Surrendering Kids to the State

Some families of autistic children are leaving Utah.  Others are taking drastic measures. The Salt Lake Tribune profiles ASD teen Garrett Lines, whose mother turned him over to state custody.

There was little progress in Garrett’s ability to learn "frustration tolerance and self-soothing skills," the DCFS report to the judge said, recommending Garrett be taken into state custody and enter residential treatment.

"Alternatives were explored through Nikki’s insurance plan to avoid the need for Garrett to be placed into state custody," the court report said. "Based upon his primary Autism Spectrum Disorder diagnosis, Garrett’s insurance provider will not authorize a higher level of care beyond crisis care stabilization and outpatient therapy."

State custody, the report pointed out, would make Garrett eligible for Medicaid, which covers more extensive therapy than private insurance typically allows.

"In this valley, Medicaid is the window for accessing many of the services that are in place for kids and adults who have developmental disabilities, autism included," said Deborah Bilder, an assistant professor at the University of Utah’s department of psychiatry, who specializes in autism.

"If an individual does not meet criteria for Medicaid, typically because of their parents’ income," she said, "it really restricts the services they can access unless their family is wealthy enough to afford expensive [behavior] therapy."
...

Peter Bell, an executive vice president at the national group Autism Speaks, said he isn’t surprised that parents of autistic children in Utah can become desperate enough to turn their son or daughter over to the child welfare system. That’s why the advocacy organization continues to fight for insurance mandates, he said.

"The way you prevent it from happening is you help families get access to the treatment their children need and deserve," he said, adding that many children who receive help early may be able to become taxpayers later.

Restraint and Seclusion in Columbus, Ohio

A number of posts have dealt with restraint and seclusion.  The Columbus Dispatch has run a series on incidents in Ohio.  The Dispatch reports on the most recent development:

The Columbus school district has used its seclusion rooms — some as small as a closet, some reeking of urine or covered in spit — to punish children with special needs, a state investigation has found.

Investigators also found that some city schools continue to use a type of physical restraint so dangerous that it’s banned in Ohio because it restricts breathing and can kill children. Staff members aren’t properly trained, the investigation found, and though district policy says the rooms are only for “crisis situations,” they’re often used to punish students who are noncompliant or disrespectful.

Some parents thought their special-needs children were getting therapy when they actually were spending time in seclusion rooms.

The investigation, conducted by the Ohio Legal Rights Service, a state agency that works to protect people with disabilities, began in December 2011 when the mother of an autistic boy complained that he was traumatized inside a room at Eastmoor Academy. He spent hours at a time there, where he once took off his clothes, lay in his own urine, and developed a staph infection. He was sent there often for minor infractions, such as refusing to sit down or asking for more food at lunch.

In Columbus, WCMH reports:

 

Parents with Disabilities

A release from the National Council on Disability:

On Thursday, September 27, the National Council on Disability (NCD), an independent federal agency, released “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children” -- a groundbreaking policy study, infused with real life stories of parents with disabilities, to provide a comprehensive overview of factors that support and obstruct Americans with all kinds of disabilities from exercising their fundamental right to begin and maintain families.

“Twenty-two years after passage of the Americans with Disabilities Act with an increasing number of people with disabilities taking advantage of increased protections to receive an education and go to work, parents with disabilities continue to be the only distinct community that have to fight to retains – and sometimes gain – custody of their own children without cause,” said NCD Council Member, Ari Ne’eman. “Currently, the U.S. legal system is not protecting the rights of parents with disabilities and their children. Two-thirds of state child welfare laws allow courts to determine a parent is unfit solely on the basis of a parent’s disability. In fact, every state allows disability as a consideration when determining the best interest of a child in family or dependency court. Whether actions are taken at the state or federal level—as an amendment or a new law—the need to correct this unfair bias could not be more urgent or clear.”

At several points, the report specifically discusses autism:

• "Discrimination by legal authorities and in child custody proceedings against parents with emerging disabilities is common as well. For example, as improved diagnosis and expanding diagnostic criteria have enhanced identification of children and adults on the autism spectrum, discrimination against parents diagnosed as autistic has emerged as a serious and ongoing systemic problem. As our society recognizes autism and other newly identified disabilities in a greater percentage of the next generation, the percentage of the American public susceptible to discrimination will increase. Parents who belong to these groups will experience the same abuses of their civil rights that parents with psychiatric disabilities currently experience; notably, status-based removals and deprivation of due process protections such as reunification services" (p. 15 of PDF).
• The report tells the story of Lorena, an ASD woman who had to put her children in foster care -- and has been unable to get them back (pp. 107-108).
• "Another example of the use of persistent social stereotypes and prejudicial assumptions can be found in discussions regarding parents on the autism spectrum. These parents are subject to many of the same unfounded stereotypes, claiming incapability to parent or risk of violence, which parents with intellectual and psychiatric disabilities encounter. Additionally, parents on the autism spectrum are often presented as uncaring or lacking empathy toward their children or spouses.539 Despite research showing these claims to be inaccurate, they persist in guidance provided to family law professionals regarding autism and Asperger’s syndrome (a type of autism).540 For example, a 2003 article by a family law professional made the case that in high-conflict divorces in which one party has a diagnosis of Asperger’s, the fault should be presumed to lie predominantly with the autistic parent, even if evidence suggests otherwise.541 The long-term consequences of these stereotypes are significant—some parents who are on the autism spectrum have said that fear of discrimination in child custody proceedings keeps them from leaving relationships with abusive partners.542"
• 539. Melanie Yergeau, “Circle Wars: Reshaping the Typical Autism Essay,” Disability Studies Quarterly 30(1) (2010), http://dsq-sds.org/article/view/1063/1222. 
• 540. Kimberly Rogers et al., “Who Cares? Revisiting Empathy in Asperger Syndrome,” Journal of Autism and Developmental Disabilities 37 (2007): 709–715, http://www.cog.psy.ruhr-uni-bochum.de/papers/2007/Rogers %282007 %29_JAutismDevDisord.pdf; Sheila Jennings Linehan and Jan Schloss, “Who’s Minding the Children? Child Contact and the Neurologically Impaired Parent,” Journal of International Family Law 4 (2003): 205–209, http://www.familymattersassociates.ca/ images/WhosMindingtheChildrenInternationalFamilyLaw.pdf.
• 541. Id.; Sheila K. Jennings, “High Conflict and Asperger’s Syndrome,” Mediate.com (2003), http://web.archive.org/web/20100111025800/ http://www.mediate.com/articles/linehan_s1.cfm#bio.
• 542. Autism Self Advocacy Network, “Cassandra’s Impact on Autistic Victims of Domestic Violence” (2009), http://autisticadvocacy.org/2009/05/cassandras-impact-on-autistic-victims-of-domestic-violence.

Missouri Nails Aetna

Previous posts have discussed the insurance mandate in Missouri. Yesterday, the Missouri Department of Insurance issued this release:

State insurance regulators say one of the nation's largest health insurance companies has for years been violating Missouri law in the health plans it offers to employers. Insurance Director John M. Huff has announced a settlement with Aetna Life Insurance Company related to its coverage of health benefits required by Missouri law, including autism, contraception and elective abortion.

In the settlement, Aetna admits to numerous violations of Missouri law, including issuing health insurance policies that:

Excluded coverage for autism spectrum disorders, in violation of Missouri's landmark autism insurance law signed by Gov. Nixon in 2010;
...

Under the settlement, Aetna will:

Stop issuing health insurance policies that violate Missouri law;

Pay a $1.5 million penalty, the largest in Missouri history for insurance law violations;

Notify customers that they were entitled to coverage for treatment of autism and accept claims for treatments received since the law went into effect. Aetna will pay claims with nine percent interest; and

Donate $250,000 to a Missouri nonprofit organization specializing in the care and treatment of autism spectrum disorders.

Aetna is Missouri's sixth largest health insurance company, with premium sales of $340 million in 2011.

Consumers with complaints or questions about insurance claims or policy provisions can call the Insurance Consumer Hotline at 800-726-7390 or file a complaint at insurance.mo.gov.

Barriers to Employment

At the Huffington Post, Christina Wilkie looks at vocational training and employment.  Employers are grappling with basic questions about hiring ASD people.

As Matthew Koenig, the young man in Minnesota, put it, "the conveyor belt of traditional employment puts you at a huge disadvantage with high-functioning autism, because you talk the way you do, and that's an automatic strike one." [emphasis added]

Under the Americans with Disabilities Act, it is illegal to discriminate against qualified job applicants because they have autism, but experts say widespread discrimination continues.

"They still do it. They'll just find another reason not to hire the person [with autism]," said an autism advocate, one of a half-dozen activists and autism experts who spoke to HuffPost about the slow pace of integrating people with autism into the white-collar workforce. None were willing to speak about employment barriers on the record, however, citing the sensitive nature of the subject. Employers were equally reluctant to be identified as having hired people with ASDs for white-collar jobs, noting issues of employee privacy and potential legal liability.

First, employers worry that they don't know enough about autism in adults to wade into the community, lest they make a mistake. Two people also said some employers don't know how to discuss job expectations, performance issues and potential limitations comfortably and respectfully with employees who have autism.

Second, some white-collar employers expressed hesitation about the administrative steps in providing "reasonable accommodation" for someone with autism, a requirement under the Americans with Disabilities Act.

One such accommodation in particular was cited more than once as a source of frustration: autism-related "job coaches." People with autism often need more help adjusting to new jobs and responsibilities than neurotypical workers do, and the coaches help them navigate new workplaces and learn their tasks.

Coaches are typically paid for by state employment agencies, not the employers themselves. But in interviews with HuffPost, autism advocates relayed complaints they had received that job coaches were "disruptive and didn't fit in with the rest of the staff" and "didn't know their way around the office." In one situation, an employer said, "the coach just came in and did the guy's job for him, while he sat there."

Pennsylvania Co-Pay

The Philadelphia Inquirer reports:

A move by the state Department of Public Welfare to require co-payments from families now receiving free services for children with autism and related disorders has touched off protests from parents who say they cannot afford hundreds of dollars a month for the specialized care.

At a rally Tuesday, several dozen parents, joined by Democratic legislators, objected to a decision to begin charging co-pays for about 48,000 children who now receive the care.

Under the plan, which takes effect Monday, families earning more than about $45,000 a year will begin paying from $1 to $3 in co-pays per service, according to the department.

The services in question mainly include home visits for behavioral therapy that many families say is crucial for children with autism and related conditions.

Advocates and parents said the fees would force some families to choose between paying for therapy and, say, making a mortgage payment.

College Students with ASD

In the last of a three-part series, the Ventura County Star looks at the growing number of people with ASD who are going to college:

Around the nation, their numbers are growing at state universities, private colleges and community colleges. Locally, at least 50 have registered this year at Ventura College, 18 at CSU Channel Islands and 10 at CLU.

Total numbers are unknown because the only figures come from college offices where disabled students can register for assistance. But those enrollments are easily double what they were five years ago, and officials believe many more are on campus who don't disclose they have autism or Asperger syndrome, which is included on the spectrum of autism disorders. Some consider Asperger's a separate disorder, while others believe it's high-functioning autism.

The trend has spawned books for students and parents, and business for private coaches who advise autistic students on how to navigate college life. Rutgers University, the Rochester Institute of Technology and CSU Channel Islands, among others, have developed special programs to help these students succeed.

It's a dramatic change from the 1960s, when many autistic people were more likely to be locked in institutions in California. The college trend is driven not only by the growing number of diagnosed people, but by early intervention programs, educators said.

"Behavioral therapy at an early age has really opened doors," said Ventura College teacher Steve Turner, who has worked with autistic people in various settings since the 1980s.

Medications for Teens and Young Adults

In Pediatrics, Dwayne Dove and colleagues look at the literature on medications.  As with so many other aspects of the issue, our knowledge is extremely limited.

BACKGROUND AND OBJECTIVE: Although many treatments have been studied in children with autism spectrum disorders (ASDs), less attention has focused on interventions that may be helpful in adolescents and young adults with ASD. The goal of this study was to systematically review evidence regarding medication treatments for individuals between the ages of 13 and 30 years with ASD.

METHODS: The Medline, PsycINFO, and ERIC databases were searched (1980–December 2011), as were reference lists of included articles. Two investigators independently assessed studies against predetermined inclusion/exclusion criteria. Two investigators independently extracted data regarding participant and intervention characteristics, assessment techniques, and outcomes and assigned overall quality and strength of evidence ratings on the basis of predetermined criteria.

RESULTS: Eight studies of medications were identified that focused on 13- to 30-year-olds with ASD; 4 of the studies were of fair quality. The strength of evidence was insufficient for all outcomes associated with medications tested in this population; however, the 2 available studies of the atypical antipsychotic medication risperidone in this age range were consistent with the moderate evidence in children with ASD for treating problem behavior, including aggression, and high strength of evidence for adverse events, including sedation and weight gain.

CONCLUSIONS: There is a marked lack of data on use of medication treatments for adolescents and young adults with ASD. The evidence on the use of risperidone in this age range is insufficient when considered alone but is consistent with the data in the population of children with ASD.

Employment: A Case Study

The Ventura County Star looks at employment issues, focusing on a Camarillo man named Chris Valdez:

Valdez and his parents want more than the sheltered workshops of the past, as do most families in the new generation of autism.

"They want to be out in the community, doing volunteer work and hopefully get a job," said Fred Robinson, CEO of Arc of Ventura County, a nonprofit that has phased out its workshops.

"That's what we're trying to transition our services to reflect, and that's going to take time. It's going to be several years in the making."

Job specialists and advocates blame the high unemployment rates on a spotty transition between school and work, poor worker preparation and some employers' fear of autism.
Communication difficulties, behavioral issues and the tough labor market also are cited.

They also say it's time to speed up change.

With estimates showing as many as 500,000 on the autism spectrum will become adults in the next 10 years, a recent study published by the American Academy of Pediatrics showed they face heavy odds.

In the first six years after high school, 55 percent had held paid jobs, the lowest rate of any disabled group examined in the study. The authors found people with mental retardation were more likely to be employed, at nearly 70 percent

In another study, Julie Lounds Taylor and colleagues reviewed the literature on vocational programs.   As the abstract suggests, uncertainty prevails:

BACKGROUND AND OBJECTIVE: Many individuals with autism spectrum disorders (ASDs) are approaching adolescence and young adulthood; interventions to assist these individuals with vocational skills are not well understood. This study systematically reviewed evidence regarding vocational interventions for individuals with ASD between the ages of 13 and 30 years.

METHODS: The Medline, PsycINFO, and ERIC databases (1980–December 2011) and reference lists of included articles were searched. Two reviewers independently assessed each study against predetermined inclusion/exclusion criteria. Two reviewers independently extracted data regarding participant and intervention characteristics, assessment techniques, and outcomes, and assigned overall quality and strength of evidence ratings based on predetermined criteria.

RESULTS: Five studies were identified; all were of poor quality and all focused on on-the-job supports as the employment/vocational intervention. Short-term studies reported that supported employment was associated with improvements in quality of life (1 study), ASD symptoms (1 study), and cognitive functioning (1 study). Three studies reported that interventions increased rates of employment for young adults with ASD.

CONCLUSIONS: Few studies have been conducted to assess vocational interventions for adolescents and young adults with ASD. As such, there is very little evidence available for specific vocational treatment approaches as individuals transition to adulthood. All studies of vocational approaches were of poor quality, which may reflect the recent emergence of this area of research. Individual studies suggest that vocational programs may increase employment success for some; however, our ability to understand the overall benefit of supported employment programs is limited given the existing research.

The Wave and the Cliff

The Ventura County Star looks at the coming wave of adults with an ASD diagnosis -- people heading for the IDEA funding cliff (yes, I know it's a mixed metaphor):

The caseload is dominated by people under 22, the age when they no longer qualify for special education in public schools. Over the next three years, more than 100 Ventura County youths with autism will hit that threshold. Thousands more are in the pipeline around the state.

Advocate Rick Rollens said the state is unprepared for helping move this wave of young people to adulthood.

"It's woefully behind where it should be," said Rollens, who lobbies for an association of 21 regional centers providing housing, transportation, treatment, recreation and job counseling to adults with developmental disabilities. They have sustained almost $1 billion in state budget cuts over the past three years.

"We need to be building residential programs, day programs and employment opportunities to deal with and care for this population," said Rollens, who has a 21-year-old autistic son.

Planning is beginning for the shift in cooperation with families, clients and agencies that provide services, said Frank Bush, who directs services for the regional center serving Ventura County.

He says the state, including colleges and technical schools, still has some distance to go.

Fred Robinson, CEO of Arc of Ventura County, which serves autistic adults, says that's a scary proposition at a time when the state is broke.

 

Restraint and Seclusion: Updates

The Baltimore Sun reports:

Howard County school officials are investigating an incident involving an 11-year-old autistic boy who was handcuffed by police officers on a school bus after he allegedly bit several adults and students.

The child, who does not speak and has limited social skills, according to his mother, was being transported from the Kennedy Krieger Institute in Baltimore, which accepts students whose severe learning disabilities require specialized education not provided by public school systems.

Perhaps the most notorious recent incident is the "therapy bag" case in Kentucky. AP reports:

Some Kentucky school superintendents are expressing concerns about a proposed state regulation on the use of student restraint.

Pendleton County Schools Superintendent Anthony Strong told The Kentucky Enquirer (http://bit.ly/RIsuqJ) that the proposal is too vague. He says employee expectations need to be defined better.

"There appears to be subjectivity as to when the staff member should intervene," said Strong. "There is a huge question as to where the line is."

Kentucky Department of Education spokeswoman Lisa Gross says the proposal is still in draft form and wording could be changed. A public hearing on the issue will be held Tuesday in Frankfort.

The issue came to the forefront late last year after state officials received three complaints about students being restrained or confined alone in small rooms. The department cited two schools for violating the rights of disabled students who were subjected to such treatment.

Read more here: http://www.kentucky.com/2012/09/21/2345175/superintendents-concerned-about.html#storylink=cpy

Read more here: http://www.kentucky.com/2012/09/21/2345175/superintendents-concerned-about.html#storylink=cpy

Read more here: http://www.kentucky.com/2012/09/21/2345175/superintendents-concerned-about.html#storylink=cpy

In Massachusetts, the Lexington Patch reports on Robert Ernst, a 17-year-old student with ASD:

According to him and his mother, Wendy Ernst, Robert was put on an individualized education program (IEP) since pre-school, but wasn’t diagnosed with Asperger’s until fifth grade. During the intervening years is when, according to the family, Robert was shut in a seclusion room and physically restrained on several occasions by teachers and aids at the Fiske and Estabrook elementary schools.

The Ernst family decided to share Robert’s story last week, after allegations of the mistreatment of special needs students and use of seclusion rooms in the Lexington Public Schools were thrust into the spotlight by a former Lexington resident’s op-ed in the New York Times. Going public is something family members said they wouldn’t have done otherwise, but which they hope will bring awareness to the community and closure to the family.

“I hope this starts with people becoming aware that these things can happen, and stop wearing those rose-colored glasses,” said Robert, “Because these things have happened in our town.”
Allegations of abuse within the special education system in the Lexington Public Schools came to the fore last week when former resident Bill Lichtenstein shared the story of his daughter’s “seclusion room” experiences while a kindergartner at Fiske during the 2005-2006 school year.

A second story emerged during a School Committee meeting last Tuesday, and the following daydistrict administrators asked the state Department of Children and Families to conduct an investigation into those cases. The Ernst family has asked for Robert’s case to be included, but as of Wednesday evening had not definitively heard back about its inclusion.

In Wilmington, NC, the StarNews reports:

New Hanover County Schools' use of seclusion rooms to deal with students' aggressive behavior does not violate North Carolina law, according to Rick Holliday, assistant superintendent for support services.

On Aug. 27, the U.S. Department of Education Office for Civil Rights (OCR) completed an investigation into the district's seclusion rooms that was opened in February. The inquiry found that the district had no compliance issues with N.C.'s Greenblatt Act, which gives schools strategies, such as seclusion rooms, to deal with students' aggressive behavior.

The paper then followed up:

Sara Reider, mother of two special-needs students in New Hanover County, spoke to the board during the public comment section at Tuesday's meeting. She said that while OCR found no violations against one student, it did find larger violations during the course of its investigation.

On Aug. 27, OCR completed an investigation into the district's seclusion rooms that was opened in February. The inquiry found that the district had no compliance issues with N.C.'s Greenblatt Act, which gives schools strategies, such as seclusion rooms, to deal with students' aggressive behavior.

The investigation stemmed from a two-fold complaint filed in January by parents of a 5-year-old special education student. The complaint alleged that the student was being placed in a seclusion room and forced to stay inside and that the district was only using its seclusion rooms for students with disabilities.

Reider cited what she said was OCR's report on the investigation during her comments to the board. A StarNews request for the official report through the Office for Civil Rights is pending.

Transplant Update

Previous posts have noted that people with ASD and other disabilities have added difficulty in getting transplants. From the Autistic Self-Advocacy Network newsletter:

Last week, representatives of the National Disability Leadership Alliance (NDLA) met with senior staff at the HHS Division on Transplantation to discuss organ procurement and transplantation policies and how they impact people with disabilities of all kinds. NDLA, a national coalition of organizations run by and for people with disabilities, was represented by ASAN President Ari Ne’eman, National Council on Independent Living (NCIL) Kelly Buckland and Not Dead Yet President Diane Coleman. Among the issues discussed were ensuring meaningful consent in organ procurement efforts and addressing discrimination against people with disabilities in accessing organ transplants. ASAN staff raised the recent cases of Amelia Rivera and Paul Corby, youth with developmental disabilities denied access to transplant waiting lists, and urged HHS to issue strong and unequivocal legal guidance to prevent such acts of discrimination.

100,000

This blog just had its 100,000th page view.

Thanks.

JJP

One Family Wins Insurance Coverage in Texas

Last year, KTVT in Dallas-Fort Worth reported on the difficulty of getting insurance coverage for ABA in Texas.  Now, the station does a followup report:



The report discusses ABA:

“It really had to become more mainstream,” says Dr. Joyce Mauk President, CEO and Medical Director of Child Study Center in Fort Worth. The Child Study Center treats children with autism.

“I think the insurance companies are going to be treating Applied Behavior Analysis the same way we treat rehabilitative therapy for a variety of other brain related issues,” explains Dr. Mauk “If we had a child who had an acquired brain injury we would prescribe therapies known to be effective and we would continue them as long as they were effective and when they weren’t we would change to another mode and I think that’s the route Applied Behavior Analysis will be going as well.”

The Neumans struggled with their insurance company for years. Now Hayden’s therapy is covered and his parents aren’t fighting their insurance company every day. Instead, they’re focusing on their son who has reached big milestones. “We try to celebrate when he has any kind of a small victory,” says Melissa smiling big “We are really in a great spot right now.”

Autism Votes Video

A new video from Autism Votes:

Shelley Hendrix, director of grassroots advocacy for Autism Speaks, explains why the subject is political:

We now know that in 2000, 1 in every 88 babies born in America that year went on to develop an autism spectrum disorder. And yet, our country spent barely $50 million on research for autism that year. Our community pushed the United States Congress and with heavy lifting, the federal government now appropriates close to $235 million per year to the National Institutes of Health, the Centers for Disease Control, the Department of Health and Human Services, and the Department of Defense for research and services related to autism.

Prior to 2007, just one state required health insurance companies to provide access to the healthcare treatments and therapies that people with autism need. These are treatments and therapies prescribed by medical professionals, but almost all health policies in the United States specifically excluded the treatment of autism. With hard work and dedication of volunteers all over the nation, 32 states have now improved healthcare access for individuals with autism.

 These changes came about with the passage of new laws. Autism IS political, whether you realize it, or not.

Why? Because individuals with autism obtain assistance from a variety of public agencies at the federal, state and local level. Because our children receive special education services which are governed by our local school boards and each state’s Department of Education. Because many of our children and adults receive services through Medicaid. Because legal reform is required to right the inequities our community has consistently faced.

Service Animal or Comfort Animal?

In Texas, a George West Independent School District has denied ASD high school senior Colleen Molohon the use of a dog to help her on campus. The Corpus Christi Caller reports:

The girl's mother, Donna Osborn, said the dog, Chili, is a service dog that helps Molohon with specific tasks, and should be allowed under the Americans with Disabilities Act. But she said the school committee determined Chili is nothing more than a "comfort animal" — a dog that helps a person feel better emotionally but does not have training to assist with specific tasks related to a disability.

Comfort animals aren't allowed under district policy.

In March 2011, the U.S. Department of Justice changed its regulations to clarify that comfort animals don't meet the definition of service animals under the Americans with Disabilities Act. That means governmental entities, including school districts, aren't necessarily required by law to allow the animals on their premises.

But Osborn said Chili provides her daughter with much more than emotional support. She started using the dog, and the district allowed it, in ninth grade. But at the start of her junior year in 2011, in response to the new guidance from the Justice Department, the district changed its mind, Osborn said.

She believes the district is discriminating against her daughter because Chili meets the definition of a service dog.

An Argument for the ABLE Act

At the Autism Speaks blog, Sara Hart Weir, vice president for advocacy & affiliate relations with the National Down Syndrome Society, offers a guest post about the ABLE Act:

Each year, Steve and Catherine Beck put away money tax-free to save for their daughter Mariae’s college education, but the tax code restricts them from saving tax-free for their daughter Natalie, who happens to have Down syndrome. The National Down Syndrome Society (NDSS), along with 50 national organizations including Autism Speaks, the National Fragile X Foundation, The Arc, Special Olympics, and many others, think that's wrong and are supporting legislation to fix it – the Achieving a Better Life Experience (ABLE) Act (S. 1872/H.R. 3423).

Currently, families can save for their typical children's education through tax-advantaged 529 education savings accounts. Our ABLE Act would expand the use of 529 accounts to help cover disability-related expenses, enabling parents of children and adults with disabilities to save for their futures just like every other American.

Here’s how it works: the ABLE Act creates a new savings mechanism for people with disabilities under the current 529 savings plan. This account would allow individuals with disabilities and their families to save money to be used for education, medical and dental care, job training, housing, transportation and other expenses. Contributions to the account would grow tax-free and withdrawals for disability expenses would also be tax-free.

From a Friday release by House sponsor Ander Crenshaw (R-FL):

Support for passage of the Achieving a Better Life Experience Act (ABLE Act) reached its highest point ever this week - 207 U.S. House co-sponsors.

Together with 30 U.S. Senate co-sponsors and nearly 50 national, state, and local disability advocacy organizations, this group clearly understands the need to provide individuals with disabilities with tax-free savings accounts. But, we can’t let the momentum slow down.

There is no more time to waste in opening the door to economic peace of mind to 54 million individuals with disabilities across this nation. It’s a question of fairness and equality, and passage of this bill is long overdue.

Autism, Medicaid, and Health Care Spending

Previous posts have discussed the health problems of people on the spectrum, and the role of Medicaid in supporting treatment. At The Journal of Autism and Developmental Disorders, Li Wang and colleagues have an article titled "Healthcare Service Use and Costs for Autism Spectrum Disorder: A Comparison Between Medicaid and Private Insurance." Here is the abstract:

Healthcare costs and service use for autism spectrum disorder (ASD) were compared between Medicaid and private insurance, using 2003 insurance claims data in 24 states. In terms of costs and service use per child with ASD, Medicaid had higher total healthcare costs (22653vs 5,254), higher ASD-specific costs (7438vs 928), higher psychotropic medication costs(1468vs 875), more speech therapy visits (13.0 vs. 3.6 visits), more occupational/physical therapy visits (6.4 vs. 0.9 visits), and more behavior modification/social skills visits (3.8 vs. 1.1 visits) than private insurance (all p < 0.0001). In multivariate analysis, being enrolled in Medicaid had the largest effect on costs, after controlling for other variables. The findings emphasize the need for continued efforts to improve private insurance coverage of autism.

Autism "Charity" in Oregon

Scams plague the world of autism. Some involve shady providers. Some proffer quack cures.  Some rip off people who want to donate money to a worthy cause. The Oregonian reports:

A charity under investigation by the Oregon Department of Justice has continued to advertise for paid fundraisers in the Portland-Vancouver area four months after telling state prosecutors it was shutting down.

In June, saying Olympia-based Autism Awareness United appeared to have broken state laws, DOJ threatened legal action if the organization did not agree to stop raising money in Oregon. However, as of Friday, the group had not signed any agreement, and according to autism activists, has continued to raise money from Oregonians using paid fundraisers who set up tables outside supermarkets and other stores.

The state's investigation turned up receipts showing the nonprofit's debit card was used to pay for meals, cocktails, Chianti and other, unidentified expenses at a local casino. While not illegal, such expenses raise questions with charity oversight experts about a group's effectiveness. Meanwhile, Autism Awareness spent just 3 percent of its funds from late 2010 through early 2012 on direct assistance to needy families or autism-related agencies, according to documents obtained by The Oregonian under public records law.

Technology, Customized Learning, and Special Needs Students

Previous posts have discussed the use of computer technology in helping ASD people. Tom Vander Ark writes at Education Week:

A Fordham report suggests the nation can save $10 billion if districts just budget the same way. But the report didn't even consider the digital learning revolution occurring. Continued progress from primary research combined with the potential of customized learning appears to have transformative potential for special education. 

Leading venture funds have launched funds focused on iPad apps for entertainment. Given the identified potential to meet special needs it may be time for a Special Ed App Fund. .. A fund that combined philanthropic and venture capital could be just the bill. If foundations and donors extracted some of the risk, I think we'd see more entrepreneurs and investors turn their attention to meeting special needs. Heading in that direction, the Department's research arm, IES developed the Small Business Innovation Research (SBIR) Program. Program Manager Edward Metz pointed me to several examples:

• iPrompt from Handhold Adaptive for students with ASD
• Stories in Motion from 3C Institute for high functioning ASD

...

Feel Electric teaches kids how to modulate their emotions with a DARPA-funded version for military families.

...
Federal special education policy may also provide a force for digital education in public education's mainstream, argues Dean Millot, Managing Partner for K-12 at the investment consulting firm Good Harbor Partners. Under the Response to Intervention option, school districts are incentivized to meet the needs of special education students with the same digital technologies that offer mainstream students individualized learning. By this means, the Individual Education Program mandated by law for special needs students could evolve to a standard of individualized learning for every student.

A Post-Natal Genetic Test?

World News Australia reports on a potential genetic test for children and babies (not a prenatal test):



See here and here for a discussion of potential problems with genetic testing.

Autism in Russia

Previous posts have looked at autism overseas. RIA Novosti reports on Russia:

Yet despite the importing of such foreign techniques [ABA], which some experts say have slowly but surely begun to take root in Russia, few solutions exist for the crippling stereotypes and intolerance many sufferers and families face. If debates in the West are already tackling the ethical issue of predicting autism before birth, in Russia even the idea of autism is still nearly taboo.

Svetlana Budnitskaya, who as a senior manager for family and child affairs at the Charitable Fund “Joint” works with autistic children, recalls an incident during a recent visit to Kaliningrad, when a mother expressed to Budnitskaya her “shame” after her autistic child acted out in public.

“Someone just called the police and said, ‘Get this kid out of here,’” she says. “That hit me hard, because society is so unprepared for this, for how to treat these people. And instead of the mother simply accepting the child, the mother becomes socially embarrassed.”

In another instance, a note sent from the Moscow Aquarium last April to teachers who tried to organize a visit with a group of autistic children read: “Refused. Visitors do not like to see the disabled – it disappoints them. It is unacceptable.”

Perhaps the most appropriate, if unsettling, indicator of Russia’s uneasiness with the disorder is the lack of official statistics that keep track of the number of affected children in Russia. If applying researchers’ estimates that between two and 20 cases of autism appear per 20,000 children, Russia may be home to around 200,000 autistic children, according to the St. Petersburg-based Fathers and Sons Fund.

Even more worrying, however, is the open prejudice encountered from the most unlikely sources, including government officials. Sergei Buyankin, a Moscow city official, made headlines last May when he reportedly said, “Hitler buried kids like this in the ground,” while speaking about a local private school, St. George’s, which caters to special needs children.

Vaccine Opt-Outs in California Private Schools

AP reports:

Parents who send their children to private schools in California are much more likely to opt out of immunizations than their public school counterparts, an Associated Press analysis has found, and not even the recent re-emergence of whooping cough has halted the downward trajectory of vaccinations among these students.

The state surveys all schools with at least 10 kindergartners to determine how many have all the recommended immunizations. The AP analyzed that data and found the percentage of children inprivate schools who forego some or all vaccinations is more than two times greater than in public schools.

More troubling to public health officials is that the rate of children entering private schools without all of their shots jumped by 10 percent last year, while the opt-out figures held steady in public schools for the first time since 2004.

...
Vaccination opt-out rates nationwide have been creeping up since the mid-2000s, spurred in part by the belief the battery of vaccinations routinely given to infants could lead to autism. Several major studies have discredited that idea.

Parents are allowed to forego vaccines for philosophical reasons in California and 19 other states. Of those, only Washington requires parents to consult with a physician. And, in California, there's no difference between private and public schools when it comes to what's required for parents to opt out — they simply sign a document. The state recommends that kindergarteners receive five vaccine progressions, including protections against Polio, Hepatitis B and Measles

Cameras in the Classroom

Previous posts have discussed abuse of special-needs kids in schools.  In some cases, there is video or audio evidence. ABC News reports on one response:

A grassroots movement to put cameras in classrooms, driven by the parents of special-needs students, is simmering across the country. It's a personal crusade for many of the parents who say their children have suffered abuse at the hands of teachers and classroom aides with unsatisfying consequences.

Parents in states such as Ohio, Texas, Michigan, New Jersey and Tennessee have taken to the Internet to promote their cause with petitions, videos, Facebook pages and letters to the president. Many of their children either cannot speak or have difficulty with verbal communication

An Incident in Sierra Madre: Update

Previous posts have described an incident in Sierra Madre, California.  On August 30, LA Weekly reported:

For the past two years, Tony Brandenburg -- lead singer of seminal Fullerton punk band The Adolescents -- and his wife have been caught in a struggle with their community school board and parents from Sierra Madre School in Sierra Madre (part of Pasadena Unified School District), whom they claim discriminated against their Autistic son.

On Tuesday night the Brandenburgs rallied several dozen friends and supporters together at the Pasadena School District's public board meeting, many holding signs and some in ski masks. They called for a censure of Board of Education Vice President Edward Honowitz, who they believe violated policy and conspired with other parents at their son's school, resulting in his removal from his first grade classroom last year, and again this term for second grade. Their son suffers from sensory processing disorder, a neurological problem associated with Autism, that results in confusion and distress in those afflicted when overstimulated.

Earlier this year the couple called, in vain, for an investigation of Honowitz, whom they also believe held secret meetings with parents of their son's classmates. They say he has also altered and withheld documents relating to their son's education, including a petition signed by other parents citing him as a classroom distraction and requesting his removal. The Brandenburgs allege that no one worked with them to learn about his disorder or how to deal with it, and that their son has been bullied by other kids at the urging of their parents and with the approval of Honowitz.

Harvard Does Not Cover Autism

As previous posts have noted, state insurance mandates do not apply to self-funded plans, which come under ERISA.  The Harvard Crimson offers one example:

In 2010, Governor Deval L. Patrick ’78 signed House Bill 4935 (An Act Relative to Insurance Coverage for Autism Spectrum Disorder), which required private health insurance plans to provide coverage of medically necessary autism therapies. The bill went into effect on January 1, 2011. Before this bill, the lack of coverage for autism therapies had been an enormous financial burden for families. More importantly, it meant that each individual that went untreated was losing precious time in which to make developmental gains. Denial of coverage has long been recognized as discriminatory to the special needs population and their families.32 states have enacted such legislation to combat insurance discrimination and meet the urgent needs of individuals and families profoundly affected by the challenges of living with autism.

However, at Harvard, the financial burden continues, along with parental grief that ones’ child is not getting the critical therapies needed to make progress in all areas of development. Due to an exemption in the state law, the families of Harvard employees continue to be excluded from coverage for much needed autism therapies. Under the Massachusetts law, self-funded plans, like Harvard's, are not required to provide medical coverage for autism treatments. Harvard employees and their families remain without access to the unlimited and intensive therapeutic and rehabilitative care (particularly Applied Behavioral Analysis) which has been deemed necessary by Harvard's very own medical researchers. Such services include training for parents and primary caregivers in order to help them manage their children's self-care skills, behavior, social skills, and communication. ABA is the most commonly prescribed therapy for individuals with autism, and, in addition to being endorsed by the medical community, it isrecognized as the most effective treatment by the Surgeon General, the National Research Council, and the American Academy of Pediatrics.

Community First

The Sacramento Business Journal reports:

California will be the first state in the nation to receive Medicaid dollars under the Affordable Care Act to provide home and community-based services for at-risk seniors and people with disabilities as an alternative to nursing home or other institutional settings. 

A new Community First Choice program established by federal health care reform provides a 6 percent increase in federal medical assistance for Medicaid enrollees who require an institutional level of care. 

California will get about $573 million in additional federal funds during the first two years of the program in an effort to encourage individuals to stay in their community rather than seek institutional care. A total of $258 million will be provided during the first year of the program, with $315 million to follow in the second year.

Scathing Critique of the "Inflammatory Disease" Hypothesis

 At the Philadelphia Inquirer, Michael Yudell offers a scathing critique of a new hypothesis about autism causation:

At quick glance, a recent opinion article in the New York Times by writer Moises Velasquez-Manoff, claiming that “perhaps one-third, and very likely more” of autism cases look like a brain-damaging inflammatory disease caused by a parasite deficiency that “begins in the womb,” offers interesting insight into the science of autism causation. Researchers around the world are hard at work trying to decipher the puzzle that is autism, and Velasquez-Manoff draws attention to some of their work.

But upon closer inspection the article’s claims about the causes of autism and its possible treatments and cures are not an accurate reflection of the best state of the science, may generate widespread misinformation among a public impatient for answers, and should caution us about how to present ideas about a disorder that has witnessed the communication of so much bad information. (For me, this is more than just another blog post. The history of autism, and the impact of poor communication about the disorder to the public, is one of my research interests and the subject of a book that is in the works. A paper I led examining the challenges of communicating autism risk was just published online ahead of print in the journal Autism.)

If the commentary had simply claimed that research is examining the possibility that autism is a brain-damaging inflammatory disease and that it might be caused by a changing microbial environment to which humans are poorly adapted, there would be little controversy here. There is research around the world examining these very issues. But Velasquez-Manoff, a journalist who has a new book out this week titled An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases, makes claims that are inaccurate and in some cases simply untrue, leaving readers of one of the most distinguished opinion sections in the world with a false impression of autism causation and a possible cure.

Read more: http://www.philly.com/philly/blogs/public_health/And-the-latest-cause-of-autism-is-----.html#ixzz25dkp2cI6
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Outcomes Research

The big question for young people on the spectrum -- as well as their families -- is:  "What happens in 10, 20, 30 years?"  Unfortunately, the literature on outcomes, especially long-term outcomes, is sparse. The journal Autism has an article by Natalie A Henninger and Julie Lounds Taylor, "Outcomes in Adults with Autism Spectrum Disorders: a Historical Perspective."  The abstract:

In this review, we examine the ways in which researchers have defined successful adult outcomes for individuals with autism spectrum disorders (ASDs) from the first systematic follow-up reports to the present day. The earliest outcome studies used vague and unreliable outcome criteria, and institutionalization was a common marker of poor outcomes. In the past decade, researchers have begun to standardize the measurement of adult outcomes with specific criteria based on friendships, employment, and living arrangements. Although nearly all of these studies have agreed that the majority of adults with ASD have poor outcomes, evolving concepts of what it means to be an adult could have an impact on outcomes measured. For example, some researchers have suggested that taking into account the person-environment fit could reveal a more optimistic picture of outcomes for these adults. Suggestions for future research are discussed.

The Prevalence of Bullying

Reuters reports:

Close to half of all teenagers with an autism spectrum disorder are bullied at school, says a survey of their parents.

The results, published Monday in the Archives of Pediatrics & Adolescent Medicine, suggest that rate is much higher than the estimated 11 percent of bullied kids in the general population.

Previous studies have found kids and teens who are bullied tend to be more depressed, lonely and anxious and do worse in school than those who aren't picked on, according to the researchers.

That means bullying could make things extra difficult for those with autism, who may already struggle more in school than other kids.

The researchers say the findings suggest schools should target their anti-bullying campaigns toward the more vulnerable populations, such as children with autism and attention deficit/hyperactivity disorder (ADHD).

Autism: Social Model and Medical Model

Is autism a disability or a difference?  A medical construct or a social construct? n the San Diego Law Review, Kevin M. Barry has an article titled "Gray Matters: Autism, Impairment, and the End of Binaries."  Here is the abstract:

First diagnosed by psychiatrist Leo Kanner in 1943, Autism has exploded into the public consciousness in recent years. From science to science fiction, academia to popular culture, Autism has captured the world’s attention and imagination. Autism has also ignited a fierce debate among stakeholders who seek to define its essence. Many parents of Autistic children regard Autism as a scourge and press for a cure. The Neurodiversity Movement, comprised mostly of Autistic adults, regards Autism as a different way of being worthy of respect and even celebration. The Autism war is well underway and, given Autism’s swelling ranks and proposed changes to the American Psychiatric Association’s Diagnostic and Statistical Manual in 2013, this war shows no signs of abating.

Notwithstanding its rise to prominence in recent years as something both terrifying and terrific, Autism remains understudied in legal scholarship. This Article situates the Autism war within the larger theoretical debate over the social construction of disability and impairment. This Article accepts the “social model” of disability’s claim that disability is socially constructed and rejects the “medical model” as a theoretical model altogether. But “disability” – socially constructed or not – does not explain the Autism war. “Impairment” is where the action is.

This Article argues that while impairments like Autism may refer to some biological pathology, they are in part socially constructed. Autism is constructed not just by medical researchers and clinicians who name and diagnose it, but also by those who are so named – Autistic people, themselves, many of whom define Autism as a different way of being. Autism may be both a (still unknown) biological pathology and, according to Autism’s “Neurodiversity Movement,” an experience. While this understanding of impairment cannot make peace between Autism's sides, it helps to explain how the sides are at odds and why they are likely to stay that way.

Another Walker for Autism

An earlier post described the long-distance walk of Troy Blevins, who made his trek to raise autism awareness.  As WDTV reports, William Cefalo of Brooklyn is doing something similar:

Pediatricians and Diagnosis

Previous posts have described the often-unhappy interactions between pediatricians and parents of ASD children.  In a letter to the Journal of Autism and Developmental Disorders, Amy Sudhinaraset and Alice Kuo write of a small-sample study:

For this interview series, 13 in depth interviews were conducted with a total of 3 fathers and 11 mothers who  were an average age of 44.7 years. The children consisted of 11 boys and 2 girls who at the time of  interview had an average age of 11.4 years. Transcripts were coded and analyzed using a qualitative analysis program to look for themes.

Of the 13 parent interviews conducted, all but 1 parent reported a negative experience when they approached their pediatrician with their concerns for their child’s development. [emphasis added] The average age that parents first suspected their child was not typical was 1.7 years, the average age of formal diagnosis was 4.4 years, resulting in a 2.7 year delay in diagnosis. The parent who had a positive experience had the earliest formal diagnosis at 17 months. Of the 13 parents who expressed concerns, 7 mentioned that their pediatrician did recognize some component of developmental delay in their child and 5 of them were referred to a specialized developmental service despite the fact that their pediatrician was unable to specifically recognize ASD.

Lisa Jo Rudy put the problem succinctly:  "Most pediatricians are not highly trained in picking up developmental red flags. And they see a lot of kids who have slight or brief delays and then develop normally. Parents, nannies and daycare or preschool providers, though, see your child every day. Where your pediatrican may see shyness or a mild delay, you may see a pattern."

Police and Autistic Adults

Previous posts have discussed encounters between ASD people and police, as well as other first responders. A release from Autism After 16:

When an autistic adult has a meltdown that family members can’t control, police officers are sometimes called to the scene. How the interaction progresses can be influenced by how well local police understand Autism Spectrum Disorders (ASDs) in general and the needs of their specific community members. Autism After 16 sheds light on this issue in an article called, “Well-Informed is Well-Armed: Easing Police Response to Domestic Incidents.” Written by Police Officer Jerry Turning, who has a son with autism, the article seeks to help families work with local police by providing information and education.

Turning, who has previously written for Autism After 16 on the subject of autism and wandering, is a police Lieutenant in a municipal police department and a certified police K9 Handler and Trainer. His son was diagnosed at 2 years old with autism. He sees a gap in understanding between families and the police and is committed to helping educate both sides of the equation.

“Just Google ‘police and autism’ and you will see page after page of tragic encounters between police and ASD individuals,” Turning says. “That’s simply unacceptable. I believe that many of these tragedies can be attributed to poor communication between the police and the autism community.”

But writing about these issues can be as complicated as the autism spectrum itself, and Turning hopes families will extrapolate from his insights to their own experiences. “Autism is a spectrum. Writing about it in general terms is difficult and sometimes frustrating. Many of the suggestions and examples I provide may not apply to your particular loved one's situation, abilities and challenges. My sincere hope is that everyone who reads my articles can find at least one or two tips that might help in some small way,” he notes.

Having a son with autism has taught Turning a great deal about the needs of this population. “I have found there is an enormous amount of ignorance and misunderstanding about autistic individuals and their families. That is my singular focus when I write: to reduce that ignorance and increase understanding … for my son.” What’s the single most important thing Turning wants police to understand about autistic people? “Challenges in expressive language and communication do not necessarily correlate with lack of intellect or inability to understand language.”

Autism After 16 is a website devoted to providing information and analysis of adult autism issues. Over 50 percent of its contributing writers are autistic adults, while many others are family members. Autism After 16 provides informational articles on accessing adult services, links to useful resources, and a library of videos to help teach independent living skills