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
For the first time in at least 30 years, inflation-adjusted government spending on people with intellectual and developmental disabilities fell in the U.S.
Total spending reached $56.65 billion in the 2011 fiscal year—the most recent total—down 0.2% from the previous year, according to the 2013 State of the States in Developmental Disabilities, compiled by the University of Colorado. About three-fourths is paid by Medicaid.
Most of the spending, 59%, goes to smaller group homes of six or fewer people. About 11.5% is spent by state-operated institutions with 16 or more residents. Settings with seven to 15 people receive about 5% of the funding; large privately run institutions receive 3%.
So we have five groups consisting of 65 mothers each, all nurses–occupational exposure comes to mind–and an estimate piled on top of an estimate. For example, addresses covered two to three-year periods even though gestation takes nine months:
Children born from 1987 to 1990 were assigned the geographic location of their mother in 1989 (the first year of study). Children born in 1991 or 1992 were assigned the mother’s mailing address in 1991, and births from 1993 to 2002 were assigned the nurses’ addresses, updated every other year, in similar manner.
And the pollution estimates covered even spottier time points:
Hazardous air pollutant concentrations were assessed by the EPA National Air Toxics Assessments in 1990, 1996, 1999, and 2002, which uses an inventory of outdoor sources of air pollution, including both stationary sources (e.g., waste incinerators, small businesses) and 7 mobile sources (e.g., traffic) to estimate average ambient concentrations of pollutants for each Census tract based on dispersion models (United States Environmental Protection Agency 2011).
In other words, pollution estimates were based on an inventory made in each of four years over the 15-year period of births in the study, and that inventory wasn’t a direct measure but based on identified sources of air pollution, which were then used to estimate “ambient concentrations” by census tract based on a “dispersion model.” This is not a tight association, folks. That’s not the fault of the authors or even of the study design, but it’s also a strong reason to avoid getting too excited about the results.
Yet a lingering question is, Why is anyone asking this question in the first place? The scientific method relies on observations that lead to a hypothesis to test. Scientists are not supposed to, a la Baroness Greenfield, point to one thing and point to another and say, “maybe related!” just because, well, why not? In this case, we don’t even have a correlation between, say, increasing air pollution levels and increasing autism rates. And we have a far more compelling explanation for the latter: diagnostic shift and increased recognition and diagnostic capture.
Military families will face new restrictions and cutbacks obtaining applied behavior analysis (ABA) therapy for their children with autism under new policies made public this week by TRICARE, the Department of Defense health benefits program.
"These policies drastically change how ABA is covered under TRICARE and will impact all beneficiaries and service providers," said Karen Driscoll, Autism Speaks' associate director for federal government affairs and military relations. "Autism Speaks is very concerned about the imposition of age and duration limits, threatened cutoffs for treatment, and the administrative hurdles to access care.
"Military families deserve better," she said. “Our clinical science and advocacy teams are working on a report and plan of action to address. Please stay tuned for policy updates.”
Pilot program. Ordered by Congress in late 2012, this program was intended to expand ABA coverage under a 12-month pilot program for dependents of non-active duty service personnel
Advocates for people with autism want access to critical treatments, but legislation that would allow it is hung up in the General Assembly.
Most insurance providers cover speech, occupational and physical therapy, but North Carolina is one of 17 states where insurance doesn't cover applied behavior analysis, also known as ABA therapy.
The state House voted overwhelmingly last month to approve legislation that would require insurers to cover ABA therapy, but it has languished in a Senate committee since then.
Scott Taylor said he and his wife paid $1,500 out of pocket for ABA therapy for their 11-year-old son, Daniel. He credits the strides his son has made to the therapy, which involves a team of therapists reinforcing positive behaviors and trying to eliminate negative ones.
"It makes a big difference," Taylor said. "It is time intensive, one on one, and so it's not cheap."
A year ago, he said, they had to halt the therapy because they could no longer afford it.
"These children cannot wait on the treatment that they need and that their doctors are prescribing," said Lorri Unumb, vice president for government affairs for advocacy group Autism Speaks. "To have an insurance policy that purports to cover autism but doesn't cover the single most important treatment for autism is not meaningful."
The limited data available suggest that outside North America and Europe, many cases of autism go unrecognized. A major barrier to diagnosis is the cost of assessments.
“There are glaring disparities globally, and even within the U.S., in terms of where the research on autism is being done, who is included in studies of autism and the diagnostic and therapeutic services available,” says Maureen Durkin, professor of population health sciences and pediatrics at the University of Wisconsin School of Medicine and Public Health. ... Western Psychological Services, a publishing company based in Los Angeles, owns many of the common autism screening and diagnostic instruments. These include the Social Responsiveness Scale (SRS), a widely used screening questionnaire that Constantino developed, as well as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), often referred to as the gold-standard tests for diagnosis of the disorder.
Each time one of these tests is administered, the publisher charges a fee, and passes a portion of the royalties on to the test’s developers.
“I don’t think there’s any other condition in medicine in which you have to pay a royalty to a publishing company in order to make the diagnosis,” says David Skuse, professor of behavioral and brain sciences at University College London. Skuse has helped develop two freely available tools, the Social and Communication Disorders Checklist (SCDC) and the developmental, dimensional and diagnostic interview (3di).
In many countries, paying royalties of even a few dollars represents a substantial hardship. Durkin and others say these costs not only limit access to diagnosis for individuals, but also forestall epidemiological studies, which require surveying thousands of individuals.
As charter schools continue to proliferate across the country, a new study finds that they are offering benefits for students with disabilities.
In a report out this week, the Center for Research on Education Outcomes at Stanford University compared the performance of students at charters with that of students attending traditional public schools in 25 states, the District of Columbia and in New York City. The analysis is an update to a similar report issued in 2009.
Overall, the study finds that charters are improving, particularly when it comes to often-underserved groups like poor and minority students and those with disabilities.
To assess students in special education, researchers compared those attending charters to students at traditional public schools by matching children who started out testing at the same level in order to mitigate the influence of their disability. Then, they looked at standardized test results from the same students years later to determine which schools they fared better in.
While gains in reading were similar for the two groups, the report found that special education students at charters saw greater advances in math, equivalent to 14 extra days of learning.
A press conference was held Friday at the Wheat Street Baptist to mark the official launch of the program.
Outreach through faith-based organizations is an important part of ensuring that underserved communities understand the importance of early detection, says Amy Daniels, Ph.D., Autism Speaks assistant director of public health research. The congregations’ outreach will increase community awareness of autism’s early signs as well as freely available resources and services.
The Lanterman Developmental Disabilities Services Act, passed in 1969, requires regional centers to pay for medically necessary treatments, including ABA therapy. Last year, in order to shift the funding burden on regional centers, the Legislature passed SB 946 -- by Sen. Darrell Steinberg (D-Sacramento) -- which required private insurers to pay for the service, saving money for the state.
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The budget plan passed by the Legislature last week prohibits regional centers from paying the copayments or deductibles for ABA therapy, except in cases of demonstrable need. Ultimately, the provision means that people with private insurance will have to pay the deductible and copay.
... State health officials said this is simply an instance of cost-cutting by the Legislature and governor.
All inquiries to state officials for this story were referred to the Department of Developmental Services, which responded with a short written statement. According to the DDS statement, if clients have trouble paying their copays, regional centers are allowed to help, depending on the clients' demonstrated financial need.
The DDS statement said, in part:
"The current budget trailer bill establishes uniform guidelines and authorizes regional centers to pay health insurance co-payments for services on behalf of lower income families or others who demonstrate hardship. Subsequent to enactment of the budget trailer bill, DDS will provide guidance to the regional centers regarding implementation of the authority to pay co-payments for low-income families or others who demonstrate hardship."
In the vernacular, this is called "means-testing."
That kind of means-testing has never been part of the Lanterman Act, according to Rick Rollens, a legislative adviser to ARCA, the Association of Regional Center Agencies.
"This is an historic shift in the Lanterman Act," Rollens said. "It's a major shift. It's the first time when a major service provision is now being means-tested. Historically, this has not been an issue."
... The question of payment for ABA therapy in the regional centers is just one of several recent changes in autism coverage in California.
• The proposal to include ABA therapy as a benefit under the federally funded optional Medi-Cal expansion starting in 2014 was dropped. • In their May budget proposal, state lawmakers allocated $50 million (or $100 million, if the federal matching money is considered) for one fiscal year of ABA therapy for Medi-Cal patients, which would have begun in July 2013. That provision was struck from the budget trailer bill in June. • In 2009, the state eliminated funding for the Early Start program that affected about 17,000 developmentally delayed and at-risk children, including many kids who had early signs of autism, according to Jacobson. • In September 2012, the state passed SB 946, requiring private insurers to pay for ABA treatment. The bill also provided for ABA therapy for children in the Healthy Families program. An estimated 10,000 of the 860,000 children in Healthy Families may have qualified for ABA therapy. But shortly after SB 946 passed, the state announced it was eliminating the Healthy Families program and moving those children to Medi-Cal managed care plans.
State health officials at the time assured lawmakers that there would be no gaps in continuity of care and that benefits would follow the children, but that has turned out not to be the case for an estimated 500 Healthy Families children who started to receive ABA therapy. Those children have been referred to the regional centers, and an estimated three-fourths of them are expected to fail to qualify for ABA therapy at the centers.
Through an innovative program launched four years ago by Rep. Gregg Harper (R-MS), interns with developmental disabilities have been placed in Congressional offices to perform staff work while rubbing elbows with the nation's top elected officials. In the process, they are helping change attitudes among key decisionmakers about what people with developmental disabilities can do in the workplace.
The program has proven so successful that House Speaker John Boehner (R-OH) has just brought in two interns with disabilities to work in his personal office and the Majority leadership office, according to Salley Wood, deputy staff director for the Committee on House Administration, which manages the internship program.
Harper, whose son Livingston was diagnosed with Fragile X at age 4, started the program after visiting George Mason University's Mason LIFE program shortly after being elected to Congress. Mason LIFE has provided 47 interns who have worked with 66 Congressional offices. About 40 percent of the interns have autism, said Dr. Heidi Graff, the program director.
After NBC 4 New York's I-Team report in March revealing that health insurers were denying coverage to autistic children, New York lawmakers have approved a reform that would force insurance companies to pay up.
The bill, passed by both the New York state Senate and Assembly, demands insurers cover a key autism therapy called Applied Behavior Analysis, or ABA.
The problem is, New York state doesn’t offer a license specifically for behavior analysts.
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After the I-Team report revealed the imbalance, State Sen. Charles J. Fuschillo, Jr. (R-Merrick) proposed a law that would establish a new license, specifically for behavior analysts. With such a license in place, insurance companies would have no grounds to deny coverage for autistic kids.
After his reform bill passed on Monday, Fuschillo issued a statement denouncing the last minute administrative rule which limited the original legislation’s impact.
“New York’s autism insurance reform law was authored to prevent families from having to spend tens of thousands of dollars out of pocket on treatments and therapies for their loved ones with autism," Fuschillo said. "Unfortunately, regulations were implemented contrary to the law’s intent which prevent many families from receiving these benefits."
Women who live in areas with polluted air are up to twice as likely to have an autistic child than those living in communities with cleaner air, according to a new study published today.
Babies born in areas of the United States with high airborne levels of mercury, diesel exhaust, lead, manganese, nickel and methylene chloride were more likely to have autism than those in areas with lower pollution. The strongest links were for diesel exhaust and mercury.Building on two smaller, regional studies, the Harvard University research is the first to link air pollution nationwide with autism. It also is the first to suggest that baby boys may be more at risk for autism disorders when their mothers breathe polluted air during pregnancy.
“The striking similarity with our results and the previous studies adds a tremendous amount to the weight of evidence that pollutants in the air might be causing autism in children,” said Andrea Roberts, a research associate at the Harvard University School of Public Health and lead author of the new study published online in Environmental Health Perspectives.
Scientists have been trying to figure out whether a variety of environmental exposures are linked to autism, a neurological disorder diagnosed in one out of every 50 U.S. children between the ages of 6 and 17.
Because the new air pollution study has some weaknesses, however, its findings, while interesting, are not conclusive, several scientists said. For example, the researchers estimated the mothers’ exposure to air pollutants based on computer models.
“It’s the same weakness as other studies [on environmental pollutants and autism]. They’re using an EPA model, which estimates what’s coming out of factories and traffic and spits out a pollution estimate,” said Amy Kalkbrenner, an assistant professor of epidemiology at the University of Wisconsin-Milwaukee, who was not involved in this study.
Also pollution varies by season and “pregnant women don’t just sit inside a census tract,” said Kalkbrenner, who conducted a similar, smaller study in 2010.
In addition, the results may be skewed because children in urban areas have more access to doctors and clinics where they are more likely to be diagnosed, said Irva Hertz-Picciotto, an environmental epidemiologist at the University of California, Davis, who studies autism.
Many posts have dealt with race and ethnicity. Others have discussed co-occurring or comorbid health conditions. Sarabeth Broder-Fingert and colleagues have an article in Pediatrics titled "Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism." From the abstract:
We identified 3615 patients (2935 white, 243 Hispanic, 188 African American, and 249 other). The most striking differences were in use of gastroenterology (GI)/nutrition services. Nonwhite children were less likely to use GI/nutrition specialty providers (African American, odds ratio = 0.32 [95th percentile confidence interval: 0.18–0.55]; Hispanic, 0.32 [0.20–0.51]; other, 0.56 [0.34–0.92]) as well as neurology (African American, 0.52 [0.33–0.83]; Hispanic, 0.40 [0.27–0.59]) and psychiatry/psychology (African American, 0.44 [0.27–0.72]; Hispanic, 0.60 [0.41–0.88]; other, 0.62 [0.38–0.99]). Nonwhite children were less likely to have had GI studies: colonoscopy (African American, 0.23 [0.10–0.53]; Hispanic, 0.26 [0.14–0.50]), endoscopy (African American, 0.31 [0.16–0.58]; Hispanic, 0.27 [0.16–0.46]; other, 0.53 [0.31–0.90]), and stool studies (African American, 0.49 [0.30–0.91]). Hispanic children had lower rates of neurologic and other testing: EEG (Hispanic, 0.53 [0.35–0.78]), brain MRI (African American, 0.37 [0.22–0.63]; Hispanic, 0.62 [0.42–0.90]), sleep study (Hispanic, 0.18 [0.04–0.76]), and neuropsychiatric testing (Hispanic, 0.55 [0.32–0.96]).
CONCLUSIONS: We found racial and ethnic differences among children diagnosed with autism in use of care and procedures. Possible explanations for these findings include differences in presentation, referral rates, or referral follow through.
The exact reasons behind these findings remain unclear. One explanation may be that minority families face greater barriers in accessing specialist services. Lower numbers of local specialists, transportation issues, and lack of a regular health care provider have all been identified as problems for minority children.
Additionally. minority families may have beliefs that lead to the use of non-traditional services, or attribution of a child’s symptoms to non-medical causes. Even when obtaining referral to a specialist, children from minority families can face challenges in maintaining regular follow-up.
Another issue that remains to be clarified is whether the symptoms of autism are the same across racial and ethnic groups. Some evidence suggests that there may well be differences. For instance, one study has shown that children from minority groups may have more co-occurring symptoms of aggression. If aggression becomes the dominant issue during consultations, then other medical issues may be missed, and opportunities for specialist referral lost.
One final possibility is that children from white families are being referred too frequently to specialists, with subsequent unnecessary medical investigation. This could certainly be a problem given the lack of standardized guidance on how to treat and assess medically complex symptoms in children with autism.
... This study adds to the body of research showing race and ethnicity as being important factors in the diagnosis and treatment of autism. Studies conducted during the last decade have consistently noted that children from minority groups face substantial delays in obtaining an autism diagnosis.
African-American children in particular are more likely to be initially misdiagnosed, and face an average delay in autism diagnosis of 18 months compared to their white peers. Some have suggested that while white children may be diagnosed with autism when they have mild to moderate symptoms, African-American children tend to be diagnosed when they have severe symptoms, with milder cases going undetected.
The new law eliminates the age 9 cap, but limits annual ABA benefits to $36,000 a year for children aged 10 and above. Under current law, state-regulated health plans are required to cover the diagnosis and treatment of autism, including behavioral health treatment, such as Applied Behavior Analysis (ABA), as well as speech, occupational and physical therapy.
Perry signed the bill without comment at the conclusion of the state's regular legislative session.
Sponsored by Senators Kirk Watson of Austin, Wendy Davis of Forth Worth and Eddie Lucio, Jr. of Brownsville, SB.1484 will take effect in September. To qualify for the extended coverage, children must be diagnosed with autism by the age of 10 to gain the coverage.
Today Congressman John B. Larson announced the passage of an amendment to require TRICARE, the military healthcare program, to cover behavioral health treatment, including applied behavior analysis for military children with developmental disabilities. The amendment, authored by Congressman Larson and co-sponsored by Congressman Tom Rooney (R-FL), comes as a result of a meeting at an Autism Speaks forum at the home of Tim Shea of West Hartford with Manchester resident Rachel Kenyon. Wife of Command Sergeant Major William Kenyon, Rachel made her case and that of all military families who have dealt with difficulties with TRICARE, which currently limits access to behavioral health treatment. ...
Larson has repeatedly called on Congress to institute a permanent fix to TRICARE for military children. Previously, Larson introduced the Caring for Military Kids with Autism Act (H.R. 2288) in the 112th Congress. That bipartisan bill, which would have required permanent coverage under TRICARE basic of ABA treatments, passed both the House and Senate as an amendment to the National Defense Authorization ACT (NDAA) of 2013. In a limited victory for military families, the conference report for the NDAA created a one-year-pilot program allowing military children with autism to receive greater access to ABA under TRICARE. Today's amendment would institute a permanent solution for military children with developmental disabilities.
Applied behavior analysis (ABA) is proven to greatly help children with developmental disabilities, particularly those who have an autism spectrum disorder (ASD) diagnosis. Today, access to ABA is limited by an annual dollar cap on coverage and is not adequately available to children of military retirees with TRICARE coverage.
In Hanover, Pennsylvania, The Evening Sun reports on an autism mom who tried to start an adult autism transition center but found that it was harder than opening one for children.
In Pennsylvania, the only two state-funded programs for autistic individuals over 21 are the Adult Autism Waiver and the Adult Community Autism Program. Collectively, the two only helped 456 autistic adults in 2012. This is compared to the overall adult autism population in Pennsylvania, which according to the Pennsylvania Department of Public Welfare is about 7,000.
Compared to the rest of the country, the fact that the bureau even has these services is groundbreaking. Pennsylvania's Bureau of Autism Services was the first of its kind in the nation and its unique adult programming is only four years old.
One of these programs, the Adult Autism Waiver, pays for individuals to join programs that provide job training, life-skills instruction, and aid individuals with challenging behavior. Unfortunately the list of interested applicants already has 1,000 names on it and even with the additional $1.5 million in funding that Gov. Tom Corbett is promising in his 2013-2014 budget, the waiver will only be able to help an added 118 individuals.
This is particularly striking considering the rate of growth within the adult autism community in the state over the past few years. From 2005 to 2010, there was a 179 percent increase in autistic adults, and that number is expected to increase by 1,292 percent by 2020, according to the Department of Public Welfare.
... A statewide survey of autistic individuals and their caretakers found this lack of adult services to be chronic. More than one in four adults with autism reported that they needed, but were not receiving vocational training, career counseling or supported employment and more than 50 percent reported an unmet need for mental and emotional health services in general.
When the state decided to transition low-income kids from state-subsidized private insurance — known as Healthy Families –to the state-run Medi-Cal program, families of children with autism were promised that their kids’ treatment would not suffer. But those families soon learned that one especially promising (but expensive) form of treatment was not going to be covered by Medi-Cal.
Since then, those families and other supporters of autism treatment have been lobbying the Legislature to require Medi-Cal to cover the treatment, known as Applied Behavior Analysis. State senators added $50 million to the proposed budget to pay for the treatment for the coming year. But the latest version of the budget approved by budget-writing conference committee deleted that money.
The cut was especially hard to take because state regulators and the Legislature had already required private insurance companies to cover the therapy as part of their mental health benefits. So the state won’t do what it says the private sector must do.
“Particularly at a time when the state’s fiscal outlook is improving, it is unjust to pass a budget that continues to deprive children of medically necessary care and causes serious harm to children with autism and their families,” Jamila Iris Edwards, Northern California Director of Children’s Defense Fund-California, said in a statement e-mailed to reporters. “The State has broken its promise that no child would lose access to critical health care in the Healthy Families transition.”
The U.S. Supreme Court on Monday declined to hear an appeal from parents who contend the New York City school system violated federal special education law when it excluded them from the decision over where their son would attend school.
The parents say they participated in the process in 2008 to develop an individualized education plan for their son, who has autism. But when it came time to assign their son to a school, the New York City school district unilaterally chose a school site and then mailed the decision to the parents as a "final notice of recommendation."
The parents, identified in court papers as R.E. and M.E., believed the assigned school did not have sufficient one-to-one teaching support for their son, so they enrolled him in private school and sought tuition reimbursement from the school district.
A federal district court sided with the parents, but a panel of the U.S. Court of Appeals for the 2nd Circuit, in New York City, ruled last year that under the federal Individuals with Disabilities Education Act, the school district "may select the specific school without the advice of parents so long as it conforms to the program offered in the IEP."
In Hanover, Pennsylvania, The Evening Sun reports on Christian Goff, an ASD student whose parents had to fight for an appropriate school placement:
He wasn't making any progress, said Christian's mother, Kim Goff. So she started talking to school officials, asking for ways to get him transferred to another school, one designed specifically for autistic students.
For six months she fought the school district, attending the litany of meetings that goes into changing the course of care for a special-needs student, and still, the district said no.
That did not stop Goff.
"Is he getting what he needs?" she said, her voice cracking in anger. "No. He is 12 and still can't read or write. He doesn't understand how to type on a keyboard."
The school district did eventually approve Goff's request, but it took a lot of fight, too much fight, Kim said.
"That's what you have to do," Goff said. "You have to fight to get your kid into the right school. It's sad, but unfortunately that's the fact."
One possible barrier to getting this specified level of education is cost.
In the South Western School District, it costs about $20,000 more per year to educate an autistic child in an LIU classroom than it does to educate a typical student, said the district's business administrator, Jeff Mummert.
When recent statewide budget cuts to education are also thrown into the picture, it's clear that school districts are feeling the squeeze. State funding for special education has not increased in the past four years, despite the fact that costs continue to rise, Mummert said.
School officials insist that, by law, they are required to pay for special education and that the district obeys those laws. They also explain that the drive to keep special-needs students within the public school system is purely for educational reasons and is not motivated by monetary factors.
For a guy whose family has such a distinguished record of public service, Kennedy says some pretty awful things about government employees: “The lies that you are hearing and printing from the CDC are things that should be investigated.” He spoke to one scientist (he named her but I won’t spread the defamation) who, he said, “was actually very honest. She said it’s not safe. She said we know it destroys their brains.”
I asked the scientist about their conversation. She said there is in fact no evidence that thimerosal destroys children’s brains, and that she never said that it did. ... A scientist told him about the changes in diagnostic criteria, but “I knew that that was not true, because I spent my life working with people with intellectual disabilities. My family started the Special Olympics. I worked at Camp Shriver from when I was 8 years old. … I saw every kind of mental disability, but I had never seen autistic. I didn’t know what autism was until I saw Rain Man.” ... A cover-up of such proportions might sound like Pulitzer bait, but he says journalists aren’t pursuing the story because we won’t read scientific papers. (Phil Plait and I both have science Ph.D.s.) As RFK Jr. explained, “journalists get their information from government officials who are saying there’s no problem. Not one of them has picked up the multitude of studies that say thimerosal is the most potent brain killer imaginable.” When RFK Jr. challenged the university scientist about a study of the biological activity of thimerosal in vitro, which “everybody accepts because journalists hadn’t read it,” the scientist said, “ ‘Oh, yeah, you’re right about that.’ He backpedaled.” That’s because “now he was dealing with somebody who wasn’t afraid to read science.”
I talked to the scientist, who would prefer I not use his name because he gets death threats from unhinged anti-vaxxers. He said, “Kennedy completely misrepresented everything I said.”
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.
...
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.”
