Monday, June 23, 2008

Today Show Story

Here's the story the Today show recently aired about autism and insurance.

Thursday, April 10, 2008

Not Everyone is Happy About Ryan's Law

Following a news story in the Charleston "Post and Courier" that discussed Ryan's Law were the following comments. Thank goodness some folks had the decency to respond to the first ignoramus.


Posted by rollo (anonymous) on April 1, 2008 at 11:04 p.m.

Wonderful, so now the insurance rates for everyone in SC go up to cover another ailment most of them have never pressed a claim against!!

And a lawyer got an award for screwing us! Isn't that SPECIAL!!!

Feel good stories always touch me, right in the wallet.


Posted by luluhowle (anonymous) on April 2, 2008 at 10:08 p.m.

Rollo, If you really want to feel screwed and have more money taken out of your wallet, lets do absolutely nothing for these kids. Forget the few dollars more it will cost you per month, less than 1% according to the insurance industry itself, to give these children the chance to begin first grade in a regular classroom with their peers reducing the amount schools have to spend on special education. Just forget the few more dollars you take out of your wallet to provide the needed therapies that will give these kids the chance to become tax paying members of society themselves! So, if we let you keep your selfish few dollars and do nothing, you end up paying hundreds more dollars in taxes instead to house these individuals at a cost of over $4 million per person for the rest of their lives in institutions just because you are so concerned about your few dollars. There are 28,000 individuals with autism in SC now, you do the math. I too pay insurance premiums and I too have a child with autism. Parents go bankrupt in order to pay for these therapies. How does that help the economy? I have spent tens of thousands of dollars myself for these therapies that I could have spent on buying the products or services that you yourself offer. I have seen the importance and benefit of these therapies and have seen my son return to our world from the world of his own. Lorri Unumb deserves more than this award and she has righted an injustice that she herself will not benefit from! I'd call you an idiot but I pity you instead!


Posted by cecelia (anonymous) on April 2, 2008 at 11:24 p.m.

In life, as adults, most of us have choices. We choose to drink, become alcoholics, need liver transplants, and expect insurance to pay for the rehab and transplant. We eat poor diets, become obese, and expect insurance to pay for the hospitalizations and medications for the resulting hypertension and obesity related illnesses. We smoke, and expect insurance to pay for our chemo for lung cancer. And the list goes on. I didn't smoke, drink, or do drugs during my pregnacy, or ever, for that matter. Went to the doctor for every appointment. PAID MY INSURANCE PREMIUMS, and deductables. Breastfed, provided a loving home and family for my child, who was diagnosed with autism before his second birthday. So, Rollo, why don't we just save everyone a lot of money. No coverage for adults whose bad habbits lead to their health problems, they pay out of pocket. Instead, let's give healthcare coverage only to people who have lead good clean lives and are sick or have sick children anyway. Bet it would cost less, and save you a bundle on premiums! Unless, of course, you smoke, drink, or eat fast food regularly, then I guess you'd be out of luck. Lorri is amazing, kudos to her for standing up for those who literallly can't speak for themselves.

Wednesday, April 09, 2008

From Rep. Nathan Ballentine's Website

Today I stumbled across this blog post from our very first sponsor of Ryan's Law, Rep. Nathan Ballentine. He modestly downplays his role in the passage of Ryan's Law in this post, but I can assure you that he was instrumental right up to the last day. -- LSU

Wednesday, April 2, is Autism Awareness Day.

I can honestly tell you that, until three ladies came into my life (Lorri Unumb, Lisa Rollins, Marcella Ridley), the only thing I knew (or thought I knew) about autism was from the movie, Rain Man.

Since that time I have learned so much and I’m pleased to see all the national attention for a much needed cause in our country.

The statistics on Autism and it’s impact are truly unbelievable.

In December 2005, I agreed to be the floor leader in the House for a bill that was commonly referred to as “Ryan’s Law”. The bill was named for Lorri Unumb’s six year old son and co-sponsors quickly signed on to give their support. Within months, there were hearings in both the House and the Senate and attention was growing!

Unfortunately though, a good bill with several cosponsors and tons of grassroots support failed to become law that year. The bill ultimately died in the Senate (primarily due to “the M word” - mandate). Some good did come out of the journey that year as Rep. Kenny Bingham (R-Lexington) was able to provide some children in our state with insurance coverage by means of a budget proviso.

The next year, we started over again.

The new bill passed in the Senate first and then easily passed the House. Within weeks, Ryan’s Law became a reality. Both chambers unanimously supported the law and I can still recall seeing the ladies, families, and children in the House Balcony that day.

The work of those three ladies - Lorri, Lisa, and Marcella - had finally enabled hundreds of children in our state to be able to get the services they need to be “mainstreamed” into society. The journey was shared on Lorri’s blog for everyone to follow and others from across the nation were contacting her and her Grassroots Gang.

The ironic beauty in all this was that none of those ladies who led the fight benefited from the new law! How refreshing to see people fight for a cause they believe in when they stand to gain nothing and everyone else stands to gain plenty?

I’ve been a part of some wonderful causes and legislation in my four short years in the General Assembly; but, it’s this journey, these ladies, and Ryan’s Law that will always stay with me.

Tuesday, April 08, 2008

The CNN Video

Here's the link to the video from World Autism Awareness Day:

I don't know how long it will be available.

CNN Coverage of Ryan's Law on World Autism Awareness Day

Mom wins fight for autism insurance
Story Highlights
Most medical insurance policies generally don't cover autism treatment
One lawyer-mom whose son has autism decided to fight for coverage
She wrote a bill requiring insurers to cover treatment, got other parents to help lobby
"Ryan's Law" takes effect in July in South Carolina; 2 other states have similar laws

By Justine Redman

LEXINGTON, South Carolina (CNN) -- Ryan Unumb just turned 7 years old. He has about 100 words in his vocabulary, even if they are difficult to understand. He's potty trained. He loves playing with water. He follows instructions, he asks for food when he's hungry, and he gives lots of kisses.
He's not where a 7-year-old should be developmentally, but for a child with severe autism, his parents are thrilled with his progress.
Lorri and Dan Unumb attribute these achievements to the 40 hours of intensive therapy Ryan gets every week. Tears streaming down her face, Lorri says they know they're lucky they can afford the team of private therapists who spend all day at their house outside Columbia, South Carolina.
"I've met so many other moms who were doing the best they could, and I just wanted to say to them, 'You know, an hour a week of speech therapy for your child is never going to make him better,' " the mother of three says.
"But I didn't want to tell them what they needed is 40 hours a week of therapy, because there's nothing they can do to buy that."
Nothing they can do because most medical insurance policies generally don't cover autism treatment, and it's too expensive for many parents to afford out of pocket. Ryan's therapy costs between $70,000 and $80,000 a year. That's Lorri Unumb's entire salary.
She and her husband are both lawyers; after Ryan's autism was diagnosed five years ago they sold their house, downsized and sacrificed to cover costs.
"It's not like you read your insurance policy and you can see a specific exclusion," Lorri Unumb says of the early days after Ryan's diagnosis. "We submitted bills, and we'd get denials back that said 'experimental... denied,' or 'provided by a non-licensed provider... denied.' Or sometimes the insurance companies would say 'this therapy is educational in nature, not medical... denied.'"
As a lawyer and a law professor, Unumb decided to do something about it, to force insurance companies in South Carolina to cover autism. Watch more on the Unumbs' fight to change the law on insurance coverage of autism »
She wrote a bill, recruited other parents to help her lobby state legislators, and two years later, got the bill passed. Known as Ryan's Bill, it will go into effect as Ryan's Law in July.
Ryan's Law mandates that insurance companies provide up to $50,000 a year for behavioral therapy up to the age of 16. It also prohibits insurers from refusing other medical care to children because of their autism. It doesn't, however, apply to people or companies who are self-insured, such as the Unumbs.
Similar laws have already been passed in Texas and Indiana, and campaigns to do the same in other states have the support of the advocacy group Autism Speaks.
The health insurance industry argues that so-called "mandates" like this ultimately do more harm than good.
"It's not that we oppose a particular mandate," says Susan Pisano of America's Health Insurance Plans, a Washington-based association that represents health insurers. "We oppose the idea of mandates in general because we think in the end what happens is that health care is less affordable and less accessible when mandates are imposed."
But as for why autism isn't covered in the first place, the industry insists that behavioral therapy is an educational measure, not a medical one, and therefore not its bailiwick.
"I think that it's perfectly understandable that if you are diagnosed with a condition, or a family member is diagnosed with a condition, you want to get services," Pisano says. "Traditionally those services have been provided through early intervention programs for children in the 0-3 age group, and by schools for children who are older."
Pisano says the real issue is one of public policy. "We're seeing around the country, as the number of children along the autism spectrum is increasing and as budgets are being cut back, we see a move to transfer responsibility for some of the services [from the government] to the health care system."
For the Unumbs and many other parents though, the bottom line is that their child's autism was diagnosed by a doctor, not a teacher, and they want the coverage they feel entitled to after years of paying insurance premiums.
Lorri Unumb was so inundated by phone calls from parents of children with autism around the country wanting advice on how they, too, could go up against one of the most powerful industries in the nation and win, that she and her collaborators started holding open workshops to explain how they'd done it.
While admitting that she might not have done it if she'd known how hard it would be, Unumb regularly gives impassioned talks on how to garner grass-roots support, how to lobby state legislators and get signatures on bills.
"If you have a child with autism, you're exhausted all the time. And the last thing in the world that you have time to do is to take on the insurance industry. That's why it's just persisted this way for so long, it's that the very people who have the motivation to get the coverage just can't do it," says Unumb.
But even with Ryan's Bill passed, she cautions, it's not over yet. "I've been contacted by a number of people from around the country who have told me that they're planning to move to South Carolina because of Ryan's Law. That's both gratifying and scary. ... It's gratifying because I love to see as many children as possible take advantage of the new law. It's scary because it hasn't been implemented yet, and it's an insurance policy so there are going to be all kinds of issues with implementation."
Justine Redman is a CNN producer in Washington

Monday, June 25, 2007

Nice Coverage in Spartanburg Paper

Insurers soon required to cover tots' treatment

Staff Writer
Published June 25, 2007

Brady Verett is all smiles and giggles as he reads the words "girl," "star" and "pig," matching the written words with pictures.

The bubbly blond also has learned to write his name, he's potty-trained and is learning to dress and feed himself.

While these seem like typical tasks for a 3 1/2-year-old to handle, they are chores Brady might not be able to complete without the aid of special therapy, called applied behavioral analysis. He was diagnosed a year ago with autism, a neurobiological disorder that affects the ability to communicate and adapt to change. It usually lasts throughout a person's lifetime.

Research has shown that ABA therapy is the most effective for children such as Brady, teaching them basic language, sorting and identification concepts.

The results of ABA are positive, parents say, but the effects on the wallet are straining. Brady has 30 hours of therapy each week, and for most families, the cost ranges from $30,000 to $75,000 a year.

"There are some families that can afford that, but most middle-class folks cannot," said Brady's mother, Montie. "There are some families that go without the services because they can't afford it."

Relief is coming to families like the Veretts. A law passed earlier this month, known as Ryan's Law, will require private insurance companies, beginning July 1, 2008, to cover children with autism and related therapies, providing up to $50,000 a year for children ages 16 and younger. That's money that no longer will have to come directly out of the pockets of families with autistic children.

"Families and children will have opportunities they never had before, and kids will get treatment they never had before," said Sen. Joel Lourie, D-Columbia, an avid supporter of Ryan's Law and one of the bill's sponsors. "In many cases, we've provided not only treatment, but hope, for thousands of children."

'Ryan's Grassroots Gang'
Ryan's Law was prompted by a Charleston mother and lawyer, Lorri Unumb. Her 6-year-old son, Ryan, is severely autistic.

Lorri and her husband are both lawyers who can afford the therapy costs. But it's still so expensive that they sold their house to move into a smaller home to cover costs.

"The average family income in South Carolina is $40,000," Unumb said. "If you're an average family trying to provide this therapy for your child, forget it."

In May 2005, as a professor at the Charleston School of Law, Unumb began researching insurance policies in other states that covered autism, and she decided to spearhead a movement in South Carolina. Hundreds of parents rallied together as "Ryan's Grassroots Gang," pushing for the bill to become law.

Their efforts proved successful in 2006, although the law that passed didn't match the original intent that Unumb and her team wanted. That law created a Pervasive Developmental Disorder program offered through the S.C. Department of Disabilities and Special Needs, which essentially provided public funds for autistic children whether they were Medicaid eligible or not.

Nearly 400 families applied for the P.D.D. program this year, and currently 130 children are being served with $3 million appropriated by the Legislature. Now, another 220 children are anticipated to be served with an additional $4.5 million in continuing funds. That would allow about 350 children to receive these vital intervention therapies. Each child is limited to three years in the program, which then would allow new children to be served.

Up to $50,000 coverage
Ryan's Law requires coverage for medium and large companies and state employees. Many small companies, including those that are self-insured, will not receive coverage unless they adapt their plans, Lourie said. Families can get up to $50,000 a year in coverage, and that amount will increase by the rate of inflation.

"The cost of treatment, and whatever minor impact it has on insurance premiums, is significantly lower than the cost of children who weren't treated early or who may be candidates for institutionalization," Lourie said.

So, having a public-private partnership is ideal, advocates say.

"New kids are diagnosed every day," Unumb said. "There have been a couple of dozen children diagnosed since Ryan's Law passed, so the outreach needs to be continuing."

There are 20,000 individuals with autism in the Palmetto State and roughly 377 new cases are diagnosed in children each year, according to Craig Stoxen, president and CEO of the South Carolina Autism Society. His organization has offered family support, information and referral services for 35 years.

ABA therapy has been "the most-proven effective behavioral therapy we know of" for autistic children, Stoxen said. It's been around for about 40 years, and it's most effective for children between ages 3 and 5. Forty-seven percent of kids who get early ABA therapy will be mainstreamed into "regular" classrooms in first grade, Stoxen said.

"The earlier you get it, the better they do," said Verett, who added that Brady could only retain a few words before he began therapy in January. "I don't know where Brady would be without it."

A handful of other states have similar legislation, including Indiana, Wisconsin, Minnesota and Colorado, Stoxen said, and 27 states had bills introduced this year addressing the same issue. The ultimate goal, Stoxen said, is that insurance coverage for autism becomes a federal mandate.

"It really is a financial hardship," Stoxen said, "so a lot of kids who need the service get very limited service. Or even worse, they get nothing at all."

The Verett family was fortunate enough to be among the 130 families now under the P.D.D. program. When it ends for them in three years, they hope insurance will pick up the costs.
Brady's speech and vocabulary have expanded, and he won the "Outstanding Effort Award" in his special education class at Oakland Elementary last year.

"I'm just amazed at what God has done," Verett said. "Brady would not be where he is if we were not in South Carolina."

Wednesday, June 13, 2007

One Week Later

Lawmakers mandate autism coverage
General Assembly sends strong message of support for disabled children by overriding governor's veto

Published: Wednesday, June 13, 2007 - 2:00 am

State lawmakers recently handed Gov. Mark Sanford a dramatic defeat by voting unanimously to override the governor's veto of a bill requiring private insurance coverage for autistic children. Lawmakers were right to do so.

Autism, a disease that can severely impair a young person's ability to communicate, form relationships and adapt to change, was the only neurological disorder not required to be covered by private insurance in South Carolina. The law will require insurance to pay for treatment for children, age 16 and under, up to a maximum of $50,000 a year beginning in July 2008.

Sanford, in his veto message, raised legitimate concerns about the autism mandate increasing the cost of insurance for everyone else. He said the law would add $10.5 million in costs to the State Health Plan next year and about $48 annually to private insurance premiums paid by South Carolina families.

But state lawmakers argued rightly that the state may save millions by investing in early intervention. An autistic child who receives insufficient treatment sometimes can end up being cared for in an institution at taxpayer expense. That can cost the state $4 million to $7 million for each patient. Intensive early therapy, however, can do wonders for some autistic children. Advocates say that about 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.

That therapy, however, can cost up to $75,000 a year, putting it out of reach of many families with autistic children. Advocates say families across this state are forced to get second mortgages on their homes or face bankruptcy trying to provide the intervention their children need. Or they face the heart-wrenching experience of placing their children in group homes or institutions -- although there's often a 15-year waiting list for such institutions.

In his veto message, Sanford reiterated his support for Health Savings Accounts and the ability of the market to create "better products and services." Many South Carolinians no doubt agree in principle with Sanford when he extols the free market, but it's hard to see how health savings accounts can help a family faced with therapy costing up to $75,000 a year.

Even as he was vetoing the bill, Sanford said: "My prayers go out to any family afflicted with any of these (autistic spectrum) disorders." Given that sentiment, it's unfortunate Sanford was unable to follow the lead of state lawmakers in approving the bill. At least 17 other states require insurance coverage for autistic children. South Carolina appropriately will join those states in providing a better life for autistic children.

Friday, June 08, 2007

The text of Ryan's Law


Be it enacted by the General Assembly of the State of South Carolina:

Coverage required for autism spectrum disorder

SECTION 1. Article 1, Chapter 71, Title 38 of the 1976 Code is amended by adding:
"Section 38-71-280.

(A) As used in this section:

(1) 'Autism spectrum disorder' means one of the three following disorders as defined in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association:

(a) Autistic Disorder;
(b) Asperger's Syndrome;
(c) Pervasive Developmental Disorder - Not Otherwise Specified.

(2) 'Insurer' means an insurance company, a health maintenance organization, and any other entity providing health insurance coverage, as defined in Section 38-71-670(6), which is licensed to engage in the business of insurance in this State and which is subject to state insurance regulation.

(3) 'Health maintenance organization' means an organization as defined in Section 38-33-20(8).

(4) 'Health insurance plan' means a group health insurance policy or group health benefit plan offered by an insurer. It includes the State Health Plan, but does not otherwise include any health insurance plan offered in the individual market as defined in Section 38-71-670(11), any health insurance plan that is individually underwritten, or any health insurance plan provided to a small employer, as defined by Section 38-71-1330(17) of the 1976 Code.

(5) 'State Health Plan' means the employee and retiree insurance program provided for in Article 5, Chapter 11, Title 1.

(B) A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured's treating medical doctor in accordance with a treatment plan. With regards to a health insurance plan as defined in this section an insurer may not deny or refuse to issue coverage on, refuse to contract with, or refuse to renew or refuse to reissue or otherwise terminate or restrict coverage on an individual solely because the individual is diagnosed with autism spectrum disorder.

(C) The coverage required pursuant to subsection (B) must not be subject to dollar limits, deductibles, or coinsurance provisions that are less favorable to an insured than the dollar limits, deductibles, or coinsurance provisions that apply to physical illness generally under the health insurance plan, except as otherwise provided for in subsection (E). However, the coverage required pursuant to subsection (B) may be subject to other general exclusions and limitations of the health insurance plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, utilization review of health care services including review of medical necessity, case management, and other managed care provisions.

(D) The treatment plan required pursuant to subsection (B) must include all elements necessary for the health insurance plan to appropriately pay claims. These elements include, but are not limited to, a diagnosis, proposed treatment by type, frequency, and duration of treatment, the anticipated outcomes stated as goals, the frequency by which the treatment plan will be updated, and the treating medical doctor's signature. The health insurance plan may only request an updated treatment plan once every six months from the treating medical doctor to review medical necessity, unless the health insurance plan and the treating medical doctor agree that a more frequent review is necessary due to emerging clinical circumstances.

(E) To be eligible for benefits and coverage under this section, an individual must be diagnosed with autistic spectrum disorder at age eight or younger. The benefits and coverage provided pursuant to this section must be provided to any eligible person under sixteen years of age. Coverage for behavioral therapy is subject to a fifty thousand dollar maximum benefit per year. Beginning one year after the effective date of this act, this maximum benefit shall be adjusted annually on January 1 of each calendar year to reflect any change from the previous year in the current Consumer Price Index, All Urban Consumers, as published by the United States Department of Labor's Bureau of Labor Statistics."

Time effective

SECTION 2. This act takes effect July 1, 2008, and applies to health insurance plans issued, renewed, delivered, or entered into on or after this act's effective date.

From the official South Carolina legislative website

Make sure you read the last couple of entries. They're my favorites.

Session 117 - (2007-2008)

S*0020 (Rat #0085) General Bill, By Elliott, Mescher, Cleary, Hutto, Lourie,
Moore, Sheheen, Reese, Knotts, Leventis, Land, McGill, Rankin, Campsen, Grooms,
Hawkins, Short and Scott


11/29/06 Senate Prefiled
11/29/06 Senate Referred to Committee on Banking and Insurance
01/09/07 Senate Introduced and read first time SJ-35
01/09/07 Senate Referred to Committee on Banking and Insurance SJ-35
03/15/07 Senate Committee report: Favorable with amendment
Banking and Insurance SJ-8
03/19/07 Scrivener's error corrected
04/26/07 Senate Committee Amendment Tabled SJ-18
04/26/07 Senate Amended SJ-18
04/26/07 Senate Read second time SJ-18
04/26/07 Senate Unanimous consent for third reading on next
legislative day SJ-18
04/27/07 Senate Read third time and sent to House SJ-1
04/27/07 Scrivener's error corrected
05/01/07 House Introduced and read first time HJ-6
05/01/07 House Referred to Committee on Labor, Commerce and
Industry HJ-6
05/23/07 House Committee report: Favorable Labor, Commerce and
Industry HJ-7
05/24/07 House Read second time HJ-28
05/24/07 House Unanimous consent for third reading on next
legislative day HJ-29
05/25/07 House Read third time and enrolled
05/31/07 Ratified R 85
06/06/07 Vetoed by Governor
06/07/07 Senate Veto overridden by originating body Yeas-43 Nays-0
06/07/07 House Veto overridden Yeas-114 Nays-0

The Greenville News

Lawmakers restore coverage for autistic kids
House, Senate unanimously override Sanford veto of bill requiring insurance for disorder

Published: Friday, June 8, 2007 - 2:00 am
By Liv Osby

The South Carolina House stood and applauded Thursday after voting 114-0 to override Gov. Mark Sanford's veto of a bill requiring insurance coverage for autistic children.

Earlier, the Senate voted to override as well, and advocates called it "a momentous day" for children with autism and their families.

"I'm just so pleased that our General Assembly voted to override the governor's veto," said Marcella Ridley, a Columbia mother of an autistic child. "It took away all the nightmares of the last 24 hours."

"How often has there been a unanimous override in the House and the Senate?" said Dr. Desmond Kelly, medical director of developmental-behavioral pediatrics at Greenville Hospital System's Children's Hospital. "The legislators were clear in their support, and that's great."

Sanford spokesman Joel Sawyer said the Legislature exercised its prerogative.

"We laid out our reasons for vetoing the bill and felt they were compelling," he said. "Obviously, the Legislature disagreed. But that's the nature of the process."

Autism is a spectrum of developmental disorders that afflicts about 1.5 million Americans, about 9,000 of them in the Palmetto State. Intensive early intervention helps roughly half of all autistic children succeed in school and hold down jobs as adults, avoiding more costly special education classes and institutions.

Since it can cost more than $50,000 a year, many families can't afford it or go into debt to finance it. But beginning in July 2008, insurance will be required to pay for up to $50,000 a year of the therapy for children under 16.

In his veto message, Sanford said the mandate would raise the quality of insurance for families with autistic children, "but doing so would correspondingly increase the cost, and consequently lower the access to health insurance, for many other families across our state."

Sanford said the bill would add $10.5 million in costs to the State Health Plan next year and about $48 a year to premiums paid by other families. But Sen. David Thomas, R-Greenville, said those numbers are too high and that the state stands to save millions that it spends on lifetime institutionalization of autistic adults by investing in early intervention.

"These folks are headed to institutionalization unless there's early intervention," Thomas said. "Just in terms of money, we're talking hundreds of millions of dollars that will be saved over time."

Thursday, June 07, 2007

South Carolina Headlines

House overrides autism veto; bill now law

The House easily overrode Gov. Mark Sanford's veto of a bill Thursday extending insurance coverage to children with autism.The vote was 114-0.

After voting, House members turned toward the balcony and gave families representing children who have the disorder a standing ovation.

Before the vote, Rep. B.R. Skelton, R-Pickens, chastised the governor for striking down the measure.

"He has four healthy children and I don't think he has ever met anybody who didn't have healthy children," Skelton said.

The Senate had previously overrode the veto, also unanimously.

The governor' s office maintains the provision will raise health care costs.

Wednesday, June 06, 2007

South Carolinians Write to Governor About Ryan's Law

Governor Sanford,

I am writing in regards to "Ryans Law", to give insurance coverage across the state of South Carolina for children with Autism. This is a very important law and needs you to sign it to pass.

As a special education teacher, I have dealt with many families with Autistic children and have taught many autistic children. These families have so very much to deal with and truly need the support of insurance companies in order to best meet the needs of their very special children. It was in fact, an autistic child who made me want to become a special education teacher and change my major from music more than 10 years ago and I feel blessed for doing so.

Please sign the Autism Equality Act. It was passed unanimously by the house and
senate and now just needs your signature. Your signing this bill
would positively impact children, families, their friends and schools.

Again, please give these very special children your support and help them get all of the services that are rightfully theirs and should be covered by their insurance companies.

Thank you,

Shelley Hardin
Shelley E. Hardin, NBCT
Special Programs, Department Chair
Airport High School

Education's purpose is to replace an empty mind with an open one. - M. Forbes

Tuesday, June 05, 2007

South Carolinians Write to Governor About Ryan's Law

Dear Governor Sanford:

I am writing to ask for your support of the Autism Equity Act (“Ryan’s Law”).

With proper medical intervention, studies show that almost 50% of autistic children improve to such an extent that they can enter mainstream classrooms unassisted after a few years of treatment. The progress that we make in therapy, particularly at very young ages, is catalytic. Our patients metamorph from frustrated, nonverbal, disconnected children to empowered, interactive kids. They still have autism, but the symptoms are certainly mitigated, potential for learning is much higher, and the families have regained their “babies”, who often turn out to be bright, humorous, tax payers.

Routine and consistency are the critical elements of success. However, often our efforts are confounded by insurance limits, caps, and exclusions. Imagine the devastation of a diagnosis of autism, then discovering that your policy has a $500 lifetime cap on language therapy. One of my current patients is only covered for the first sixty days of each year. Another child cannot obtain coverage for less than $600 per month due to “pre-existing condition”.

The parents are virtually disenfranchised by their own health system. They typically spend vast amounts of time and money procuring therapy that we know is effective, and risk financial instability in their efforts. After paying premiums and deductibles, this burden is patently unfair.

Today is the day. Please: help the children in South Carolina.


Sally Asquith, MS, CCC-SLP
Pediatric Speech-Language Pathologist

Monday, June 04, 2007

South Carolinians Write to Governor about Ryan's Law

Dear Governor Sanford,

My wife and I are the grandparents of a very smart and bright 8 year old with autism. We have seen the progress he has made thanks to ABA therapies. He continues to make progress but after this year, the money that my son has to pay for those therapies runs out.

He has been paying with the help of the entire family, $15,000 a year since our grandson was 3 for 20 hours a week of ABA. Our grandson should have been getting 40 hours a week.

The passage of Ryan's Law by the legislature has given hope to not only the continued progress of my grandson but to many other parents in SC who are struggling to provide this proven therapy for their children. Not only will your signing this law help children who have no other alternative to fight this disease but it also will save the tax payers of this state money by reducing the number of these children that would become wards of the state at tax payers expense.

Governor, my wife and I are in our 70's and have lived in this state all of our lives. We have worked hard to make a life for ourselves and our son and now we see him doing the same for his son with all that is in him. He is not asking for a handout, only for the help he needs to give his son the same opportunities that we have given him and that you want to give to your children.

As a father and a grandfather, I ask you to look deep into your own heart and ask yourself what you would do if your child were autistic and you had no other place to turn.

This bill is supported not only by the autism community but also by the insurance industry after the compromise was reached in the Senate. We ask that you support this bill for the benefit of all South Carolinians.

Kindest Regards,
Bob and Selma Howle

From WIS-TV in Columbia

Autism bill supporters holding out for governor's signature

COLUMBIA, SC (WIS) - One of the bills that is still hanging out there is one that advocates say would help autistic children. It has unanimous support in the House and the Senate. All it needs to become law is the governor's signature.

"I trust the governor will do the right thing. I believe that he will," says Marcella Ridley.

How did a stay-at-home mom from Columbia, end up doing television interviews - schmoozing with lawmakers, and waiting to see whether the governor will meet Wednesday's deadline to sign a bill into law?

Ridley says, "I never thought I'd be sitting here on June fourth - I didn't. I'd be lying if I said I wasn't disappointed in that."

People call Marcella Ridley, Lorri Unumb and Lisa Rowlings the angels for autism. For two years, the ladies have spearheaded the fight for legislation they believe will help autistic children their reasons are personal. Each of the ladies has an autistic child.

Marcella's little guy is named Winston, and the bill is actually named after Lorri's son Ryan.

"These are three moms on a mission," says Senator Joel Lourie. It's a mission the senator has spent a lot of time on. He says the bill would improve treatment options for kids with autism.

And while he says at first insurance companies were hesitant to cover the costs, now everyone has signed off on it, everyone except the governor.

When WIS called the governor's office to see why, a spokesman will only tell us that Governor Sanford is looking the bill over.

Obviously, everyone who supports the bill wants to see the governor sign it, but if the governor does veto the bill, that doesn't mean it's dead in the water.

Senator Lourie says, "If he were to veto the bill then we go to work immediately Thursday morning on overriding the veto and that would start in the Senate first."

The governor has until midnight Wednesday to make a decision. Ironically, Wednesday is Winston's seventh birthday.

Reported by Kara Gormley

South Carolinians Write to Governor About Ryan's Law

Dear Governor Sanford,

I am the parent of two boys, 8 and 5. While I would love to take your time to tell all about both of them, I’m compelled to tell you about my 8 year old, Wills, as he is autistic and Ryan’s Law is currently sitting on your desk awaiting your signature.

Wills was diagnosed with autism at the age of 2 ½. While both my wife and I were devasted with the diagnosis, we pursued every treatment option available. After extensive research and consultation we decided on ABA therapy. Due to the persistence and diligence of my wife, we were able to convince our insurance company to pay for this therapy, one of the very lucky few that have been able to do this. I’d like to tell you what this has enabled us and our son to do.

First, our son is a rising 3rd grader at Brennen Elementary in Richland County School District One. He was in a typical 1st and 2nd grade classroom, and will be in the AAP classes offered next year. He reads on a 6th grade level, does 6th grade level math, but most importantly, has friends. While we still struggle with emotional and social issues with Wills and continue to work with him on a daily basis, we count our blessings that he is, by all accounts, ‘normal’. All of this success was unexpected as he didn’t talk at 3 ½, was barely walking and had multiple self-stimulatory repetitive behaviors.

Second, it has allowed my wife and me to not have to mortgage our house to the hilt. We’ve been able to continue to pay property tax, shop and pay sales tax, and not have to request exorbitant state assistance to live.

Third, it has allowed the state to have what will be an extraordinary asset in Wills Bauer. He will be an incredible asset to this state once he grows up. He will not need extra help to live. He will make incredible contributions. He will earn a living and pay taxes. Were it not for the therapy he would most likely be institutionalized and be a very high economic burden to the state.

I implore you as a taxpayer to pass this bill. As you can see I have no direct interest or benefit. We’re done with the therapy, we’ve benefited from it, and now we’re on to the next stage in the development of an amazing little boy.

Thank you for your time and I hope the children and taxpayers of the state can count on you.

-Bill Bauer
Columbia, SC

South Carolinians Write to Governor About Ryan's Law

Dear Governor Sanford:

I ask that you please sign the Autism Bill. I am not a parent of a child with Autism. However, I strongly feel these children with autism should have the same access to healthcare coverage that my children have been so lucky to have.

In addition, it makes economic sense to cover the treatments now vs. paying for much more expensive care in the future. I also believe it is the moral thing to do as well.

Thank you for considering my request.


Janice Mullin
Charleston, SC

South Carolinians Write to Governor About Ryan's Law

Dear Governor Sanford,

My name is Michael Bridgers and I live in Columbia. As a constituent and parent of two sons with autism, I urge you to allow the Ryan's law bill to become law in SC.

I am sure the insurance lobby is talking with your staff about this bill Please keep in mind that the final bill is a compromise that was reached with the insurance lobby prior to passage. The bill was widely supported by members of both parties in the Senate and House.

Autism is a national crisis - and must be treated the same as any other neurological disorder.

I am not an expert on the financials, but it makes sense to me that we should commit resources to children and improve their odds of developing into successful, contributing adults. That is my dream for my treasured sons.

I am sure you have seen the local and national media coverage regarding autism in the last year. Even today, WLTX will be filming a segment at Gymboree at 3:00 in Richland Fashion Mall for an upcoming national story. Gymboree has commissioned an exercise class for special needs children.

Please allow Ryan's Law to become SC Law.

Michael Bridgers
Columbia, SC

South Carolinians Write to Governor About Ryan's Law

Dear Govenor Sandford,

I am a school nurse in this fine state of South Carolina and continue to see an increase in the number of student in public education with a diagnosis of autism. The effects of this disorder are felt by a multitude of SC families and the educational and health care professionals within the school setting.

The benefits of ABA Therapy have been proven to promote enormous gains to cognitive behavorial skills.

I have a personal involvement with this Spectrum Disorder by observing my great neice, who is fortune enough to have an insurance comapany with the vision and wisdom to provide coverage for a cutting edge treatment. It would be very sad to see others suffer because Ryan's Law did not make it off your desk.

Please be informed before you make such a life changiing decision for millions of innocent children. You have the power to make Ryan's Law happen.

Sally Atkinson

South Carolinians Write To Governor About Ryan's Law

Dear Governor Sanford,

I am so blessed to have a six year old granddaughter with autism. Her father just returned from serving our country in Iraq. She has for the past year benefited from the ABA therapy. She and Ryan (Lorri Unumb's son) have the same ABA therapists. I know you have four sons. I truly hope that they were born normal and healthy. Please do not turn your back on those that are affected with this condition.

Ryan's Law is a compromise bill that the insurance industry has agreed to. Small group and individual policies are exempt. There are over 2000 children in South Carolina affected by autism. Either the insurance industry can help pay for autism now, or the taxpayers can pay $4 million per person later.

Haleigh has improved tremendously in the 12 months she has had ABA therapy. She is home schooled because the school system in Charleston could not or did not offer the help she needed. She has started talking, eating, and interacting with other people. When her father left for Iraq last June, she did not speak at all. Now, she is shocking us all with her improvement. We sent videos of her progress to her Daddy, and he was awed by her progress. They have had some help with the extensive cost of the therapy from Tricare, the only insurance company that pays anything at all for autism treatment. The cost of therapists run about $ 90,000 a year. Without Tricare coverage, they could not afford the ABA.

Please sign Ryan's Law. Show the people of South Carolina that you care about our children as you say you do.

Thank you for your support.

Susan Thrasher
Bishopville, SC

South Carolinians Write to Governor About Ryan's Law

Dear Governor,

As the parents of a boy with autism, we ask that you allow Ryan's Law (the Autism Equity Act) to go forward, without a veto. Our son is severely delayed in speech and socialization.

Autism is a neurological disorder, which affects the parts of the brain that control language and joint-attention. We believe this neurological disorder should be covered under health insurance, just as strokes and other neurological disorders are covered. It's only right that our children get the treatment they need!

Our developmental pediatrician tells us that, with therapy, our son will likely go on to a regular elementary school with "normal" children, and could even excel academically. Without therapy, however, his progress would halt or regress, and he would never develop the language or other skills that are necessary to participate in a normal classroom, or the workforce, one day.

The children of our state deserve to share their talents with all of society, pay taxes, and contribute to our local economy -- instead of ending up becoming a burden on taxpayers.

Perhaps this realization is why several other states have passed similar legislation. By allowing Ryan's Law to go forward, you will not only help these children but will also help our state for years to come.

I (Elizabeth) talked to you one time in person about children with special needs. You convinced me that you really care about children with disabilities. This is your chance to show that you really do care about these children. Thank you, governor, for your time, and I hope we can count on you to help our children!

Michael and Elizabeth Wright

South Carolinians Write to Governor About Ryan's Law

Dear Governor Sanford:

My 6-year old son was diagnosed with autism shortly after his 2nd birthday. Over the past 4 years, I have become very familiar with treatments options and insurance coverage issues. The attached editorial I wrote published in the Myrtle Beach Sun News several weeks ago explains these issues in more detail. This legislation is critically necessary for our children.

My son, who received the type of early-intervention intensive therapy and services this legislation would provide on a wide scale to children across our state, graduated from his typical Kindergarten class at Myrtle Beach Primary School this week and received honors as Outstanding Reader in his class (proud pic attached). I don't mean to suggest he is cured, there is no cure, he has a shadow and there will be challenges ahead for him, but the strides he has made since that cold day in February 2003 when three experts shot a hole through the hearts of my wife and I (with the words "I'm sorry to tell you your son is autistic") have been breathtaking. And that would not have been the case without the type of therapy and treatment that this legislation will make more readily available to children across our state.

Lastly, this is a compromise bill that the insurance industry has worked with the autism community on and agreed to - specifically, small group and individual insurance policies are exempt from providing this type of coverage. And it is a fiscally responsible bill. Providing coverage for effective early-intervention therapy results in a greater likelihood of children growing up to be self-sufficient adults; not providing such coverage results in the opposite effect. Study and study shows the state pays much more money in public dollars to support the latter scenario.

If you have any questions about my experiences within the context of this legislation please feel free to contact me at this email address or at 843-685-2788.

I feel certain you will look at this bill and the surrounding issues closely and do what you think is best for our state and its children.

Thank you,

Editorial from Myrtle Beach Sun News

Ryan's Law is a bill under consideration by the state legislature that would have insurance companies cover doctor-prescribed treatment of autism. Autism is a neurological condition that severely impairs the communication and social abilities of the children it affects, resulting in developmentally disabled children and institutionalized adults. According to the Centers for Disease Control, one in every 150 children born today will be diagnosed with some form of autism. It is the fastest-growing and most prevalent developmental disability in America.
There are two undeniable facts your readers and every legislator voting on this legislation should know about autism. First, early intervention is critical to overcoming its disabling effects. There is a window of opportunity where autistic children can make significant, remarkable progress with the right therapy. I have seen this first-hand with my own son. Second, Applied Behavioral Analysis is the only therapy proven by studies in peer-reviewed journals to produce results and significantly improve the abilities of children with autism. It consists of intensive one-on-one therapy. While parents who can afford the $25,000-plus annual cost of ABA are able to give their children a real chance to grow up and live a meaningful life, most parents must rely on grossly inadequate services provided by state agencies or the schools, denying their children a chance to succeed. If passed, the proposed legislation will change this.
Parents seeking to provide effective early! -intervention ABA therapy for their children will not find much help via state agencies and Medicaid - the only practical choice is to pay for it yourself.

ABA programs sponsored by state agencies are basically training and informational classes about how to set up and run an ABA program, and the waiting list for receiving what little therapy they do provide is months, even years long, which is unacceptable when you're in a race against time to help your child beat autism. When legislators oppose this bill because they want to protect insurance companies at the expense of overburdened state agencies and school districts, taxpayers end up shouldering the burden.

The House and Senate should pass Ryan's Law without tacking on amendments designed to gut its effectiveness. It's time for health insurance companies to step up to the plate and provide the coverage they are paid premiums to cover.

Please do not fall for the insurance lobby's doomsday predictions of drastically higher health insurance premiums if this bill passes. Although they denied coverage at first, my insurance company did end up covering a significant amount of my son's ABA therapy. That insurance company and my employer at that time are still flourishing. Most importantly, after several years of ABA therapy, my son evolved from a child with no language at all to a 6-year old who, like most kids his age, talks so much (in full meaningful sentences) that we can't get him to shut up. Some parents might complain about such things. My wife and I can't help but smile. Every child with autism deserves the same opportunity to thrive.

Please pass this bill.

The writer lives in Myrtle Beach.

South Carolinians Write to Governor About Ryan's Law

Dear Governor,

As the parent of a 3-year-old boy who was recently diagnosed with autism, I ask that you allow Ryan's Law (the Autism Equity Act) to go forward, without a veto. While my son is very intelligent (especially mathematically and with spacial relationships), he is severly delayed in speech and socialization.

Autism is a neurological disorder, which affects the parts of the brain that control language and joint-attention; with therapy from a young age, while the neurological pathways are still forming in the children's brains, most of these children show tremendous improvement -- and many go on to live normal lives.

I believe this neurological disorder should be covered under health insurance, just as strokes and other neurological disorders are covered. It's only right that our children get the treatment they need!

The pediatrician tells us that, with therapy, my son will likely go on to a regular elementary school with "normal" children, and could even excel academically. Without therapy, however, his progress would halt or regress, and he would never develop the language or other skills that are necessary to participate in a normal classroom, or the workforce, one day.

Our state deserves that children like my son be able to share their talents with all of society, pay taxes, and contribute to our local economy -- instead of ending up becoming a burden on taxpayers.

Perhaps this realization is why several other states have passed similar legislation. By allowing Ryan's Law to go forward, you will not only help these children but will also help our state for years to come.

Thank you, governor, for your time, and I hope we can count on you to help our children!

Robin Broyles

South Carolinians Write to Governor About Ryan's Law

Governor Sanford,

My name is Derrick Howle and my son Lucas is autistic. He is my heart and soul and my purpose in life. My love for him is beyond measure and he needs help, your help. He is 8 years old now and thanks to ABA therapy, he has made progress in escaping the world of autism. He has not yet completed that journey. We discovered that Lucas had a problem at 8 months old while we were visiting family in France (my wife is French). Upon our return, we searched for answers to his problem for two more years when finally the diagnosis of autism was given. At 11 month old Lucas started receiving physical and occupational therapies at Kidnetics through Babynet which covered these expenses until he turned 3. Then a program through Medicaid called TEFRA kicked in. But it only covers physical, occupational and speech therapies. When Lucas was diagnosed as autistic at age three, we were told that insurance would not cover ABA therapies. Yet, ABA therapy is the only approved treatment by the US Surgeon General for Autism. So, we looked everywhere and found therapist who were trained for ABA therapy techniques but we had to pay for the cost ourselves. We were told that it would cost over $30,000 a year for 40 hours of therapy. When a friend in France found out he was dieing of cancer, he told his wife that upon his death, he wanted a fund set up in his and Lucas' name to help pay for Lucas' therapies. So, it was at this time in 2002, five thousand miles from Greenville in France that Nounours, Les Amis de Lucas (Teddy Bear and the friends of Lucas) was created. Enough people, both friends and family, contributed in France to this fund, that since January of 2003 we have had enough money to pay for 20-25 hours a week of ABA, although 40 hours had been recommended. We ourselves have contributed to this fund by selling organic vegetables from our garden and canned goods we have canned ourselves and selling French baguettes to the French community in Greenville. The money runs out at the end of this year.

Lucas has continued to make progress with these therapies and to stop the therapies now would be devastating. All he has accomplished so far and all he could accomplish with more therapies would be lost. In the last few weeks I have continued to see the progress the therapies he has taken are having on him. At age 8, he has finally learned to drink using a straw. Why is that important? Because Lucas is non-verbal. He has had trouble controlling the muscle in his mouth so being able to control the muscles in his mouth to suck through a straw means he can learn, through his therapies, to control those same muscles for speech. Every small success is so much more than a small success and time is not on the side of autistic children! We have seen significant progress with Lucas. We have not been able to give him the 40 hours a week he needed but he has progressed despite that. His vocabulary increases every day and although he may not be able to have a conversation with you, he understands everything you say to him, in both English and French. He is extremely smart but can not express it in normal ways. When he does speak and use words, you may not understand him clearly but for those of us who know Lucas, we know that "inch I's" are French fries and "I eem" is ice cream, his two favorite foods. We know the results these therapies can have for an autistic child and we know how important they are. We see it every day with Lucas. There has not been one single goal that we have set for him in his therapies that he has not accomplished on time or ahead of time with the exception of two, his language and potty training and he is currently making progress in both.
We began to worry what we would do when the money ran out from the above mentioned fund. Would we go into debt? Would we ask my parents to give up some of their retirement to help along with cashing in some of mine?

We have no allusions that Lucas may need to live with us the rest of his life with out the help from these therapies so where do we turn? 20 years ago, 1 in every 10,000 children was diagnosed with autism. In 2002 when Lucas was diagnosed it was 1 in every 250. Last year the number was at 1 in every 166. Today, in a report just released by the CDC in Atlanta of which data from SC was used to determine the prevalence of autism, it is 1 in 150. Every 20 minutes a child is diagnosed with autism. So, I am begging you sign this legislation to help my son reach his full potential without having to wait any longer.

S20 passed this year by the legislature will provide the help not only for my son to reach his full potential and hopefully become a functioning member of society, but will also provide help for the hundreds of other children in SC. S20 is vital to the welfare of many families in SC who would have no other chance at helping their autistic children. Not only is it the moral and ethical thing to do, but it is the fiscally responsible thing to do for the state of SC. About 50% of children who receive at least 40 hours a week of ABA therapy for 3 or more years become mainstreamed students while 40% more make significant progress but require some assistance. The majority of those not receiving therapy become wards of the state at a cost of up to 7 million dollars per person.

My father is a retired minister and we lived in a number of areas in SC so when I found out that this bill was going to be introduced again this year I started contacting family, friends, neighbors and churches across the state asking them for their support and to write their legislators on behalf of Lucas. I know that over 50 people have responded from all across the upstate as well as other areas of SC to their representatives and senators on his behalf. It is amazing how many people one child can touch and we have been truly touched by the response we have had from our neighbors, friends and family and how they have passed on our message.

Governor Sanford, I ask you to sign S20, a.k.a. Ryan's Law. I ask you to sign it not as a tax paying citizen of SC and not as a fellow Republican but as a Father! As a Father, I know you would want to do all you can to help your children succeed in life. This law will help me do that sir! I love my son more than life itself and I see the daily struggle he has to force his real self out into the open. As a father, I am helpless to save my son from this disease called autism but I am not helpless to give him the love he needs to unlock the chains that bind him in his world of autism. Help give me the financial support I need to enable my son to overcome this neurological medical condition called autism. Sir, please help me and all the other parents in SC unlock the chains of autism that bind our children by signing Ryan's law the moment it hits your desk.

With kindest regards,
Derrick Howle

South Carolinians Write to Governor About Ryan's Law

Dear Governor Sanford,

Please consider this e-mail a mother's desperate plea that you not veto the bill we parents have struggled so hard to get to your desk. If I have said it once, I have said it who knows how many times - there is nothing wrong in your life until there is something wrong with your child. My husband and I have 4 wonderful children, the oldest of whom has autism.
I write this e-mail to you in a rush, and I apologize. I am trying to get out of the house so the family can accompany Andrew to a Dr's appointment in Jacksonville Florida. Dark times make or break parents.

I am thankful that facing this beast called autism has brought out strength and resourcefulness in my family.

Getting this bill all the way through the legislature has drawn more attention than any of us thought we had to give to one more battle.

Now that we are standing at the door, I beg you not to lock it. Even with the assistance of insurance paying for the only proven therapy that helps our children, our struggles are far from over. We still balance our other children, the jobs we need to keep in order to provide for our kids, and the marriages a few of us are lucky enough not to lose. But the encouragement we have all drawn from the last week where we could see the light at the end of the tunnel to see our children helped by the society they live in has fueled many of us to face one more day.

I have met you at Pompian Hill, through my good friends Elizabeth Hagood and Harry Gregorie, and I have followed your career from the days you made a statement about waste by sleeping on the floor of your office in Washington. I believe you to be a good man with good priorities.
I beg you not to heap one more concrete slab on the shoulders of parents all over this state whose backs are about to break already from the weight of helping their children with autism. Please let the bill become law. I thank you in advance for your consideration of my plea and for your time.
Kathy Simons

Tuesday, May 29, 2007

Editorials Encourage Governor to Sign

Governor should support coverage for autistic children
Bill would provide needed therapy for young people up to $50,000 a yearPublished: Tuesday,

May 29, 2007 - 2:00 am

State lawmakers approved a bill that would require private insurance to cover treatment for autistic children. Gov. Sanford should sign the bill.

A spokesman for the governor on Friday said the bill had not yet reached Sanford for his review. In the past, however, Sanford has been reluctant to impose mandates on the insurance industry. The hope among advocates is that he will set aside his personal misgivings and approve this needed legislation.

In 2005, a similar situation arose: Sanford, despite his reservations, allowed a bill to become law that required many private health plans to provide greater coverage for serious mental illness. Sanford refused to sign the bill but neither did he veto it, and by his passive support it became law.

The current autism bill is equally worthwhile. Autism, a disease that can severely impair a young person's ability to communicate, form relationships and adapt to change, is the only neurological disorder not required to be covered by private insurance in South Carolina. The bill would require insurance to pay for treatment for children, age 16 and under, up to a maximum of $50,000 a year beginning in July 2008.

In South Carolina, about 2,000 children under 18 have autism. Advocates argue that early intensive therapy can do wonders for some autistic children. Advocates say that about 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.
But that therapy can cost up to $75,000 a year, putting it out of reach of many families with autistic children. Advocates say families across this state are forced to get second mortgages on their homes or face bankruptcy trying to provide the intervention their children need. Or they face the heart-wrenching experience of placing their children in group homes or institutions -- although there's often a 15-year waiting list for such institutions.

Even though therapy may be costly for insurers, it could save the state considerable sums in the future. An autistic child who receives insufficient treatment sometimes can end up being cared for in an institution at taxpayer expense. That can cost the state $4 million to $7 million for each patient.

Compassionate consideration for children suffering from autism helped persuade state lawmakers to follow the lead of at least 17 other states that require coverage. Early intervention for children also may save the state millions of dollars in the future. Gov. Sanford should sign the bill and give autistic children the opportunity to lead more productive and perhaps even more fulfilling lives.

Monday, April 09, 2007

Autistic children may get better treatment options

Forum looks at coordinating services; Senate may force insurance coverage

Published: Sunday, April 8, 2007 - 2:00 am

Melissa and Scott Forster suspected something was wrong with their son when he hadn't spoken a word by age 3.

When they learned Aaron was autistic, one question was answered. Many more were raised.

Where could they go for help? Would insurance cover his treatment? What would become of him as he got older?

"I remember thinking, 'What are we going to do? Will he ever go to school, have friends, be able to drive a car?' " Melissa Forster said. "What happens is, you get this diagnosis -- your child has autism. Now what? It's terrifying."

Because autism services can be fragmented, the Center for Developmental Services in Greenville is sponsoring a Family Autism Forum this month aimed at better coordinating these services in the community, said executive director Jenny Fetterolf.

The center, which links families with six organizations that provide developmental evaluation, treatment, education and support, saw nearly 200 children with autism last year, she said. And the numbers are increasing.

"With a diagnosis of autism, parents often don't know where to go or where to start," adds Dr. Anne Kinsman, a pediatric psychologist with Greenville Hospital System who's been working on the forum.

"There are huge questions. And a lot of fear," she said. "The goal is to bring everybody together so that maybe we can work more cohesively over time to help these children."

At the forum, parents will be able to talk to professionals from Greenville Hospital System, the School District of Greenville County, the Piedmont Autism Division, Hope Academy and other organizations. At a meeting last month, the professionals explored forming a task force to work on improving services for autistic children in the Upstate, Fetterolf said.

Part of the problem is that so many entities are involved -- the doctors, the state, the school system, says Kinsman. All are working to help the children, but each functions independently under different rules, funding sources and processes, confusing things for parents and health-care providers. Perhaps they can be streamlined so they're more efficient and accessible, she said.

Forster, 38, says she learned about services serendipitously by running into people who provided leads. A lot of parents just stumble along, and their children don't get the best services as a result, she says.

"There are people out there who don't know what's available," she said. "So what I would like to see with this group is to have a resource for parents."

Another hope is that the forum will empower a grass-roots movement for autistic children and their families, advocating for insurance coverage for therapies, for instance.

"We hope it will provide parents with some answers," said Fetterolf. "And we hope it will morph into something bigger and more long-term."

One treatment shown to have a profound impact on many autistic children is an intensive early intervention called applied behavioral analysis. Since Aaron Forster has been getting ABA, he's talking, making eye contact, spending less time on repetitive behaviors and even has begun to show affection, his mother says.

"I think one of the reasons he's doing so well is that we caught it early and that we started the intense therapy," she says with a smile as Aaron throws his arms around her neck and kisses her cheek.

But the treatment isn't covered by insurance. The Forsters, of Greenville, spend about $2,000 a month on it. But some children need more hours of therapy, and it can cost upward of $50,000 a year for them.

"This is a disease. And many studies have proven that the therapy, especially if you start very early, you can get them to where they can function in life. And it's so much more cost effective (than eventual institutionalization)," she says. "It's so frustrating that insurance won't cover it."

A bill that would mandate coverage for autistic disorder passed the state Senate Banking and Insurance Committee last Wednesday and is headed to the full Senate, said Marcella Ridley, a Columbia mother who's been pushing for the legislation. It would limit coverage to $75,000 a year per person, she said.

Forster says Aaron, now 4, is doing so well he'll be in kindergarten this fall. And they're actually hopeful about his future.

"When they told me he had autism, I was devastated. And there are days when we take two steps back," she said. "But he has done remarkably well. We're optimistic."

Thursday, March 15, 2007

Positive Coverage From the Greenville News

Insurers may be required to cover severely autistic kids
Parents applaud Senate committee's move to address treatment costs

Published: Thursday, March 15, 2007 - 2:00 am By Tim Smith

COLUMBIA -- The Senate Banking and Insurance Committee on Wednesday passed a bill that would require insurers to cover treatment costs of severely autistic children.

The unanimous vote was greeted by applause from dozens of parents, including some from Greenville, who had come to Columbia to watch the hearing.

"I think it's a positive thing," said Derrick Howle of Greenville, father of an 8-year-old autistic boy. "It does give hope."

The vote came with the provision that it be kept on hold for two weeks once a spot is reserved for it on the Senate calendar.

Senators said they want to give insurance company representatives and autism advocates a chance to work further on the bill.

Similar legislation last year failed. Lawmakers, however, did provide $3 million for some Medicaid coverage and are talking about more this year.

Insurers and business officials last year balked at the idea of state-mandated coverage, arguing that it would increase premiums, cause some small businesses not to offer coverage for workers and offer only limited benefits.

An amendment offered this week by autism advocates would cap treatment benefits at $75,000 a year and limit coverage to those with severe autism, about 330 children statewide.

"Autism is a medical condition," Lorri Unumb, a law professor and mother of an autistic child, told the senators. "Insurance should be doing its part."

Larry Marchant, a lobbyist representing insurance carriers, said carriers had not had time to study the new amendment.

Thursday, February 08, 2007

Sample Letter to South Carolina House Member

Dear Representative Haskins,

My name is Derrick Howle and I live in your voting district. I want to thank you for cosponsoring House Bill 3468. I am the father of an incredible 8 year old boy with autism named Lucas Howle. The passage of this bill will open many doors for my son Lucas and allow him the opportunity to receive treatment and remediation for his autism, thereby giving him the opportunity to lead a more productive and meaningful life.

While there is no cure for autism, remarkable strides can be made with early and intensive intervention. Lucas has already made progress with the therapies he has received but the financial burden has become too much for us to bear alone. He has 20 hours a week of ABA therapy which cost about $15,000 a year. 40 hours a week of therapy is recommended.

Once again, THANKYOU for co-sponsoring bill 3468 as it will make the difference in Lucas’ life. Attached is a photo of my son Lucas. While under consideration, please think of him and the more than 2800 others like him in SC.

Tuesday, February 06, 2007

Good luck to our friends in Arkansas

Many of our friends around the country are facing the same issues in their states that we are facing in South Carolina, and, in fact, lots of parent advocates have called us to ask for guidance on introducing legislation in their own states. Below is a letter from a newfound friend, Dianna Varady, pertaining to some legislation in Arkansas that seeks coverage for their kids. I thought this was a great letter and just thought I'd share it here.

Dear Friends,

I am writing to you today to ask for your help. There is a bill going before the Senate Insurance and Commerce Committee soon, Senate bill 93, which if passed, would mandate private insurance coverage for individuals with autism spectrum disorders. Many of you who receive this communication have children with an autism spectrum disorder, and so you will understand the importance of this bill. To those of you who do not have a child of your own suffering from autism, you probably know of at least one other family besides mine who is struggling with the costs of providing adequate treatment and care for their autistic child.
Finding a way to provide proven treatments for our son Bradley has been a constant struggle since he was diagnosed almost 2 years ago. We assumed wrongly that our insurance policy would cover treatment for autism – after all, our insurance covers treatment for other neurological conditions like epilepsy, cerebral palsy, or even depression. We soon learned that this was not the case. Luckily for us, Arkansas allows families with children who are medically needy the opportunity to purchase Medicaid for their child (TEFRA). So, now in addition to our family health insurance premium, we pay a second premium to Medicaid to make sure that our son gets at least some treatment for autism. However, we soon learned that the amount of therapy provided for children with autism via Medicaid funding is woefully inadequate, so we began scrimping and saving to provide additional therapy for our son, and we have become “pseudo” therapists ourselves. Every minute with Bradley is spent working to help him overcome the numerous obstacles he faces: difficulties with basic communication, difficulties with sensory integration (acute sensitivity to sights, sounds, tastes, smells, and touch), difficulty with obsessive behavior and extreme anxiety. There is no pill to address the symptoms of autism – the most studied and most effective treatment is early intensive behavioral therapy – and lots of it.

Some of you with older autistic children might not think that a law mandating private insurance coverage for autism is all that important. After all, your child is in all likelihood covered by Medicaid, and you are facing altogether different challenges for your older child, like mind-numbing IEP meetings, where it feels like every tiny service provided for your child requires weeks, or even months, of negotiations with school officials. Or perhaps your autistic child is an adult, and your main concern is finding a way to integrate your adult child into a society that doesn’t understand and is afraid of some of the odd or troubling behaviors exhibited by autistic individuals. Perhaps you are one of the unfortunate few who are considering a group home for your adult child, or perhaps he or she already resides in a group home. To all of you who have older children I would only say this: How many times have you looked back and said to yourself, “If only my child had received more intensive therapy at a younger age – who knows where he/she would be today.” Studies indicate that 40% of the children who receive early intensive behavioral therapy will improve enough to be considered “recovered”, which basically means they would be indistinguishable from their peers. Another 40% would improve enough to require at least a 50% reduction in therapies – enough, perhaps, to remain in a regular classroom, only to be pulled out occasionally for speech or occupational therapy or other tutoring. Enough, perhaps, to develop the ability to form lasting friendships with their peers, and to go on to live in the community with a minimum need for assistance. So, 80% of the children with autism could go on to become contributing members of society – tax-paying citizens (I never thought that, as a mother, one of the goals for my child would be that he grow up to pay taxes – now I dream of that day). If your child had received that kind of early intervention, where would he/she be today?

To those of you without a child who has autism, I realize that you have little stake in this bill passing or failing. Small business interests and the insurance industry will argue that this insurance mandate will cause premiums to skyrocket and cause small businesses to close. In truth, the insurance industry itself estimates that autism insurance mandates in other states resulted in less than a 1% increase in premiums. As a matter of fact, the now Commissioner of the Indiana Department of Insurance was a state representative at the time that the Autism Insurance Mandate was passed in Indiana. Usually anti-mandate, the autism mandate is the only health insurance mandate he ever supported. The supporters of the autism mandate did not view the legislation as “special treatment” for autism, but a necessary correction to the discriminatory practice of the insurance industry. Autism is the only neurological disorder that is routinely denied any coverage. There are no financial, clinical, or cost arguments to refuse coverage for autism that hold water when compared to other conditions and populations that are routinely covered.

So, what I’m asking is that you call, write, and email your Senator and your Representative in the Arkansas Legislature to urge him or her to vote for Senate bill 93. The only way this bill will pass is if the legislators hear from their constituents, and that’s you, your family, your friends, and your community. You are more powerful than you know, and I am begging you to use that power to help hundreds of autistic children in Arkansas.

Dianna Varady
Mother to Bradley, age 3

Thursday, November 09, 2006

In the News

Thu, Nov. 09, 2006 – Myrtle Beach Sun News


Support for autism therapy needs to continue

By Cheryl A. Bauerle

Autism spectrum disorder is a developmental disorder that affects the typical functioning of the brain on many levels. It strikes one in 166 children and is the most common of all serious childhood disorders. It is estimated that1.5 million Americans have autism spectrum disorder and that number is increasing at a rate of 10 percent to 17 percent per year. We do not know the cause. There is no cure.

Treatment is expensive, but it does work to increase quality of life and can even help the person with autism become a contributing member of society. The benefit of such an early intervention plan (speech therapy, behavioral therapy, occupational therapy, reading resource and applied behavioral analysis) is tremendous and can make a remarkable difference. These treatments cost money, resources and a great deal of time on the part of the Horry County school district as well as families. The cost of educating a child with autism can be as much as, if not more than, a year at Harvard University, $40,450, according to Harvard's Web site. The difference is that some parents, who opt for private applied behavioral analysis therapy, pay this year after year without the promise of a positive outcome.

In the past, the school districts received assistance from the government (Medicaid funds) to provide some of the services mentioned above, especially for those related to applied behavioral analysis therapy.

As of Dec. 31, Medicaid will cut funding given to the school districts to teach autistic children. This means that $1.4 million dollars in federal money will be lost. The S.C. Department of Health and Human Services, which oversees the state's Medicaid plan, will pull $700,000 from its $944 million annual budget to fund the services through the end of the school year. After this, the schools will have to find the money to support the programs already in place. This will affect Horry County Schools greatly. We are the second-largest recipients of Medicaid funding for such programs.

The impact on society will be unimaginable, unless policymakers address this growing problem. It has been estimated that caring for all people with autism over their lifetime costs an estimated $35 billion per year. It costs $3.2 million to take care of an autistic person over his or her lifetime. People with autism tend to have a very long lifespan.

Now, do the math. Do we pay now - or later?

The writer lives in Myrtle Beach.

Monday, August 28, 2006

South Carolina's Medicaid Pilot Project for Children with PDD

Hello everyone! After a long summer hiatus, I have some news to report on Ryan’s Law.

As many of you know and thanks to your efforts, we DID PASS some autism legislation this year – yippee! Unfortunately, it wasn’t the insurance mandate we wanted, but there’s still good news. Here’s what happened:

The original Ryan’s Law bill, which would have required insurance coverage for autism, was “replaced” with a PDD pilot program. The pilot program passed and will be funded with $3 million of state money, matched by federal Medicaid funds. Although we are disappointed that the insurance mandate didn’t make it this year, we are excited about and grateful for the PDD pilot program. As with any government program, there will be a fair amount of red tape and restrictions to deal with, but we are hopeful that it will provide some meaningful funding for therapy starting in 2007.

The PDD pilot program will be run through the S.C. Department of Disabilities and Special Needs. DDSN has been meeting with the Department of Health and Human Services, the Department of Education, and other interested parties (including a few parents) all summer to work on setting up the pilot program. A major step in the process is getting federal approval of the Medicaid waiver, which basically means getting the federal government to approve how the money will be spent through the program. As part of the approval process, DHHS is required to hold a public meeting at which interested parties can comment on the proposed program. The public meeting will be held on Wednesday, September 13, from 5 to 7 p.m. at Two Medical Park, in the lower level conference room, Medical Park Drive, Columbia. (This is on the campus of Palmetto Richland Hospital.)

The legislation that creates the pilot project contains some restrictions on how the money will be spent (e.g., the child must have been diagnosed by age 8); the waiver application will contain more restrictions, and those will be discussed at the public meeting. The exact language of the legislation that creates the PDD pilot program is below.

Thanks again to everyone who helped create this new program for the children with autism in South Carolina. If you contacted your legislator, if you testified at a public hearing, or if you simply showed up to support the effort, then you contributed significantly to the passage of this legislation.

See you soon – Lorri Unumb, Ryan’s mom

“The three million dollars appropriated to the Department of Disabilities and Special Needs, as the agency authorized to treat autistic disorder, shall be designated for a Medicaid pilot project to treat children who have been diagnosed by eight years of age with a pervasive developmental disorder. The pilot project must target the youngest ages feasible for treatment effectiveness, treatment of each individual child shall not exceed three years without a special exception as defined in the waiver, and reimbursement for each individual participant may not exceed $50,000 per year. The Department of Disabilities and Special Needs and the Department of Health and Human Services will determine the areas of the State with the greatest need and availability of providers. Children participating in the pilot project will be selected based upon an application system developed in compliance with the Medicaid waiver. Treatment will be provided as authorized and prescribed by the department according to the degree of developmental disability. In authorizing and prescribing treatment the department may award grants or negotiate and contract with public and private entities to implement intervention programs for children who have been diagnosed with a pervasive developmental disorder. “Pervasive developmental disorder” means a neurological condition, including autistic disorder and Asperger’s syndrome, as defined in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association. By June 30, 2007, the department shall report to the General Assembly and the Governor on the developmental progress of the children participating in the pilot project. This provision does not establish or authorize the creation of an entitlement program or benefit.”

Sunday, August 13, 2006

From the Charleston City Paper

The Coming Wave of Autism
Is South Carolina ready?

Six-year-old William Rutland is a 'high-functioning' autistic child living in Richland County
Autism has one image: actor Dustin Hoffman in Rain Man.
The movie character was quirky, talkative, brilliant, and inflexibly married to a daily routine. But his symptoms were not typical for most people with autism. Some are talkative; others do not talk at all. Some are affectionate; others do not like to be touched at all. Some repeat what is said to them; others can go on and on about a topic they find interesting.
According to the Centers for Disease Control and Prevention, symptoms of autism vary widely, but all children who have it experience difficulty communicating with others. "No two people with Autism Spectrum Disorders will have the same symptoms," the CDC says. "A symptom might be mild in one person and severe in another person."
And the cause is a myriad of guesses and suspicions because no one knows what makes a child develop autism. Parents, doctors, and researchers are skeptical of food additives and preservatives, the relatively high levels of mercury injected with some vaccines, environmental pollutants and, of course, the role of genetics. Any one or all of the above could be the catalyst for autism. Scientists are trying to find the answer.
In the meantime, the number of children with autism keeps growing with a promise: If you don't know someone with autism, you will soon.
Within the past decade, the number of diagnosed cases of autism rose from 10 to 15 per every 10,000 children to today's estimated one in 166. Those are not guesstimates. The CDC got the most recent numbers from a Charleston doctor who researched how many 8-year-olds in South Carolina had autism. They mirror what researchers in other states are finding.
As the numbers increased in the past 10 years, so did research and advancements in therapy. However, when this swell of autistic children ages through its teenage years and into adulthood, the responsibilities of caring for them will remain with the parents, who will eventually enter their senior years and need assistance for themselves.
As of now, the state estimates 3,758 people with disabilities, including autism, live with caregivers at least 55 years old. South Carolina offers placement in group homes, but does not have enough beds available to meet demand. Literally, parents are having to die before their kids get placement. And with the steep increase in diagnosed cases of autism, that predicament is likely to grow to an extent the state is nowhere near accommodating.
Caregiver Phil Blevins calls it a looming "tsunami of families needing services." He is the founder and executive director of Carolina Autism Supported Living Services (CASLS), a nonprofit corporation that operates group homes in Charleston for autistic children and adults throughout the state.
"It's just going to be a nightmare," Blevins says. "It's not just South Carolina, it's worldwide."The Rain Men
While countries like China are just beginning to address the exploding numbers of diagnosed autism cases, the United States is ahead in that its parents, schools, and doctors already are communicating with each other about therapies and care. That care, however, is still sparse and expensive.
Blevins estimates it costs $150 per day to place an autistic child or adult into a group home. That adds up to about $54,000 per year. That money, which could be less for residents that require few services, helps pay for two people to supervise each house at all times. The state allocates money for CASLS to pay its staff more than minimum wage so it can be somewhat selective in hiring, and it appears to be necessary because of the demanding responsibilities as well as the lengthy checks each employee goes through to get hired: national and state criminal background checks as well as a clean driving record. Everything gets rechecked annually.
CASLS has 60 employees. That's far more than when they welcomed the first autistic child into a CASLS home in January 2002. And even more than what Blevins and his fellow co-workers at the S.C. Department of Disabilities and Special Needs envisioned when they quit their state jobs to start CASLS.
But it wasn't a hard decision to make. The need for those group homes — the five already open and the sixth one on the way — has been there for years.
Blevins says that point was clearest to him in 2000 when, as a state employee, he was sent to handle a request for services in Awendaw, about 40 miles north of Charleston. Two grandparents were caring for their 15-year-old granddaughter with autism in a small, rural home.
"If she wanted to go to Wal-Mart in the middle of the night, they had to take her or she would beat them up," Blevins says.
No beds were available to move the teenager into a group home so Blevins was sent to go over a behavior plan with the grandparents. But he knew that wasn't what they needed. He received several similar cases in the following months, which ultimately led him to open group homes himself rather than watch more families struggle in situations they were incapable of handling.
Today Blevins gets three to four calls each week from parents trying to get their autistic children into a group home. Usually, he steers the parents to other services they didn't know existed. It's really not up to him to offer a bed — if one were open — because the state determines who gets the spaces in group homes as they become available. Troubling for Blevins is that he has started to get more calls from people in dire situations like those grandparents he met in 2000 and once again he can do nothing for them. He literally cannot open new homes fast enough.
"We're kind of back in the same situation as before, and people are still coming," Blevins says.The Politicians
Legislators hope to alleviate some of the strain with more money.
The S.C. General Assembly added another $6 million into the state budget for children with developmental disabilities, which includes autism. The money will help pay for at-home therapy and open 500 new beds in group homes.
Currently, the state has to maintain not one, but two waiting lists to get into group homes, says Craig Stoxen, president and CEO of the S.C. Autism Society. One is where everyone puts down their name and waits their turn. The other is for "critical" situations where, for example, a parent has died. Parents who anticipate their children will need a group home in 15 years have already signed up. It really could take that long, Stoxen says. That's why many parents believe they have to die first.
"That's the pervasive thought," Stoxen says. "The waiting list is over 1,000 people."
The new state money should help shorten the waiting list for a while. But, like Blevins, Stoxen expects demand for group homes to increase as the surge of children diagnosed with autism moves into adulthood.
"We know it's coming. We're not preparing for it," Stoxen says. "Legislators have been kind throughout, but it's not enough."
And the costs for therapy and care aren't going away, either. Insurance companies often do not cover autism or cover it as a "mental disease or illness," which means they pay for far fewer treatments than doctors often prescribe. A bill before state legislators this spring would have required insurance companies to cover autism, but state representatives and senators opted instead to replace that bill with a $3 million proposal to use state taxes instead of insurance money to ease the costs of therapy and additional daycare levied upon parents of autistic children.
"There's no entitlement for adult children," Stoxen says. "You leave school and get on a waiting list."
It's not the waiting for some parents; it's the not knowing.
"Most parents want to know before they die or are not doing well that their child is transitioned into a new home well and is doing well," Stoxen says. "The providers do the best job they can, but they're never going to be Mom and Dad."
Mom and Dad do their best, too, but the symptoms of autism are so varied that it requires a high level of professional attention. Stoxen predicts that 10 or 20 years from now, scientists will find that developmental problems now classified under autism are really 10 or so distinct illnesses with different causes.The Scientists
The cause of autism remains a mystery for doctors and researchers to solve. While they work to break the code, physicians continue to see a rise in the number of children with autism.
Dr. Shelly Hollstrum, a developmental pediatrician in Columbia, diagnoses autism in one to two children each week. She works part-time, but that still adds up to about 70 new cases of autism each year.
Hollstrum attributes the nationwide increase in autism diagnosis to two factors: doctors are more aware of the milder symptoms of autism that previously were misdiagnosed, and the actual number of autistic children is rising.
She believes a firm number on how often autism was still incorrectly diagnosed 10 years ago will never be available, but if she had to guess based only on her experience, then she estimates about 10 percent would previously have been misclassified as mentally retarded.
What's so different about how doctors diagnose autism today compared to 1996? Much of the improved diagnosis can be attributed to education and research about autism.
"We really didn't understand how important modeling was," Hollstrum says.
Doctors now watch children for reciprocal behavior. For example, does a child mimic behavior of other children or adults? Children with autism likely would not. And doctors look for signs of "joint attention," such as making eye contact and having an interest in interacting with others. Again, autistic children likely would not. Doctors also look for clues to how well the child is developing compared to other children of the same age. Toddlers with autism are less likely to point their fingers or to hold pretend tea parties than their peers.
Parents may mistake some symptoms for signs of a "well-behaved" child. Other parents may initially notice there's a problem when their children are not talking or begin losing language skills. Parents also become suspicious when they see "odd behaviors," such as repetition or unusual fascinations.
Autism is diagnosed in children usually between 18 and 24 months of age, but the sooner the better. Early therapy sessions can reduce symptoms for the rest of a child's life.
"It's better to get them in while the brain is still developing," Hollstrum says. "Overall, if we're able to diagnose early, about half the children with autism and an intensity of services, by the time they reach first grade, about half of them are able to participate in a first-grade classroom."
That's a huge impact, she says, not just on the child, but also on the parents' finances and on the state because more children can avoid having to go into institutions later in life.
"I want those symptoms to get less and less so they're really hard to see," Hollstrum says.
At the same time, some of autism's symptoms, such as an intense interest in a specific subject or heightened interpretation of things visually, can be life-long benefits for people like inventors or computer specialists. Such is the case with one neuroradiologist whom Hollstrum says not only exceeds in his career, but also has a wife and children.
That's the type of success children with autism could have with intense therapy, but the services needed to get there are often out of reach.
Parents are spending $50,000 or more per year to pay for the intense therapy prescribed, but Hollstrum says not too many people can afford those services. A high percentage of her patients are on Medicaid. Some state programs, such as the early intervention program Baby Net, provide therapists, but for a relatively short amount of time, Hollstrum says. Autistic children may need up to 25 hours of therapy each week and Baby Net provides only 1 to 2 hours per week. Medicaid may reimburse for 8 to 10 hours.
"We've had to be creative," she says.
Parents who have the time and are able to learn how to do the therapies themselves can help make up for a lack of paid therapy sessions by doing some themselves.
However others, such as single parents or those caring for multiple children, may not have that luxury.
"A lot of parents have difficulties with that for a variety of reasons," she says, making it harder to get those intense services that autistic children need.
But for those who do get them, Hollstrum sees promising results long-term.
"I expect big improvements," she says. "There should be a lot fewer kids overall needing to go to institutions."
That's for children whose autism is diagnosed today, but thousands of children in South Carolina and more than a million nationwide are already past that window of opportunity where intense therapy would have made great improvements. Those children are heading toward adulthood, some independently, and some still completely dependent upon their parents. Melanie Marquis knows what happens then.The Adults
Marquis's son Ryan recently turned 18 years old. He has autism, is mentally retarded, and diabetic. He cannot work and his health has only worsened since doctors diagnosed his diabetes at the unusually ripe age of 12.
"I can't leave him ever by himself," Marquis says. "It seems really a lot to other people, but when you're used to it you just do it."
Ryan has qualified for some assistance from the state to pay for personal-care assistants to come to the house. Marquis hired Ryan's two classroom assistants to fill the job because they know his routine and understand his behavior. If Marquis has to work at the office, then she pays them from her own pocket to babysit. Legally, an adult relative has to be at the home with one of the aides during the time paid by the state. So Marquis sought a flexible job where she could often work from home, and where her employer would understand when Ryan needs her attention.
Marquis is the parent-school partnership coordinator for the S.C. Autism Society. It means she helps parents work with school administrators to get an adequate education for their autistic children.
"Usually they come in because they're having trouble with the schools or their child's newly diagnosed," she says. Most are single parents because the divorce rate among parents of autistic children is 75 to 80 percent, she says.
Fortunately for Ryan, his parents are still married and his father makes good money as an engineer to pay for the therapies and treatments he has needed since doctors at the University of Chicago identified the autism.
"We knew it was a developmental disorder," Marquis says. "The insurance company looked at it as a mental health issue so they wouldn't pay for anything."
The couple paid for college students to come to their home and help Ryan with his therapy. He showed improvement, but then started to lose his language skills and hasn't gotten them back.
By now, the Marquis have Ryan's routine down pat. However, they have a problem — their own longevity. They already have put Ryan on the state's waiting list for a group home because they want him to have time to transition into his new settings before they die. They expect to wait many years. They're now in their 40s.
At 18, Ryan qualifies for more government services, such as a daycare program and money.
"Now he will get a monthly check for Social Security," Marquis says. Unlike many adults with autism, Ryan is unable to work.
Parents, schools and governments are trying to figure out how to better prepare children with autism to live more independently as adults.The Teachers
Until the U.S. government recognized autism in 1991 as a disability covered under federal education law, meaning that public schools had to provide autistic students with an adequate education, children with autism had been spread across a variety of classrooms and institutions. One of those was Erik Drasgow's classroom at St. Mary's School for the Deaf in Buffalo, N.Y.
Drasgow's fascination with linguistics led him to teach deaf students a few years after he graduated college in 1977. He quickly discovered a problem with several students in his class — they weren't deaf.
"When I opened a bag of chips, they all looked," Drasgow says.
The students were autistic and, as frequently happens among autistic children, they had not developed language skills. They couldn't communicate because they were "functionally deaf." Drasgow saw these students as a mystery he wanted to solve, and so he began studying the illness as he pursued a doctoral degree. He learned effective therapies and the best ways to teach children with autism. Ultimately, he became nationally certified for Applied Behavior Analysis therapy, the most effective method known to teach children with autism.
Today, Drasgow is a professor of education at the University of South Carolina often called upon for advice or training on teaching public school children with autism.
"There's a huge increase," Drasgow says. "Schools are really struggling to say how they can accommodate them."
Public schools are seeing not just spikes in the number of students diagnosed with autism, but also in complaints.
"Autism, right now, is the most highly litigated area of special education," Drasgow says.
Schools are becoming more proactive in providing adequate education for children with autism, he says, rather than waiting for complaints to be filed when they don't. This increases the demand for teachers who know how to work with autistic students, and Drasgow says the number of people specialized in autism is relatively small.
However, more and more of Drasgow's students, who will become teachers themselves, are seeking out information about autistic children. The professor received enough interest that he recently taught a class specifically on autism. The lessons should help his aspiring teachers avoid the pitfalls others have stepped in. For example, autistic children have difficulty communicating and particular trouble interpreting non-verbal communication, which means autistic students might not understand what is expected of them in a classroom. Teachers could interpret that as willful disobedience. The first instinct is to try to get a student's attention by raising their voices or giving disapproving looks, to no avail. By understanding the symptoms of autism, Drasgow says, teachers can better assess the situation and respond productively.
"Kids with autism do have some characteristics that teachers clearly need to be aware of," Drasgow says. "For example, kids with autism may not be as eager to get adult approval." And, he says: "When people do not understand autism, they often think that an individual is aloof and stubborn."
The State
Ideally, children with autism will get the best care available and succeed into adulthood. But for now, the growing number of autistic children heading toward adulthood will likely remain their parents' responsibility for a long, long time.
"It is a problem for people who are elderly," says Kathy Newman, community education coordinator for the Autism Division of the S.C. Department of Disabilities and Special Needs. "That is certainly a problem with all disabilities that we are concerned with."
The department tracks 27,000 people with disabilities in South Carolina. In Richland County, 322 people have caregivers age 55 or older. In Lexington County, it's 159. Those numbers, combined with autism's climb to the third most prevalent childhood disability, points to possible problems for parents who dream of a relaxing retirement. For many, it's not going to happen.
Advancements in autism research, therapy and education put the dream that doctors like Hollstrum have — of autistic adults living independently and creating the world's new inventions — closer now than it was a decade ago. However, parents and caregivers say a wave of adults with autism is coming and South Carolina isn't prepared.
Raising an autistic child in S.C.Photos by Wendy Pagonis
William Rutland lost his speech at age 2, about the same time doctors told his parents he had autism. At age 3, he enrolled in Richland County School District 2. It made him eligible for state assistance with his prescribed at-home therapy. Now 6, William remains a joy and a heartbreak in the Rutland household in Northeast Richland. Although he brings to surface daily acts of kindness and empathy, raising William also brings a daily frustration because it is the only task his parents do halfway. Even with Duncan Rutland's salary as a chemist and Myra Rutland's salary as a paralegal, the couple is unable to provide the therapy William needs to function in society. "This is the hardest thing I have had to do," Duncan Rutland says, reminded of his father's adage that anything worth doing is worth doing right. The doctor says William needs 35 to 40 hours of at-home therapy each week on top of the eight hours a day he spends at school. "We've never come close to 30 hours a week," his father says. Right now, William is getting 10 to 12 hours of therapy each week. Through the school system, the state's Medicaid and various programs help to get necessary therapy for children with autism, but it is not enough.
The state Department of Education teaches children with autism from age 3 to 21. However, that therapy often is in smaller doses than doctors prescribe, sometimes as little as one to two hours a week. Parents, not insurance companies, pay for the rest. That often means hiring college students and therapists willing to work for less than what private companies can pay. "We basically have to train our own therapists," Duncan Rutland says. "Finding qualified, motivated people who you are willing to entrust your child with for long periods of time is difficult." To pay for much of that therapy for their youngest son William, the couple has drained 80 percent of a pre-paid college tuition fund the boy's grandfather purchased for him six years ago when he was born. The dark-haired boy with big blue eyes is considered "high functioning" in the spectrum of autism disorders, but will require therapy for many years. William shows a lot of promise, but his parents do not have the extra $1,200 a month required to pay for all of the therapy doctors say he needs. "It just doesn't grow on trees well at my house," his father says.