors.
What ASAN and many other advocacy groups will tell you is that the U.S. Supreme Court Olmstead decision supports the closure of institutions everywhere and that New Jersey is merely doing what it has been required to do since 1999. What they will not tell you is that the Supreme Court in Olmstead specifically said that its intent was not to force people out of institutions:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).
Olmstead sets up criteria for evaluating a resident's need for community care which includes the condition that the individual (or his or her guardian), does not oppose the transfer from institutional care. Ne'eman, ASAN, and many other advocacy groups have been willing to ignore the rights of residents of ICFs/MR to promote their own ideology opposing the existence of these facilities. The bumper-sticker slogan, "Nothing about us, without us", apparently does not apply to the residents of these facilities, their families, or anyone else who needs the specialized services and placements that these groups oppose.
The idea that Ari Ne'eman is not autistic enough to serve on the National Council on Disability is beside the point. I'm sure he has valuable insights into the treatment of people with Asperger's Syndrome and high-functioning autism, but he does not represent all people with autism any more than I represent all parents whose children have cerebral palsy. The self advocacy movement has ironically allowed self advocates such as Ari Ne'eman to substitute their group judgment for that of disabled individuals, a practice just as bad as allowing doctors, government, insurance companys, or schools to make unilateral decisions about people's lives without ever needing to include them in the decision making or respect the differences in their needs and choices.
********************************************
For more information on this controversy, see:
- Erasing Autism? from Newsweek, May 16, 2009
- Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, from the NY Times, March 27, 2010
- See numerous interviews with Ari Ne'eman on YouTube.com
- Life on the other end of the autism spectrum: Planet Autism from Salon.com, September 27, 2003
- Letter to President Obama from groups opposing Ne'eman's appointment
- VOR Olmstead Resources
- New Jersey Choice press conference video of Robin Sims, parent of NJ ICF/MR resident and President of VOR: introduction and extended remarks
Saturday, April 3, 2010
Ann Arbor Easter Bunny
The painted boulder on the University of Michigan campus is transformed into a ghastly Easter Bunny.
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