The Cost of Educating Special-Needs Students

Associated Press reports:

The high cost of educating students with special needs is disproportionately falling on traditional public schools as other students increasingly opt for alternatives that aren't always readily open to those requiring special education.

The issue is particularly acute in districts where enrollment has declined due to demographic changes such as low birth rates and population shifts combined with an influx of charter schools and voucher programs that have siphoned off students.

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While the number of students with special needs has not increased, the rising proportion has driven up costs for cash-strapped schools. Special education, which requires speech pathologists, psychologists and trained teachers, and sometimes special facilities and equipment, can cost four times more than general education. Federal funds only cover a fraction of the extra expense.

Charters take students with disabilities, but the students with more intense needs tend to go to the traditional public schools:

Special needs enrollment in Philadelphia district schools and charters is roughly 14 percent, but about half the district's pupils with special needs have severe disabilities compared to about a third for charters.

Charter proponents say schools do not turn away kids with disabilities or ask if an applicant has disabilities, which is illegal, and note that in six states — Nevada, Wyoming, Iowa, Ohio, Virginia and Pennsylvania — charters serve more pupils with special needs than local districts

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Parents like Matthew Asner, whose 9-year-old son with autism attends a traditional Los Angeles Unified school, hope the issue gets figured it out soon. He'd like the fourth-grader to go to charter middle and high schools, but knows it's a challenge to find one that accommodates autistic students and has openings.

"I don't think we've got a good handle on this," said Asner, who is executive director of Autism Speaks , an advocacy organization. "We don't want to see this kind of exclusion."  [ed. note: He is the executive director of Autism Speaks for Southern California.  Liz Feld is the CEO of the national organization.]

People in the autism community may wonder about the claim that the absolute number of special-needs students has not risen.  But consider data from The Digest of Education Statistics.

Between the 1999-2000 and 2009-2010 school years, the number of children getting services for autism soared from 65,000 to 378,000. But the numbers dropped in several other categories: for instance, intellectual disabilities went from 600,000 to 463,000.  While not conclusive, these numbers are consistent with the idea that diagnostic substitution accounts for at least part of the rise in autism numbers.  In any case, the total number of students getting IDEA services peaked several years ago.

Ethics and the Corby Case

Sorry for the multiple posts on this topic.  But as an autism dad and organ donor (kidney), I have more than the usual interest.

At First Things, Wesley Smith writes:

Wait a minute. Without the surgery, he will probably die. Risk the behavior issues.

If someone’s mental condition makes it unlikely they will be able to care for themselves properly after transplant to the point of becoming medicallycompromised, it could be one thing, given the current triage for organs. But we should not deny transplants simply because of things like autism, Down syndrome, or invidious ”quality of life” judgmentalism. That denies human exceptionalism and unacceptably discriminates against those with mental illnesses and developmental disabilities.

A Fence

It's obvious that autism involves such issues as education, health care, and insurance.  But as we've seen, it also involves issues with which we might not normally associate it, such as air transportation and firefighting.  For instance, land use and contract law come into play. WBBM in Chicago reports:

AP Covers the Heart Transplant Story

The Associated Press is covering the story of Paul Corby, the young ASD man who did not qualify for a heart transplant, in part because of his ASD.

One expert on medical ethics said it's legitimate for the mother to raise the point, but there's an even bigger one, too.

"The thing to keep in mind is if more of us would sign donor cards, there would be less pressure to reject anybody. It's the huge shortage of hearts that really drives this problem," said Arthur Caplan, head of the Division of Medical Ethics at New York University's Langone Medical Center.

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Mindful of a similar incident in Philadelphia where a New Jersey family's daughter was denied a kidney transplant because of mental disabilities — a decision that went viral online — [Karen] Corby began her own online petition.

"There has been a huge outpouring of support from Autism groups all over the country," she said in an email to The Associated Press, noting that the number of signers has jumped from 1,500 in April to just more than 13,000 on Thursday. "I would not have found the strength to continue fighting had it not been for them."

AP coverage makes a huge difference in gaining prominence for a story.  As of 4:07 PM PDT, more than 55,000 people had signed. 

On YouTube, a person with cerebral palsy endorses the petition:

Partnership in Utah: Money is Slow to Arrive

A previous post described the Utah partnership program that has been short on private-sector donations so far. The Salt Lake Tribune reports:

Elected leaders celebrated Wednesday a public-private partnership that will fund a new autism treatment pilot, but the exact financial commitment by a Utah bank and insurance companies is yet to be disclosed.

Only Intermountain Healthcare said after a press conference at the state capitol that it planned to contribute $500,000 to the two-year program. The state has yet to receive any donations.

A Regence BlueCross BlueShield representative attended but said the company does not plan to contribute to the pilot, having contributed $450,000 through its foundation to an autism program at the University of Utah last year. Zions Bank has said it will make a donation but has declined to specify the amount.

Altius was named as a donor in a press release but did not attend the conference and did not return a call for comment.

DSM-5 and Insurance in Illinois

A previous post discussed Illinois legislation to prevent ASD people in Illinois from losing insurance coverage if they lose their diagnosis under DSM-5. The Elmhurst Patch reports:

Elmhurst Mayor Pete DiCianni was at the Thompson Center in Chicago Thursday, Aug. 16, to witness Gov. Pat Quinn sign Senate Bill 679. The new law ensures children diagnosed with autism will not lose their insurance coverage.

In its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the American Psychiatric Association is proposing a more specific set of indicators for a diagnoses of autism. The reason for the change is to help ensure more targeted treatments, but the new definition threatened to take away coverage for some 20,000 children.

SB 679, a bipartisan effort, "grandfathers" those children in so their insurance coverage won't be cut off. It will ensure them continued coverage of up to $36,000 a year and unlimited doctor and and therapy visits.

A Plane and an iPad

Air travel can be tough for people on the spectrum, as previous posts have explained. ABC News reports:

A teenager with autism, flying on American Airlines, was nearly forced to turn off the iPad she uses to communicate.

Carly Fleischmann, who has been profiled on ABC News, was flying from Los Angeles to her home in Toronto on Aug. 10 when she was approached by a flight attendant who told her she needed to turn off her iPad during takeoff. The trouble is, if Fleischmann can't use her iPad, she can't communicate. Because of autism, she cannot speak.

Howard Dalal, Fleischmann's aide and lead therapist, was with Fleischmann on the flight. He told ABC News Fleischmann suffers from Oral Motor Apraxia, which means her thoughts are clear in her mind, but they get jumbled on the way to her mouth. She lacks the fine motor skills to use a pen, and only knows a little sign language. She types with one finger.
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The flight attendant who approached Fleischmann was eventually overruled by the pilot, who said Fleischmann could leave her iPad on. Dalal said they met up with the pilot again at customs in Toronto, and he told Dalal and Fleischmann that the policy was "ridiculous." Further, Dalal said that the pilot said the pilots themselves use iPads during takeoff and landing.

"There is virtually no evidence that any consumer electronics can or have had any deleterious effect on the aircraft systems, and least of all would be an iPad in airplane mode," said John Nance, ABC News aviation consultant. "The slavish 'we're just following orders' response of airline personnel in the face of unusual challenges is sad at best, and reprehensible at worst."

Troubled Security at CA Developmental Centers

Previous posts have discussed severe problems at state-run institutions.  California Watch reports:

The in-house police force at California’s institutions for the developmentally disabled is searching for a new chief as scrutiny of its work on criminal investigations intensifies.

After two years in the top job, Corey Smith received a demotion to second-in-command for the force, the Office of Protective Services. David Montoya, police commander at the Porterville Developmental Center, is serving as interim chief, according to the state Department of Developmental Services’ website.

The department, which oversees the centers and the police force, has repeatedly hired police chiefs with little to no background in law enforcement.

In its job posting, released Aug. 6, the department said applicants need “extensive management experience directing uniformed peace officers and investigative operations.” However, the posting does not detail how many years of police work or what level of education the next chief must have.

The personnel moves come as state lawmakers last week ordered the California State Auditor to examine the police force’s operations [PDF]. The Office of Protective Services is responsible for protecting nearly 1,700 patients with cerebral palsy, mental retardation and severe autism at five state-run centers in Los Angeles, Sonoma, Orange, Riverside and Tulare counties.

In an ongoing series of stories this year, California Watch has reported that detectives and patrol officers at the institutions routinely fail to conduct basic police work, even when patients die under mysterious circumstances

Seclusion Confusion in Florida

A fog of uncertainty and confusion surrounds many of the statistics on autism and general disability. Following a report from last week, State Impact reports on the latest example:

Last week, we posted data we received from the Florida Department of Education on the instances of student seclusion and restraint in Florida schools.
Readers chimed in saying they’ve seen different data. And we’ve figured out why.

The Florida Department of Education keeps two sets of student seclusion and restraint data.

Every incident is supposed to be recorded in both reports. But the FLDOE says school districts may not know that.

One set of FLDOE data shows more than four times as many students were isolated in seclusion rooms than a second set of data we used, the School Environmental Safety Incident Report (SESIR).

Neither of those figures probably reflects the total instances of seclusion and restraint, though state officials say school districts should be recording incidents of seclusion and restraint in both reports.

ASD and a Heart Transplant

An earlier post dealt with Paul Corby, a 23-year-old man facing denial of a heart transplant in part because he has ASD.  Left Brain/Right Brain reports:

Earlier this year a story came out about a child being denied a transplant due to developmental disability. Now we have a story of an autistic adult possibly being denied a heart transplant due to autism. In Medical debate: Should autism block a man from getting a heart transplant? we read:

Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems – he has a form of autism – are severe enough to make him a bad candidate for a heart transplant.

How characterizing him as having a “flawed mind” is helping, at all, is a good topic for discussion on its own.

Jonathan Dobrer puts a provocative frame on the issue:

A spokeswoman for the hospital said, "The physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment."

This is a phrase of such cruel and ironic bureaucrat-ese that it defies parody. Disclosing the reasons for allowing him to die would be "unkind" but allowing him to die is, well, what: Kindness itself?

Yes, Paul is quirky and geeky. He plays video games, has written one self-published novel and is working on another. He seems to have a mental and intellectual quality of life worthy of continuing. As a person with autism, he has developmental issues and is not always socially appropriate, according to our normal rules. None of his behaviors seems to warrant the death penalty, which is exactly what the University of Pennsylvania Hospital is imposing by its refusal to treat.

Delaware Mandate

WCAU in Philadelphia reports (with text by AP)::

A new law in Delaware requires that individual health insurance plans provide coverage for the diagnosis and treatment of autism spectrum disorders.

Legislation being signed by Gov. Jack Markell on Monday requires coverage and treatment of autism spectrum disorders in individuals under 21 years old.

Senate Bill 22 also prohibits insurers from terminating or refusing to renew coverage to an individual solely because the individual or a family member is diagnosed with one of the autism spectrum disorders or has received treatment for autism spectrum disorders.

 

More detail from Autism Speaks:

Sponsored by Senators Liane Sorenson and Catherine Cloutier, S.22 requires up to $36,000 in coverage for Applied Behavior Analysis (ABA), an evidence-based, medically necessary autism therapy. The law takes effect in four months as each state-regulated health plan is renewed or offered.

“Governor Markell has demonstrated leadership on an issue of critical concern to thousands of Delaware families,” said Lorri Unumb, Esq, Autism Speaks vice president for state government affairs. “His leadership is also now being felt nationally as chairman of the National Governors Association (NGA) through his support for expanding employment opportunities for the disabled.

Seclusion in Ohio and Florida

A number of posts have discussed restraint and seclusion in public schools. At ThinkProgress, Aviva Shen writes of Ohio and Florida:

To discipline misbehaving students, public schools in Ohio and Florida regularly send children to “seclusion” — isolation in a locked cell-like room, old office, or closet,NPR’s State Impact reports. Many of these children are special needs students and their parents are not always told of this disciplinary practice.

Ohio schools — where seclusion is almost completely unregulated — sent students to seclusion rooms 4,236 times in the 2009-2010 school year. Sixty percent of these students had disabilities.

Florida schools secluded students 4,637 times in 2010-2011 and 4,193 in 2011-2012. 42 percent of seclusions were for pre-K through 3rd graders. In the 2011-2012 school year, 300 seclusions lasted more than an hour. The state has just three stipulations for using seclusion rooms: teachers may not choke or suffocate students, the room must be approved by a fire marshal, and the lights must be left on.

A joint report by StateImpact and Columbus Dispatch report found rampant abuse and lack of training of the punishment, which is meant as a last resort to deal with violent children...

Autism Speaks and the Presidential Race

The 2008 campaign was the first in which presidential and vice presidential candidates spoke at any length about autism. (Hillary Clinton, in particular, had a record on disability policy dating back to her early work with the Children's Defense Fund.)  The issue has come up again in the 2012 campaign. A message from Autism Speaks:

On November 6, 2012, voters across the United States will go to the polls to elect our next President and a new Congress. Autism Speaks is asking all candidates seeking to serve our country after this election to advance a federal autism policy that will commit to these following principles:

• a national plan to address the autism crisis with urgency
• principled leadership to guide the federal response to autism
• accountability for results from the federal research investment

A summary of our 2012 policy principles is here.As a tax-exempt organization, Autism Speaks does not endorse any candidates for federal office. As an informational service to the autism community, we will, from time to time, post video or other content showing how autism-related issues are being discussed in the 2012 campaign.

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