Insurance Coverage for Autism Treatments Sought

Patient advocates want the state to more quickly resolve parents' complaints over payments for behavioral therapy.
By Lisa Girion, LA Times
February 25, 2009

Patient advocates called on state regulators Tuesday to force health insurers to cover certain autism treatments.

Consumer Watchdog in Santa Monica sent a letter to Cindy Ehnes, executive director of the state Department of Managed Health Care, and her boss, Gov. Arnold Schwarzenegger, expressing concern about delays in resolving coverage complaints from parents of autistic children.

The parents say insurers are refusing to cover needed behavioral therapy for their children. But, the parents say, when they took their complaints to the department, it sat on them for months.

Consumer Watchdog founder Harvey Rosenfield said in the letter that state laws require the department to take swift action on the parents' complaints and that delays could exacerbate the children's condition.

Autism is a disorder that impairs communication and socialization. Its cause is unknown. There is no cure. But experts and public health authorities say that the disputed behavioral therapy is effective, especially when started at an early age, at mitigating symptoms and improving self-sufficiency.

The department had been sending disputes over the treatment to panels of independent physicians. Increasingly over the last year, those panels had been deciding that the treatments were medically necessary, and the insurers were made to pay.

Then, late last year, Kaiser Permanente, the state's largest nonprofit health insurer, changed its rationale for denying the coverage.

Instead of saying the treatment is not medically necessary, Kaiser now says the therapy is not covered because it is educational and not medical.

The new tactic prompted the department to put several treatment disputes on hold while it considered how to respond.

"The proper handling of Independent Medical Reviews for autism coverage has been a high priority for the DMHC, and the issues in these cases are highly complex, as are most issues concerning autism," said Department of Managed Health Care spokeswoman Lynne Randolph.

"Children with autism and their families deserve a complete examination by the DMHC of all complexities of these cases, which is what we have been providing," Randolph said.

The department's reconsideration of the disputes stoked concern among parents and patient advocates that it might allow insurers to avoid covering the treatments.

Rosenfield threatened to sue the department if it retreated.

"There are no exceptions to the legal requirement that the plans provide coverage for 'medically necessary' treatment to autistic patients . . . no matter what the [insurers] cynically attempt to call it," Rosenfield said in the letter to the department.

The new pressure on regulators raises the stakes in an ongoing controversy over treatment for children with autism.

Parents of autistic children have filed at least two class-action lawsuits against Kaiser in recent months, accusing the insurer of using a series of sham excuses to deny treatment in order to avoid the expense.

Charles Bacchi, interim president of the California Assn. of Health Plans, said that requiring insurers to cover behavioral therapy would drive up everyone's premiums.

"We believe that health plans provide comprehensive coverage for autism related medical services for parents and children every single day," he said. "However, educational services, we believe, are more appropriately covered by schools and [government] regional centers."

Like the association, Kaiser has "asked the department for clarity surrounding the department's views about sending coverage disputes of non-healthcare services to" independent physician review panels, said Jim Anderson, a spokesman for Kaiser.

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California Legislature Approves Budget Bill

By JUDY LIN, Associated Press Writer

SACRAMENTO, Calif. – The California Legislature passed a long-awaited budget early Thursday after an epic battle that involved several all-night sessions, sending the governor a bill that raises taxes and cuts spending to help close a $42 billion deficit.

Gov. Arnold Schwarzenegger, a Republican, praised the bill, passed by the Democratic-controlled Senate and Assembly. He came out of his office after the budget vote and disconnected a large deficit clock counting the number of days — 106 as of Thursday — that the Legislature had failed to act since he declared a special session to deal with the state's fiscal problems.

"I'm absolutely delighted about the budget passing," Schwarzenegger said outside his office.

The budget deal flew through the Assembly less than an hour after it won approval by a single vote in the Senate after late-night horse trading to win over a final Republican vote.

The package included a combination of spending cuts, tax increases and borrowing, intended to close a projected multi-billion dollar deficit and avert fiscal disaster for the state.

Senate leaders secured the final vote needed from moderate Republican Abel Maldonado in late-night negotiations by agreeing to his demands for election changes, government reform and removal of a gas tax increase, giving them the two-thirds vote needed to pass the package.

To win Maldonado's support, legislators agreed to ask voters to revise the state's constitution to allow open primaries for legislative, congressional and gubernatorial elections.

Leaders also met Maldonado's demands to remove a provision to increase the gas tax, freeze legislators' salaries in deficit budget years and to eliminate new office furniture budgeted for the state controller.

In a statement, Schwarzenegger said: "I am extremely proud of the members of the legislature, both Republicans and Democrats, who had the courage to stand up and put the needs of Californians first. ... we took the difficult but responsible steps to address our entire $42 billion budget deficit and pass historic bipartisan reform measures."

In passing the tax portion of the package, Republicans who broke from their party harkened back to former Gov. Ronald Reagan's decision to pass tax increases during hard economic times.

"What would Ronald Reagan do? Ronald Reagan would vote yes," said Sen. Roy Ashburn of Bakersfield.

Maldonado brought out a photograph of Reagan at a tax bill signing in 1972. He said he never thought he would have to defend California against members of his own party.

"This is not about my political career. This is about the health and safety for the people of California," Maldonado said. "My friends, this might be the end for me. This ensures it's not the end for California."

Senate Minority Leader Dennis Hollingsworth warned the crippling effects of passing the state's largest tax increase in California history.

"You may count this as a win because you got a few Republicans to vote for it," he said. "The taxpayers of California are going to view this as a loss."


Associated Press writer Samantha Young contributed to this report.

California Parents and Providers - Urge Lawmakers to Pass Budget

Over the past few days, the CA senate has been trying to vote on the CA budget. While there is language in the budget that would minimize the cuts to our funding sources such as the Regional Centers, unfortunately, there seems to be a stall on the vote and the Senate is falling short by just one vote.

We have been advised that the situation will become very detrimental if this budget is not signed. Therefore, we have been asked to initiate a letter writing campaign to the Republican senators

This has to happen today as the Senate is meeting and decisions are to be made as soon as possible. I have attached a sample letter for providers and a sample letter for families to use. Of course, you may write your own letter as well but in the interest of time, at the minimum, it would be very effective if the offices of these senators receive hundreds of letters today. You can sign the letter you choose, and fax it to the numbers below…You can also ask your families to call the senators’ offices and plead for an agreeable vote on the budget.

Please pay attention to this notice and send it to everyone you know in the field of Autism. This is very important and we must to whatever we can to pass the budget as is.

Thank you for your help!

Please Copy and Paste


Find your legislator:

Legislator Name



City, State Zip


I am writing on behalf of my child, NAME, to urge you to come together with your colleagues to resolve the ongoing budget crisis that is threatening to shut down the Regional Centers that provide urgent care to children like mine. My child receives behavioral services through Regional Center programs and without these services my child and many other children will suffer.

Continued access to top-quality behavioral intervention services has been scientifically proven to be crucial to the continued development of children with autism spectrum disorders. “Gaps” in services constitute a major threat to the continued well-being of these children. Some evidence indicates that children with autism spectrum disorders may not only fail to continue to develop when services are interrupted for weeks or months, but that they may actually regress developmentally, thereby putting an already vulnerable population at an even further disadvantage, as well as placing additional stress on the family system as a whole.

Consider, too, that the investment California makes in their children today, will help to curtail even greater costs which would be incurred long term if treatment is not provided. While an early intervention program may seem costly in the short term, the costs of NOT providing these services can be 10 times greater if no action is taken.

With behavioral services, such as those funded by Regional Centers across California, individuals with ASDs like my child achieve great successes. My child is proof of that. He/she has achieved great successes with behavioral services. Those of us who rely on Regional Center services for our children ask that you put the interests of California’s citizens first, and do what is needed to make sure our services are not revoked. Please continue funding these vital services so he/she can continue down this path.




City, State Zip

Phone Number

Please Copy and Paste


Find your legislator:

Legislator Name



City, State Zip


I am writing to urge you to come together with your colleagues to resolve the ongoing budget crisis that is threatening to shut down the Regional Centers and the care providers who work with families and children affected by autism spectrum disorders (ASDs). Regional Center funding is the only hope for thousands of families who want nothing more than to see their children learn and thrive. I work with these families everyday and without these services these families will suffer.

Continued access to behavioral intervention services, like those provided through Regional Center programs, has been scientifically proven to be crucial to the continued development of children with autism spectrum disorders. “Gaps” in services constitute a major threat to the continued well-being of these children. Some evidence indicates that children with autism spectrum disorders may not only fail to continue to develop when services are interrupted for weeks or months, but that they may actually regress developmentally, thereby putting an already vulnerable population at an even further disadvantage, as well as placing additional stress on the family system as a whole.

Consider, too, that the investment California makes in their children today, will help to curtail even greater costs which would be incurred long term if treatment is not provided. While an early intervention program may seem costly in the short term, the costs of NOT providing these services can be 10 times greater if no action is taken.

With behavioral services, such as those funded by Regional Centers across California, individuals with ASDs like the ones I work with achieve great successes. My clients are proof. They have achieved great successes with behavioral services. Those of us who rely on continued Regional Center services and funding ask that you put the interests of California’s citizens first, and do what is needed to make sure these services are not revoked.




City, State Zip

Phone Number


CA State Senator Abel Maldonado

Fax number: (916) 445-8081

Senator Dave Cox

Fax number: (916) 324-2680

CA State Senator Sam Aanestad

Fax number: 916-445-7750

Ca State Senator Roy Ashburn

Fax number: 916-322-3304

CA State Senator John J. Benoit

Fax number: 916-327-2187

CA State Senator Jeff Denham

Fax number: 916-445-0773

CA State Senator Bob Dutton

Fax number: 916-327-2272

CA State Senator Tom Harman

Fax number: 916-445-9263

CA State Senator Dennis Hollingsworth

Fax number: 916-447-9008

CA State Senator Bob Huff

Fax number:916-324-0922

CA State Senator George Runner

Fax number:916-445-4662

CA State Senator Tony Strickland

Fax number:916-324-7544

CA State Senator Mimi Walters

Fax number:916-445-9754

CA State Senator Mark Wyland

Fax number: 916-446-7382

Senate President Pro-Tem Darrell Steinberg

Fax number: 916-323-2263

Speaker of Assembly Karen Bass

Fax number: (916) 319-2147

Senate Republican Leader Dave Cogdill

Fax number: (916) 327-3523

Assembly Republican Leader Mike Villines

Fax number: (916) 319-2129

Senator Mark Leno

Fax number: (916) 445-4722

Assembly Member Jerry Hill

Fax number: (916) 319-2119

Vaccine Court Ruling Won't End Autism Debate

ABC News Medical Unit


Some autism advocacy groups say that despite a ruling that appears to exonerate MMR vaccines as the cause of autism in children, they will continue to push to raise awareness that such a link may exist.

Autism advocacy groups that support the idea of a link between vaccines and the development of autism said a ruling handed down Thursday by a special court was devastating -- but that it will not sway them from their cause.

In the ruling, three special masters of the U.S. Court of Claims note that the evidence presented in the case overwhelmingly contradicts the parents' claims that the measles-mumps-rubella (MMR) vaccine was to blame for their children's development of autism. The finding is in line with the majority of scientific studies on autism.

Doctors and other medical experts overwhelmingly applauded the ruling, maintaining that it reinforces the message that vaccination does not lead to autism. "This is a real victory for children and a great day for science," said pediatrician Dr. Paul Offit, chief of Infectious Diseases and the director of the Vaccine Education Center at the Children's Hospital of Philadelphia, during a Thursday press conference sponsored by the vaccination advocacy group Every Child by Two. "I hope that this decision will finally put parents' fears to rest."


And some doctors said that the ruling may even end the decade-old debate that has swirled around the idea that measles-mumps-rubella MMR vaccines are somehow linked to autism.

"This should settle the issue of MMR vaccine -- by itself or 'combined' with thimerosal from other vaccines -- as an alleged cause of autism," said Dr. Max Wiznitzer of Rainbow Babies and Children's Hospital in Cleveland.

However, the issue remains far from settled for the groups that maintain such a link exists.

"I'm devastated today," said Rebecca Estepp, national media manager for the organization Talk About Curing Autism. "But I also know that the decision will be appealed.

"As parents, we feel like, OK, we're going to fight even harder to get justice for our children," she added. "In a way this might have reignited our cause... Just because we lost today does not mean we will lose in the future."

Another autism advocacy group, Autism Speaks, issued a statement saying the ruling does not erase the questions they say still surround vaccine safety.

"These latest rulings are limited and do not mitigate the need for further scientific investigation," the statement reads. "While large-scale studies have not shown a link between vaccines and autism, there are lingering legitimate questions about the safety of vaccines that must be addressed."

Not the Last Day in Court

The legal fight could be far from over for the approximately 4,900 families involved in the cases, who together have filed more than 5,500 claims that vaccines harmed their children. All of the families seek compensation through the government's Vaccine Injury Compensation Program, a no-fault fund set up to administer awards to families who can show that their children were harmed by vaccines.

The cases directly affected by the special court's ruling involved three families who claimed that the mercury-containing preservative thimerosol in vaccines set their children's immune systems up for damage from other components of the MMR vaccine, resulting in autism.


Tom Powers, the Oregon attorney who leads the litigation steering committee for the plaintiffs, said it is too early to close the book on the three test cases affected by today's ruling. The plaintiffs have a 30-day window to consider the grounds upon which they may contest the decision, and an appeal is likely.

"It's a little premature to say that even for these three families the process is over," he said.

Powers added that the theory scrutinized in this case was just one of two theories that will be brought before the special court. The other theory maintains that thimerosol alone brought about autism in some children.

"There is no doubt that this is disappointing news," Powers said. "On the other hand, the message to the families is that we will continue to prosecute the cases... follow the science, and see where it leads us."

Vaccine Experts Claim Victory

Still, most in the medical community feel that the preponderance of scientific evidence has already led to the conclusion that vaccines are not responsible for autism.

"It is completely understandable that parents who are desperately looking for a cause of why their child turned out this way will focus on the vaccine," said Dr. Shlomo Shinnar, professor of neurology and pediatrics at Montefiore Medical Center, in Bronx, N.Y. "But there is a large body of scientific data that has refuted this association... It is reassuring that the special masters who are dealing with this were guided by the weight of the available scientific evidence on this important public health issue."

"I am thrilled that this ruling will enable the medical community to speak with conviction about the importance and safety of childhood vaccination," said BethAnn McLaughlin of the Vanderbilt University School of Medicine's department of neurology in Nashville, Tenn. "We recognize that while we are under-funded to study many of the chemicals our families and children come in contact with every day, that the debate about vaccination causing autism should be ended."

Joanna Schaffhausen and Audrey Grayson contributed to this report.

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ASA Statement on Cedillo, Hazelhurst, Snyder v. Secretary of Health and Human Services

Today the National Vaccine Injury Compensation Program/Court ruled that the combination of the MMR vaccine and thimerosal in other vaccines did not cause or contribute to the cause of neurodevelopmental disorders such as autism in the cases of Cedillo, Hazelhurst, Snyder v. Secretary of Health and Human Services.

Though the litigation on which vaccines may have caused autism in some children varies, this ruling only affects those who claim the interaction of the MMR vaccine and thimerosal-containing vaccines cause autism. There are still 5,000 cases still to be decided, and many unanswered questions for the thousands of families affected by autism.

ASA believes that the science of autism causes and treatments need to be more vigorously researched. We hope that primary decisions on medical research and comprehensive treatment and services will be reached through thoughtful dialogue by parents and professionals. Individuals living with autism need help today, and this case illustrates the need for the medical community to probe further into environmental causes of autism. Like all families affected by autism, these families deserve to be heard and supported in their journey raising their children.

What this ruling doesn’t address is the continuing need of these families for services and supports throughout their children’s lifespan, regardless of what caused their autism. While we don’t know the cause for autism, or its interaction with other conditions or environmental aggregators, we need to focus today on what works to maximize the potential of people with autism to help them live meaningful, productive lives.

This has always been ASA's mission and we will continue to advocate for research, family and individual support, and lifespan services for people across the autism spectrum.

U.S. Vaccine Court Denies Family's Autism Case

By Maggie Fox, Health and Science Editor

WASHINGTON (Reuters) - A special U.S. court ruled against three families on Thursday who claimed vaccines caused their children's autism.

The Vaccine Court Omnibus Autism Proceeding ruled against the parents of Michelle Cedillo, Colten Snyder and William Yates Hazlehurst, who had claimed that a measles, mumps and rubella vaccines had combined with other vaccine ingredients to damage the three children.

"I conclude that the petitioners have not demonstrated that they are entitled to an award on Michelle's behalf," Special Master George Hastings, a former tax claims expert at the Department of Justice, wrote in the Cedillo ruling.

The families sought payment under the National Vaccine Injury Compensation Program, a no-fault system that has a $2.5 billion fund built up from a 75-cent-per-dose tax on vaccines.

No judges but instead three "special masters" heard the three test cases representing thousand of other petitioners.

They asked whether a combination vaccine for measles, mumps and rubella, or MMR, plus a mercury-containing preservative called thimerosal, caused the children's symptoms.

"The evidence does not support the general proposition that thimerosal-containing vaccines can damage infants' immune systems," Hastings wrote, after reviewing tens of thousands of documents and hours of oral arguments.

Michelle's parents argued that she was a normal baby until she received the vaccine.

Experts say parents often link vaccines with their children's symptoms because they are vaccinated at an age when autism and related disorders are often first diagnosed.


Two Institute of Medicine reports, in 2001 and 2004, reviewed the evidence and determined there was no link between vaccines and autism. Many other studies have also shown no link, but a small and vocal group of parents continue to press the cases.

"Considering all of the evidence, I found that the petitioners have failed to demonstrate that thimerosal-containing vaccines can contribute to causing immune dysfunction, or that the MMR vaccine can contribute to causing either autism or gastrointestinal dysfunction," the ruling from Hastings said.

"I further conclude that while Michelle Cedillo has tragically suffered from autism and other severe conditions, the petitioners have also failed to demonstrate that her vaccinations played any role at all in causing those problems."

Hastings also rejected an argument that some children may be genetically "hypersusceptible" to mercury.

More than 5,300 cases had been filed by parents who believed vaccines may have caused autism in their children and were seeking payment under the National Vaccine Injury Compensation Program. Under the program, someone injured by a vaccine does not have to prove the vaccine actually caused his or her injuries.

All they need to do is establish that vaccines sometimes cause that particular condition or injury, as the three test cases sought to prove. The no-fault payout system is meant to protect vaccine makers from costly lawsuits that drove many out of the vaccine-making business.

(Editing by Alan Elsner)

Autism Coverage Bill Fails

Senate's Move, House Panel's Inaction Anger Advocates

By Fredrick Kunkle
Washington Post Staff Writer

Thursday, February 12, 2009; Page B07

RICHMOND, Feb. 11 -- The Senate has effectively killed a bill that would have required insurers to cover autistic children, pleasing business lobbies that argued against new mandates but enraging parents who vowed revenge at the polls.

The fight over mandating autism coverage has gathered intensity nationwide and resonated especially strongly in Loudoun County and other fast-growing areas of Northern Virginia with high numbers of children.

Anger about the bill's defeat late Tuesday was magnified by what appeared to be a flip remark by a Northern Virginia lawmaker who had offered qualified backing for the cause. Moments after the vote on the bill concluded a late session, Majority Leader Richard L. Saslaw (D-Fairfax) took the floor.

"I'd inquire of the clerk: Who won?" Saslaw said with a grin. "We had a pool going."

The Senate clerk replied with a smile: "That's not appropriate, senator."

Advocates of the bill thought Saslaw's question referred to a wager on the bill's fate.

"Our parents just felt like their kids were made some sort of a joke, an office wager," said Judith Ursitti, regional director for Autism Speaks, a nonprofit organization.

But Saslaw, who had attempted to broker a compromise on the autism bill, said yesterday that his joke was a victim of bad timing. The office pool he referred to, Saslaw said, concerned the hour at which the Senate's session would end. Saslaw said it was tradition to wager on the timing of "crossover," the final session when each chamber concludes work on legislation that must be referred to its counterpart. Saslaw said he regretted the bill's failure.

"I did everything I could to get this thing out of here," he said.

More than 100 people, including educators, lawmakers, and families with autistic children, assembled in July at a community center in Lansdowne on the Potomac to organize their campaign. They enlisted not only other parents of autistic children but also their friends in what became known as the Loudoun Project. They traveled by the busload to the capital and trooped to lawmakers' offices wearing huge buttons saying, "Autism Votes in Virginia," often with their autistic children in tow.

"We promised a daily presence," said Pasquale "Pat" DiBari, a Leesburg resident and early organizer. "We really went above and beyond to tell legislators our personal stories."

Allying themselves with Autism Speaks, parents entered about 20,000 supporters into their database, and they flooded lawmakers' inboxes with more than 7,000 e-mails, winning bipartisan backing from Dels. Robert G. Marshall (R-Prince William) and David E. Poisson (D-Loudoun). Sen. Jill Holtzman Vogel (R-Winchester) carried a bill in the Senate.

But the legislation met resistance from the business community, which argued that a recession was the worst time to impose a costly mandate.

"I'm very sympathetic to the parents and children caught up in this terrible condition," said Hugh Keogh, president of the Virginia Chamber of Commerce. "[But] our numbers show a decreasing amount of employers who are able to offer health-care insurance every year, and mandates are a part of that."

Reginald N. Jones, a lobbyist for the Virginia Association of Health Plans, said one estimate suggested that the costs of autism coverage could be as much as $40 million a year in Virginia, despite a provision that would cap expenses at $36,000 per child per year.

"It would probably become the second most expensive mandate in Virginia, and maybe the first," Jones said.

The bill quickly met resistance. The House Commerce and Labor Committee took no action on it, infuriating advocates who noted the unpleasant irony that the bill suffered the same fate as some of their children. "To receive the silent treatment was really stunning," DiBari, 40, said.

Jodi Folta, 39, an accountant who lives in Ashburn, said advocates were mystified by the actions of Del. Thomas Davis Rust (R-Fairfax), a member of the Commerce and Labor Committee. Rust appeared to be a friend of the cause, turning up at a rally on the capitol grounds, but he showed no effort to advance it, Folta said.

"He's on our unhappy list," Folta said.

Rust did not respond to a message at his office seeking comment.

In the Senate, Vogel sought compromise by limiting the mandated coverage to children younger than 12. Saslaw cut the age further, to 6 years old. But efforts at compromise failed.

"I've struggled with this bill, and I think everybody here has struggled with this bill," said Sen. Kenneth W. Stolle (R-Virginia Beach) before asking that the bill go back to the Finance Committee, where it would effectively die this year. "The legislative process is an ugly process, and this has been particularly ugly."

Staff writer Tim Craig contributed to this report.

Scientific Review of the Immunization Action Coalitions Guidelines to Vaccination Policies

The issue of whether vaccines are related to autism in any manner remains a controversial and divisive one. The tremendous financial and public health ramifications of the issue render it difficult to imagine that individuals from any community, be it scientific, pharmaceutical, governmental, or parental, can remain unbiased while addressing it.

The following article, which is slated to be published soon, is by Dr. Andrew Wakefield, one of the most active and controversial players in the debate, and consists of a response to the document entitled “Clear Answers and Smart Advice About Your Baby’s Shots” by Dr. Ari Brown, published by the Immunization Action Coalition.

Among the primary points of the paper is the fact that the debate can only be solved by sound scientific research, not strong opinion, a point with which we firmly agree. We encourage a careful reading of the paper and we encourage the reader to assess the levels of evidence presented for the various claims on both sides.

This is not a debate that will be solved by faith in one’s own position, nor by acrimony toward others, but by scientific research alone.

Shedding Light on Autism

presented by
May 15-17, 2009
Big Sur, California

Spend a weekend at Esalen with Dr. Baker,
Former Director of the Gesell Institute
of Human Development, co-founder of DefeatAutism Now! and co-author of Autism: Effective Biomedical Treatments, and practicing physician.
Treating the Unique Child: Private Options, Public Policy and the Autism Spectrum will be an intelligent conversation leading to the ultimate question faced by parents, teachers, physicians, therapists: “Have we done everything we can for this child? ”

This is a question Dr. Baker learned to ask in Nepal in 1959 when he apprenticed with Dr. Edgar Miller during a year off from his Yale undergraduate education. This question should concern those entrusted with public policy, where one-size-fits-all approaches is in direct contrast with the fundamental law of Nature: that each living organism is unique. Individuality has practical clinical implications, and demands a tailored approach the individual, not a standard protocol.

The following relevant issues will form the basis for the symposium with Dr. Baker:
  • Six rules for preventing autism. And why…
  • Seven top treatment options for my child. And why…
  • Lab tests: which, when, and why.
  • What lessons have we learned from the children who recover?
  • How does the language of name-it, blame-it, and tame-it prescription pad medicine affect clinical decisions?
  • And other questions that you bring to the conversation as parents, practitioners and policy makers.
Enrollment is limited. Please reserve early
Reservations can be made on-line at

Lawmakers Poised to Write New Chapter in State School Saga

By Corrie MacLaggan

Mac Olive had been on a waiting list since 2000 but moved into a Home and Community-based Services program house in Austin after a few months at the state school, his sister Missy Olive said.

When Missy Olive moved her brother Mac to Austin State School, an institution for Texans with mental retardation, it wasn't because she wanted him to live there. It was a way to avoid a very long waiting list.
Since 2000, Mac Olive, 29, had been on the list for the Home and Community-based Services program (HCS), which helps people live at home or in group homes.

Nearly 40,000 people are waiting for that program. But state school residents who want to leave the institutions can transfer directly into community care.

"While I wanted him to get off the waiting list, the thought of putting him in the state school petrified me," Missy Olive said. "I had sworn I would never put him in an institution."

Debate has raged for years over how best to serve Texans with mental retardation. Now, because of scrutiny from the U.S. Department of Justice, which found lapses of care throughout the state school system, the Legislature appears poised to make significant changes.

Lawmakers are considering a broad range of proposals, from creating an ombudsman to monitor state schools, to capping the number of residents to closing some state schools and putting more money into community services.

The issue took on new urgency this week when Gov. Rick Perry declared state schools a legislative emergency.

Some state officials, including Perry, say the current system of care for Texans with mental retardation provides an array of choices, from the 13 state institutions to smaller state-licensed facilities to community-based services.

But the Justice Department cited neglect and chronic staff turnover (the turnover rate among direct-care workers last year was 52 percent statewide — and 74 percent at Austin State School).

And some lawmakers worry about lax oversight of certain community facilities. Meanwhile, some say that the long waiting list for community care amounts to no choice at all. "If you want to be served at a state school, you walk right in the door," said state Rep. Patrick Rose, D-Dripping Springs. "If individuals with intellectual or developmental disabilities choose to be served in the community, we ought to afford them that option, and we are not doing that today."

Rose and state Sen. Rodney Ellis, D-Houston, plan to file legislation that would reform the entire system. It would close some state schools — now home to nearly 5,000 Texans — and create a long-term plan for institutions and programs like HCS, which provides minor home modifications, nursing care and supervision to more than 13,000 Texans.

And Sen. Steve Ogden, R-Bryan, the Senate's lead budget writer, is proposing to limit state school enrollment and invest in community care.
The Texas Department of Aging and Disability Services spent $458 million in state and federal Medicaid dollars on state schools in 2007, and roughly the same amount to serve thousands more people in HCS.
"We have a system today by accident rather than by design," said Rose, whose proposal would eventually limit waiting-list time to two years. "It is not fair or right what we're doing, and it costs the state more how we do it."

Total expenses of caring for someone at a state school are $125,507 per person per year, compared with $63,529 at a group home through HCS, according to the Legislative Budget Board.

Closing some state schools is something Ogden says cannot be done.
"My view is that it's politically impossible to close a state school, but we can manage the size of the state schools," Ogden said. "There's always a constituency out there in support of each individual state school, and they can usually muster enough political firepower to prevent us from closing any state school."

Nationally, there's a trend for states to move away from institutionalizing people with mental retardation, but Texas hasn't kept pace: The Lone Star State has a higher institutionalization rate than the nation as a whole and has more people living in state schools than any other state.

As other states have found, closing institutions is fraught with thorny political issues. Texas' state schools have been a part of their communities for decades. They provide thousands of state jobs — Mexia State School is Limestone County's largest employer — and have a core group of residents and families who firmly believe in them.

That includes the family of Michael Young, 54, who has lived at Austin State School since 1992.

Closing it, says his mother, Ellen Young, 88, "scares me to death." She said she wouldn't trust a private home to care for him. "He gets good care here," said his aunt, Austinite Sally Feutz. "He has a second family here."

Ten states and the District of Columbia have closed all institutions for people with mental retardation.

In Indiana, the most populous of those states, it took nearly a decade to
close the five institutions there to comply with a gubernatorial executive order.

Residents, with their families, decided where they should go, and the majority moved into homes with three people or less, settings often designed specifically for them, according to John Dickerson, executive director of the Arc of Indiana.

"It can be done; it works," Dickerson said. "But it's got to be done from an individual person-centered basis and not by just a wholesale movement of people." He said his state has even succeeded at meeting the needs of people with a very high level of needs in small settings.

For families that prefer state schools, "their fears are very real," Dickerson said. "They can't imagine because no one has ever demonstrated and shown to them what can be. It's like me trying to explain to you what Paris is like if you've never been and you don't trust me."

In Texas, Perry hasn't said whether he supports closing any state schools.
"I do think there is a role for state schools, I do think there is a role for community homes, and I'm going to continue to support those options, because I think Texans should have the choice about where their loved ones should be cared for," the governor said last month.

But Missy Olive, 41, says moving her brother to Austin State School last year "was our only choice."

"The first time I went to see the state school ... I pulled over in my car, and I bawled my eyes out," she said. "There were guys falling asleep standing up, taking their clothes off in order to get attention. It broke my heart."

Olive said that her brother was receiving poor care at a state-licensed "intermediate care" facility in Austin — several lawmakers say those facilities need to be more closely monitored — and that she wanted to get him into HCS but that he still had more than 2,000 people ahead of him on the waiting list.

So she put him in the state school in West Austin, where he lived for about six months. There, she said, he rarely went on outings and was kicked in the stomach twice by other residents.

In October 2008, Mac Olive left for HCS. He now lives with one housemate in a South Austin duplex. There is no live-in staff. Instead, employees of the nonprofit Mary Lee Foundation come in shifts. In the mornings, one helps him fix his Raisin Bran and drives him to a day program. In the evenings, another takes him to shop at H E B or eat at McDonald's, and a staffer stays at the home, awake, overnight.

"It's fantastic," Missy Olive said of her brother's new living situation. Compared with the state school, "it costs the state less for him to live here, where he has a much higher quality of life."

Teen's Family Transformed After Autism Intervention

Part II
By Linda Saether CNN

Until recently, the Bilson household was under siege. Thirteen-year-old daughter Marissa, who has autism, ruled the roost, screaming shrilly until she got her way and enjoying special privileges that didn't extend to her siblings, Brittany, 15, and Brendan, 6.

The family couldn't go out in public because of Marissa's tantrums, and they couldn't take her into stores because she'd shoplift what she wanted, or just scream until she got it.

But that was before.

Today, the Bilsons' family life is a lot calmer and quieter. That's because Marissa and her parents, John and Mary, are following the rules that were made during a five-day intervention. The intervention was provided to them free by the group Autism Partnership, or AP. Usually this type of treatment costs about $20,000 a week, and it's not covered by insurance, but because CNN was allowed to videotape the entire process, AP waived the fee for the Bilsons.

The intensive, one-on-one, in-home therapy was meted out by behavioral therapist Rick Schroeder, who used a technique of behavior modification known as "applied behavior analysis" or ABA. ABA essentially breaks down behavior patterns in order to reward good behavior and not reward bad behavior. Essentially, it's all about laying down the rules and sticking to them in a way that Marissa can understand.

Marissa -- who before the therapy was, in Schroeder's words, "out of control" -- now has rules to follow, something she didn't have before. Marissa's mother also learned some lessons about her daughter that week. "I learned that Marissa is smart," Mary Bilson said. "Smarter than I thought."
These days inside the Bilsons' cozy house, there is a lot less screaming and more boundaries are in place. The balance of power is tipping back into the hands of the parents and away from Marissa and her tantrums.

But there is still work to be done; the only difference is that now the Bilsons -- not Schroeder -- will be in charge.

The theory remains the same: "It's all about the teaching," Schroeder explains. "With a child like Marissa, we can't sit down and discuss it with her -- she's just not going to get that. So we have to take it in small steps. Make them understandable and move on, one step at a time."

That's just what the Bilsons are doing: One step at a time. They have increased the amount of time that Marissa has to practice her new behavior, from a starting time of 20 minutes a day toward a goal of 60 minutes.

In a recent e-mail, Mary Bilson wrote that the initial rewards that Schroeder had used with Marissa have lost their appeal, and Marissa wasn't interested in working for them anymore. However, Bilson added, she has discovered other rewards the teen is eager to work toward.

As a result, said Mary Bilson, her once unruly teen has continued to follow the rules that were put in place during that weeklong intervention: Marissa no longer goes into sister Brittany's room, she no longer monopolizes the family computer, and her once-frequent screaming fits have all but stopped.

Possibly best of all, Marissa can now go out in public without creating a scene -- a goal Mary Bilson was eager to achieve, because before, the Bilsons "could never go out together as a normal family."

In other words, one week of intervention therapy has done more than simply give Marissa some rules to follow and the household some much needed quiet. It has brought this once-divided family back together.