From the Orangeburg Times & Democrat

Attacking autism
Bill hopes to insure early, intense therapy to improve disorder

By DIONNE GLEATON, T&D Staff WriterMonday, April 17, 2006

At age 2, Zachary Hendrix, son of Allen and Donna Hendrix of Orangeburg, was not talking or playing with other children. At 3, he had a 20-word vocabulary. His parents thought his many ear infections were affecting his ability to hear, and consequently his ability to converse.

Eventually, Zachary was diagnosed at the Medical University of South Carolina with autism, a lifelong neurological condition which affects speech, communication and social skills -- and approximately 24,000 South Carolinians of all ages.

Today, Donna says, Zachary, now almost 4, is making tremendous progress because of the applied behavioral analysis (ABA) he has received. He's learning his ABCs and social skills, finetuning his speech and can count to 20."We just basically take one issue at a time," she said.

April is National Autism Awareness Month. Doctors, teachers and mothers in The T&D Region all have touted early diagnosis and intensive intervention, particularly through the ABA methodology, as the best treatment method for a disorder with no known cause, no known cure.

At a yearly average cost of up to $50,000, however, ABA therapy is often out of reach for many individuals, particularly parents who are struggling to find the best comprehensive means to help their children become productive, fully-functioning adults.

A proposed bill currently in the South Carolina legislature would require insurance coverage for ABA and other doctor-prescribed treatment for autism and other pervasive developmental disorders such as Asperger's Syndrome. Insurers say the bill would create higher insurance premiums.

Bill proponents, however, say it is a more than necessary step in providing funding for needed therapies in the fight against autism.

Federal law states that all children must be provided an "appropriate education." While Orangeburg Consolidated School District 5 has its own ABA self-contained classroom at Mellichamp Elementary School, many public school districts may not have the money for what some parents say should involve one-on-one intensive ABA therapy.

Early intervention is key

To diagnose a child with autism or "autistic-like qualities that don't meet the criteria of autism," Dr. Tracey Macpherson of the Pediatric Clinic said parents have to be sure their child has regular routine pediatric physicals with developmental evaluations and doctors have to pay strict attention to the child's speech, language, and social development.

The cause of autism has a definite genetic component, she said, but also includes environmental insults, such as exposure to an illness, medication or vaccines, though autism hasn't been proven to have a connection to vaccines.

"Some insults just happen, but I really do believe there's a genetic predisposition," she said, noting that autism has become "an exploding diagnosis" among younger children."Depending on the age of the child, several referrals will go out," she said.

Children from birth to age 3 are referred to the state Department of Health and Environmental Control's BabyNet, an interagency system of early intervention services for families with children with developmental delays or associated conditions. The infants and toddlers are matched with professional services within their community.

Children over the age of 3 are referred through their resident Disabilities and Special Needs Board. Pediatricians also contact the Carolina Autism Research and Evaluation Center in Charleston, and then refer the patient to an autism specialist or pediatric developmentalist who makes the final diagnosis, Macpherson said. Referrals are also made to speech therapists and audiologists, she added.

Most kids with autism or autism-like qualities will also either have fine motor and sensory integration issues, so occupational therapists and/or physical therapists may also be part of the "multi-member team approach" pediatricians take.

If a child is already school-age when he is diagnosed, parents have to work with the school to get them into the appropriate classroom. "Certainly there have been different modalities tried and looked at (in treating autism), but the only one proven to be helpful is ABA. It seems the earlier that's started, the more success you have with it. Early intervention is key," Dr. Macpherson said.

'It hits us all'

Orangeburg resident Julie Mobley, hoping to increase the chances of early intervention and to help parents and others dealing with autism, has started an Autism Awareness and Support group, which met for the second time April 3 to hear from the coordinator of the South Carolina Autism Society's Parent-School Partnership program.

"We want people to know that they're not walking this road alone," said Mobley, a senior nursing student at Orangeburg-Calhoun Technical College, who also plans to develop a sibling support group.

"Parents don't need to reinvent the wheel," Macpherson said. "There are some outstanding people in our community who have gone through this and are more than willing to help."

Mobley's son Matthew, 4, was diagnosed with "pervasive developmental delay not otherwise specified" at the age of 3. This is the language used to describe autistic-like qualities that don't meet the criteria of autism, Macpherson explained.He is a now in a regular 4-year-old kindergarten class at Marshall Elementary School, but is also scheduled to begin private in-home, 40-hour-a-week ABA therapy.

It won't come cheap. Mobley and her husband are expecting to pay $7,000 for just three months of therapy.

"This means no vacation, less dinners out and relying on your family for financial assistance. Autism is not going away. Our only hope is that individuals can be helped to grow and hopefully become productive adults through a structured, consistent and stable home life with intensive therapy," Mobley said. "As a mother, you go through every emotion you can imagine. There are times of complete excitement and joy as with any child, but there are also times of sadness and heartbreak."

Donna Hendrix said while her son is in the ABA program at Mellichamp Elementary School, she, too, expects to spend up to $40,000 a year for her son's private ABA therapy. She and her husband spent approximately $2,000 last summer for his speech and occupational therapy."

He also has doctor's visits for progress checks and an ABA therapist through the (Sumter-based) South Carolina Early Autism Project (SCEAP). It's very expensive, but it has worked. His vocabulary has increased whether it's through sign language or vocalizing," Hendrix said.

Calhoun County resident Nicky Smith's son, Tanner, 7, was diagnosed with autism at the age of 4. He is a 5-K student at Calhoun Academy and is provided with a private shadow which his parents hired to assist him during the school day.

His family had also spent approximately $450 a month for in-home ABA therapy through SCEAP. Because of the high cost, Smith feels that the bill mandating insurance coverage should be passed for the children who need the treatment but can't afford it. ABA breaks down skills into their individual parts and teaches them, explains Melissa Valentine Ruge, an SCEAP clinical supervisor. With intensive intervention, she said, 48 percent of children will be able to function normally and be in a regular education classroom indistinguishable from their peers, and the other 52 percent are significantly improved from where they were.

The bill is targeting public and private insurance companies, Ruge said, with the goal of intense therapy affordable to all in need of it. "It probably will be voted on somewhere between May and June, and then something that looks like the original bill will go into effect as of July 1," she said. " The question is whether it will look like what all these parents really want it to.

"'A huge issue'"

Funding is a huge issue. We either pay now, or pay later for institutions and group homes for the rest of their (autistic individuals') lives. We know ABA services work, but the level at which it does varies depending on the individual," said South Carolina Autism Society director Craig Stoxen.

Stoxen said the state has been unable to provide "a seamless, flowing system of care" for autistic individuals, and he feels that a comprehensive bill to address this problem and its funding is critical.

Orangeburg resident Teresa Jameson, a nurse anesthetist at TRMC, said the funding for autism therapy should be shared by both the state Medicaid system and private insurance companies. "The state needs to pitch in, too," said Jameson, whose 12-year-old autistic son Mark also underwent ABA therapy. He is now a student at Glen Forest School in Columbia.

"In my opinion, ABA saved my child. That's the one therapy that's absolutely necessary, but my concern is that it gets watered down if it gets into the school system. I think the school needs to make sure they have a good basis for educating the teacher assistants, teachers and therapists and make sure they continue their education," Jameson said.

OCSD 5 federal programs coordinator Cindy Clark said that in 2002 the district started its own ABA program which provides speech therapy and comes complete with a self-contained ABA classroom, a transition room for children not fully ready for immersion in a regular classroom, and an occupational and physical therapy room.

SCEAP and the Carolina Autism Project work as consultants with the district to provide ABA training with teachers and therapists. The ABA self-contained class at Mellichamp Elementary includes eight line therapists which provide one-on-one instruction with its students, with approximately 12 others spread out among other schools in the district."We have several autistic children. Some kids are in regular classes with the line therapist support. Several are in educable classes for students with educable mental disabilities, and one's in a class for students with training disabilities. So the cognitive levels vary widely," Clark said.

SCEAP visits Mellichamp twice a week to provide ABA training." Several teachers also go to training all year long. Even in the summer, they go to week-long training sponsored by different groups. We want them to keep up with the current research," Clark said.

Mellichamp Elementary principal Beverly Stroman-Spires said the goal is to improve behavioral, communication and social skills to be able to "get children into the least restrictive environment, which would be the regular classroom."ABA trainers work well with parents, says ABA supervisor Sara Ardis, adding that they send home everything they do, including the signs the child needs to work on.

Georgia resident Donna Richards runs My Brother's Keeper in Rome, Ga., which has a goal of improving the lives of the autistic and their families. The foundation, which is planning to build an autism therapy center, also has a Web site offering information on autism and available education packages.Richard's own 6-year-old son, Justin, was diagnosed with autism at age 3, and she credits his tremendous progress to his ABA therapy. A trusted pediatrician had initially told her that Justin was simply going to be mentally retarded and that she should apply for disability benefits.

"It was devastating, but he's very verbal now and has competed in the Special Olympics. The thing with autism is that no two autistic children are alike, and no one therapy works for every child," said Richards, who is in the process of writing a second book entitled, "The Parent's Guide to Identifying and Minimizing Autism.""My main focus is to let parents know that there is help out there and not to give up," she said. "This is your child. Keep the faith, and it will be all right."

T&D Staff Writer Dionne Gleaton can be reached by e-mail at dgleaton@timesanddemocrat.com or by phone at 803-533-5534.

From the Schafer Autism Report

This article unfortunately republicizes the scare-tactic projections from the insurance industry, but I thought it was worth posting anyway, just to show that we are making national news.


Autism - Worst Welfare Disaster In History

By Evelyn Pringle http://tinyurl.com/mbw6r http://www.opednews.com

Scientist and medical experts say that unless the government forces the pharmaceutical industry to pay for the damage caused by mercury-laced vaccines, in the not too distant future, Americans will experience the worst welfare disaster in the history of this country.

No doubt with that in mind, eight members of Congress are calling for a new investigation into the link between the autism epidemic and the mercury-based preservative, thimerosal, that children received in vaccines during the 1990s, and that some children received as late as 2003.
After six years of hearings, and testimony from medical experts, scientists, special education teachers, school nurses, and parents of autistic children, several lawmakers say they are convinced that a review of the vaccine database will show a causal link between autism and thimerosal.

Throughout the 1990s, when thimerosal was most heavily used, the number of children diagnosed with autism reached epidemic proportions.

During this period, the levels of mercury that children received were 120 times greater than safety standards set for oral ingestion of mercury in food, according to the lawmakers.

In 1999, public health officials began asking vaccine-makers to eliminate the preservative from childhood vaccines. But seven years later, word got out that the preservative is still in the flu vaccine recently added to the childhood immunization schedule, and parents, medical experts, and scientists are outraged.

In seeking an independent review, the lawmakers basically told the Centers for Disease Control to butt out. They maintain that previous research conducted by the agency is flawed because it "was based on data collected prior to the removal of thimerosal and failed to explicitly compare the outcome of children who received thimerosal-containing vaccines with those who did not," they said.

The group has also criticized the Institute of Medicine for its 2004 public announcement that there is no link between vaccines and autism, because the conclusion for the most part, was based on European studies, when American children had been injected with 75% higher levels of mercury than the European children in the studies were exposed to.

In March 2006, the lawmakers sent a letter to the National Institute of Environmental Health Sciences, asking their agency to conduct a study of the CDC's Vaccine Safety Datalink, which contains records on 7 million children vaccinated since 1990.

"If the federal government is going to have a study whose results will be broadly accepted, such a study cannot be led by the CDC," the lawmakers wrote in the letter.

Although the debate over the cause of autism may rage on indefinitely, the rising costs to society of caring for and educating the children afflicted with the disorder can not be ignored.
On January 4, 2005, the Government Accountability Office advised the Subcommittee on Human Rights and Wellness Committee on Government Reform, that the average per pupil cost for educating a child with autism was estimated to be over $18,000 during the 1999-2000 school year, the most recent year in which data were available at the time of the report.

That means that six years ago, the GAO's estimate for educating autistic children was nearly 3 times the cost of educating a normal student.

The amount of money needed to educate autistic children is the highest per pupil cost for children receiving special ed services.

The epidemic does not discriminate, its happening in every state in the nation, due to the fact that under the mandatory vaccine schedule, children in every state received the same mercury-laced vaccines.

From December 1998 to December 2002, the autism population in California's Developmental Services System nearly doubled and the 97% increase in 4 years did not include children less than 3, persons classified with less common forms of autism, or persons who are suspected of having autism but are not yet diagnosed.

The total number of autistic students served statewide in-creased from 10,360 in December 1998 to 20,377 in December 2002.

Over the last 6 years, the state of Ohio experienced more than a 1,000% increase in students with autism, with 5,406 reported cases for the
2003-2004 school year, according to the Ohio Legislative Office Of Education Oversight.

This year, the Pennridge School District in Pennsylvania, expects to only receive about $1 million in federal funding, and only $2.8 million from the state, to cover its $11 million special ed budget. This means about 60% of the total cost will have to be paid by local taxpayers.
In recent years, the average age of autistic children entering the school system has shifted to much younger children. Under federal law, public schools must provide appropriate education for all children with disabilities, starting at age 3, and many autistic children remain in the system until age 21.

For very young children, the recommendation for early interven-tion has created an increased demand for more intensive behavioral therapy and educational services in general. However, the federal government only partially reimburses the states for the cost of educating autistic children, even though early intervention means that the services required for each child must now be provided for a much longer period of time.

And on the other hand, as more autistic children reach late adolescence, the need for out-of-home residential ser-vices is beginning to have a heavy impact on state budgets.

There is also an increase in public health care costs associated with the growing number of autistic children. For instance, according to state government records, South Carolina has an estimated 2000 children under the age of 18 with autism, and the great majority of these children are eligible for at least some services covered by Medicaid.

During the fiscal year 2005, according to the Department of Health and Human Services, South Carolina paid out more than $20 million for autism care, in large part, because most insurance companies do not cover the high cost of the specific therapies that have been found to be the most successful in treating children with autism.

A group of South Carolina lawmakers are trying to pass a bill that would require private insurers to cover services for all autism patients regardless of age. Industry lobbyist, Larry Marchant says that if passed, the bill would cause the health insurance premiums that individuals or families pay to increase 25%, and would average out to an extra $200 a month for those enrolled in family plans, according to State.com on March 26, 2006.

In addition, the financial burden that a disorder like autism takes on families is absolutely devastating. Upon becoming autistic after receiving vaccines at 16 months, Laura Bono says her son, "Jackson's medical and therapy needs began taking every bit of money we had saved or ever would have saved."

"The total we have paid for Jackson's medical, nutritional and private therapy expenses so far," Laura says, "is roughly $685,000 since August 1990."

That amount averages out to well over $50,000 a year.

There is no escaping the fact that the epidemic is having a profound impact on society; not only on autistic children and their families, but on our public health care programs and school systems as well. And, until vaccine-makers are held accountable, taxpayers will continue to carry the full burden.

Evelyn Pringle evelyn.pringle@sbcglobal.net

The Greenville News Supports Us

Monday, April 17

Insurance and autism
It makes compassionate and financial sense to mandate insurance coverage for autistic children.
Published: Tuesday, April 4, 2006 - 6:00 am

House lawmakers want to spend $7.5 million to fund therapy for children with autism. That's an appropriate expenditure for this disease that can severely impair a young person's ability to communicate, form relationships and adapt to change.

But the money shouldn't deter lawmakers from considering another legislative initiative requiring private insurance companies to cover autism therapy, which can cost up to $100,000 a year. The House's proposed allocation is an attempt to prevent the state mandate on private insurance from moving forward.

But the state money allocated may not be enough to provide therapy to all young people who need it. In South Carolina, about 2,000 children under 18 have autism. In addition, the $7.5 million is coming from a one-time source -- part of the $30 million the state is expected to gain from the sale of the old state mental hospital. The money might not be available next year.
Advocates argue that early intensive therapy can do wonders for some autistic children. The State newspaper quoted advocates as saying that almost half of children who get at least 40 hours of therapy a week can enter the first grade on time. Another 40 percent make considerable progress, they say.



Even though therapy may be costly for insurers, it would save the state considerable sums in the future, advocates say. An autistic child who receives insufficient treatment almost always ends up being cared for in an institution at taxpayer expense. That can cost the state up to $4 million for each patient.
Insurers, however, question the effectiveness of intensive treatment. Certainly, the mandate to cover autism would be financially burdensome for insurers, costing tens of millions of dollars just in South Carolina. Those costs most likely would be passed on to businesses and individuals in the form of higher premiums at a time when companies and families are struggling to pay for health insurance.
But compassionate consideration for children suffering from autism should persuade state lawmakers to follow the lead of the 17 other states that require coverage. Equally persuasive is the argument that early therapy could save the state millions of dollars later.
The $7.5 million House lawmakers want to use for autism treatment would benefit from the federal government's 3-to-1 match through Medicaid. That will cover many of the children needing intensive autism treatment, but not all of them. Lawmakers eventually should mandate private coverage for autistic children.

Responses From Around the Country

From the Schafer Autism Report

COMMENTARY
"Because It's Too Expensive"
By Mary Tiesenga

When I read recently about an insurance industry lobbyist in South Carolina stating, as the rationale for denying behavioral therapy coverage for autism, "because it's too expensive", I was simply stunned.

The arguments that insurance companies have been using forever and a day to deny coverage are, alternatively, that behavioral therapy is "educational" in nature, "provided by law by public school systems", or "experimental". But expensive? Since when has that been a valid reason for denying coverage of an efficacious treatment for a severe medical issue?

Every major medical condition is expensive to treat! Every one. Cancer, AIDs, diabetes, MS, autoimmune disorders, heart disease, Alzheimer's, trauma care, multiple organ failure--you name it.

Last year, my physician-father fell on the ice walking into a hospital where he was to perform surgery. He broke his hip and elbow-badly-and ended up in surgery himself, with complications, and then more complications. He ended up in intensive care for an extended period of time, and then in a rehab hospital for another lengthy stint. In two months my father's care managed to gobble up the same amount of money that it cost our family for over 3 years of intensive 1:1 ABA therapy for my now previously-autistic son.

Who paid for my father's care? I did. You did. And both you and I pay for every major medical problem through our taxes and health insurance premiums. We pay for cousin Julia's breast cancer surgery and chemo, Aunt Elsie's kidney transplant, our neighbor's trauma surgery after the head-on collision, and the endless succession of new pharmaceutical agents used to treat nearly every malady known to man-many with Mercedes class price tags and/or of limited efficacy.

A beautiful little girl in our town was diagnosed with an aggressive, late stage cancer a few years back. She was not taken to just one world-class cancer center, but three, with the whole town cheering her on.

She was given a grim prognosis, but we all prayed for a miracle anyway, and everyone in our town paid for her care (again, through their medical insurance premiums and tax dollars)--gladly, I might add, with no one questioning for a second how "expensive" it was.

Ahhh, and who paid for my son's care? Did we all help with that too?
Nope. That was all on us -- and inexplicably so. The science behind ABA is now so old and so solid, and both the partial and complete rates of response so impressive, that my drug-developer husband informs me that, if a drug, it would surely be among the greatest "blockbusters" of all time, with reimbursement assured. It is a sad commentary, that in the absence of pharma lobbyists to get the job done, the medical professional organizations such as the AAP and AMA, along with our public health establishment, have not managed to convince the appropriate authorities and organizations to provide coverage for this care.

The result has been beyond tragic, and is multi-dimensional. Families have no choice but to go it alone and are gutted financially. Most don't even come close to providing their child with the amount and quality of therapy associated with good outcomes. The appropriate government and educational infrastructures around training and funding the therapy fail to develop or develop dysfunctionally, resulting in a vast undersupply of therapists, in turn driving prices up and quality down. The physical and emotional stress associated with both running and funding effective programming is crushing and unrelenting. Virtually everyone runs out of money at some point, divorce is rampant, and, most tragically, many children who could have gotten better don't.

What the expense argument is really all about is the effective rationing of healthcare in this country, based on cost. If we've come to the point of needing to ration medical care, fine, let's have an honest discussion about it, because using virtually any criteria upon which to limit care, ABA would land at near the top of the heap of things to cover, not deny. Behavioral therapy is astonishingly effective, and even more astonishingly cost effective. My son, the one they told me to put in an institution, who is now in a regular kindergarten, is living proof. And please, don't tell me he wasn't worth it.

"The State" Paper Opines That Insurance Has a Role to Play in Treating Autism

The State - Wed, Apr. 12, 2006

State, insurance both have roles in autism treatment

WHEN THE LEGISLATURE passed a law last year requiring insurance companies to cover brain illnesses the same way they cover bodily illnesses, lawmakers carved out a handful of exceptions that had more to do with politics than policy.
So this year, one of the left-out groups — parents of children with autism — is back at the State House. These parents argue that there’s no reason for an insurance company to cover treatment for a child with cancer but not a child with autism.
This year’s request is for more than just parity, though; it’s to require coverage for whatever treatment a physician orders — a standard that few insurance companies follow for other conditions. We doubt such a request would get very far inside the State House if not for the financial argument. And that argument actually works against the request, by helping to clarify the tricky question of when treatment is the responsibility of insurance companies and when it becomes the responsibility of the state.
The financial argument for requiring insurance companies to provide intensive treatment for children with autism is that it will save the state money in the long run: Severely autistic children who don’t receive sufficient treatment nearly always end up institutionalized, at a cost to the state of up to $4 million over a lifetime. But up to half the children who receive this treatment, at a cost of about $100,000 a year, can function normally by age 6; another 40 percent make substantial improvement and still need some special care, but not as much as they would have otherwise.
Since treating these children would benefit all South Carolinians financially, through lower state spending obligations, it doesn’t seem right to require just those South Carolinians who have private health insurance to cover the costs, as an insurance mandate would do.
So the general direction the House is taking makes sense: It voted to provide intensive coverage to 3- to 6-year-olds through the state-federal Medicaid program.
But there are two major problems with the House plan.
The first is the funding. Representatives voted to use $7.5 million from the sale of the State Hospital on Bull Street to fund the first year of the increased coverage. That’s money that won’t be available to keep the program operating the second year. Worse, it might not even be available the first year. Not only has the property not yet been sold, but it’s not at all clear that a court will allow the state to spend the money this way. If this is a smart investment of public money — and we believe it is — then lawmakers need to use real, reliable money to pay for it.
The second problem is that House members propose to let insurance companies completely off the hook for providing equitable coverage for autism. That didn’t make sense last year, and it doesn’t make sense this year. Insurance companies should be required to use the same standards to decide what treatment to pay for when a child has autism as when a child has any other illness.
That might not result in a high-enough level of care to allow autistic children to lead normal lives, and if it doesn’t, that’s where the state — acting in its own interest — should take over and make up the difference.

© 2006 The State and wire service sources. All Rights Reserved.http://www.thestate.com

Public Hearing on Tuesday, April 4

The South Carolina House Insurance Subcommittee will once again focus on autism funding at a hearing on Tuesday, April 4 at 11:00. The hearing is expected to last about one hour, and there should be some action taken on pending legislation. All are invited! The hearing will be in the Blatt Building on the State House grounds.