Autism and the Military

Susan Moffitt writes at Autism Key:

Recent statistics indicate that one in eighty-eight children of active duty service members are affected by autism and less than ten percent of these children are receiving the care and attention they so need and deserve. Military insurance or TRICARE, currently has an overabundance of red tape that takes months and even years to negotiate — precious time lost in the quest for early intervention. And existing ABA coverage is capped at half the number of recommended hours of treatment per week.

The Caring for Military Kids with Autism Act seeks to rectify this situation by eliminating this cap and streamlining access to services. It also extends autism services to dependents of military retirees.

Congressmen John Larson (CT) and Walter Jones (NC) introduced the bill in June after a grassroots effort by wives of servicemen brought this crisis to the attention of Congress. These staunch advocates point out that challenges of autism, coupled with the lack of access and cost of treatment, can push their families to the edge. After years of active duty, no one wants to tell their spouse they can’t retire and must return to the war zone in order to pay for their child’s autism treatment.

To find out how you can support the Caring for Military Kids with Autism Act go to http://cmkaa.wordpress.com/

More from the TRICARE site.

See American Military Families Autism Support website, blog, and Facebook page.

Tough Times in the English-Speaking World

Fiscal constraints are affecting autism programs around the English-speaking world.

A case in Ireland, from the Irish Times:

THE LAST school in the State providing specialist Applied Behavioural Analysis (ABA) education to children with autism has closed, despite promises from Ministers Eamon Gilmore, Ruairí Quinn and James Reilly when in opposition that they would support ABA education.

The Achieve ABA school in Donaghmede, Dublin, which has been providing such education since 2006, closed yesterday as the parents of the eight children there could no longer afford to pay for it.

It has never received direct State funding. Up to now it has been funded in part with the home tuition grants, to which some of its pupils were entitled, and through fundraising. The grant is available to children with special needs between the ages of two and five years.

The funding shortfall had grown to €100,000 a year and, said Pat McCormack, parent of Méabh (5), “that is just not sustainable”.

The ABA method involves analysing the child’s skill levels and applying intensive one-to-one teaching which breaks down whole tasks into small, achievable steps. It applies particular methods to each child’s needs.

Though there were 13 such schools in the State, none was supported by the Department of Education, which says ABA is not “within the department’s policy parameters”.

All have now closed.

From the Waikato Times in New Zealand:

Parents of children with autism have been left angered and upset by the news Autism Waikato will close.

Six paid staff have been left without jobs, and more than 700 families no longer have the support network of the organisation.

Carolyn Jury, whose teenage son has Asperger's syndrome, was "disgusted" that the branch had to close due to a lack of funding.

...

Hamilton-based Labour MP Sue Moroney said funding for not-for-profit organisations had worsened since National made agencies reapply for funding each year through its community response fund.

"Autism NZ has successfully got money for that every year until this year because they have been told it's not regarded as a social service, it's more of a health service and it needs to be funded by a different budget."

BBC reports on a case from Wales:

A psychology professor has accused council officers of presenting inaccurate information to justify closing a unit for autistic children.

Council officers say the Westwood Primary School in Buckley, Flintshire, has not succeeded.

But Prof Richard Hastings says Bangor University research proves the claims inaccurate.

Opponents of closing the unit accused council officials of "unfounded claims, flawed evidence and misinformation".

A report to members of Flintshire council's executive argues children at the Applied Behavioural Analysis (ABA) unit "often fail to generalise... skills they have learnt".

It says unnamed parents complained the unit "restricted the development of their child's independence skills" and left them with "increased dependency on adult support".

Parents supporting the unit say that is not true and have been backed by Prof Hastings who previously oversaw the Westwood ABA unit.

More on Wales here.

The Autism Society and the Grassroots

A statement from Scott Badesch, Autism Society President and COO:

New Government Affairs Committee emphasizes strength of local chapters

It is a pleasure to serve the Autism Society. It is a great honor and privilege to serve as the President and Chief Operating Officer of the Autism Society. I strongly believe there is no better-positioned grassroots organization existing in the United States to best represent the needs of all those affected by autism. To best serve these individuals, the Autism Society is advancing its government and public policy efforts to enhance the active involvement of its 150 chapters, members and all those involved with the organization to help define its yearly legislative agenda.

The Autism Society has a volunteer led committee, co-chaired by national board members Andrew Baumann and Jon Basinger, who help define, upon the suggestions of Autism Society’s constituents, the organization’s top three to five legislative priorities. I am certain you will regularly hear about the work of this committee and how you can help decide the legislative priorities and then assist with their implementation. The Autism Society will also engage personnel at government entities and elected officials in discussions on how best to fully incorporate the needs of those living with autism into all aspects of daily life in a community and throughout the nation.

We need to move beyond simply advocating within the autism community to advocating throughout all aspects of society. Our current effort is to get our nation fired up that more than 80 precent of adults with autism are unemployed. We are a nation that finds a 9 percent unemployment rate for the general working public unacceptable, but often times, as a nation, we’re less likely to speak out against unemployment rates among adults with autism. The same holds true with housing, poverty prevention, and insurance coverage.

For more information about the Autism Society’s public policy campaign, Vote4Autism, please visit www.vote4autism.org.

Autism, Alzheimer's, and Wandering

Autism and Alzheimer's are both brain disorders. One becomes evident early in life, while the other tends to occur late in life. There are many other differences between the two, but one important similarity is that both result in wandering, which is a challenge for caregivers and law enforcement. A release from the Boston Police Department:

North Star Personal Alert Program will assist Families and First Responders in Locating Missing Loved Ones with Special Needs such as Alzheimer’s and Autism

Today Mayor Thomas Menino and Boston Police Commissioner Edward Davis announced a new safety initiative designed to assist local families who are caring for loved ones with special needs and medical complications. Created by the Boston Police Department (BPD), The North Star Personal Alert Program is a voluntary program for parents, guardians or caretakers of children and individuals that may have a tendency to wander or are a flight risk from a specific location, such as their home, school, or nursing home. The program is designed to help individuals that may have a difficult time communicating with First Responders and, in some cases, do not understand the potential danger he/she may be in. The Program is geared towards, but not limited to, children and individuals with Autism/Autistic Spectrum Disorders and individuals with Alzheimer’s disease.

“The North Star Personal Alert Program demonstrates our ceaseless commitment to ensuring the safety and security of our community’s more vulnerable residents,” Mayor Menino said. “I strongly encourage the many dedicated and loving families, who care for loved ones with special needs, to utilize this free and voluntary service.”

A comprehensive database compromised of information provided by the parents, legal guardians or caretakers will be used by the BPD and other emergency services in Boston and the surrounding areas as necessary to ensure the welfare of the individual at hand. Through the Boston Police Operations Dispatch System the information parents or guardians provide will be available to Police Dispatchers and Police Officers throughout the City of Boston. The Program, utilizing the photo and information provided, will assist First Responders in identifying and communicating with the person in need to make sure the individual receives the necessary assistance.

“This newly designed initiative is another important tool in our comprehensive approach to providing the citizens of Boston with the most effective and efficient safety services,” said BPD Commissioner Edward Davis. “I hope local families will take full advantage of this program and assist First Responders with the safe return of loved ones.”

When deemed appropriate, the BPD will issue an informational bulletin that may include a photograph and relevant biographical, descriptive and certain individualized information about the missing person. This bulletin may be distributed to both Law Enforcement and private sector security partners in an effort to locate the person.

The Personal Alert can be used two ways:

1. If a child/individual wanders or runs from a location, first and foremost a call should be placed to 911 stating the nature of the emergency and that the child/individual is enrolled in the North Star Personal Alert Program and has wandered or ran from a location.

1. A Police Officer may observe a child/individual that they perceive to be in need of assistance or at risk and is incapable of communicating; officers can query the system by name or physical description through the Operations Division narrowing it down to the child/individual that they perceive to be at risk or in need of assistance.

Enrollment is easy. The process requires parents/guardians to complete a registration and release form that include biographical, descriptive and certain individualized information such as communication methods and sensory issues; as well as pertinent contact information. NOTE: the child/individual will need to be present at the registration session.

Community members can enroll by contacting the Boston Police Department North Star Program at 617-343-6503 ornorthstar.bpd@cityofboston.gov. Boston Police will information interested families on upcoming registration drives to be held across the city

Argument for Michigan Mandate

Phil Weaver writes at the Business Review of West Michigan:

Despite the strong medical evidence, fears about rising insurance costs continue to cloud the facts. A recently published article in the Journal of Autism & Developmental Disorders estimates that insurance premiums would only be affected by 1 percent — that translates into 55 cents per payer per month. That’s not a lot of money for invaluable gains to the children, their families and society.

What’s even more staggering is what autism costs society. According to the Archives of Pediatric and Adolescent Medicine, we pay $3.2 million to care for an individual with autism over his/her lifetime. The largest direct cost is adult care for individuals unable to work or live independently. The Autism Society estimates those costs can be reduced by two-thirds based on the 2007 Government Accountability Office Report on Autism — that’s a savings of more than $2 million.

Michigan businesses could also benefit from insurance coverage. Parents who have children with autism are leaving their jobs and moving to states with autism coverage because they can’t wait for Michigan to catch up. Others are forced to reduce their hours due to child care issues or need to stay home all together. Coverage would not only retain these employees but increase productivity.

CARA Update

S. 1094, the Senate version of the Combating Autism Reauthorization Act, so far has 22 cosponsors.

HR 2005, the House version, has 50 cosponsors.

From the Autism Speaks blog:

The U.S.Senate Committee on Health, Education, Labor and Pensions (HELP) will meet on August 3 to act on S.1049 [sic, it's S 1094] , the Combating Autism Reauthorization Act (CARA), which is sponsored by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY.) In very short order, 21 other Senators have signed on as co-sponsors of this bill, which enjoys wide support from both Republicans and Democrats. That’s the case as well in the House of Representatives, where a companion bill (HR.2005) has been introduced by Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA.)

The August 3 Senate hearing is a critical early step in renewing the Combating Autism Act of 2006. The hearing will enable the 22 Senators who are members of the HELP committee to offer their input. This body must act on the bill in order to get it before the full Senate, important steps to getting it cleared by the House and sent to the President’s desk by September 30. Until the committee approves the bill, the full Senate will be unable to act.

The autism community is fortunate that nine members of the Senate HELP committee, including ranking member Senator Enzi, are sponsors of CARA. But sponsorship is not enough. These Senate members, along with 10 other committee members who voted for the original 2006 act, must demonstrate their support at the August 3 hearing for a strong continued federal role for autism research, treatment and services.

...

The CAA authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. It required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.

The 2006 law established autism as a national health priority and increased funding, leading to significant advances in our understanding of autism. But all of that progress could grind to a halt September 30 unless Congress sends President Obama a bill reauthorizing the Combating Autism Act. CARA would continue federal funding at current levels – that’s $693 million over the next three years dedicated exclusively for autism-related work by the National Institute of Health, the Centers for Disease Control and Prevention, and other federal agencies. The President already has promised to sign a reauthorization bill this year.

You can help. Visit our CARA Action Center where we will help you send a clear message to the members of the Senate HELP Committee. Sponsoring the bill is not enough—your Senators need to show up August 3 to carry the nation’s fight for answers to autism.

Casual Mention of Autism in Mass Murder Story

In a report on the mass murder in Norway, the BBC quotes Professor Jeremy Coid, professor of forensic psychiatry at Queen Mary college, on the suspect:

If we are talking about someone who was cut off socially, "this would indicate a more schizoid personality - an highly functioning individual with a form of autism, and an increasing obsession with right-wing ideology.

"I will put my money of him being a deluded and paranoid individual, however.

Anne Dachel writes:

This was one of the most outrageous statements I’ve ever read. Why would anyone speculate that this mass murderer would be autistic because of his anti-social behavior? A generation of children today struggle with autism and the medical community and health officials do little to address their needs.

The BBC is putting the idea in the public’s mind that someone with high functioning autism fits the profile of a murderer.

The professor's casual speculation brings to mind similarly unfounded remarks about the Virginia Tech shooter, who did not have autism, but an entirely different disorder.

It is also odd that Dr. Coid seems to equate autism and schizophrenia, which are different.

People with autism are more likely than neurotypical people to be crime victims, not crime perpetrators. It is unfortunate, then, that the news media speculate about autism as a cause of crime. The entertainment media do something similar by using autism as a plot gimmick. An episode of "Law and Order: Criminal Intent," for instance, featured a killer with Asperger.

Looking for a Cure

The Staten Island Advance reports on Eileen Phoenix, a local woman with an ASD daughter:

Like a growing number of people today, Ms. Phoenix has taken a total natural healing approach toward treating her child: A gluten-free diet. Supplements. Sensory integration. Auditory integration.

After Kasey seemed to have favorable results with craniosacral therapy, a form of massage, Ms. Phoenix went to school to be trained in this technique. What originally began as an effort to save money turned into a career as an acupuncturist with her own practice, Clear Light Acupuncture, in her home.

The mother also tried experimental treatments, many of which are not approved by the United States and cost thousands of dollars.

“I’ve walked into bars at midnight with a coffee can and her picture to try to raise money for her,” she said, noting other people, such as Ms. [Nicole] McDowell, also have helped her stage fund-raisers to pay for these costly procedures.

According to Ms. McDowell, a principal at You and Me School for Children with Autism in Edison, N.J., many parents of autistic kids turn to experimental treatments, “desperate to find anything that might improve their child in the slightest.”

While the Eltingville resident says she “can understand how these families feel about their children and how they’re willing to do almost anything,” as a BCBA, she counsels them against such therapies. Not only are they expensive, she said, but there also is no empirical evidence proving their effectiveness — though, it seems, Kasey did improve after two particular procedures.

Ms. McDowell explains that at age 4 Kasey had plateaued in identifying colors and only was able to determine the difference between red and blue after going to auditory integration therapy.

The second major advance happened when Ms. McDowell accompanied the family on a trip to the Bahamas, where Kasey, then 8, was injected with embryonic stem cells.

After that, she had a giant leap, from speaking one sentence to about 50, and being able to identify kids at her school, which she couldn’t do before.

While Ms. McDowell said she “cannot say the improvement was a direct result” of these therapies, the records she keeps on Kasey do show the girl had a boost in learning afterward.

“But again,” she stressed, “this is not supported by research at all.”

The Sacramento Bee reports on the mother of one boy with ASD and another with epilepsy. She heard about stem cell therapy in Panama:

At one such facility, the Stem Cell Institute in Panama, stem cells from human umbilical cords collected from donors are used to treat autism.

The website promises: Stem cells are capable of regeneration and differentiation, once injected, they can "follow inflammatory signals from damaged tissues and have multiple ways of repairing those damaged areas."

My calls and emails to the institute went unanswered.

There are many unknowns when it comes to stem cell-based therapy and its potential to treat autism, said Dr. Michael Chez, director of Pediatric Neurology at the Sutter Neuroscience Institute in Sacramento.

Stem cell-based therapy is steeped in mystery for the average person, and they tend to think of it as a cure-all, said Chez, who also is Dylan and Devon Le's physician.

"Everybody has stem cells in their body, and as we age, they may be more and more difficult to access," he said.

Stem cells can't just be inserted into the body and magically evolve into a spare part or the thing you need it to become, he said.

"Many things have to happen first before they become able to change," he said.

...

"A lot of people who are desperate might seek this out in other countries because they're not as regulated as this country is," Chez said.

He anticipates leading a controlled study involving cord blood and autism by the end of the year.

"A controlled study needs to be done looking at patients given essentially a placebo vs. the cord blood, and we are designing such a study," he said. "If anybody were to have done this anywhere, it would add validity to this type of treatment."

In the meantime, parents should be very cautious of offers of autism "cures" that proliferate on the Internet.

"There have always been people trying to offer false hope to people with autism," Chez said. "Unless it's being done in the U.S. or in a medical center in a controlled study or in some type of valid research study, be careful. Going anywhere outside of those environments probably means you're giving your money away without any kind of guaranteed success.

"I understand the desperation, but the Internet is not policed with scientific information."

Autism in South Asia

The BBC reports:

A two-day international conference on autism has begun in the Bangladeshi capital, Dhaka.

Experts and policy makers from around the globe will focus on promoting awareness on autism in Bangladesh and other South Asian countries.

The standard of diagnosis and care for autistic children in the region are said to be basic.

...

Bangladesh doesn't have specific data on those affected by autism but officials estimate that around 150,000 children may be classified as autistic.

"In a country like Bangladesh, we don't have the institutional facilities to diagnose what is the status," says Farah Kabir, from the aid agency Action Aid Bangladesh.

"If a family is fortunate enough to be able to afford to take an autistic child to a specialist hospital, then when they come back they don't have the facilities to follow up."

She says the most important thing is to create awareness that autistic children can be found as in many parts of the globe and how to deal with these children on a day-to-day basis.

During the two-day conference, the participating countries will also establish South Asia Autism Network to identify solutions to common challenges faced by each country and to provide training and conduct further research on the subject.

High-profile personalities like the Bangladeshi Prime Minister, Sheikh Hasina, and leader of India's governing Congress party Sonia Gandhi will be addressing the conference.

The [Dhaka] Daily Star reports:

A seven-point Dhaka Declaration on Autism Spectrum Disorders and Developmental Disabilities adopted Monday called for promoting stronger coordinated actions in the region and globally towards the improvement of the access and quality of healthcare services for individuals with autism and developmental disorder.

The declaration read out by Sri Lankan First Lady calls for increasing awareness of the rights of the children with developmental disorder and highlighting social responsibilities to persons with such disability

It stresses on strengthen health system capacities to address the needs of the children with developmental disorder and their families.

It calls for improving capacities of professionals involved in provision of integrated care services for children with developmental disorder at various levels, from primary healthcare and communities to socialized services.

The declaration asks for mobilizing and allocating increased human and financial resources for healthcare of the children with developmental disorder and gradual implementation of the identified priority actions.

California and an Autism Literature Review

California illustrates what happens when there is a delay in assembling a literature view: the literature changes in the meantime. From the Department of Developmental Services:

Draft ASD Research

The Department of Developmental Services (Department) has undertaken a multi-year effort to compile the research on evidence-based interventions to assist families and service providers in meeting the treatment needs of individuals diagnosed with an Autism Spectrum Disorder (Draft Autism Spectrum Disorders (ASD) Best Practice Guidelines for Effective Interventions). The Department began work on guidelines in 2006, and while we had anticipated publishing the guidelines in 2009, the contract was cancelled on two separate occasions to comply with Governor's Executive Orders suspending State contracts. Publication of the guidelines was also affected when the National Standards Project (NSP) published their intervention guidelines. The NSP provided the data review for the behavioral and educational interventions chapter of the Department's guidelines. Shortly before they published their guidelines, the NSP made significant changes to the rating criteria, format, and presentation of their data review. This required a complete reexamination of how the behavioral and educational intervention research was compiled for the Department.

Unfortunately, the four year delay in developing the guidelines has created a gap in the research on which they are based, making them not current. Specifically, the research covers the scientific literature published prior to June 2007. Over 1,000 articles on autism interventions have been published since June 2007. Approximately 200 of these articles meet the scientific rigor used in the Department's guidelines and are being reviewed by the contractors. In light of the significant research being conducted on autism spectrum disorders and how this research influences treatment options, the Department wants to ensure the final guidelines are based on appropriate and updated information.

The Department is committed to furthering its longstanding Autism Initiative and greatly appreciates your ongoing interest and commitment to individuals with autism.

Please select from the following links below for the draft research:

1. Evaluating the Scientific Evidence for Interventions for ASD
2. A Review of Educational and Behavioral Interventions
3. A Review of Pharmacological and Complementary and Alternative Medicine Interventions
4. A Review of Interventions for Adults with ASD
5. Scientific Merit Rating Scale
6. Treatment Effects Rating
7. Strength of Evidence Classification System
8. List of Articles Included in the Pharmacological and CAM Intervention Review
9. List of Articles Included in the Adult Intervention Review
10. Glossary

Public Comments:

The Department's contractors will be asked to review the public comments received as well as update their review of the scientific literature before the Department publishes final guidelines.

Please try to keep comments clear and concise. Please refer to specific section(s) and page number(s) when commenting on specific content. Please note that the research articles utilized for this draft were published prior to June 2007 and had to meet rigorous scientific research standards in order to be reviewed and rated. Other criteria for including or excluding information included the following:

• Materials that were reviewed were limited to published, first-hand reports of experimental research that tested the effectiveness of an intervention.
• Research was published in a peer-reviewed, scientific journal.
• Research focused specifically on autism spectrum disorders.
• Interventions targeted individuals with ASD.
• Only research articles published in English were reviewed.

If you believe that an article published prior to June 2007 met the criteria outlined above and was not included in a review, please provide us with the complete article citation (author(s), title of article, title of journal, volume number, issue number, date, pages) and DDS will attempt to discern why the article was not included. Please note that, because DDS did not conduct the Review of Educational and Behavioral Interventions (it was conducted by the National Standards Project), DDS does not have the ability to determine if or why a specific article was not included in that review.

Comment Submission:

The public may submit comments electronically to ASDResearch@dds.ca.gov or mail comments by September 1, 2011 to:

Department of Developmental Services
Community Services & Supports Division
1600 9th Street, Room 330, M.S. 3-8
Sacramento, CA 95814
ATTN: ASD Research Comments

IDEA Full Funding Act

Congress has never fully funded IDEA. Notwithstanding the failure of similar legislation in the past (as well as severe fiscal problems), Senator Tom Harkin has introduced S. 1403, the IDEA Full Funding Act:

From the Council for Exceptional Children:

On July 21, champions of special education in the Senate introduced important and responsible legislation that honors Congress’s commitment to fully fund the Individuals with Disabilities Education Act (IDEA) – the IDEA Full Funding Act.

Led by longtime disability advocate and recent CEC Outstanding Public Service awardee, Senator Harkin (D-IA), the IDEA Full Funding Act was introduced with the support of thirteen additional Senators -- Senators Durbin (D-IL), Lautenberg (D-NJ), Blumenthal (D-CT), Murray (D-WA), Whitehouse (D-RI), Leahy (D-VT), Bennet (D-CO), Franken (D-MN), Mikulski (D-MD), Reed (D-RI), Shaheen (D-NH), Johnson (D-SD), Begich (D-AK) – and the endorsement of CEC and other national organizations. Read Coalition Letter

Over the last 35 years, CEC has consistently led the effort for full funding for all parts of IDEA. This year, with state and local budgets tighter than ever, CEC applauds these Senators for standing firm in their commitment to full funding for IDEA even as pressures mount to cut federal spending from critical programs. Urge your Senators to support the IDEA Full Funding Act!

Since originally enacted in 1975, IDEA has consistently strengthened schools across the nation and, most importantly, allowed children and youth with disabilities to access the general curriculum—in many cases learning side-by-side with their peers. It has also allowed more children and youth with disabilities to graduate from high school and transition to bright futures. Overall, IDEA has improved outcomes for millions of students.

This bill is a responsible offering to the discussions about funding IDEA. It would gradually increase the funding for IDEA over 10 years, reaching full funding in 2021. It is also entirely paid for by an increase in tobacco taxes, meaning it would not deplete the general fund. For more information about how the bill is responsibly funded, read Fact Sheet.

The Wandering Code

Wandering has been an issue in the autism community. From the Centers for Disease Control:

The ICD-9-CM code for wandering , effective October 1, 2011, is designed to promote better data collection for and understanding of wandering and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.

Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations—making this an important safety issue for individuals affected and their families and caregivers. Children and adults with ASDs and other developmental disabilities are at higher risk of wandering off than are children and adults without these disorders or other cognitive disorders.

At the request of the Interagency Autism Coordinating Committee, a Safety Subcommittee was convened to address wandering and other safety issues for children and adults with ASDs. CDC, as a member of the Subcommittee, submitted a proposal for the wandering code to the ICD-9-CM Coordination and Maintenance Committee for consideration at the March 2011 meeting, which represented the final opportunity for additions/revisions to the ICD-9-CM until 2014. As part of the Coordination and Maintenance Committee’s usual procedures, proposals were open for public comment for 4 weeks, and revisions to the ICD-9-CM were announced online on June 10, taking effect October 1.

This code is intended to capture information about individuals, with any condition classified in the ICD, who wander. Wandering was deleted as a subcode under the Alzheimer’s and dementia code and added as a condition to be noted in association with disorders classified elsewhere [V40.31]. The intention is to provide a way to document, understand, and improve the situation for individuals who are at risk of injury or death due to dangerous wandering. Wandering should be coded if documented in the medical record by the provider (i.e., physician).

The wandering code is not linked to a specific diagnosis, nor is it part of the diagnostic codes used for autism or intellectual disabilities. The ICD-9-CM classifies behaviors and risk factors in addition to diseases and syndromes; as such, the wandering code is used in conjunction with other diagnostic and symptom or procedure codes.

Licenses,ABA, Insurance, and Virginia

A couple of days ago, the issue of licensure cast a shadow on the managed-care agreement in California. It has come up in Virginia, too. Elizabeth Simpson writes at the Virginian-Pilot:

Families of children with autism celebrated the passage of a law earlier this year that would require insurance to cover a costly treatment for the developmental disorder.

But advocates who worked more than a decade for the law, which goes into effect Jan. 1, 2012, were disappointed to find out that an amendment made by the governor could delay a key piece as long as two years.

One of the governor's amendments requires therapists of Applied Behavioral Analysis -- the gold standard treatment for autism -- to be licensed by the state of Virginia.

The regulatory process to set up a new license in Virginia takes 18 months to two years to complete, according to Karin Addison, a special adviser in the state's office of Health and Human Services. She said the law does not contain a fast-tracking clause, which could have sped up the process.

Even if legislators tried to add a fast-tracking clause to the law now, only 10 objections are needed to derail such an effort, which would be likely given the controversial nature of the law.

Opponents included the National Federation of Independent Business, Independent Insurance Agents of Virginia, the Virginia Chamber of Commerce, and the Virginia Association of Health Plans. They opposed the law because of the increased cost to companies during an economically difficult time.

For a substantive argument in favor of licensure, see Michael F Dorsey, Ph.D., BCBA, Michael Weinberg, Ph.D., BCBA, Thomas Zane, Ph.D., BCBA, and Megan M Guidi, M.S. Ed., BCBA

"The Case for Licensure of Applied Behavior Analysts," Behav Anal Pract. 2009 Spring; 2(1): 53–58.

On the other hand, remember what George Stigler said:

[As] a rule, regulation is acquired by the industry and is designed and operated primarily for its benefit.

...

The licensing of occupations is a possible use of the political process to improve the economic circumstances of a group. The license is an effective barrier to entry because occupational practice without the license is a criminal offense.

The McDonald's Incident

Many people with autism use service animals. Legal battles have resulted. WSB-TV in Atlanta reports on the latest case:

An arrest warrant has been issued for the manager of a Marietta McDonald's after she punched a mother of two autistic boys in the face, Marietta police said.

It happened at the McDonald's on Bells Ferry Road, police said.

The manager, Tiffany Denise Allen, told the woman that the twin boys’ service dog, Barkley, wasn't allowed inside, police said. Allen was off duty.

The law, however, states that the dog is allowed inside.

The boys’ mother, Jennifer Schwenker, said the incident took place on July 12 when she took the boys to the McDonald's to have lunch.

Channel 2’s Diana Davis got her hands on a surveillance tape showing one of the twins and Barkley enjoying the restaurant’s play area.

The family was about to leave when Allen told them there were no dogs allowed, police said.
Schwenker explained that Barkley is a service dog, allowed by federal law in all public places including restaurants. Schwenker offered to provide proof of the permit for the dog, Marietta police said.

It wasn’t enough for Allen, they said. The tape shows her following the family around the McDonald's, even down the hall to the restroom.

When Schwenker tried to leave, she lost track of one of the boys. In a panic, she threw her drink on the floor and it splashed on Allen, police said.

The tape shows Allen running after Schwenker in a rage, police said. Marietta police Detective Gwen Lewis told Davis that she has never seen anything like it.

The Department of Justice explains what the Americans with Disabilities Act requires:

1. Q: What are the laws that apply to my business?

A: Under the Americans with Disabilities Act (ADA), privately owned businesses that serve the public, such as restaurants, hotels, retail stores, taxicabs, theaters, concert halls, and sports facilities, are prohibited from discriminating against individuals with disabilities. The ADA requires these businesses to allow people with disabilities to bring their service animals onto business premises in whatever areas customers are generally allowed.

2. Q: What is a service animal?

A: The ADA defines a service animal as any guide dog, signal dog, or other animal individually trained to provide assistance to an individual with a disability. If they meet this definition, animals are considered service animals under the ADA regardless of whether they have been licensed or certified by a state or local government.

Service animals perform some of the functions and tasks that the individual with a disability cannot perform for him or herself. Guide dogs are one type of service animal, used by some individuals who are blind. This is the type of service animal with which most people are familiar. But there are service animals that assist persons with other kinds of disabilities in their day-to-day activities. Some examples include:

_ Alerting persons with hearing impairments to sounds.

_ Pulling wheelchairs or carrying and picking up things for persons with mobility impairments.

_ Assisting persons with mobility impairments with balance.

A service animal is not a pet.

3. Q: How can I tell if an animal is really a service animal and not just a pet?

A: Some, but not all, service animals wear special collars and harnesses. Some, but not all, are licensed or certified and have identification papers. If you are not certain that an animal is a service animal, you may ask the person who has the animal if it is a service animal required because of a disability. However, an individual who is going to a restaurant or theater is not likely to be carrying documentation of his or her medical condition or disability. Therefore, such documentation generally may not be required as a condition for providing service to an individual accompanied by a service animal. Although a number of states have programs to certify service animals, you may not insist on proof of state certification before permitting the service animal to accompany the person with a disability.

4. Q: What must I do when an individual with a service animal comes to my business?

A: The service animal must be permitted to accompany the individual with a disability to all areas of the facility where customers are normally allowed to go. An individual with a service animal may not be segregated from other customers.

5. Q: I have always had a clearly posted "no pets" policy at my establishment. Do I still have to allow service animals in?

A: Yes. A service animal is not a pet. The ADA requires you to modify your "no pets" policy to allow the use of a service animal by a person with a disability. This does not mean you must abandon your "no pets" policy altogether but simply that you must make an exception to your general rule for service animals.

6. Q: My county health department has told me that only a guide dog has to be admitted. If I follow those regulations, am I violating the ADA?

A: Yes, if you refuse to admit any other type of service animal on the basis of local health department regulations or other state or local laws. The ADA provides greater protection for individuals with disabilities and so it takes priority over the local or state laws or regulations.

More on the California Managed-Care Settlement

Shaun Heasley reports at Disability Scoop:

California officials claimed a win earlier this month after striking deals with two private insurers to cover behavior therapy for children with autism, but now some advocates are calling the settlements a “sham.”

In recent weeks, the California Department of Managed Health Care announced agreements with Anthem Blue Cross and Blue Shield of California under which the insurers said they would provide coverage of applied behavioral analysis, or ABA, therapy.

State officials said the agreements would “provide immediate coverage upfront to potentially thousands of additional children annually” when they announced the plans.

Now, however, some advocates are crying foul. In a joint letter to California Gov. Jerry Brown, six autism and consumer groups said that the settlement reached with Blue Shield — which was soon followed by a similar agreement with Anthem Blue Cross — is inherently flawed.

Specifically, they cite a requirement under the agreements that ABA be administered under the supervision of a licensed provider. This is a problem, they say, because California does not license ABA providers, making finding an approved therapist unlikely for families.

A news release from Consumer Watchdog:

In a letter this week, Consumer Watchdog called on Governor Brown to replace Schwarzenegger-era regulators at the Department of Managed Health Care (DMHC) after DMHC officials misrepresented the details of an autism settlement with Blue Shield at a legislative hearing last week, and then signed a similar settlement with Blue Cross. Ten of eleven top DMHC officials were either appointed by Governor Schwarzenegger or joined the DMHC during the Schwarzenegger administration. Download the letter here: http://www.consumerwatchdog.org/resources/govbrownletter.pdf.

The DMHC misrepresented the settlement over Blue Shield's denial of coverage for a key autism treatment, Applied Behavioral Analysis (ABA), assuring legislators that the deal would provide autistic children the care they need. However, the fine print of the settlement reveals that the settlement is in reality "a sham that provides no solution and continues to allow Blue Shield to violate the law, " according to the letter to Governor Brown from parents of autistic children and consumer advocates. The groups urged Governor Brown to block any additional settlements. However, yesterday the DMHC announced it had signed a similar deal with Blue Cross.

In the letter, Consumer Watchdog, the Alliance of California Autism Organizations, Autism Deserves Equal Coverage, the Special Needs Network, Inc., Autism Health Advocates, Autism Health Insurance Project, and Sally Brammell, the mother of an autistic child enrolled in a Blue Cross policy regulated by the DMHC, wrote:

"Remarkably, the agreement appears to have been entered into without discussion or consultation with the Department of Insurance (CDI) or the autism providers or advocacy community, and was misleadingly portrayed in a positive light by DMHC officials at a legislative hearing last week held to review DMHC practices. The same DMHC regulators who folded on access to ABA under the pressure of insurance company lobbyists during the Schwarzenegger administration appear to be responsible for negotiating the settlement with Blue Shield. As Consumer Watchdog warned your staff months ago, the governor's office must be directly involved in establishing the state's autism policy going forward, and needs to replace the current leadership at the DMHC as soon as possible."

Under pressure from the insurance industry, during the Schwarzenegger administration the DMHC made a policy change to allow insurance companies it regulates to refuse to pay for ABA on the grounds that ABA is "educational" and not "medically effective," and paradoxically on the grounds that ABA providers are not "licensed" even though no such state license exists. The policy change was lobbied for by the health insurance industry, which gave Governor Schwarzenegger $1,349,850 campaign contributions.

The CDI, led by Insurance Commissioner Dave Jones and enforcing the same state law as the DMHC – the Mental Health Parity Act – unequivocally requires health insurers it regulates to pay for ABA, citing overwhelming medical literature that ABA is the most effective medical treatment for autism, and finding that ABA providers are not required to be licensed as a condition for coverage under insurance contracts.

Consumer Watchdog and co-counsel Strumwasser & Woocher sued the DMHC, in part, over its requirement that ABA providers must be licensed as a condition to be covered under insurance contracts. Consumer Watchdog said the fact that the DMHC continues to fight that lawsuit underscores its refusal to embrace a systemic fix.

California Loopholes

To anyone who follows autism politics, it should come as no surprise that the California managed care agreement is less than it appeared at first. At The San Francisco Chronicle, Laura Shumaker quotes Feda Almaliti, founder and executive director of Autism Health Advocates.

Once upon a time, in a room very nearby, a group sat down at a table behind heavy doors. Some in the group were regulators appointed by a governor named Brown, and some were representatives of a major health plan. But no one at that table was a parent whose child needed therapy, no one there would raise real-life issues or concerns. No one would ever say "Nay."

This fairy tale gathering happened last Monday, July 11th. The regulatory agency was the California Department of Managed Health Care (DMHC) and the health plan was Blue Shield of California.

Together they created a fairy tale settlement agreement because many families in the Land of California have been trying to get insurance coverage for their children with autism. These parents didn't want fairy dust or dolphin therapy. They want their insurance provider to cover the most effective and well-studied studied therapy available for their children, Applied Behavior Analysis (ABA therapy).

Now everyone in the Land of California can read this "settlement agreement." (Here's a link.) It says that Blue Shield will provide ABA to children with autism spectrum disorders. But like in all fairy tale contracts, this one comes with a catch.

They have imposed requirements that can't possibly be met. They have defined the education and certification level of qualified providers at an impossible standard, beyond what is customary in this state. The mythical providers of the therapy they have approved are as rare as unicorns.

...

Postscript: Just before this article went live, the DMHC signed another settlement agreement, this time with Anthem Blue Cross of California. It hasn't been released yet.

But we already know what it says.

POST SCRIPT NUMBER TWO AND HOT OF THE PRESS!

Senator Steinberg has asked the Director of the Department of Managed Health Care to defer settlement agreements until loopholes are addressed.

New York Mandate Awaits Cuomo Signature

Cara Matthews reports at Gannett:

Former Gov. David Paterson vetoed legislation last year that would have required health-care coverage for medically necessary autism treatment, saying it could cost the state and municipalities $70 million a year.

Now, a similar bill for screening, diagnosis and evidence-based treatment awaits action by Gov. Andrew Cuomo after passage by the Legislature.

This version includes a $45,000-per-year cap on applied behavior analysis, a treatment that reinforces and rewards useful behaviors and reduces those that could interfere with learning, according to Autism Speaks. That group and other advocates said the bill would increase premiums by less than 1 percent.

Assemblyman Joseph Morelle, D-Irondequoit, Monroe County, said the Senate and Assembly adopted a chapter amendment for the bill after reaching a compromise agreement with the Cuomo administration. They added the cap, which would be adjusted for inflation, and a start date of one year from when it is signed, rather than Jan. 1, 2012.

"We worked very hard over the last several months to come up with a bill that was balanced and provided much-needed relief to families who are dealing with the autism spectrum disorder," said Morelle, the Assembly bill sponsor.

Cuomo spokesman Josh Vlasto said the administration had productive conversations with the bill sponsors and appreciates their cooperation. The bill has not been sent to the governor's office yet, and Vlasto declined to comment further.

...

"It really is a reasonable compromise for the families of New York who have loved ones with autism," said Judith Ursitti, director of state government affairs for Autism Speaks.

A hike of half of 1 percent would increase insurance premiums by less than $2 per month, she said, adding that last year's bill was vetoed based on incorrect fiscal information.

The actuarial firm Oliver Wyman estimated that private health-insurance premiums would go up between 0.27 percent and 0.63 percent after six years, Autism Speaks said.

Insurance companies might cover screening and diagnosis and a limited amount of speech therapy and occupational therapy, but they don't cover applied behavior analysis, a core therapy, Ursitti said. They may deny treatment and say it is the school system's responsibility, she said, but some kids need intervention beyond what the educational system can provide.

The legislation would not cover experimental treatments for autism, which has no known cause.

A study commissioned by Autism Speaks said the legislation would save the state $13 million over six years because private insurers would pay for services currently covered through Medicaid under New York's Early Intervention Program.
Autism groups disagreed on the legislation in 2010, but they found common ground this year and most supported the modified bill, Ursitti said.

The New York Health Plan Association, whose members represent nearly seven million New Yorkers, opposes the legislation because it would increase the cost of insurance, impose a new mandate and require coverage of some services that "really fall under the educational umbrella," said Leslie Moran, senior vice president.