I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
In Hanover, Pennsylvania, The Evening Sun profiles a family with three ASD children:
Despite their community-activist exteriors, Steve and Angela Brown are still struggling to navigate their way through the struggles that go along with raising children with autism. Starting with the 172-page Pennsylvania autism services guide, the one that Steve couldn't help but drag all around the house, finding any of the necessary services for their children is daunting.
The guide is supposed to help parents of autistic children apply for a range of services offered by the state government and was actually designed to make the process of applying for them easier and simpler. But despite its original intentions, the packet in its final form stretches to what could more fittingly be called a book and is filled with an alphabet soup of organizations and page after page of complicated instructions.
"You need someone to educate you on this," Steve said. "A typical parent can't just read this and understand it.
When the Browns wanted to apply for a state program, they needed to elicit the help of a caseworker just to walk them through the process, even with the guide,
Applying for federally funded programs can be just as difficult. The long list of acronyms and obscure terms that describe the personal aides available for autistic children through private insurance and Medicaid is likely to leave any parent bewildered.
Autistic children in Pennsylvania are eligible for a specialized therapist known as a TSS or Theraputic Staff Support. These are educational aides who work one-on-one with a child, both at home and at school. They are in charge of regulating a child's behavior and implementing steps on an individualized treatment plan. That treatment plan is created by a Behavioral Specialist Consultant or BSC, who has a higher level of education than a TSS.
Like everything else associated with autism, finding a cure is difficult. And complicated. And then difficult some more.
In order to have even a hope of finding a cure, scientists first need to figure what causes it, and before that, to get a better handle on exactly what it is.
This has proved to be a constant struggle for scientists because they are just beginning to understand what physically makes an autistic brain different from that of an average person.
A few studies have shown promising results, but for the most part, scientists are still relying on behavioral analysis to determine whether or not a person has autism, said Matthew Kittelberger, a biology professor at Gettysburg College.
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A growing scientific consensus has found that this impairment originates with gene mutations, known as de novo, in the early stages of prenatal development.
"The dogma has always been that mutations are very rare," Kittelberger said. "We are starting to realize that's not true. You probably have 50 to 100 de novo mutations that neither of your parents have."
Of these de novo mutations, must of them have no effect on people, Kittelberger said, but some are associated with mental health. Genes involved with brain development are especially susceptible to these mutations, he added, which could explain why mental disorders such as autism and schizophrenia exist.
The number of special education students in the state has increased by 10 percent in the last five years, and many of them have acute conditions that were once addressed outside of classroom settings. But as schools scramble to meet their needs, the number of licensed special education teachers in Minnesota is in sharp decline, dropping by almost 10 percent over the same time frame.
Teachers say working with special education students is becoming more difficult and dangerous. Many of those students are bringing more severe problems to already crowded classrooms that lack support staff. Others are prone to violent outbursts that are injuring or frightening teachers.
“Some of our teachers are leaving after a couple of months,” said Mary Roffers, who teaches disabled children at Hiawatha Elementary School in Minneapolis and has been bitten, punched and pushed by students. “They just can’t do it.”
More than 800 of the state’s 8,900 licensed special education teachers quit during the most recent school year the state tracked. Meanwhile, it granted just 417 new licenses for special ed teachers, the fewest in at least five years.
The shortage is a national problem, but it is an especially urgent issue in Minnesota, which has one of the fastest-growing special education populations in the country.
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Some teachers say paperwork, which goes beyond federal requirements and has increased as teachers get more students with more difficulties, forces them to work 70-hour week.
Advocates for disabled students say paperwork may be monotonous, but it is necessary.
“No paperwork means no accountability,” said Virginia Richardson, parent liaison for PACER, a national advocate for disabled students based in the Twin Cities.
A federal judge has now frustrated military families that earlier won insurance coverage for a certain kind of autism therapy.
In a rare reversal, U.S. District Judge Reggie Walton second-guessed his own previous order that the military’s health program pay for the autism therapy sought by a Florida couple and others. For retired Air Force Master Sgt. Kenneth Berge and his wife, Dawn, of Crestview in the Florida panhandle, the new decision could complicate long-term efforts to help their son, Zachary.
Walton’s legal about-face also could affect, at least temporarily, many others who want the TRICARE military health program to pay for the therapy, called “applied behavior analysis.” Ruling in a class-action lawsuit in July 2012, Walton ordered Pentagon officials to cover the therapy under the health program’s basic plan.
This week, Walton concluded he erred and would now give federal officials a second chance to justify their policy or change it.
“Judges must have the integrity to acknowledge and accept their mistakes if justice, rather than pride, is the controlling factor in our sometimes failed efforts to adhere to the rule of law,” Walton wrote for the U.S. District Court for the District of Columbia.
Walton’s reversal will not immediately cut off benefits. Defense Department officials have promised to continue covering the therapy under the TRICARE basic program, as he originally ordered, until the issue has been re-examined and all legal appeals have ended.
In his 21-page decision issued late Wednesday stopping his prior order. Walton sided with Justice Department officials who had sought reconsideration of the earlier order. He sent the “applied behavior analysis” issue back for further evaluation and also took away the class-action certification he had granted earlier.
Read more here: http://www.mcclatchydc.com/2013/06/06/193245/judge-giveth-and-judge-taketh.html#.UbNGPPnCZ8E#storylink=cpy
The U.S. Department of Housing and Urban Development (HUD) today issued new guidance to HUD-assisted housing providers on how they can support state and local Olmstead efforts to increase the integrated housing opportunities for individuals with disabilities who are transitioning from, or at serious risk of entering, institutions and other restrictive, segregated settings.
Olmstead refers to the 1999 Supreme Court landmark decision, Olmstead v. L.C., which affirmed that the unjustified segregation of individuals with disabilities is an illegal form of discrimination. Following the Olmstead decision, many states are working hard to assist individuals living in institutions and other segregated settings to move to integrated, community-based settings where they can receive the health care and long-term services and supports they need. Many of these efforts, though, are confounded by a lack of integrated and affordable housing options for persons with disabilities.
HUD’s new guidance encourages public housing agencies and other HUD-assisted housing providers to consider the housing needs of their individual communities and their state and to partner with state and local governments to provide additional community-based, integrated housing opportunities. HUD’s guidance is consistent with efforts across federal agencies and in many states to provide appropriate health care and related supportive services for individuals with disabilities in the most integrated setting appropriate to their needs. ... The guidance announced today affirms HUD’s commitment that individuals with disabilities, like all persons, should have meaningful choice and self-determination in housing and in the health care and related support services they receive. For this reason, HUD is exploring how it can fund additional integrated housing units scattered throughout communities and provide a greater range of meaningful housing choices for individuals with disabilities. HUD is also exploring how existing HUD-assisted housing can provide individuals with disabilities increased opportunities to exercise autonomy, independence, and self-determination in living arrangements that have the comforts and qualities of home.
While HUD’s guidance will be helpful to individuals with disabilities and anyone engaged in the funding, development or operation of housing, the scope of this guidance is limited to HUD funding and programs. Recipients of HUD funds include, but are not limited, to: states, units of local government; public housing agencies; and developers of multifamily properties. Recipients do not include the individual beneficiaries of HUD-funded programs and activities.
The opposition to the autism bill was finally out in the open during a meeting of the newly created state Commission on Mandates.
"It's nice to see who they are and what you're up against," said Anna Bullard, the Toombs County mother who spent much of the winter lobbying on behalf of a bill that would require insurance coverage in Georgia for autism treatment. "Because the whole time we were at the capitol, we never saw anybody. Or heard anything. But we knew they were there."
"And they all have compelling stories," said Kyle Jackson, lobbyist for the National Federation of Independent Businesses-- which opposes the bill. Like Bullard, Jackson spoke before the mandate commission Tuesday.
Autism Speaks, the world’s leading autism advocacy and science organization, has formed the Autism Speaks Legal Resource Center (ASLRC) to help develop and protect the legal rights of people with autism. The initial focus of the ASLRC will be on ensuring access to effective autism treatment through enforcement of autism insurance reform and other private and public sources of coverage.
The new Center will serve as a resource center for the nation’s legal community involved in autism litigation and work with local and national advocates in ongoing or developing impact cases and legal advocacy. The Center may provide logistic support, coordination, legal advice and analysis, training and policy analysis, co-counseling in strategic cases and amicus (friend of the court) briefing. Although the ASLRC will not be equipped to respond to individual requests for representation, it will have as part of its mission, the development of a referral network of qualified attorneys who can provide these services.
The Center is led by Dan Unumb, J.D., who has previously practiced with the U.S. Department of Justice and private law firms and most recently served as Director of Litigation for South Carolina Legal Services. Unumb has extensive experience in autism law and is co-author of the law school casebook “Autism and the Law” with Lorri Unumb, J.D., vice president of state government affairs for Autism Speaks.
The Autism Speaks Legal Resource Center will strategically develop and enforce key legal precedents, organize and train attorneys, coordinate legal resources, and serve as a clearinghouse for legal information and assistance to attorneys, regulatory agencies, and providers. The Center will also work with the Bar and the judiciary to raise awareness of legal issues pertaining to autism and with policy groups, as well as executive and legislative personnel on legal reforms to address the public health crises posed by autism. ... Initially, The Center is now focusing on enforcing insurance reform laws, and securing access to medically necessary treatment by all including those on Medicaid, those in states without insurance reforms or with federally regulated insurance, and those to be covered under the Affordable Care Act.
Raising children in congregate settings is inherently dangerous. Even in clean, well-managed and well-staffed institutions, children encounter greater risks to their life and health compared to those who grow up in families. Children who grow up in institutions are likely to acquire developmental disabilities, and the youngest among them also face potentially irreversible psychological damage. ... For a child who has already been institutionalized, falling ill can be a death sentence. Staff members at facilities in more than one country have said that children with disabilities are routinely denied medical treatment. Institution staff have also told us – incorrectly – that children with developmental disabilities lack the ability to feel pain. So, in some cases, medical procedures are conducted without anaesthesia. In one facility, children’s teeth were extracted with pliers; elsewhere, children received electro-convulsive therapy with no anaesthesia or muscle relaxants.
Children have been given electric shocks, physically restrained for long periods and isolated with the express purpose of causing pain, on the theory that this ‘aversive therapy’ would extinguish behaviour deemed inappropriate. A teacher in the United States described one girl – blind, deaf and non-verbal – who was shocked for moaning. It turned out she had a broken tooth.
Unfortunately, the report is of very limited usefulness. It offers few statistics on how conditions have changed over the years, or how different countries compare in the prevalence and treatment of disabilities. The word autism appears exactly once, in a photo caption.
Some of those changes bring the manual closer to the 13 disability categories identified in the IDEA, said Stephen E. Brock, a professor of school psychology at California State University, Sacramento, and the president-elect of the National Association of School Psychologists. For example, the IDEA only names "autism" or "specific learning disability" as categories, as opposed to Asperger's syndrome or dyslexia.
The chief difference between the DSM-5 and the main law that governs special education is that simply the presence of symptoms is not enough to trigger special education services, Mr. Brock said. The disability symptoms must have some negative effect on a student's academic performance before special education is merited.
The psychiatrists' manual "does not direct our authority, but it absolutely should direct our attention," Mr. Brock said. School psychologists should have basic familiarity with the manual, he said, so that they can understand if a child comes to school with a particular diagnosis from a clinician.
... The establishment of social communication disorder as a category offers a more precise definition of disabilities for students who struggle to follow conversational rules, such as taking turns speaking, or who have trouble understanding ambiguous uses of language.
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Peggy Shaefer Whitby, an assistant professor of special education at the University of Arkansas at Fayetteville, said the new classification may pose a puzzle to school teams that have not seen the diagnosis of social communication disorder before.
"How is the [individualized education program] team going to look at this and determine how to serve these kids?" said Ms. Whitby, who specializes in autism.
A special education teacher at Bennet-Kew Elementary School in Inglewood was accused Friday of mocking the students in her class on several of her social media accounts.
According to one parent, the teacher posted several pictures of student tests and parent notes with sarcastic comments added.
The Inglewood School District said it was aware of the allegations and the teacher was under investigation.
A Senate subcommittee last week proposed a $50 million solution to temporarily address the lack of coverage for ABA under Medi-Cal . The new proposal would appropriate $50 million to make sure Medi-Cal children with autism are able to receive applied behavioral analysis treatment – known as ABA therapy — through the end of 2013. The assumption is that ABA therapy will be available as an essential health benefit under the Affordable Care Act starting in 2014.
... Medi-Cal covers autism services through contracted regional centers around the state, but the eligibility criteria to receive ABA therapy is much more stringent than under the Healthy Families plan. An estimated 75% of children who were eligible under Healthy Families would not qualify for the same services under Medi-Cal. The percentage who do qualify may be even lower than 25%, according to Melissa Cortez-Roth, legislative advocate for Autism Speaks.”Not everyone who qualifies for Healthy Families who will be losing coverage qualifies for coverage at a regional center,” Cortez-Roth said. “Only a fraction of those children qualify for the regional centers.”
Toby Douglas, director of the Department of Health Care Services that has orchestrated the Healthy Families transition, said the Senate subcommittee’s plan might be difficult to implement.”We do just want to raise a couple concerns,” Douglas said. “First of all, we are concerned about the fiscal estimate. Given that this needs to be built into the plans, this would have to be built into the plans’ rates. …We are concerned it may underestimate the cost for our plans.” The second concern, Douglas said, is timing. “Any change to our plans requires contractual changes, as well as building in the rates,” Douglas said. “And we need to get approval from our federal partners, including amendments to our 1115 waiver to add this benefit, which will take several months.” Douglas said July 1 was not “a realistic implementation date.”
The parents of a Brick Township High School placekicker with multi-symptom autism and other developmental disabilities filed a federal lawsuit today alleging the New Jersey State Interscholastic Athletics Association violated their son’s civil rights by denying him a fifth year of eligibility.
The complaint against the NJSIAA, filed in U.S. District Court for the District of New Jersey in Trenton, claims Anthony Starego is entitled to play football this fall under the federal Americans with Disability [sic] Act (ADA), which states in part that reasonable accommodations must be made to include those with disabilities in interscholastic competition. ... Starego’s attorney, Gary S. Mayerson, is the founding partner of New York City-based Mayerson & Associates, established 13 years ago as the nation’s first law firm dedicated to representing children and adolescents with autism spectrum disorders and related developmental disabilities. ... A non-graded student with an Individualized Education Program (IEP) that addresses football, according to the Strarego family, Strarego is not enrolled in a particular grade. He is entitled under federal law until age 21 to a free and appropriate public education including non-academic and extracurricular services.
The complaint says Starego deserves special treatment through a limited one-year waiver as a reasonable accommodation under the ADA because he is an IEP student with a disability who would not otherwise be eligible to compete this fall.
Citing a 2001 U.S. Supreme Court ruling that the PGA Tour could not lawfully deny disabled golfer Casey Martin the option to ride in a golf cart between shots, the complaint and petition also allege that the NJSIAA failed, as mandated by the high court’s decision, to consider Starego’s personal circumstances in deciding whether to accommodate his disability.
Organizers of the new effort known as “Stop Hurting Kids” say they hope to raise public awareness of the dangerous consequences often resulting from the use of restraint and seclusion techniques in the classroom.
They are also looking to spur a grassroots movement by asking supporters to sign up and take a series of weekly actions to learn about restraint and seclusion, advocate for policy change and share their stories, according to Jonathan Riethmaier of TASH, one of over two-dozen disability advocacy groups backing the new campaign.
Other partner organizations include The Arc, the National Down Syndrome Society, the National Disability Rights Network and the Autism Society.
At a kickoff event Thursday evening in Washington, organizers plan to unveil a 27-minute documentary featuring individuals who experienced restraint and seclusion at school and their parents. Speakers at the event — which will be streamed online — are expected to include Michael Yudin, who heads the Office of Special Education and Rehabilitative Services at the U.S. Department of Education, as well as Larke Huang of the Substance Abuse and Mental Health Services Administration.
The film — which will be freely available on the campaign’s website following the premiere — was created by Dan Habib of the University of New Hampshire’s Institute on Disability.
