Comments to the U.S. Dept. of Education on Regulatory Reform: "Inclusion"

The following are my comments to the U.S. Department of Education request for comments on "Enforcing the Regulatory Reform Agenda E.O. 13777"

by Jill Barker, Ann Arbor, Michigan

With all the emphasis on children with disabilities being served in regular classrooms, usually referred to as “Inclusion”, there needs to be clarification that IDEA and its regulations assure all children with disabilities appropriate educational services and placements.

I have two adult sons, 32 and 41 years old, who have profound intellectual and developmental disabilities. They both attended High Point School in Ann Arbor, a school that specialized in students with the most severe and complex disabilities in Washtenaw County, Michigan. Regular classrooms were in no way appropriate for them, even with special supports and accommodations. At High Point, they experienced the best care and educational opportunities available in a loving and supportive community. 

I have no regrets, but I know the pressure has been on school systems for many years to eliminate schools like High Point in the name of an erroneous and misplaced desire for all students to be “included”.

The following is an article I wrote for The DD News Blog in celebration of my son Danny’s 40th birthday. It is just as relevant today as it was a year ago.

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Excerpts from...

Surviving the Inclusion Delusion: Danny at 40

By Jill Barker 

The DD News Blog

Monday, October 3, 2016

My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant. We do not love him less because he lives and survives with profound developmental disabilities.

I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, anda supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers. Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.

... the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions: Is it right to make judgments about “ all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs? Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child?

… In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference. Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings.

The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities....

Surviving the Inclusion Delusion: Danny at 40

I have made some changes and corrections to this blog post since it was posted on October 3rd, 2016. This version may look slightly different from the original, but the substance of the post has not changed.---JRB

Update: This post was published in the Nonprofit Quarterly on 10/26/16

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My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant.  We do not love him less because he lives and survives with profound developmental disabilities. 

I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.  

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, and a supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.  

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers.  Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.

The Inclusion Delusion began with a false and unprovable assertion based on wishful thinking and a willful misinterpretation of federal law. In 1990, there were many disabled children who were unjustly and illegally prevented from participating in classrooms with their non-disabled peers and there still are.  Many of their parents understandably leapt at the idea that by proclaiming a belief in Inclusion, their children’s needs might finally be recognized and fulfilled. 

But the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions:  Is it right to make judgments about “all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs?  Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child? 

In the early 1990’s, the indoctrination for inclusion in schools was intense, an obvious sign that the project was well-funded and a great opportunity for organizations and local agencies to tap into a new funding stream. I attended a meeting sponsored by our local ARC (formerly the Association for Retarded Citizens) featuring a speaker from another state. She gave a rousing speech citing success stories of even the most profoundly disabled children blossoming in the presence of their non-disabled peers. Non-disabled children, she said, were learning acceptance, tolerance, and the value of people with disabilities to society and their fellow citizens. 

As I listened, I pondered how Danny would be accommodated in a regular middle school classroom? How would they deal with his bouts of vomiting after meals, the necessity for frequent diaper changes, and his need for floor space for his favorite activity - rolling over? Would other students and staff tolerate his occasional blood-curdling screams when things weren't going well for him? Was it wise to remove him from an environment that had every accommodation that he needed and place him where virtually nothing was geared toward his needs? Could anything prevent him from becoming the chief source of disruption for almost every activity that normally occurs in a typical classroom?

I started to pay more attention to the speaker when she offered up some good advice: 

“Give people with disabilities what they need and want! If you want to know what they need and want, ASK THEM! “

Now, that made sense to me and I became more optimistic that I would get something out of the evening beyond a welcome break from caregiving. My optimism was soon crushed, however. The speaker followed her initial advice with a list, her list, of all the things people with disabilities are supposed to need and want. She did not ask if the audience agreed with her.  “They all want to be treated like everybody else,” she said, apparently oblivious to the fact that Danny would die if he were “treated like everybody else”. She went on: “…they want to live independently and make their own decisions; they want to go to regular schools and work at regular jobs; they want to be included in their communities in every aspect of life,”  and so on. Some of the items on her list made sense to me, but most did not considering the complexity of Danny’s severe disabilities.

On another occasion, I saw a film of children's responses to having disabled students in their classrooms. One boy said he had learned that, "Disabled people can do everything that everyone else can do. They just have to try harder." I can understand a child coming to such a simplistic view of disability, but for the adults to include it in a film promoting Inclusion raises questions about their judgment. Poor Danny, I thought. With that kind of "learning", what would ignorance look like?

Danny continued at High Point school for another 13 years. As the Inclusion movement took hold, many children were moved out to local schools, some with the approval and support of their parents and some without. There were threats that the school would close and it almost did. Finally, a charter school and other programs sponsored by the County school district moved in to the empty classrooms and eventually filled the space left by special ed students who had moved out. The integration of High Point and the charter school proceeded at a relaxed pace and was not forced where it was not appropriate for the students involved. At the same time the integrity and the usefulness of the High Point program continued to function to the benefit of the most severely disabled children in Washtenaw County. 

Was this an example of the success of Inclusive education? I don’t believe so and it certainly did not meet the criteria set by advocacy organizations that demanded that disabled children be seen to hobnob with their non-disabled peers to prove to the world they were just like everybody else. The purpose of High Point was never to isolate and segregate its students from the broader community, but to give them an environment and specialized care that was not likely to be achieved anywhere else. 

The Inclusion Movement in education was an ideological undertaking, more enshrined in the imagination of zealots than in the laws and policies governing the education of actual children with disabilities. The 1975 Education for All Handicapped Children Act was in full swing by the late 1970’s and early 1980's, with the majority of children in special education, those with learning disabilities and speech and language problems, attending their neighborhood schools and spending most of their time with children who were not disabled. It was true that schools still ignored the needs of children who caused them inconvenience or were difficult to accommodate or educate, but parents were getting the idea that with a lot of hard work and belief in themselves and what they knew about their children, it was possible to make headway with the new protections and rights afforded their children. 

The Inclusion Delusion, that all children could be accommodated in regular classrooms, signaled a dramatic shift in thinking. Rather than determining the education that each child received based on his or her unique needs, it made the assumption that every child could succeed in placement in regular classrooms. If that did not work, the parents, the schools, and the professionals must have done something wrong. Or, as one parent said in another short documentary promoting Inclusion, “Even if it doesn’t work, you should do it anyway. It’s the right thing to do”.

For years, the proponents of Inclusion in schools have pitted parents against parents, demonized teachers and staff who work with children in specialized classrooms and special schools and set the stage for years to come for disability movements based on over broad generalizations about people with disabilities. 

In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference.  Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings. 

The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities.

Thanks to Danny (and Ian who came along eight years later), my blog has been an attempt to set the record straight, give a voice to people who are rarely heard, and attempt to restore some balance in the stories that are told about people with disabilities. This is an unbelievably  frustrating time for families who see their judgement questioned at every turn as they attempt to salvage necessary services for their loved ones and hope for a truly inclusive future that acknowledges differences in abilities and needs and honors the choices that families and their loved-ones must make. 

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For information on Michigan special education and other kids issues, check out Bridges4Kids.

Maine: Drastic reductions proposed in services to severely DD adults in the name of Independent Living

In an article in the Portland (Maine) Press Herald, “Out of the spotlight, DHHS cuts away at humane care”, 1/6/16, Bill Nemitz covers a story unfolding in Maine that could spell disaster for adults with severe developmental disabilities. The state justifies cuts to services by claiming that it wants to realign services with what people actually need. This is not a new concept, but Maine officials also want to “guard against attitudes that would inappropriately limit what an individual can do,” says Health and Human Services Commissioner Mary Mayhew.

Those bureaucrats in Maine may have a cruel streak or maybe they are just delusional, but at least they have a sense of irony, as Nemitz points out. They are calling their new assessment policy, the “Supporting Individual Success rate-setting initiative”.
 
For people unfamiliar with disabled adults with profound disabilities, especially those with dangerous behaviors that put them at extreme risk of harm, it may be hard to believe that their needs justify so many service hours. But consider the testimony of the executive director of a provider of residential services. He says that 76 of 91 people that his agency serves will have their service hours cut and gave examples of the people affected:

• Peter, 91, whose diagnosis includes profound mental retardation and a host of other disorders, will see his staffing hours drop from 200 per week (at times he needs two staffers) to 69.
• Mariya, 30, has autism with severe mental retardation and takes 30 medications per day. Her hours will decrease from 232 to 99.
• Thomas, 54, has autism with severe mental retardation and several other disorders along with a recent diagnosis of melanoma. His hours will drop from 240 to 102.
• Jono, 28, has autism, mental retardation, cerebral palsy, mood disorder and severely intrusive behaviors. He gets 210 hours now; he’ll soon get 102.
• Dan, 24, has mental retardation, quadriplegic cerebral palsy, seizure disorder and is unable to talk or feed himself. His hours will drop from 141 to 99.

Mary Mayhew from DHHS says in response to criticism of the proposed initiative that the state will create a new system that is “free from the perverse incentives that may exist from the providers’ perspective.”

If the proposed scheme to allow people to live independently without the services they need doesn’t work for these severely disabled adults, they can appeal to the state for extra help. The qualifications for staffing, however, will be so high that when extra help is approved, providers fear they will not be able to meet the standards proposed by the state. As a father of two affected adults described it, "...It's designed for failure." 

Read more of the story for many more personal stories from families.

Stigmatizing people with serious mental illness and severe developmental disabilities

Recently, I came across an article on the Huffington Post Website by Liza Long, the mother of a son with bipolar disorder.  The article, “5 Reasons I Wish We Would Stop Talking About 'Recovery' for Serious Mental Illness And the Word I Wish We Would Use Instead” (1/30/15), was written after a friend’s 22-year-old son, who had paranoid schizophrenia, committed suicide. The young man’s death was all the more poignant because the mother and son had been featured in a series of articles in USA Today on “The Cost of Not Caring”. The son was finally receiving the treatment he needed and seemed to be on the verge of successfully managing his illness.

The author reflects on the way we talk about mental illness as possibly contributing to the stigma experienced by people with its most severe manifestations: 



“There's a popular quote floating around mental health advocacy circles: ‘Mental illness is not a choice. But recovery is.’ I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word ‘recovery.’ When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac….I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.” 



“...The concept of recovery increases stigma, both within and outside the mental health community. ...if people recover, why aren't you recovering? …Recovery seems dependent on a prescribed set of treatments that may not work for everyone.”



“…Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.” 



As the mother of two adult sons with profound developmental and intellectual disabilities, I see striking parallels in how disability rights advocates, intentionally or not, marginalize and stigmatize people with the most severe developmental disabilities. 



Disability advocates talk about high expectations rather than recovery. Low expectations, they say, are barriers to achieving independence, productivity, and full integration into the community that all people with disabilities can be expected to achieve. These admirable goals may be achievable by some people with even the most severe disabilities, but certainly not by all. What about 38-year-old Danny, who functions at the level of a 6 - 12 month old infant and needs total help and assistance to accomplish anything. Independence and productivity are pipe dreams for Danny, but maybe we can blame that on his mother who hasn’t expected enough of him.



And why pay for all the things that Danny does need, such as competent and compassionate care in a setting that offers him comfort, pleasure, and a meaningful life, when these things will never change him into a person who can meet expectations set by others? What does "full integration" mean for a person who can't communicate in any specific way or take care of himself? For people with disabilities who really can overcome barriers and achieve ordinary and sometimes great things, doesn't their association with a person like Danny make them look bad? What could be more stigmatizing for Danny than being set apart as a person who is using up Medicaid funds that should go to people who are more "deserving" and who "can really amount to something"? Even his existence may be an embarrassment for those attempting to show that people with disabilities are worthy of public support.



The Home and Community-Based settings rule from CMS, the federal agency that regulates Medicare and Medicaid, threatens settings most likely to serve people with the most severe disabilities such as center-based work programs, congregate residential programs, day and pre-vocational programs, and other congregate settings that serve more than a few people with disabilities in one place. 



State and federal Vocational Rehabilitation (VR) systems are being overhauled by the 2014 federal Work Innovations and Opportunities Act (WIOA). According to proposed regulations for WIOA, “The foundation of the VR program is the principle that individuals with disabilities, including those with the most significant disabilities, are capable of achieving high quality, competitive integrated employment when provided the necessary skills and supports.” These are high expectations, indeed, but simply making that assertion does not change the capabilities of individuals with disabilities. What are we to think of people with disabilities who will not be able to find work under the condition that it be both competitive and integrated with work done by non-disabled people? Are they lazy? Unmotivated? What other excuse could there be? 



At an oversight hearing in February 2015, Kathy Greenlee, the head of the federal Administration for Community Living (ACL), testified before the House Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. The ACL includes the Administration on Intellectual and Developmental Disabilities that oversees programs funded by the federal Developmental Disabilities Act. Greenlee stated early on in the hearing that the core idea behind her agency was that people who are aging and adults with disabilities should be able to live independently and participate fully in their communities.  Later, (at about 1hour and 38 minutes) she was questioned by Representative Steve Womack from Arkansas about whether the goal of her agency was to eliminate long term care facilities for people with the most severe disabilities. Her response was that “We have become extraordinarily good in this country at serving people with significant disabilities in home settings and we continue to improve our ability over time." 

When we look at the facts on how well we, as a country, take care of people with significant disabilities, we may come to a different conclusion: 



(from the Madison House Autism Foundation Website via The DD News Blog)

• There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD). 77% of them do not receive publicly funded residential supports.
• Of the 23% (1.127 million people with I/DD), who do receive publicly funded supports, 56% live with family and 44% do not live with family.
• Of the 44% who do not live with family, 27% of those live in their own home. The other 73% live in group homes, foster homes, nursing facilities, and less than 1,000 live in psychiatric facilities.
• 77,000 are on a waiting list for services needed in the next year. 853,000 are living with caregivers aged 60 or over.

According to the 2014 UCP Case for Inclusion, almost 317,000 people are on a waiting list for Home and Community-Based Services.



In Michigan, the Medicaid-funded Home Help program, that is intended to allow people who are aging and people with disabilities to remain in their own homes, is fraught with problems, including low pay for direct care workers who are often poorly trained and not up to performing tasks that are increasingly of a more complex medical nature. Many workers were found to be unreliable. Some workers being paid by the state were felons, although the state seems to have cracked down on this with background checks.

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Before we give ourselves a collective pat on the back for how well we take care of people with significant disabilities, we need a reality check. We can’t take care of people with the most significant disabilities well, if we do not admit that we have far to go before we can claim that “we are extraordinarily good at it”. We can’t take care of people with the most significant disabilities well, if we do not acknowledge, first, that they exist, and then that our expectations of what we would like them to achieve do not magically translate into their being capable of those achievements.

Hope is in my vocabulary, also, but it does not come from believing that Danny and Ian will overcome their disabilities. I know that my sons can be cared for compassionately by people who are up to the task because I have seen it happen and Danny and Ian have had the good fortune to experience some (but not enough) of that. Where do we go from here? We should start with seeking out and learning from individuals with disabilities and their families who experience the heart breaking dysfunction of our system of care and not allow ourselves to be distracted by false ideologies and wishful thinking. 

No Joke : Job Consultant concedes that the comatose are not good candidates for integrated employment!

Eight thousand people with disabilities currently work in sheltered workshops in New York, but that will change if the state and advocates for integrated competitive employment for all have their way. North Country Public Radio featured a story (3/30/15) by David Sommerstein, in Watertown, New York, asking the question, “Can every person with a disability hold a regular job?”

One of the people interviewed was Michael Callahan, who argues that community employment is “achievable for almost everyone…”. He goes on to say, “So bring me a person who’s in a coma and let’s agree right now until they get out of the coma we won’t try to get them a job," But anyone short of comatose is a likely candidate for a minimum wage job in the community. Did I mention that Michael Callahan makes his living as president of a consulting firm (Marc Gold & Associates) that, among other things, finds integrated employment for people with disabilities?

The NCPR story includes interviews with people who welcome the closure of sheltered workshops and others, including people who work in these specialized work centers,  who say they fill a vital need in their communities. 

This is very personal for me, because my two sons, who are not comatose, are nevertheless profoundly limited by their multiple disabilities. Their needs are great: along with 24/7 care, they need activities and social relationships with with people who accept and respect them for who they are.  But that does not include working at a job that pays minimum wage. I always wonder about people who say they could place anyone not in a coma successfully in a job with the proper supports. With unlimited funding and effort, supporting my sons in employment is still unimaginable.  What are they doing this for? To make a point? To prove that their ideology that says everyone can be employed in the community is true?

I have a question for Mike Callahan and this is not a joke, either. By his way of thinking, how can he justify dismissing the employability of a person in a coma? We know that some people in comas are aware of their surroundings and eventually recover. Is it fair to exclude the comatose from the opportunity to work in supported employment in the community?

The NCPR story is worth listening to, but the report begins with a misleading statement about the basis for closing sheltered workshops. This is a common blunder that reporters make when they do not check out source materials and instead rely on what they are told.

The NCPR report begins with  this statement: “The United States Supreme Court ruled that keeping people with disabilities in separate work settings constitutes discrimination more than 15 years ago..." This is not true. Every reporter who wants to talk about the 1999 Supreme Court Olmstead decision should be required to read it. The court in Olmstead did not mention sheltered workshops. The case is about two women in Georgia who were at one time institutionalized, but wanted to receive services in a community setting. They were deemed capable of this by the professionals who treated them and community-based services were adequate to their needs. The court determined that unjustified isolation is discrimination under the Americans with Disabilities Act (ADA). But the court also recognized "...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." The ADA requires that programs are provided in the most integrated setting appropriate to the needs of the individual.

I wouldn’t have to worry that the services and programs that my sons need might be eliminated by overzealous disability advocates, if we had  proper enforcement of the Olmstead decision. Unfortunately, Olmstead is being used for purposes never intended by the Supreme Court, as a tool to help states close programs, eliminate residential options, and relieve the states of responsibility for people with more severe disabilities under the guise of preventing discrimination.

[This post was tweaked and updated later in the day, 4/1/15...JB]

Standardized tests for profoundly disabled children : Accountability or lunacy?

According to an article in the Tampa Bay Times, "Testing for profoundly disabled children gets increased attention",  2/26/2014,  Florida parents  are having difficulty exempting their children with profound disabilities from taking state standardized tests: 

"While her 11-year-old son Ethan lay dying last month, Andrea Rediske had to convince the boy's school district he could not take the state tests.

"Ethan's teacher made daily visits to assess his progress — even when he was in hospice care.

"'Seriously?' Rediske wrote in a Feb. 4 email to Orange County School Board member Rich Roach. 'Why is Ethan Rediske not meeting his sixth-grade hospital-homebound curriculum requirements? BECAUSE HE IS IN A MORPHINE COMA. We expect him to go any day.'"

"The boy died three days later."

Parents and teachers of these profoundly disabled students - students who cannot see or communicate who are required to answer questions about pictures they are shown, for example - are getting increased attention from the Florida legislature. 

There is an alternate assessment that can be given to 1% of Florida's school population, that better measures progress for many students with disabilities. Even the alternate standardized test, however, does not correlate with the performance of students with profound disabilities. Many parents feel the testing is disrespectful of their children and irrelevant to measuring the benefits of their educational programs. A bill has been introduced in the Florida legislature that will make it easier to exempt these students from standardized testing. Consideration is being given to changing teacher evaluations to give teachers of disabled students some slack so that they are not penalized by their students' test scores. 

State Education Commissioner Pam Stewart defends the use of assessments for all students:

"'We all know that the only way to guarantee success in any endeavor is to set goals and measure our progress,' Stewart said. 'Measuring progress is key to successful learning, and I firmly believe that every child enrolled in a public school in Florida deserves the opportunity to have access to the best education possible. It would be a moral outrage to deny that opportunity to any child for any reason.'" 

Is standardized testing for these students accountability or lunacy? I vote Lunacy - 100%. And excuse me, while I go bang my head against a wall.

HUD: Housing for hearing-impaired has too many deaf residents

"It's nice to have a life that's equivalent to other people that are not deaf," said resident Linda Russell. "This building is designed for deaf people, by deaf people, and we know what is best for our needs. And people that don't understand our needs, should not be putting themselves in decision-making positions for us." Resident of Apache ASL Trails senior housing project.

According to a report from FoxNews.com, 10/21/13, "Feds try to eliminate housing for the deaf -- at complex built for hearing-impaired", the federal Department of Housing and Urban Development (HUD) is telling Apache ASL Trails in Arizona, a housing project for deaf seniors, that they are discriminating against the non-deaf.

A memo from HUD on the housing project says, "A preference or priority based on a particular diagnosis or disability and excluding others with different disabilities is explicitly prohibited by HUD's Section 504 regulations…There is no legal authority contained in any of Apache Trails funding to permit such a priority or preference." 

Even though HUD approved the apartment building project in 2008 and helped fund it,  HUD is now "…threatening to pull all federal housing aid to Arizona unless it limits the number of hearing-impaired residents to 18 people." 

According to the report, "All 74 units at Apache ASL Trails accommodate wheelchairs. Blinking lights signal when the doorbell rings and when utilities like the garbage disposal and air conditioning are running. A video phone lets residents 'talk' with friends." Ninety-percent of the units are currently occupied by deaf and deaf-blind seniors, but HUD wants to impose a quota of only 25% hearing-impaired residents.

The dispute over the Apache senior housing project is a continuation of HUD complaints covered in an article on April 28, 2013 in the New York Times:  "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination". 

One rationale used by HUD in claiming discrimination by the Arizona housing project is Section 504 of the Rehabilitation Act .

According to the HUD website on people with disabilities:
 
"Section 504 of the Rehabilitation Act of 1973 states: No otherwise qualified individual with a disability in the United States. . .shall, solely by reason of her or his disability, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program, service or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. (29 U.S.C. 794). This means that Section 504 prohibits discrimination on the basis of disability in any program or activity that receives financial assistance from any federal agency, including the U.S. Department of Housing and Urban Development (HUD) as well as in programs conducted by federal agencies including HUD."

On the website explaining the jurisdiction of HUD in answering complaints of housing discrimination there is an example of when a specific disability may be an eligibility requirement of participation in a program:

"HUD considers several factors in determining if it has jurisdiction to investigate the complaint. … the Department must determine whether the individual, or the person the individual represents, is a person with a disability as defined by Section 504. The Department also must determine if the individual is "otherwise qualified" for the program or activity alleged to have discriminated. …In some cases, disability may also be an eligibility factor. For example, if a housing program is set up under the Department's Housing Opportunities for Persons with AIDS (HOPWA) program, and the complainant's only disability is a visual impairment, the person would not be qualified for the HOPWA project because that project is designed to meet the needs of persons with AIDS. [emphasis added] Therefore, HUD would lack jurisdiction to process this complaint under Section 504."

Under some circumstances, a specific disability is a criteria for eligibility for a federally funded program and people with other disabilities may be excluded. 

Other ironies abound: This is a senior housing project, but apparently there is no charge that younger people are being discriminated against. Although 90% of the residents at Apache are hearing-impaired, 10% are not, . How can the claim be made that non-deaf people are excluded? No actual person has claimed that they have been discriminated against by the project. It appears that only HUD has gone through the mental contortions necessary to justify a charge that actual discrimination is occurring at Apache ASL Trails housing project.

What's next? Hospitals discriminate against the non-sick? Jails discriminate against non-criminals? High Schools discriminate against 5-year-olds? Soccer leagues discriminate against the soccer-impaired?

"Ideology trumps logic" in care for DD

David Kassel at The Real Choices in Care Blog has a lot to say about the extreme ideology of some disability advocates who oppose all congregate care for people with developmental disabilities. In his post "How Ideology trumps logic in the care of the developmentally disabled", 8/20/13, he observes that "according to the ideology, any care setting for the developmentally disabled that serves more than two or three disabled people at one time is now considered to be 'segregated' because it separates those people even momentarily from the 'community.'   No consideration is given here to the consequences of basing policy on this ideology or what the recipients or their families want or think. "

He goes on to note that for these advocates, closing developmental centers all over the country over the objections of families and guardians is not enough:

"Farming programs for the developmentally disabled must be shut down.  Sheltered workshops must be eliminated. Nursing homes that provide expert care for the disabled are seen as no different than nursing homes that do not have that expertise.  And group homes that house more than three people must be closed.   They are all potential congregate care settings and therefore too 'institutional' for the good of the people who participate in them or are served by them."

The ideology of these groups has permeated government agencies at all levels, including the Centers for Medicare and Medicaid Services and the U.S. Department of Justice. Only the assertion that "segregation is discrimination" is taken into account, often without evidence that any individual has actually been discriminated against (either forced into or prohibited from participating in a program or activity against the individual's will based on the person's status as a disabled person). Often the only criteria sited for establishing discrimination is that the person associates or lives with other people who are disabled. 

This is an ideology that unnecessarily causes suffering for both the individuals in need of specialized care and their families. Kassel includes a statement in his blog post from a father whose daughter lives at a specialized nursing facility in Massachusetts. He and other families lived in fear for years that their loved ones with extensive medical needs would be removed from the care they needed because of a lawsuit that has finally been resolved: 

"The (Seven Hills Center) families spent hundreds of hours in meetings and seeking out legislators to attempt to find someone to stand up for their children. Several of the parents sought medical help due to the increased anxiety and stress from the case. When their children died due to the natural course of their many medical problems, we all mourned together. None of us would mourn for the self-righteous extremist opponents of congregate care who imposed this hell on us. Not one of those advocates has shown a single iota of concern for the well-being of our children, who are among the neediest individuals in this world. If any one of them has a conscience, they should be deeply ashamed. We have never heard the slightest word of apology from them."

In the world in which many of these disability advocates live, there is no need to make distinctions between good care and bad, between differences in people that make congregate care not only necessary but desirable for some, but not for others, or to consider the potential harm in the policies they promote. All they know is that they know best and they are right. What a wonderful fantasy that must be.

HUD raises discrimination concerns over housing project for the deaf

A housing complex for deaf seniors in Tempe, Arizona, has run into problems with the federal Department of Housing and Urban Development (HUD). Arizona has allocated money from HUD to help pay for the project, but HUD has raised questions about the housing complex on the basis that it discriminates against people who are not deaf.

According to an article in the New York Times entitled "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination" by Fernanda Santos, 4/28/13, the project called  Apache ASL [American Sign Language] Trails is specifically designed to meet the needs of people who are deaf and use American Sign Language as their mode of communication: "Designed by a deaf architect to fit the needs of the deaf, its units have video phones and lights that flash when the phone or the doorbell rings. Wiring in common areas pipes announcements made through loudspeakers into residents’ hearing aids." The design fosters a sense of community among its residents and has the full support of the Arizona Department of Housing that hoped it would be a model for similar projects.

Other advocates say that HUD's finding of discrimination might "complicate" other projects in which federal money would be used to build housing for adults with special needs: "Already, the Southwest Autism Research and Resource Center, based in Phoenix, has scrapped plans to use federal grants to help pay for a development designed for autistic adults, opting instead to pursue private financing."

HUD's adherence to convoluted and ideologically motivated reasoning has angered advocacy groups for people who are deaf and hard of hearing across the country. In a letter signed by 75 organizations, the National Association for the Deaf (NAD) writes, "In a nutshell, your agency, HUD, is forcing deaf and hard of hearing individuals to only live according to an ideological vision of forced integration. The tragic irony is that such an ideology has punished deaf and hard of hearing individuals seeking a higher quality of life and a safer place to live and has actually resulted in the forced isolation of individuals who are deaf and hard of hearing."

Ironically, Jeff Rosen, who is deaf and the chairman of the National Council on Disability, which advises the federal government on disability policy, "…said these types of discussions could help the government better understand the challenges faced by groups of disabled people like the deaf, who do not often have the opportunity to live in a community that they feel is 'appropriate and fit for them.'"  Although the NCD has not taken a position on this particular issue, it recently published a report in support of deinstitutionalization of all people with developmental disabilities. 

The NCD, in a monumental display of overreach by the agency and advocacy groups supporting it,  declared that the term "institution" should be redefined as any congregate setting of 4 or more people "who do not choose to live together", ignoring the reality that many people with DD are not able to make such choices and rely instead on family members and guardians to decide for them. Furthermore, limiting settings based on the number of people is not mandated by the Americans with Disabilities Act or the 1999 Supreme Court Olmstead decision on discrimination. Strong objections to the NCD report have so far not moved the the agency to retract or modify its position on accessibility to a full spectrum of specialized settings by people who have developmental disabilities. 

According to the New York Times article, Mr. Rosen says, “Our understanding of discrimination and disability policies is evolving.” Let's hope so. 

Wisconsin law: good for business, bad for victims of neglect and abuse

Tort reform refers to changes in civil (as opposed to criminal) justice systems that reduce litigation or damages. In Wisconsin, tort reform that was proposed ostensibly to make the state more welcoming for business and to prevent frivolous lawsuits, has made it more difficult to hold long-term care providers accountable for abuse and neglect of residents.  A law that went into effect in February 2011 bars families from using state investigation reports as evidence in civil lawsuits against nursing homes and other care facilities. Health investigation records are also inadmissible in criminal cases involving abuse and neglect by providers.

An article in theNORTHWESTERN.com, 2/17/13, describes the plight of a 32-year-old man with spina bifida, brain damage, and paralysis who lived in a group home in Menominee, Wisconsin. He developed a bedsore that was so severe that doctors feared that he could be permanently bedridden. A state health department investigation report found that he had the bedsore for four months before he was hospitalized, a fact that the group home provider did not report to the state or his mother as they were required to do. The mother is suing the group home provider for damages, but her attorney is barred from using the state reports as evidence of neglect in court because of the law.

The Wisconsin Hospital Association and Wisconsin Medical Society favor the law, arguing "that barring use of state investigation records in lawsuits and prosecutions lets providers discuss problems more openly, thereby improving patient care." Wisconsin's Governor Walker defended the law, "saying it was needed to forestall 'this constant pattern of litigation' that could be seen as a negative by employers. He added that 'frivolous lawsuits (are) a huge barrier to economic growth and development.'"

The severely disabled man is slowly recovering after nine months lying on his stomach in a hospital and receiving treatment for his wound. He now lives in a nursing home.

I have to remind myself that this is not Bizarro world. This is Wisconsin!

NCD Report on Deinstitutionalization: Part 3

NCD report documents significant problems in community care

Although the National Council on Disability report on Deinstitutionalization places emphasis on the mechanics of closing state-operated facilities for people with DD, it also reveals, in spite of itself, significant problems with community care that are especially alarming for families of people who currently live in those facilities. I'm sure the NCD would claim that these problems can be overcome with careful planning or that the benefits of living in "the community" outweigh the "horrors" of institutional living. Nevertheless, the barriers to safe and adequate care in the community  are significant.

from the NCD report:

• (page 27) The current fiscal constraints faced by states compound the challenge of developing and maintaining a strong community-based service system. Some states are cutting back on the amount of services they provide to each recipient or are limiting the number of service recipients.
• (page 34) The resources dedicated to people with ID/DD vary significantly across states, as does the quality of both institutional and community-based services. In some states the system works relatively well, while in others it takes a lot of ingenuity and commitment on the part of the family to obtain high-quality community services.
• (page 35) A community-based service system depends on the availability of affordable, usable housing, which is typically scarce. …Thus, people are often put on waiting lists or remain in their childhood homes far longer than they desire. One’s housing options should not determine what services one gets. All these factors need to be addressed in the plan.
• (page 35) Under the Medicaid HCBS waiver program, states have considerable flexibility in determining the type of services they will provide and the number of people to whom they will provide the services. Many states have long waiting lists for services. Although current institution residents are guaranteed a space in the community and are not placed on a waiting list, the existence of waiting lists for people who are not in institutions casts doubt on a state’s commitment to community living.
• (page 35) When people with disabilities are disbursed widely in a community, as is desirable, specialized health care and dental services may not be available locally. In 49 states, Medicaid does not pay for routine dental care. Furthermore, many service providers are unwilling to accept Medicaid reimbursement, which they believe is inadequate, further limiting the availability of some practitioners. [emphasis added]
• (page 47) In 2009, an estimated 122,000 people in the United States were on waiting lists for residential services. A state may modify the limit with permission from the Centers for Medicare and Medicaid Services (CMS).
• (page 59) “Our system of community-based supports is not perfect. It remains underfunded, provider wages and training are inadequate, and we must improve client safety in the system. However, Oregonians with disabilities have some things today they didn’t have 30 years ago at Fairview: freedom, dignity and a sense of belonging.” Sara Geiser, Oregon State Representative and a member of the National Council on Disability

As the parent of two adult sons who function at the level of 6-12 month old infants, and live in a 6-bed group home, I know from experience  that parents often fill in gaps in services. We pay for our sons to attend an activity program 3 days per week, we bring them home for part of the day most weekends, and we monitor the group home and their medical care closely. For my older son, we pay $1,000 every time he gets his teeth cleaned, because he needs to be sedated and we have not found a dentist who is willing to do this and accept Medicaid payments. For a number of years my older son experienced the devastating effect of poorly trained staff, high staff turnover, poor management, and inadequate quality controls in his group home. For those who live in unlicensed smaller settings, people with severe disabilities often suffer from neglect and exploitation that results from a lack of supervision and sufficient oversight of the services they receive. We are fortunate that we can still oversee the care of our sons. Many other parents cannot and fear of the “system” that is supposed to care for their children is pervasive. 

NCD Report on Deinstitutionalization: Part 2

“Two Key Truths….”

In its report on Deinstitutionalization, the National Council on Disability states that "two key truths” emerge as the underpinnings for the Americans with Disabilities Act, the 1999 Olmstead Supreme Court decision, and for the rationale to close institutions:

1. People with ID/DD [Intellectual and Developmental Disabilities] have a legal right to live in the community and to receive necessary services and supports. 
2. Life in the community provides opportunities for dignity, freedom, choice, and a sense of belonging that are not possible in an institutional environment.

The first “truth” is only half true. The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.

In dismissing the idea that anyone needs an institutional placement, the NCD report (page 56) says that, “Some of those who oppose institutional closure claim that some people with ID/DD are so severely disabled that they cannot handle or benefit from community living and that institutions are the most integrated setting appropriate to their needs.” The whole truth is that those who oppose institutional closure include the Supreme Court Justices who stated in the Olmstead decision:

“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. at 2187.

And

“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution" [quoting VOR’s Amici Curiae brief]

The second “truth”, that opportunities for dignity, freedom, choice, and a sense of belonging are not possible in an institutional environment, is an assertion that cannot be proved or disproved. It is based on the subjective experience of a wide range of individuals, many of whom are unable to comprehend such abstractions or express their opinion about them.

The underpinnings of the NCD interpretation of the Americans with Disabilities Act and the Olmstead decision are fragile to non-existent as is their rationale for wanting to close all institutions.

NCD Report on Deinstitutionalization: Part 1

From the NCD Web site: The National Council on Disability (NCD) is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees, an Executive Director appointed by the Chairman, and twelve, full-time professional staff.

The National Council on Disability issued a report in October 2012 called "Deinstitutionalization: Unfinished Business". The report is a companion paper to an NCD Deinstitutionalization Toolkit designed to provide a how-to manual for all those interested in institutional closures.

What's wrong with this picture? The National Council on Disability is a federally funded agency that is using federal money to mount a campaign to eliminate another federal program that NCD members don't like. 

Intermediate Care Facilities for people with developmental disabilities (ICF/DD) are funded and regulated by Medicaid. They are considered to be institutions under Medicaid law, along with nursing homes, mental hospitals, and other hospital settings. Some ICFs are larger facilities, but they may be as small as 4-bed state-operated group  homes. They house some of the most severely disabled adults, including people who are medically fragile or have behaviors that make them very difficult to care for in community settings.  ICFs/DD come with an array of services that are often not routinely available elsewhere (for instance, nursing services, dental care, and other specialities). Funding covers total care and is not fragmented the way it is in most community settings.

Residents of institutions have protections against abuse, neglect, and exploitation as well as the right to continue to receive institutional care, even if it conflicts with the ideology of advocacy organizations that don't want them to have this choice.

Although the NCD report emphasizes closing larger facilities, it arbitrarily (and without any specific authority to do so) redefines the word "institution" to include any setting that is "a facility of four or more people who did not choose to live together"(emphasis added). It appears the NCD is laying the groundwork for the elimination of a broad spectrum of living situations currently available to the DD population.

By calling for the closure of all larger facilities, the NCD misinforms the public on the intent of the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision with regard to institutional care for people with severe disabilities. It places at risk people who are the most vulnerable and difficult to care for. 

More Information:

Link to the NCD report.

My comments on the NCD report.

Comments from VOR, a national organization that supports a full array of residential and service options for people with ID/DD.

Comments from a Massachusetts blog, "The National Council on Disability can’t be serious"

Send comments to the National Council on Disabilities at PublicComment@ncd.gov

Because the NCD is a federal agency with oversight by the U.S. Congress, send copies of you comments to President Obama, your U.S. Senators (Carl Levin and Debbie Stabenow in Michigan) and your U.S. Representative (find here)

Study shows autistic students have similar outcomes whether or not in inclusive settings

An article from Disability Scoop, "Study: Inclusion May Not Be Best After All" by Michelle Diament, 11/1/11, summarizes an article from the journal Pediatrics . The study involved almost 500 autistic students and compared those who had spent 75 to 100% of the time in regular classrooms with those who were in more segregated settings. Those in inclusive settings were no more likely to complete high school, go to college or see improvements in cognitive functioning.

“We find no systematic indication that the level of inclusivity improves key future outcomes,” researchers from the University of Alabama at Birmingham and Johns Hopkins University wrote.

The Disability Scoop article goes on to misleadingly state that the Individuals with Disabilities Education Act requires that special education students be served in the "least restrictive environment"(LRE) meaning in regular classrooms. This is what most advocates for inclusion will tell you, but it's not true and it never has been true. The LRE is part of the placement decision and is based on the needs of the individual student.

Beyond the outcomes that were investigated in this study, there are all kinds of reasons to place children in inclusive settings or to opt for more segregated settings. The problem is that Inclusion fanatics have for years asserted that placing all children in regular classrooms with their non-disabled peers is better in all respects for everyone involved. But then Inclusion fanatics have always existed in a fantasy land undisturbed by reason or evidence.

Be sure to read the excellent comments on the Disability Scoop article.

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.