Seeking Help for Autistic Kids

Va. Parents Want Insurers to Pay for Therapy, but Critics Worry About Costs

By Fredrick Kunkle

Saturday, January 31, 2009

Gareth Oldham does not look like a child at the center of a growing debate over a childhood disease.

On a cold morning in Leesburg, the autistic 4-year-old scoots around his family's playroom in his bare feet. He hurls himself onto a giant tire swing dangling from the ceiling. He squeals in pleasure as it whirls him madly around. But other than a simple command — "Push me!" — Gareth has trouble saying anything at all.

Then his mother, Cassandra Oldham, asks him to say a prayer, the only complete sentence he is able to say. "Dear God, help me. Done," Gareth says in a rush.

His parents, along with many others in Northern Virginia, have their own plea. They have marched on Richmond to ask the Virginia General Assembly to require insurers to cover the cost of therapy for autism. The District of Columbia and 27 states, including Maryland, already do.

The help could would come none too soon for the Oldhams: The youngest of their three boys, Korlan, 2, is also autistic. They estimate that their out-of-pocket bills have hit $50,000 for both boys over two years. Although Bill Oldham, 38, runs a high-tech company that provides very well, they cannot afford the amount of occupational and speech therapy their sons need.

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Fighting for Autism Relief

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Cassandra and Bill Oldham's two youngest sons, Gareth, 4, and Korlan, 2, have a special diet. They must be separated when eating so they don't eat each others food. (Katherine Frey)

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Gareth Oldham loves to be held upside down and tickled by his dad, Bill Oldham. (Katherine Frey)

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Bill Oldman changes the diaper of his youngest son, Korlan, 2, who did not shows signs of autism until after an illness. (Katherine Frey)

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Gareth Oldham, 4, helps to seatbelt himself in as he and his brother, Korlan, 2, go to school. Both have autism and are in the same special needs class. (Katherine Frey)

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Four-year-old Gareth Oldham shows a visitor the basement where he has therapy six days a week. He did not show signs of autism until after an illness, when he started to regress developmentally. (Katherine Frey)

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Brothers, Korlan, 2, and Gareth, 4, play in the basement with their father, Bill Oldham. The two have autism. (Katherine Frey)

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Rachel Lawson, left, looks after nine-year-old Zach Case, foreground, who has a form of autism, and his siblings eight-year-old Jared Case and six-year-old Katie Case while their mother speaks before the Virginia House Appropriations Committee and the Virginia Senate Finance Committee during a public hearing Monday, Jan. 19, 2009, in Richmond, Va. (AP Photo/Richmond Times-Dispatch, Alexa Welch Edlund)

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"In some ways, if this bill doesn't pass, we're going to get driven out of this state," said Cassandra Oldham, 36.

The national debate over the explosion in autism cases has arrived in Richmond this year, and the legislation is one of the few bills to draw attention in a session consumed by fixing a $2.9 billion hole in the budget. The measure, which brought about 200 demonstrators to the Capitol grounds last month, has been backed by Democrats and Republicans. Del. Robert G. Marshall, a conservative Republican from Prince William County who is co-sponsoring the bill with a Democrat, said Oldham, a stay-at-home mother, made a strong impression on him.

"She doesn't have enough money to take care of one," he said.

But private businesses, already facing the worst economy in generations, have lined up against another government-ordered mandate that would drive up health-care premiums. Every increase causes some companies, especially small businesses, to consider dropping their policies and leaving employees without coverage, they say.

"It's the cumulative effect of many mandates that we object to and we find damaging to the affordability of health care coverage for small businesses," Hugh Keogh, the Virginia Chamber of Commerce president, said in an interview.

Autism, first identified in the 1940s, is generally regarded as a lifelong disorder that affects a person's ability to communicate and relate socially to others. The Centers for Disease Control and Prevention says autism affects about one in every 150 8-year-old children, about a tenfold increase since the early 1990s.

Many people think of a severely autistic child as seeming locked inside his or her own world. Today, autism diagnoses fall along a spectrum of behaviors. States with autism laws require insurers to cover therapy for children into early adulthood, according to the National Conference of State Legislatures. That means until the age of 19 in Maryland, and 21 in the District.

"We can say there are more children being diagnosed with autism than at any other time in the past," Thomas R. Insel, director of the National Institute of Mental Health, said Tuesday.

Insel said the soaring rate could be explained by many factors, including broader diagnostic categories and more vigilance among parents, teachers and physicians.

As the number of reported cases has risen, research spending has tried to keep up. Insel said the federal government spent $118 million in 2008 on autism research, a sixfold increase in the past decade, in hopes of finding its cause. Some families with autistic children have blamed exposure to pesticides, fire-retardant clothing and early immunizations, but scientists say no cause is known.

Experts believe early and aggressive intervention, such as speech therapy and behavior modification, can make the difference between a child becoming a functioning adult or needing intense services, or even institutional care.

There are also financial benefits. Spending on early therapy has been proved to lower long-term costs. Insel said the lifetime cost of treatment and care for an autistic person is estimated at $3 million.

By comparison, early treatment runs $60,000 to $80,000 a year. Therapists can charge as much as $180 an hour for applied behavioral methods that help children learn to care for themselves and communicate with others.

The Virginia bill, HB 1588, would mandate insurance coverage for the diagnosis and treatment of autism and related disorders. It would apply only to policies offered by businesses with more than 50 employees and would cap the amount spent on treatment at $36,000 a year. A companion bill, sponsored by Sen. Jill H. Vogel (R-Winchester), is in the Senate.

"This [is] of one of the most serious problems affecting Virginia families, and it's growing at an alarming rate," said Del. David E. Poisson (D-Loudoun).

Loudoun County schools reported 200 children receiving therapy for autism when he joined the legislature in 2006; today the number is 600, Poisson said. He said he believes the bill's prospects are good if it survives in committee.

But the National Federation of Independent Businesses says the autism bill comes at the worst time for companies already laboring under well-intentioned but costly mandates from government.

"We would love to be able to provide the Cadillac of plans, but the cost is driving us out of the market," said NFIB state director Julia Hammond. She said that Virginia already ranks third in mandating health-care benefits and that less than 48 percent of Virginia's small businesses now offer health care. "In a year when we're begging them to do no harm, I want to believe they're not doing something as harmful as that," Hammond said.

But the parents say they feel costs that go beyond tapping home equity lines, in-laws and grandparents.

Like other parents of autistic children, Rachel Kirkland saw her little boy suddenly start sliding backward in time. Kirkland, a school librarian who lives in Manassas Park, said her son Jacob, now 5, was saying a few words by the end of his first year. Then his progress came to a halt.

"He quit talking. He quit walking," said Kirkland, 39. Her HMO would not pay for therapy. But his school began to intervene, and she paid for what she could afford.

"We were easily spending my salary — $36,000," she said.

And that still wasn't enough.

"It's just the most sickening, helpless feeling in the world," she said.

Tagged: health, health care, Lansdowne, State news

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