Autism in Hawaii

The Honolulu Star-Advertiser reports:

Through the last decade, the number of public school students with autism has doubled to more than 1,200 even as the total number of special-needs students has dropped.

And some parents say that growth is outpacing increases in services.

Those frustrations can be seen in due-process claims parents file when they disagree with the services offered for their child.

Last school year, 38 percent of the 148 requests for due process statewide were filed on behalf of children with autism, who make up 6 percent of the public schools' special-education population.

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The department could not comment on specific cases. But officials did say that schools are many times doing their best, and sometimes parents can make unreasonable requests, call for therapies that are untested or get misinformation from others about what schools have to offer.

Education officials noted that the Individuals with Disabilities Education Act mandates a free appropriate public education but does not mandate the best education.

The department did say annual spending on autism is considerable.

In 2008-09 the department spent $22 million on its autism programs alone. Additional funds were also spent on autistic students through other programs.

By comparison, students with a "specific learning disability" make up the largest percentage of special-needs youth, numbering about 8,000 last year. But only 17 due-process requests were filed for the group in 2009-10.

Idaho Cuts Services for Adults on the Spectrum

The Magic Valley [Idaho] Times-News reports on autistic Idaho adults having to choose between services because of Medicaid cuts:

Eric currently receives two types of service through Medicaid: psychosocial rehabilitation and developmental therapy. Developmental technicians like Voss help clients with life skills, like balancing checkbooks and housecleaning, plus physical issues, like coordination and how to handle sensory overload. As part of DT, Eric volunteers at Parke View Care and Rehabilitation, which helps him socialize and gives him responsibilities outside of the home.

Psychosocial rehabilitation, or PSR, workers help clients with social skills and address emotional issues, like dealing with frustration and anger. As Eric explained, “fitting in more with society.”

Eric meets with his developmental technician for 10 hours every week and his PSR worker five hours per week.

For DT, Health andWelfare spokeswoman Emily Simnitt said, Medicaid reimburses providers at about $20 per hour, although rates depend on whether therapy is individual or in a group. Medicaid reimburses providers $45.40 for an hour of PSR.

Temporary rules, designed to help Medicaid reduce costs, force Eric to choose between the two services. The rules are set to expire in July, the end of the 2011 fiscal year, although the cuts might be extended this legislative session.

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Not everyone agrees that both services are necessary — including some service providers themselves.

The Idaho Legislature directed the Idaho Division of Medicaid to consult Medicaid service providers about where to find savings, Wilkinson said. In a survey, many respondents were critical of PSR and DT services, calling the program inefficient and suggesting more oversight.

“Someone who has been on Psycho-social Rehabilitation for 10 years with the same goals should be closed to Psycho-social Rehabilitation,” one anonymous survey respondent wrote. “Goals should be realistic, time specific and re-evaluated and considered before continuing to authorize the service with unlimited hours where a Psycho-social Rehabilitation worker just hangs out with them as their friend.”

Other criticisms: Developmental technicians are undereducated, service agencies profit too much, and PSR and DT services overlap. Some providers questioned how much adult clients benefit from the services, calling the two glorified day care. “(Developmental therapy) is a waste of money because by that time they’ve either learned what they need to or not,” one Medicaid provider wrote. “If not, they are not likely to.”

That’s not the case, insist Eric Forth and his family. Since getting both PSR and DT services about three years ago, Eric’s behavior has improved, Mike Forth said. Eric gave an example of a recent encounter while volunteering with a woman who had brain damage. When Eric pointed out she was breaking the rules of the game they were playing, the woman began cursing at him. He spoke to her calmly and knew not to take the incident personally, Eric said.

If that had happened three years ago, “I probably would have hit her,” he said.

Autism in Tennessee Schools

The Tennessean reports:

Tennessee does not require teacher training on children with autism, nor does it track whether any training that schools do offer is effective, a recent state study noted.

• Tennessee Comptroller's autism report

But many say the state should be doing both.

"Unfortunately, there are teachers with students with autism that have not been trained," said Nicolette Bainbridge Brigham, training director for Vanderbilt University's Treatment and Research Institute for Autism Spectrum Disorders. "It's a complex disorder and requires certain interventions, and if personnel haven't been trained … it can be very challenging."

Crime and People with Disabilities

The Bureau of Justice Statistics reports:

To compare crime victimization rates for persons with and without disabilities an age adjustment was necessary. In the United States the population with disabilities tends to be older than the population without disabilities. When victimization rates were age-adjusted, people with disabilities experienced higher rates of violence than people without disabilities—40 victimizations per 1,000 persons with disabilities compared to about 20 per 1,000 without disabilities. In fact, the age-adjusted rates of all crimes measured were at least twice as high for persons with disabilities.

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Persons with a cognitive disability had higher rates of robbery and simple assault than persons with other types of disabilities.

The Autism Society has information for professionals and for crime victims with autism

Early Intervention

WebMD reports:

A six-month, group-based early intervention program with a special emphasis on social development can improve some of the core symptoms of autism spectrum disorder in children as young as 2, according to a study in the Journal of Child Psychology and Psychiatry.

“This and other autism studies suggest that the ‘wait and see’ method, which is often recommended to concerned parents, could lead to missed opportunities for early intervention,” Rebecca Landa, PhD, director of the Center for Autism and Related Disorders and the REACH research program at Kennedy Krieger Institute in Baltimore, says in a news release. “By acting early, we are providing toddlers tools and skills to increase social opportunities throughout their lifetime and positioning them to have the best possible outcomes.”

Here is the abstract:

Background:  Social and communication impairments are core deficits and prognostic indicators of autism. We evaluated the impact of supplementing a comprehensive intervention with a curriculum targeting socially synchronous behavior on social outcomes of toddlers with autism spectrum disorders (ASD).

Methods:  Fifty toddlers with ASD, ages 21 to 33 months, were randomized to one of two six-month interventions: Interpersonal Synchrony or Non-Interpersonal Synchrony. The interventions provided identical intensity (10 hours per week in classroom), student-to-teacher ratio, schedule, home-based parent training (1.5 hours per month), parent education (38 hours), and instructional strategies, except the Interpersonal Synchrony condition provided a supplementary curriculum targeting socially engaged imitation, joint attention, and affect sharing; measures of these were primary outcomes. Assessments were conducted pre-intervention, immediately post-intervention, and, to assess maintenance, at six-month follow-up. Random effects models were used to examine differences between groups over time. Secondary analyses examined gains in expressive language and nonverbal cognition, and time effects during the intervention and follow-up periods.

Results:  A significant treatment effect was found for socially engaged imitation (p = .02), with more than doubling (17% to 42%) of imitated acts paired with eye contact in the Interpersonal Synchrony group after the intervention. This skill was generalized to unfamiliar contexts and maintained through follow-up. Similar gains were observed for initiation of joint attention and shared positive affect, but between-group differences did not reach statistical significance. A significant time effect was found for all outcomes (p < .001); greatest change occurred during the intervention period, particularly in the Interpersonal Synchrony group.

Conclusions:  This is the first ASD randomized trial involving toddlers to identify an active ingredient for enhancing socially engaged imitation. Adding social engagement targets to intervention improves short-term outcome at no additional cost to the intervention. The social, language, and cognitive gains in our participants provide evidence for plasticity of these developmental systems in toddlers with ASD. http://www.clinicaltrials.gov/ct2/show/NCT00106210?term = landa&rank = 3.

Kansas Mandate

KansasReporter reports:

It was an unusual sound to hear in the statehouse—a child screaming at top volume, angry about putting on his shoes.

But members of the Joint Committee on Children’s Issues watched the recording raptly, as the video showed improvements in the autistic child’s behavior over five years, progressing from massive meltdowns to interacting with adults the way a typical child would.

The video demonstrated to lawmakers on the committee how early intervention and services help autistic children improve so they eventually need either no additional assistance, or a very minimal level.

But paying for those early intervention services is costly and often leaves a family in financial ruin if the therapies, which cost in excess of $45,000, are not covered by insurance. Because of that, lawmakers are considering ways to require insurance companies to cover autism therapy. Those services usually include speech and occupational therapy, and applied behavior analysis, which is experimenting with various stimuli and using the autistic child’s reaction to modify teaching approaches.

According to the testimony from Judith Ursitti, with the national advocacy group Autism Speaks, 23 states including Kansas already have some sort of insurance reform law concerning autism. But she said Kansas’ law, passed last session, falls short because it only requires the State Employee Health Plan to cover therapies as a test program. But autism advocates told the committee that this means many autistic children are going without therapy because of its cost and won’t get help during the very narrow window in which many of the therapies work.

Autism in Northern Ireland

The Belfast Telegraph reports:

Autistic people will see services brought into the mainstream by changes to the way they are treated, it has been claimed.

Reforms would ensure that people with autism in Northern Ireland are included in disability legislation and that comprehensive services are provided to them and their families from their earliest years through the course of their lives on a cross-departmental basis.

Autism is a lifelong developmental disorder which affects the way a person communicates with other people. There are difficulties with the ability to understand and predict other people's intentions and behaviour and to imagine situations outside of their own routines. This can be accompanied by a narrow repetitive range of activities.

SDLP MLA Dominic Bradley is piloting the Autism Bill Northern Ireland through the Assembly

See also Autism Northern Ireland

Equity in Special Ed

From Distinguishing Difference from Disability: The Common Causes of Racial/Ethnic Disproportionality in Special Education:

In most school districts, the general and special education staff rarely interact with each other. Through our root cause process, we worked with a cross district team that included general and special education teachers, administrators, content specialists, etc., and more often than not there were disconnects in the conversation due to a limited understanding among practitioners regarding what constitutes a disability. General education teachers tended to express the belief that special education maintains the “magic fairy dust” that will “fix” the learning capacity and outcomes of students. Some of this belief may be due to the reality that prior to the addition of response to intervention in IDEA 2004, special education processes were perceived as organized to provide services to students who fell outside of the normal curve of academic performance.

Medicaid Waiver Cut

The Bloomington Alternative has a story about Medicaid waiver cut in Indiana. The peg is the plight of Ron Habney a 25-year-old man with autism. He has been getting services through Options for Better Living, a Bloomington nonprofit. Options employee John Willman has been accompanying Habney on his hikes -- a necessity to avoid violent outbursts.

In the early 1990s, Options started providing services to those with developmental disabilities through the Medicaid Waiver, which permits federal funds to be used for "an array of home and community-based services that an individual needs to avoid institutionalization." Among the requirements for assistance: "The recipient would require institutionalization in the absence of the waiver and/or other home-based services."

Medicaid has five waiver types, which are administered through state governments. In Indiana, the responsibility falls to the Indiana Family & Social Services Administration (FSSA), which distributes the federal funds to agencies like Options to hire professionals like Willman to care for folks like Ron.

The bulk of individuals served by Options falls under the Autism Waiver and the Developmental Disabilities Waiver, which includes conditions like cerebral palsy, Down Syndrome, Angelman Syndrome and others, Willman says. Most of the rest are covered by the Traumatic Brain Injury Waiver.

FSSA says the Autism Waiver helps individuals living with their families or in other community settings to "gain and maintain optimum levels of self determination and community integration."

The Developmental Disabilities Waiver helps individuals stay in their own homes or in community settings and assists those who "transition from state operated facilities or other institutions to community settings."

On Nov. 10, the State announced $34 million in new budget cuts, which includes a 5 percent cut in reimbursements to hospitals serving patients on Medicaid. The Associated Press reported the reductions came "in response to state revenue shortfalls and growth in the state Medicaid rolls."

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In January, their time alone together, and by extension Ron's hikes, will most likely come to an end.

Like nearly all Options houses, Ron's place houses two roommates and one support provider manning each of three shifts. Each roommate also has one-on-one time with individual providers every day. Ron and John's hikes are part of that routine.

Under the cutbacks, each house will now have three roommates, Willman says. And they are now classified on a scale of 1 through 6, with 1 needing the least support and 6 the most.

"When Ron's funding was reviewed recently, he was determined to be in a Category 3," Willman says, "which is kind of preposterous, given some of the behavioral issues he's had."

After an appeal process, Ron was reclassified to a 5, which Willman says leaves him wondering just what a 6 might be. But the chances that Ron will have any, let alone enough, time for riding in the car and hiking in the woods are slim.

"I can't stress enough what a catastrophe it's going to be for his life," Willman says. "I mean, basically his home will be his prison. He will not have freedom of choice. He will lose the routine."

Ron Habney's is but one story among dozens at Options, Willman notes. And the waiting list for others to even get services through the Medicaid Waiver is roughly seven years.

Isolation Rooms

Several posts have dealt with the issue of seclusion and restraint.

The Lincoln Journal-Star reports:

The way Lincoln Public Schools officials handled the education of a 10-year-old autistic boy violated federal special education laws and the student's constitutional rights, a lawsuit alleges.

LPS refused to change the boy's education plan despite the recommendation of an expert from Johns Hopkins University, the lawsuit filed Thursday in U.S. District Court in Omaha alleges.

LPS ignored evidence from the doctors at Johns Hopkins that the boy's behavior was better when he stayed in the classroom rather than being moved to an isolation room, according to the lawsuit.

Michigan Mandate Goes Down

AP reports:

The Michigan Legislature won't pass proposals requiring insurance coverage for certain autism treatments in the 2009-10 session.

Republican leaders in the Senate would not allow a vote on the proposal before finishing its voting for the year on Friday. The Democratic-run House had approved the measure last year.

Aggressive last-minute lobbying from Lt. Gov.-elect Brian Calley and other lawmakers could not persuade the Senate to take up the measure.

More than 20 other states have similar laws, but the Michigan measure is opposed by business and insurance groups that say mandating coverage would raise the cost of employer-sponsored health insurance.

Supporters of the measure say it's an issue of fairness and that it would save Michigan money in the long run.

Media, Autism, and Brain Scans

Following yesterday's post about autism screening, a new story has popped up. From US News HealthDay:

A type of brain imaging that measures the circuitry of brain connections may someday be used to diagnose autism, new research suggests.

Researchers at McLean Hospital in Boston and the University of Utah used MRIs to analyze the microscopic fiber structures that make up the brain circuitry in 30 males aged 8 to 26 with high-functioning autism and 30 males without autism.

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The study is published in the Dec. 2 online edition of Autism Research.

Dr. Stewart Mostofsky, medical director at the Kennedy Krieger Institute's Center for Autism and Related Disorders, called the study "intriguing." However, it remains to be seen if the test is sensitive enough to distinguish between autism and other developmental conditions that impact the brain.

"This is a very preliminary step and one that will require larger samples of children and a broader range of children with autism and other development disorders, particularly other developmental language disorders," Mostofsky said.

This piece is a good example of cautious reporting. Compare and contrast with the hype in the UK Daily Mail:

MRI scan that can tell you within minutes if your child is autistic

A brain scan which diagnoses autism in children in just ten minutes has been developed by scientists.

It would enable the condition to be detected at a much earlier stage so youngsters could begin therapy and treatment before they started school.

The test, which is almost 95 per cent accurate, uses Magnetic Resonance Imaging (MRI) scanners to show how well the different parts of the brain communicating.

"Rapid Test to Screen for Autism"

At the Mackinac Center, Jack McHugh writes:

Autism and treatment for its various complications is becoming one of the most discussed mandates. Autism is a brain disorder that affects three areas of development: communication, social interaction, and creative or imaginative play. In the past, autism has fallen under the broader category of mental health, but one of the latest state legislative trends is to pass a standalone autism mandate separate from mental health benefit mandates. Thus far, 25 states have passed autism mandates, but the number of bills introduced has grown each year. With advances in the diagnosis (including a new rapid test to screen for autism) and treatment, autism mandates will likely remain high on legislative priority lists.

According to Autism Speaks, 23 states have enacted autism mandates.

It is not clear what Mr. McHugh means by "a new rapid test to screen for autism." (As of this post, he had not responded to an email query.) He may be referring to the Rapid ABC screener, an assessment that researchers at Emory and Georgia Tech are developing. But this assessment is still a work in progress, and it purports only to identify children who may be at risk of autism. In any case, rapid screening measures have been around for some time. Diagnosis, which is different from screening, remains a much more elaborate process.

If he is referring to press reports this summer that British scientists had developed a 15-minute brain scan, the claim is badly mistaken. As an earlier post explained, press reports were misleading -- as they often are when it comes to autism science. The British National Health Service said of the study in question:

This small preliminary study is a valuable contribution to the search for a better way of identifying autism, a condition that can be difficult to diagnose due to its wide range of causes, types and symptoms. However, it is not possible to say at present whether such a technique could replace or even aid current diagnostic methods in the near future. Far bigger studies comparing the brain scans of larger numbers of people with ASD and those without the condition are now needed to assess whether this scan is accurate enough for widespread use.

If Mr. McHugh gets in touch and explains that he was referring to something else, I will of course update this post.

UPDATE: Mr. McHugh did send me an email noting that the paragraph was actually a quotation from a piece by the Council for Affordable Health Insurance, an industry group. I will email the author of the original piece.