Transplant Discrimination

Elizabeth Cohen writes at CNN:

"We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

These decisions are, to some extent, subjective, as doctors sometimes disagree with each other about who should get an organ. Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled.

"We absolutely know this happens. It's a huge problem," said David Magnus, director of the Center for Biomedical Ethics at Stanford University. "It's real people sitting in a room making these tough decisions, and it's not surprising their own prejudices and biases influence them."

He points to the case of Amelia Rivera, a New Jersey girl with disabilities who was denied a kidney transplant last year, and to a survey he conducted in 2008 showing that more than four out of 10 pediatric transplant centers say they always or usually consider a child's neurodevelopmental delays when making a transplant decision, even though studies have found children with these delays fare just as well medically after a transplant as other children.

...
Ari Ne'eman, president of the Autistic Self Advocacy Network, agreed that doctors sometimes "blow smoke" at patients with disabilities.

"Doctors give faux medical reasons. On further scrutiny, they don't stand up," said Ne'eman, who wrote a policy brief on the issue. "When someone with a disability is looking for a transplant, discrimination is the norm."

Transplant doctors said they don't discriminate against people with disabilities, but that disabilities need to be considered when making transplant decisions.

For example, Taylor, a heart transplant cardiologist at the Cleveland Clinic, said physicians must weigh whether a patient -- any patient -- is willing and able to follow complicated post-transplant medication directions. If the patient doesn't follow doctors' orders, the body could reject the new organ.

"If I were to go in front of the transplant committee, they'd want to stop and see if I'm some pompous doctor who's not going to listen to instructions," he said. "That has to be taken into account."

"Graduate to Nothing"

Many posts have dealt with the problems of ASD teens and adults.  At The Guardian, Kristina Chew writes about her son Charlie:

A number of agencies at the state and federal levels (Departments of Developmental Disabilities, Medicaid, Social Security) oversee programs that Charlie is "eligible" for. The problem is, he may not be able to get a spot in the program or group home that best accommodates his needs. In New Jersey, the waiting list for housing for individuals with developmental disabilities has over 8,000 people on it. The estimated wait time to get a residential placement is 15 years. As a state worker once explained to me, the only reason someone gets off the list is because of "an emergency" – the sudden illness or death of his or her parents.

Our concerns about Charlie's future after he finishes school are shared by thousands of families. A recent survey about the needs of autistic adults conducted by the New York-based Autism Speaks found that, with nearly half a million young people who are on the autism spectrum becoming adults in the next ten years, the need for housing and support services is paramount.

Out of the 10,000 caregivers and 400 individuals who are themselves on the spectrum who responded to the survey, 84% of caregivers reported that an individual on the autism spectrum is currently living at home. Nearly 70% said they had no outside help to provide care.

It doesn't surprise me that families are mostly left to rely on their own resources to care for an older child with disabilities. Everything we have heard about life after school services end has been disheartening. Students might have attended highly regarded private schools for autistic children in New York and New Jersey yet, on "aging out," they graduate "to nothing," and are left to "sit at home".

Autism and Health

At The Huffington Post, Dr. Arshya Vahabzadeh writes:

Medical practice and training has long focused on the treatment of medical illness -- the use of medicines and procedures to rectify what has gone wrong with a human body. Health, however, is far more than the absence of disease, it is also, according to the World Health Organization (WHO), a state of complete physical, mental, and social well-being. People with autism experience many barriers to achieving this definition of health.

Some people with autism find it difficult to engage in regular exercise, through a combination of a lack of suitable opportunities, their own social difficulties, and stigma against them. Let me jump now to my other truth: As medical professionals we often prescribe medications but "there is no pill that can replicate the health benefits of exercise." It is not limited to exercise either, what about diet? Many people with autism also find they are particularly picky about the food that they eat, often ending up on a "yellow diet" that includes starchy or fatty foods such as fries, cheese, burgers, and pizza. What are health care systems doing to address these issues? Unfortunately far less than they could be doing. [emphasis added]

...
Out in the community and close to patients are this group of [primary care] doctors that include pediatricians, family physicians, and internal medicine doctors. It can however be hard to find one, especially if you live in a rural area, or are on Medicaid -- like half of children with autism.

Providing early diagnosis, treatment, and referral for conditions such as autism are essential roles of these community physicians. Having an orthopedic surgeon, a psychiatrist, or a rheumatologist as the doctor at the helm of a person's total medical care just isn't going to cut it. If people with autism are struggling to find a primary care physician, it won't be long before people without autism find themselves in a similar situation.

...

So what happens if a family wants to see an autism specialist? Currently demand dramatically exceeds supply. People often resort to paying out of pocket, recognizing that early intervention is of utmost importance in autism. More autism specialists are not simply going to appear tomorrow, it takes at least five years of residency training after medical school to train a child and adolescent psychiatrist, pediatric neurologist, or developmental pediatrician. Let me give you an example of how dire the situation is, there are only 7,500 child psychiatrists in the country for 74 million children and adolescents.

AGE-IN Act

From a Tuesday press release by Senator Charles Schumer (D-NY):

Today, at the Carrus Institute Building at the Center for Discovery in Monticello, U.S. Senator Charles E. Schumer unveiled legislation called The Assistance in Gaining Experience, Independence, and Navigation (AGE-IN) Act, which would help fund ongoing services for young adults with autism and other developmental disabilities, after they "age-out" of the school system. The Center for Discovery is already a leader in research and treatment for children and adults with complex disorders like Autism Spectrum Disorder (ASD), and Schumer’s plan would allow them to compete for grant funding to research and develop transitional services as those individuals turn 22 years old and are no longer eligible for most school-based support services. Nationwide, about 50,000 children with autism lose meaningful school-based support systems each year, potentially setting back the social, behavioral, educational and emotional progress made during their school years. 

Schumer said that The Discovery Center is a leader in its research, treatment and care of individuals with complex developmental disabilities, like ASD. Nationwide, however, experts agree that there is not a widely held understanding of what services are currently available for  individuals as they “age out” of the school-based care after turning 22, or even what services are most effective at ensuring a successful transition.  The only consensus among researchers is that there is a lack of available data and more research is needed to fully understand and develop techniques to successfully meet transitioning youths’ unique needs, according to the Interagency Autism Coordinating Committee. The AGE-IN Act is the first piece of legislation to establish a comprehensive framework that joins rigorous research analysis with the careful application of its findings to help transitioning young adults with ASDs become successful, independent members of society.  

The AGE-IN Act would first fund research into the best treatments for these young adults in transition, and second, fund efforts by organizations like the Center for Discovery to train “Transition Navigators,” who will help connect young adults with an ASD to further educational or employment programs. The Center for Discover is supportive of such programs to address “aging out,” and Schumer said that based on its long track record of success, the Center for Discovery is a great candidate for federal funding to develop programs to train these Transition Navigators.

“Right now, too many of our young adults with autism will turn 22 and ‘age out’ - or lose access -  to the treatment and support systems that have helped them grow and develop, putting at risk all their progress. We cannot abandon our young people with ASD just as they are about to continue with their education or enter the workforce; instead, what we need to do is call in the experts at places like the Center for Discovery to help bridge that gap,” said Schumer. “That’s why I will be pushing for the AGE-IN Act to funding crucial research and training programs through places like the Center for Discovery to ensure that we invest our resources in helping young adults with ASDs become integral, contributing members of society. Autism is a serious illness that doesn’t ‘age-out’ at 22, and neither should the support services that help our young people with ASD grow and succeed.”

...

One of the biggest problems facing young adults with autism at The Center, is that when they turn 22, the funding for their support services can be reduced by an estimated two-thirds. The Center continues to serve this high-need community, but has struggled to provide the necessary funding to provide services to this age group. The Center, although they receive some public funding, relies heavily on corporate and individual donations to serve high-risk communities and conduct innovative research. Having a source of federal income to provide necessary services, and produce data driven research which will enhance the services directly to the community they serve as well as the at large developmentally disabled community, will ultimately result in better services, treatment options and new models to achieve higher rates of productivity and education.

Schumer explained that the AGE-IN Act, sponsored with Senator Robert Menendez, could mean more research funding for facilities like The Center for Discovery.  The Act would also provide funding to train relevant medical, educational, and vocational personnel in how to assist young adults with an ASD with their transition into society.  Schumer explained that the training of these “Transition Navigators” could take place at a top-of-the-line research facility like the Center for Discovery. A site like The Center for Discovery would be highly competitive in obtaining grant funding through this program, and Schumer said that the Center could then establish best practices through research and hands-on treatment to share with other schools and providers that serve teenagers and young adults with ASD.

Currently, more than half of young adults with ASDs are not engaged in employment or further education 1 to 2 years after they have graduated from high school. Only 35% of such adults attend 2- or 4-year colleges. Certainly, some of these individuals may not be able to attend higher education, but in other cases a lack of transitional services and trained professionals to guide young adults towards appropriate programs are to blame. The AGE-IN Act is the first piece of legislation to establish a comprehensive framework that joins rigorous research analysis with the careful application of its findings to help transitioning young adults with ASDs become successful, independent members of society.  Schumer argued that support services, during what is a critical juncture in any person’s life, could mean the difference between a stable adult life and regression.
 

Special Education Reform and Autism

A new report from the Thomas B. Fordham Institute proposes reforms to special education:

• District Cooperatives: Many districts—including charter schools, which often comprise their own mini-districts—do not have the requisite size and capacity to serve high-need students effectively and affordably. Multi-district co-ops allow for both economies-of-scale and better service-delivery for these children.
• Student Funding Based on Multiple Weights: Special education funding systems based on average student needs may be easily administered, but they can also lead to inefficient and ineffective resource allocations. Weighted student funding is a tiered system of resource allocation that allows for a more rational and efficacious distribution of funds, enabling districts with more high-need pupils (or pupils who require more dollars to pay for their IEP-mandated services) to receive more money while jurisdictions that need less receive less. Basing those weights on services needed by children rather than disability diagnoses significantly improves the accuracy of this system.
• Exceptional-Need Funds: Districts (especially small ones) sometimes find themselves overwhelmed by the high cost of educating one or two particularly needy children. This type of fund, managed and predominantly financed by the state, acts as an insurance mechanism for districts that can’t cover the full cost of educating high-need pupils along with all others under their purview.

The report makes a number of observations about autism in particular:

It’s pretty clear that the number of high-need youngsters is rising. Between 2000–01 and 2009–10, the population of students with autism spectrum disorders (which require, on average, almost three times the number of dollars as students with less severe disabilities) quadrupled:9,10 In California alone, over 45,000 additional students were determined to be “on the spectrum” in the 2000s.11 Since 2003, Massachusetts schools have enrolled over 30,000 additional students who have been diagnosed with autism or moderate-to-severe health, communication, or neurological impairments, while the number of lower-cost, specific learning disabilities decreased by nearly the same amount.12 The Bay State also saw its special-education spending increase by 57 percent between 2001 and 2010 (as overall education spending rose 42 percent), due in large measure to growth in the number of high-need students.

...

Census-based funding partially solves the problem of overdiagnosis. (Only partially, as parents may still press on districts to provide the highest levels of service possible—and additional services of various kinds.) But it also carries the problems that accompany ill-targeted funding. By comparison, funding high-need students based on multiple weights—or “multiweight funding”—sets up a sturdier, albeit still imperfect, framework.34 Under such a system (employed by a dozen states in 2009), dollars are distributed in tiered amounts. A student receiving standard instruction receives unweighted, base-level funding (and thus has a “multiplier” of one).35 A student receiving some additional supports may have a multiplier of 1.5, or 2. For those who require significant additional supports, the multiplier may be 4 or even more (for example, Ohio’s multiplier for autism and traumatic brain injuries is 4.72). How a student qualifies for those tiers—as well as the number of tiers—depends on state policy. The typical way that states assign weights (within special education) is through medical diagnosis alone (which, despite its ubiquity, is not the best method; see below). For example, in South Carolina where the base state aid was about $5000 per pupil (2009), a student diagnosed with autism would bring her district $12,850 ($5,000 times the multiplier of 2.57, see Table 1).

...
 Along with more tailored and targeted cost estimates, transitioning away from a diagnosis-based system decreases incentives for overdiagnosis (or at least decreases the payout). Instead of a borderline student either having or not having autism (a difference of many thousands of state dollars), the difference may be a two or a three on a five-point scale measuring communication skills (within a matrix of many different skills). Being a borderline student and falling over that line may mean a mild increase in estimated need, but the jump is significantly less than jumping from a no diagnosis to a yes.

 9. Janie Scull and Amber M. Winkler, Shifting Trends in Special Education (Washington, D.C.: Thomas B. Fordham Institute, May 2011), http://www.edexcellence.net/publications/shifting-trends-in-special.html.www.edexcellence.net10. Parrish, “Who’s Paying the Rising Cost of Special Education?”11. “Data Quest,” California Department of Education, Data Quest, last modified August 21, 2013, http://dq.cde.ca.gov/dataquest/.

...34. Seven states have single student weights, meaning that districts receive additional special-education funding on a yes-no basis, regardless of the severity of a child’s disability or the amount of educational services needed.35. Weights are not restricted to special education, however. A state may weight students based on whether they are in a small or large district, if they are in poverty, etc.

Autism, Insurance, and a Wheel of Fortune

Many posts have discussed the complexity of the issues surrounding autism.  The complexity lies not just in the science but in the implementation of policy. At Autism Speaks, Lorri Unumb presents a visual aid:

I began preparations to discuss our advocacy agenda a month ago, when I woke up from a dream with a vision for how to visually demonstrate the situation that autism families face when trying to access treatment for their loved ones. I dreamed a big spinning wheel – no, two wheels – that would show the game of chance families must play to determine if they can afford the care recommended by their doctors. I asked my husband if he could construct a large, standing, double Wheel of Fortune. Bless his heart – my husband did not say “no,” but during the course of the conversation we realized that some outfit might actually manufacture such wheels. We set to work designing a double-wheel that would show the 50 states on the big outer wheel and the various types of health insurance on the inner wheel. Only if you’re lucky enough while spinning both wheels do you get coverage for the treatments your child needs. Is that any way to dole out health care??? I look forward to bringing the wheel around the country in pursuit of meaningful autism insurance reform. (Let me know if your legislators still need to be educated about the autism health care lottery!)

 

Organ Transplants and Paul's Law

The Philadelphia Inquirer reports:

Inspired by the case of a young man with autism who was denied a place on a heart-transplant waiting list, a Philadelphia legislator will soon begin gathering support for a state bill that would prohibit discrimination against people with disabilities who want organ transplants.

Rep. John Sabatina (D., Phila.) plans to introduce "Paul's Law" in honor of Paul Corby of Pottsville, whose mother, Karen, said doctors at the Hospital of the University of Pennsylvania refused to put him on the heart-transplant list because of his autism. Her petition on change.org protesting the decision has drawn more than 289,000 signatures.

The bill would let programs deny transplants to people with disabilities only if the disabilities are "medically significant" to the procedure. People with disabilities could not be denied because they cannot comply with complex post-transplant medical regimens as long as they have an adequate support system.

"It's the moral and correct thing to do," said Sabatina, who had a half-sister with an intellectual disability. He hopes for passage in 2014.

California has a similar law, and New Jersey passed one over the summer after Amelia Rivera, who has an intellectual disability, was turned away by Children's Hospital of Philadelphia's transplant program. The hospital later apologized and Rivera, 5, received one of her mother's kidneys in July.

Screening Out Autism

Authorities in Western Australia will let IVF clinics to "screen"  embryos to reduce the chances of autism. Andrew Whitehouse writes at The Conversation:

The Reproductive Technology Council will now allow certain women undergoing IVF treatment to be selectively implanted with female embryos only. The rationale for this practice is that autism is more likely to affect males than females (approximately 4 males for every 1 female), and by selecting female embryos, the chances of this child developing autism are reduced.

The West Australian reported that: “only families at high risk of having a child with autism, such as families who already have two boys with severe autism, would be considered for embryo screening”.

The reaction to this report was swift and furious, and came from all corners of the globe.

Some were concerned about the science underpinning this approach, and pointed to recent evidence that autism may be under-diagnosed in females, and that the gender imbalance in autism may not be as skewed towards males as we once thought. These critics argue that the selective implantation of female embryos may not actually reduce the chances of a child developing autism.

Others opted for a more extreme attack on health professionals and families, branding the developments as eugenicist - a scientific discipline that advocates practises that are aimed at improving a population’s gene pool. The connotation of this label is a deeply negative one, and will be forever linked to Nazi regime, who used eugenics as a justification for the genocide of Jews, Gypies, homosexuals and others during World War II.

...
Understandably, PGD is a technique that causes concern within certain parts of the autism community. Some autism advocates argue that PGD will eventually be used to select autism out of the gene pool.
...
The flip-side of the debate is that autism sometimes associated with significant disability that can affect quality of life.

It is without question that a person’s life would be improved if they were free from intellectual disability, if they had the facility to communicate more freely, and if they had the capacity to live independently.

To want a person to live without disability does not diminish in any way our love for people in these circumstances, nor their irreplaceable importance in our lives.

At National Review Online, Wesley J. Smith takes exception:

If someone can be treated medically to overcome the effects of autism, I don’t know who would object. Whitehouse is saying that it is respectable to prevent them from ever being born.

And don’t think that a genetic test wouldn’t lead to calls for mandatory pre-natal testing and the promotion of eugenic abortion–just as now with Down syndrome and other gene-related disabilities.

Whitehouse says that debating autism cleansing is a “needs to be had.” That is like saying allowing eugenic cleansing for racial features is a debate we need have: Both are invidiously discriminatory and have no place in an enlightened, equality-believing society.

P.S. The great animal welfare advocate, Temple Grandin, has mild autism. Our food animals have benefited tremendously because she wasn’t selected out before birth.

Duplicative Research

A previous post discussed duplication and overlap in employment programs.  The same problems plague research, according to a new report from the Government Accountability Office:

Eighty-four percent of the autism research projects funded by federal agencies had the potential to be duplicative. Of the 1,206 autism research projects funded by federal agencies from fiscal years 2008 through 2012, 1,018 projects were potentially duplicative because the projects were categorized to the same objectives in the Interagency Autism Coordinating Committee's (IACC) strategic plan. Funding similar research on the same topic is sometimes appropriate--for example, for purposes of replicating or corroborating results--but in some instances, funding similar research may lead to unnecessary duplication. The potentially duplicative research projects included those funded by the Department of Defense (DOD), Department of Education (Education), National Science Foundation (NSF), and agencies within the Department of Health and Human Services (HHS)--Administration for Children and Families, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid Services, Health Resources and Services Administration, National Institutes of Health (NIH), and the Substance Abuse and Mental Health Services Administration. Each agency funded at least 1 autism research project in the same strategic plan objective as another agency. For example, 5 agencies awarded approximately $15.2 million for 20 autism research projects related to 1 objective to test methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings.

...Per federal internal control standards, agencies should establish a means of communicating with other agencies; this is important to maximize the efficiency of the federal autism investment and minimize the potential for unnecessary duplication

ABLE Act Gets Majority Support

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

The Arc explains the bill:

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.

From a Crenshaw press release:

Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine. They deserve some assurance that they will be able to 

Setback for Georgia Mandate

Autism Speaks reports:

The Senate and House sponsors of Ava's Law said they will press forward for passage of the autism insurance reform bill when the Georgia Legislature reconvenes in 2014.

Sen. John Albers (R-Roswell) and Rep. Ben Harbin (R-Evans) restated their commitment following Monday's 7-4 vote by the Special Advisory Commission on Mandated Health Insurance Benefits against a recommendation that the Legislature consider the bill.

"We will get this passed," Albers [left] told supporters of the bill following the vote. "Today was more motivation to pass Ava's Law."

"Even though today's vote did not go our way, we will continue to push forward," said Harbin [right].

The commission members were appointed by Gov. Nathan Deal, Lt. Gov. Casey Cagle and House Speaker David Ralston, and included only four elected lawmakers. It's charge was to conduct a "cost-benefit" review of several bills before the Legislature, including Ava's Law which would require state-regulated health plans in Georgia to cover autism-related treatments, including Applied Behavior Analysis (ABA).

Georgia is one of just 16 remaining states yet to enact autism insurance reform; Home Depot Co-founder Bernie Marcus earlier this year said Deal assured him he would sign the bill if it was voted out of the Legislature.

"The bottom line is that we got the negative vote we anticipated," said Judith Ursitti, Autism Speaks director of state government affairs. "Their recommendation is non-binding and simply goes to the Governor in report form."

One positive development that came as a surprise was the Yes vote from Sen. Renee Unterman (R-Buford), who announced during the meeting that she wants to work with advocates to craft compromise language to move the bill forward without having to come back to the commission.

The bill is named after Ava Bullard, whose mother Anna Bullard of Lyons, has helped rally Georgia families behind the legislation.

Another Reaction to Wright Letter

Suzanne Wright's letter on autism continue to generate reactions. Canadian activist Linda Mastroianni writes at HuffPost Living:

Yes, autism is exhausting, worrying, heart-wrenching, but it is also about triumphs and milestones and making huge accomplishments when others (like Autism Speaks) have handed down a life sentence of despair, pain, financial and marital ruin. For a family who has just received a diagnosis of ASD, watching videos like this or listening to Autism Speaks is dangerous. It can have them quickly sinking into an abyss of desperation when in fact, this isn't the whole picture at all. Instead of instilling fear into families lets instill stories of hope and perseverance.

By no means do I want to diminish the struggles that many families deal with on a daily basis with their autistic child. I know what it's like having a nonverbal child with behavioral issues. I know what it feels like having a child that is constantly screaming all day. I know what it's like to have a child that wants to take off his clothes all day and just stay in the bathtub. I know what it's like having daycare call advising you that they can no longer care for your child because he is just "too much to handle".

But I also know what it feels like to see this child develop; to have been blessed with therapists that have helped him to ease down on the screaming until it was a thing of the past. I also know what it feels like to see this child go to school and play with friends. Yes, he is in a special school for special needs kids but that doesn't make the quality of his life any less than ours.

And that is where my issues with Autism Speaks resides. I take great offence that they label my son as a burden. And they do because their belief is that Autism is the reason why "families split up, go broke and struggle through their days and years".

Special Education and Charter Schools in California

A number of posts have discussed the role of charter schools. EdSource has an op-ed by Gina Plate, senior adviser for special education for the California Charter Schools Association. 

In California, services for students with disabilities are administered through regional district collaboratives, called Special Education Local Plan Areas, or SELPAs. In this case, the SELPA for Los Angeles Unified organized a new option for charter schools to provide special education services with full responsibility, flexibility and autonomy for serving all students with disabilities enrolled in the school. The Charter Operated Program (COP) became operational on July 1, 2011 with 47 participating schools, serving nearly 27,000 students. Its mission is to create a community of charter schools working together to provide innovative, high-quality educational options for students with unique needs. This network will serve as a model for excellence and directly address the concern that historically there have been lower percentages of students with special needs in charter schools compared to the district average.

...
A primary goal of the LAUSD board was to increase the number of students with special needs enrolled in charter schools, as well as the range of disabilities of the students served. That is exactly what we have seen in a report released this fall by the California Charter Schools Association. The results of the first two years of the COP program have exceeded all original expectations:

• The percentage of students with disabilities enrolled in COP schools increased from 8.09 percent to 9.01 percent after the first year, which was greater than a similar increase across all charter schools in the district. (Based on data from California Basic Educational Data System and Welligent.)

• The percentage of students with moderate to severe disabilities at the COP schools grew by 21.9 percent, which is greater than the overall student enrollment growth of 11.2 percent.

• COP member schools added more than 100 new students with moderate to severe disabilities after their first year in the program. 

A new report from the Office of the Independent Monitor, the oversight agency of the Los Angeles Unified School District’s special education program, shows this trend of increasing enrollment of students with special needs continued in the third year of the program as well.

"Please, can you help me go to college?" -- An Update

A previous post mentioned Billy Pagoni, who asked President Obama for help in his quest to go to college.  Fox provides an update:

The video garnered attention from people all over the world, as well as feedback from a White House spokesperson, who provided Edith with a list of colleges that offered educational programs for autistic students. However, after meeting with these colleges, Edith found their programs to be more geared towards those with high functioning autism, such as Asperger’s syndrome – and since Billy had a more severe form of the disorder, he couldn’t quite fit in.

As a result, Edith was forced to find alternative solutions to meet Billy’s educational needs.

Fortunately, Billy was able to get a glimpse of the college experience when his family moved back to Connecticut and enrolled him in a special program at Quinnipiac University in Hamden. There, he was able to finish his senior year of high school while living on campus and learning how to function on his own.

But after graduating in May of 2013, Billy still wanted to continue his educational career. That’s when Edith stumbled upon G.R.O.W.E.R.S. Inc., a company aimed at helping people with developmental disabilities perform useful skills and tasks in a normal work environment.

Edith said this program has been extremely beneficial for Billy, as they try to assess his options for future education and employment.

“We’re kind of in a transitional stage,” Edith said. “He really wants to continue with that post-secondary academic experience, but we have to carve it out for them, because there really are no programs out there.”

At G.R.O.W.E.R.S. – which stands for Growing Real Opportunities with Educational Relationships & Stability – Billy and other adults work together to grow flowers and plants in a greenhouse, while attending to additional responsibilities surrounding the horticulture business. The program is meant to cultivate the specific needs of each participant, depending on what they want to achieve in the future.

Special Education in California

EdSource reports on a new task force on special education in California:

About 10 percent of California’s 6.3 million students have been classified as having a disability, which is less than the nationwide average of 13 percent, according to the National Center for Educational Statistics. But the rates of classification vary considerably among districts, particularly among those students identified as having learning disabilities, which make up more than 40 percent of the total. Serving students with disabilities costs an average of $22,300, more than twice that of a mainstream student, according to a Legislative Analyst’s Office report, but most students with disabilities need much less costly services; the bulk of the expense goes to a small percentage of severely disabled students and those requiring residential facilities. Students with autism, now making up 10 percent of students with special needs, has been the fastest growing disability category.

A shortage of special education teachers has been a perennial concern of the Commission on Teacher Credentialing, which has recently focused on the type of training these teachers receive. In California, different credentialing standards have applied to special education and general academic teachers. In June, the Teacher Preparation Advisory Committee recommended that the commission reexamine this relationship, perhaps adding general education requirements for a special education credential and extra training in mild language disabilities for general teachers. A more blended approach could better prepare teachers to work with students who haven’t been coded with a disability but have learning issues while better preparing special education teachers for mainstream classes in the more rigorous Common Core standards.

More on the Autism Speaks Controversy

At Forbes, Emily Willingham weighs in on the Autism Speaks controversy:

Do families with autistic children need a smoother road to services and resources? Of course. Families with children with any complex condition need that, and so do autistic adults. Do we need better supports in school, better infrastructure for our children as they grow? Yes. Of course. Do we have to diminish and demean and dehumanize our children to get people to listen to us when we talk about these needs? I emphatically think not, and many autistic people and parents of autistic children agree, based on the reaction in the comments on Wright’s post [and elsewhere, including from longtime supporters].

It’s odd that Wright would argue so strongly for supports given that, according to the Autistic Self Advocacy Network [their statement on Autism Speaks is here], her own organization in 2010 devoted only 4% of its budget to “Family service” grants. And Autism Speaks’ track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent.

At the Jewish Journal of Greater Los Angeles, Michelle K. Wolf writes:

Her relentless focus on the burdens of raising a child with a developmental disability is really scary to me—after all, if having a family member with severe special needs is such a tragedy, why not remove those kids/teens from their families and communities? Wouldn’t life be easier all the way around? That was the conventional thinking for too long in this country, resulting in such horrors as Willowbook in New York, and unfortunately is still the norm in many countries around the world.

One parent blogger, Shannon Des Roches Rosa, who also a co-founder and senior editor at Thinking Person's Guide to Autism felt that Wright’s letter was

“ham-fisted” (strikes a great chord to a Jewish blogger) and outraged “at her using our lives to yank John Q. Public's pity chains.”

And from an adult with autism:

“We are teachers, psychologists, parents, somebody's children, researchers, scientists, artists, musicians and many, many more. There are many roles for us in the organizations which claim to represent us and work towards improving supports for us… Please remember: Nothing about us, without us.”

In an interesting historical side note, on Nov. 15th, the White House is hosting an observance of the 50th Anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, signed into law by President Kennedy in 1963. Originally called “The Mental Retardation Construction and Facilities Act of 1963”; this was the first federal law to promote community-based health care and provided federal funding for such facilities.

What families and adults with autism and other developmental disabilities need isn’t pity. We need an update of that 1963 law to ensure adequate financial assistance for families, with more job opportunities and affordable housing options for adults . Overall, we need a system that is built to help, not hinder, access to needed services and support.

Autism Speaks Contoversy

On Monday, Suzanne Wright wrote at Autism Speaks:

This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.

We’ve let families split up, go broke and struggle through their days and years.

No more.  Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit.  We will demand a national response.

John Elder Robison has responded by resigning from the organization's science and treatment advisory boards  He writes on his blog:

The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect. Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help. As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.

Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own. She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage.

At The San Francisco Chronicle, Laura Shumaker shares her letter to Liz Feld;

I am the parent of a 27 year old son with autism and a long time supporter of Autism Speaks. I contributed to the Transition and the Employment/Housing Toolkits, have been a frequent contributor to the Autism Speaks Blog, have written frequently about Autism Speaks in my SFGate Autism Blog, and have spoken at many kick off events. I have great working relationships with many of your staff.

Over the years, many self advocate groups have argued with me about the role of Autism Speaks in their lives. I have been a loyal defender, pointing out the that Autism Speaks family services and resources are extremely beneficial for parents and families over the lifespan. I was gratified when it seems that Autism Speaks took down the video “I am Autism” and appeared to be changing their tone toward a more positive “make life work” for people with autism (and believe that my influence and loyalty helped change that tone.)

I am very discouraged with the Wrights recent remarks, and believe that the timing could not be worse.

A press release from the Autism Women's Network:

On Wednesday, the Autism Women's Network (AWN) condemned Autism Speaks, Suzanne Wright, and all entities involved in the publication of "Autism Speaks to Washington- A Call for Action" and its hostile and dishonest portrayal of Autistic people. AWN denounced Autism Speaks, the largest Autism Advocacy Group, for hosting a Summit on Autism in Washington, D.C. this week which excluded the participation of Autistic people while simultaneously endeavoring to secure a national plan on Autism.

The Need for Action on Wandering

Lori McIlwain, executive director of the National Autism Association, writes in The New York Times about her own son's wandering.

Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.

Under federal criteria, which most states follow, the Amber Alert system [see story on Silver Alert]  can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”

Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”

Oregon and ABA

According to The Lund Report, an evidence subpanel of Oregon's Health Evidence Review Commission seems likely recommend ABA for younger children on the Oregon Health Plan, butcontinue denying treatment for children over 12.  The Commission and its panels rely on the evidence reviews of the Center for Evidence Based Policy at Oregon Health and Science University.

The commission has already rejected the autism treatment once, in 2008, but the new law compelled the health evidence board to reconsider the evidence and come to a new decision about providing treatment, beginning next fall.

“If you don’t have good evidence, it could suck up resources,” Dr. Alison Little, a physician at the policy center, told The Lund Report. “If this doesn’t work, we really need to be putting resources into what does.”
...
Another rejection would disproportionately affect racial minorities, particularly blacks and Latinos, whose representation on the Oregon Health Plan is roughly twice what it is in the statewide population.

Dr. Katharine Zuckerman, a pediatrician at OHSU, testified that denying treatment to older kids would further disproportionately affect children from these minority groups.

The average autistic child is diagnosed at 5, but the age is 7 for black and Latino children.

...
Dr. John Sattenspiel, who sits on the evidence subcommittee, pointed out that the new coordinated care organizations are being monitored on the percentage of behavioral health exams they conduct for children, eliminating much of the racial and class disparity in diagnosis and catching these kids at the crucial younger ages.

The mention of CCOs brought up an ironic twist — the organizations have been championed for their flexibility to use cost-effective, common-sense solutions like employing community health workers and buying air conditioners to improve overall health.

But without the ability to provide proper psychological treatment for autism, the CCOs as well as the Department of Human Services will be on the hook for millions of dollars more to provide for their needs of disabled kids and adults in more intensive settings, such as special education, group homes, and 24-hour nursing care.

“If you intervene early, you won’t have to pay as much later,” said Dr. Keith Cheng, the medical director at Trillium Family Services, Oregon’s largest provider of juvenile mental health treatment.

Judge Tells Florida Medicaid to Cover ABA

Austism Speaks reports:

A federal judge has ordered Florida's Medicaid program to immediately cover applied behavior analysis (ABA) for children with autism "to prevent irreversible harm to these children’s health and development." The Autism Speaks Legal Resource Center filed a friend-of-the-court brief in the case on behalf of the children.

U.S. District Court Judge Joan A. Lenard originally issued the order in March 2012 in a lawsuit, Garrido v Dudek, demanding, “How many children were lost?” The suit was brought on behalf of several Florida children with autism on Medicaid against the Florida Agency of Health Care Administration (ACHA), which administers the state's Medicaid program.
An appeals court upheld the order in September, but directed Lenard to amend her ruling to make clear that ACHA can make eligibility determinations for ABA coverage on a case-by-case basis.

Lenard issued a permanent injunction last week, directing ACHA to immediately provide ABA to the plaintiffs, to notify all community behavioral health services providers enrolled in Medicaid that ABA is now covered for children diagnosed with autism, and to notify all physicians enrolled in Medicaid who provide EPSDT screens that ABA is now a covered service.

In her ruling, Lenard found the ACHA failed to follow its own procedures, relied on an insurance industry-funded study to debunk ABA, failed to obey a mandate from the Legislature to pursue Medicaid waivers, and determined that ABA was "experimental" on the basis of being sued rather than careful analysis of medical literature. ACHA determined that ABA was experimental shortly after the lawsuit was filed in 2011.

Online Community Building

At the University of Texas at Austin, Lydia Nicole Bierer completed a dissertation in educational psychology titled "Online Community Building by Autistic Adults."  The abstract:

One diagnostic criterion to identify individuals as having an autism spectrum disorder (ASD) is that their communication patterns, social reciprocity, and interactional competence show qualitative impairment (American Psychiatric Association, 2000). And yet, my experience as an individual who was once diagnosed as ASD and my investigations of Internet websites run by and for autistic individuals led me to see that individuals who identify as ASD are not only interested in communicating with others but highly articulate in self-advocating through the affordances of online communication. My research was focused on exploring the communicative experiences of individuals who participated in two websites designed by and for autistic individuals as a means of self-advocacy, WrongPlanet and AspiesforFreedom. The method used to study the two websites was that of participant-observer. Having joined the online groups by introducing myself, I was able to peruse archived postings and current threads available on the websites. I analyzed threads of postings for themes being discussed and for features showing evidence of what Herring (2004) described as online community. Some of the postings were triangulated by interviewing participants. These interviews revealed more personal information about how one chooses to self-advocate and create community online. Results indicated that the forum posts of these two autistic-run websites demonstrated evidence of shared community and self-advocacy through the topics discussed. The autistic individuals I studied seemed to want to be seen as having a difference not a deficit. They acknowledged their struggles, but posited that individuals with ASD have strengths that are uncommon and are currently being under-utilized by society. Their use of the Internet demonstrates how autistic individuals are capable of communicating about a wide variety of topics, and are capable of contributing to the conversation about what makes them similar and different from those whom they call Neurotypical. The significance of this study is that insights I present have a different validity than other studies of autistic individuals conducted by non-autistic researchers. Also, by challenging stereotypes of the capabilities of autistic individuals, a path is created whereby all may benefit from the strengths, talents, and insights they are able to provide.

Herring, S. C. (2004). Computer-mediated discourse analysis: An approach to researching online behavior. In S. A. Barab, R. Kling, & J. H. Gray (Eds.), Designing for Virtual Communities in the Service of Learning (pp. 338-376). New York: Cambridge University Press. Preprint:http://ella.slis.indiana.edu/~herring/cmda.pdf

Federal Employees and ABA Coverage

Autism Speaks reports:

More insurance carriers participating in the Federal Employees Health Benefits Program (FEHB) will provide autism benefits in 2014, including the first carrier serving northern Virginia. However, many gaps in coverage remain in the FEHB program which is the nation's largest employer-sponsored health benefits program, covering 8.2 million federal employees, retirees and dependents.

The Office of Personnel Management, which manages the FEHB program, urged its participating providers in 2012 for the first time to include autism benefits, including coverage for Applied Behavior Analysis (ABA), starting with their 2013 policies. This year, OPM directed participating providers to either cover ABA or explain why they were not including the benefit.

Ava's Law and the Limits of the Affordable Care Act

In Augusta, George, WJBF reports that the Affordable Care Act does not provide for the ABA coverage that Ava's Law would mandate:

Insurance companies in Georgia are not required to cover treatments for autism.

However other states, including South Carolina mandates that their insurance companies cover autism treatments. The Affordable Care Act goes into effect January 2014, but it doesn't make any concrete changes to insurance coverage. District 122 representative Ben Harbin: " Ava's Law is a bill that I drew up this past year, to try to get the coverage that those families to get the ABA applied behavioral coverage to help their children."

...Dr. Carolina DiBattisto, Developmental Pediatrician, Children's Hospital of Georgia: " there are a lot of treatment strategies that make a huge difference in children's lives. the best most scientifically proven therapies are behavioral intervention, so applied behavioral analysis therapy. also speech therapy [and] occupational therapy."

Ben Harbin: "it's been proven to help them gain those skills those social skills all of those skills that allow them to lead a more productive life, and it works if you just get to children early."

Representative Harbin did the calculations and says autism insurance reform makes economic sense for the state of Georgia, " its about 32 cents to 33 cents a month that's what we've estimated it would cost. there have been some estimates that say it's a little more.....This is not just a fiscal issue, this is about a quality of life issue. Anyone affected by autism or seen a family affected by autism, they understand the importance of this."

Risperdal

Though there is no drug for the core symptoms of autism, most ASD kids are on meds.  There is widespread concern both about overmedication and use of the wrong medications.

A Monday release from the US Justice Department reports on legal action concerning Johnson and Johnson, as well as Janssen Pharmaceuticals Inc., a J&J subsidiary.

Global health care giant Johnson & Johnson (J&J) and its subsidiaries will pay more than $2.2 billion to resolve criminal and civil liability arising from allegations relating to the prescription drugs Risperdal, Invega and Natrecor, including promotion for uses not approved as safe and effective by the Food and Drug Administration (FDA) and payment of kickbacks to physicians and to the nation’s largest long-term care pharmacy provider. The global resolution is one of the largest health care fraud settlements in U.S. history, including criminal fines and forfeiture totaling $485 million and civil settlements with the federal government and states totaling $1.72 billion.
...
In a related civil complaint filed today in the Eastern District of Pennsylvania, the United States alleges that Janssen marketed Risperdal to control the behaviors and conduct of the nation’s most vulnerable patients: elderly nursing home residents, children and individuals with mental disabilities. The government alleges that J&J and Janssen caused false claims to be submitted to federal health care programs by promoting Risperdal for off-label uses that federal health care programs did not cover, making false and misleading statements about the safety and efficacy of Risperdal and paying kickbacks to physicians to prescribe Risperdal.
...

In addition to promoting Risperdal for elderly dementia patients, from 1999 through 2005, Janssen allegedly promoted the antipsychotic drug for use in children and individuals with mental disabilities. The complaint alleges that J&J and Janssen knew that Risperdal posed certain health risks to children, including the risk of elevated levels of prolactin, a hormone that can stimulate breast development and milk production. Nonetheless, one of Janssen’s Key Base Business Goals was to grow and protect the drug’s market share with child/adolescent patients. Janssen instructed its sales representatives to call on child psychiatrists, as well as mental health facilities that primarily treated children, and to market Risperdal as safe and effective for symptoms of various childhood disorders, such as attention deficit hyperactivity disorder, oppositional defiant disorder, obsessive-compulsive disorder and autism. Until late 2006, Risperdal was not approved for use in children for any purpose, and the FDA repeatedly warned the company against promoting it for use in children.

Coverage in Iowa

In Des Moines, WHO-TV reports on implementation of an Iowa law giving state employees insurance coverage for ABA.

Wellmark is the insurance administrator for the state.  In a letter to Wellmark last August, the Iowa Insurance Division directed Wellmark to “establish and implement procedures to pay for statutorily covered autism services.”  It also directed Wellmark to “implement and establish new procedures as quickly as possible due to pending claims.”

Wellmark representatives say the statute is “complicated” and they have questions about exactly who can provide ABA therapy.  In Wellmark’s response to the Insurance Division, it asks for further “clarification and guidance” on matters such as “educational and licensure/certification requirements of such “others” for whom certified behavioral analysts may act as supervisors.

“The insurance company doesn’t want to pay for those services or doesn’t know how to pay for those services when the Board Certified Behavioral Analyst isn’t sitting across the table from the child,” says [Steve] Muller [executive director of the Homestead].  ”And we don’t understand that when other insurance companies pay for that service.”

...

Wellmark doesn`t lose money by paying the claims because the state is self-insured, the insurance company is just the administrator for the state.

Proposed Federal Program for Tracking Devices

From a press release by Senator Charles Schumer (D-NY):

U.S. Senator Charles E. Schumer today called for the Department of Justice (DOJ) to create and fund a program to provide voluntary tracking devices for children who have Autism or other developmental disorders in which “bolting” from parents or caregivers is common; the voluntary program would only be for parents who choose to use the devices. This month Avonte Oquendo bolted from a school in Queens and, four weeks later, he is still missing. The federal government already has a program to track seniors with Alzheimer’s, and Schumer said that this program should be extended to include children with Autism and other disorders. Schumer stressed that the program would be totally voluntary for parents, would be run by the police department or other local law enforcement, and would also provide funding for training of individuals on how to use and maintain these devices. Parents, schools, and law enforcement would all have to choose to participate. Massachusetts already has a successful program to help locate children with Autism that wander from their safe place.

“The sights and sounds of cities, schools and other busy places can be over-stimulating and distracting for children and teens with Autism, often leading to wandering as a way to escape. Voluntary tracking devices will help our teachers and parents in the event that the child runs away and, God forbid, goes missing,” said Schumer. “DOJ already funds these devices for individuals with Alzheimer’s and they should do the same for children with Autism Spectrum Disorder. Funding this program will help put school systems and parents of children and teens with Autism at ease knowing where their children are."
 

Another Chance for the Disability Rights Treaty?

Disability Scoop reports:

The U.S. Senate is gearing up to reconsider an international disability rights treaty that was rejected by the body on its first go-around last year.

The Senate’s Foreign Relations Committee is scheduled to take up the United Nations Convention on the Rights of Persons with Disabilities at a hearing this coming Tuesday. It will mark the first time that lawmakers will consider ratifying the treaty since it was defeated in a vote last December that fell largely across party lines.

The convention calls for greater community access and a better standard of living for people with disabilities worldwide.

Ahead of the hearing, Vice President Joe Biden rallied supporters Friday, meeting with a group of disability advocates at The White House to discuss the administration’s backing of the treaty.

Meanwhile, disability advocacy groups are urging their members to attend Tuesday’s hearing and to lobby members of the Senate committee. A broad coalition of over 700 disability, civil rights, faith, business and veterans organizations favor ratification.

The path forward, however, is anything but certain.

At USA Today, Senators John McCain and Robert Menendez write:

Assuring basic human rights for the disabled around the world is vitally important to the American people. Nearly 58 million Americans live with a disability, including 5.5 million military veterans. Global accessibility standards — which would be encouraged by the disabilities treaty — are essential for veterans to safely travel, study and work abroad. That is why the most respected veterans organizations in America — including the Veterans of Foreign Wars, the American Legion and the Wounded Warrior Project — support the treaty's ratification. Indeed, the foremost champion of this treaty is former senator Bob Dole, who was seriously wounded fighting fascism in the mountains of Italy during World War II and went on to become among the nation's greatest advocates for people with disabilities.

Worldwide, a billion people live with a disability, 80% of whom are in the developing world. In too many places, those with disabilities are housed in institutions separate from their families, without access to the outside world. In some countries, the disabled are denied the most basic rights such as a birth certificate or a name.

Special Education Disputes in an Affluent County

Montgomery County is a wealthy Maryland suburb just north of Washington, DC.  The Washington Post reports:

“I’m proud of our special education department, and I know they work hard,” said Board of Education member Rebecca Smondrowski, who asked for the external audit. “But there are things that need to be seriously looked at.”

Smondrowski, the parent of a child with autism, said Montgomery parents often complain to her about how difficult it is to obtain appropriate special education services for their children. Frustrated families then turn to lawyers for help.

Montgomery parents are more litigious than those from any other school system in Maryland and Virginia when it comes to special education cases, according to data from both state departments of education. Montgomery is home to about 12 percent of Maryland’s disabled students but accounted for about half the state’s special education disputes from 2010 to 2012. The county, with nearly 40 cases, had more special education due-process hearings that went to a judge for resolution than all Virginia school systems combined.

But just because the county has more hearings than other school system in Maryland doesn’t necessarily mean that there are disproportionate issues with the quality of county services, said Gwendolyn J. Mason, director of the Department of Special Education Services for Montgomery schools.

“When you think about Montgomery County, you think about a community of parents that do have access to resources,” Mason said. “They are informed parents who may be attorneys themselves or have the means to secure some of the region’s or the nation’s best attorneys to represent families.”

[emphasis added]

Cigna Class Action

Top Class Actions reports:

A Pennsylvania federal judge gave preliminary approval to a $2.4 million class action settlement that would resolve a dispute between Cigna Corp. and a nationwide class that accused the company of improperly denying benefits for some types of autism spectrum disorder treatment.

On Oct. 31, U.S. District Judge Juan R. Sanchez approved the proposed class action settlement, which would provide compensation to current and former Cigna insurance policyholders who claim that, starting in Nov. 2004, they were denied benefits for their children’s autism treatments that had been deemed by Cigna to be “experimental, investigational or unproven.” Class Members will be able to submit claims for reimbursement for the treatment that was denied by Cigna.

Plaintiff Kristopher Churchill initially filed the class action lawsuit in 2010, alleging that Cigna has a policy of classifying Applied Behavior Analysis (ABA) as an experimental autism treatment and does not provide insurance coverage for the treatment. Churchill argues that ABA is a well-recognized and scientifically valid form of treatment for children with autism. It is backed by the U.S. Surgeon General and the National Institute of Mental Health. When the class action lawsuit was filed, 26 states, including Pennsylvania, mandated insurance coverage for ABA treatment.
...

The Cigna ABA Denial Class Action Lawsuit is Churchill, et al. v. Cigna Corp., et al., Case No. 2:10-cv-06911, in the U.S. District Court for the Eastern District of Pennsylvania.

A Kid with Autism and a Drug Sting

Encounters between police and ASD people can go terribly wrong. The Huffington Post reports:

An undercover police officer tricked a teenager with autism into buying pot for him, a lawsuit filed by the boy's parents alleges.

The 17-year-old, who isn't named in the lawsuit, was arrested with 21 other high school students on drug-dealing charges as part of a sting operation last December at Chaparral High School in Temecula, Calif. His parents, Catherine and Doug Snodgrass, on Wednesday announced a lawsuit in state Superior Court that seeks unspecified damages from the Temecula Valley School District, alleging negligence and intentional infliction of emotional distress.

"Certain parts of my son have been damaged in ways that I think will be permanent," Doug Snodgrass told The Huffington Post.

The LA Weekly adds detail:

The suit, obtained by the Weekly, was being filed in Riverside County Superior Court.

His parents have said that the officer, part of the Riverside County Special Investigations Task Force, sent Snodgrass more than 60 text messages in an effort to woo his friendship and get him to provide marijuana.

They say Snodgrass was aiming to please when he found a homeless guy who gave him a joint. Incredulously, they say, it wasn't enough for the cop, and the teen found him $20 worth, only to be arrested.

The suit says the cop was so obvious to the "nondisabled" kids on campus that they called him Deputy Dan. The suit describes Snodgrass as a ...

... new vulnerable, naive, socially deficient, autistic student who had no friends and who did not have the ability to appropriately process, assess or navigate through such a difficult school situation into which he was recklessly/negligently and/or intentionally placed by Defendants ... 

In May, ABC reported:

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