LoudounExtra.com
Emotional Hearing for Parents with Autistic Children
By Charity Corkey
Tuesday, September 30, 2008
At 9 a.m. Monday morning, 13 Loudoun residents boarded a bus for a Special Advisory Commission in Richmond to lobby for House Bill 1588 - a mandate for the medical coverage of autistic treatment in Virginia.
Led by Delegate David Poisson (D-Loudoun), co-sponsor of HB1588, along with Delegate Robert Marshall (R-Prince William), the residents left prepared with stories and pictures of their autistic children.
If passed next year, the bill would require insurers to provide an annual maximum benefit of $36,000 to children under the age of 21 for the treatment of autism, particularly Applied Behavior Analysis. ABA is a costly, intensive program that breaks learning into small steps. It is rarely covered by insurers in Virginia, leaving many parents who choose to use the therapy paying thousands in out-of-pocket fees.
Carol Nunez, who brought her 6-year-old autistic son Ethan to the hearing, said she and her husband Rick spent almost $5,000 in potty training.
"ABA came into our home at 8 a.m. in the morning till 8 p.m. at night for four weeks," said Carol. "It was successful. He's now 100-percent potty trained at home."
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Autism Bus Ride to Richmond
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Parents from Loudoun County traveled by bus to Richmond Monday morning to testify to the Special Advisory Commission about House Bill1588, a mandate for the medical coverage of autistic treatment in Virginia. (Charity Corkey)
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Ethan Nunez, 6, has been diagnosed with Autism. He traveled to Richmond Monday morning with his parents Carol and Rick to stand with them while they spoke about the importance of coverage insurance for Autistic therapies. (Charity Corkey)
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Diagnosed with classic Autism, Ethan Nunez, 6, has difficulty maintaining eye contact. (Cydney Cappello)
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Residents of Loudoun County enter the General Assembly to speak to the Special Advisory Commission around 12 p.m. Monday afternoon. (Charity Corkey)
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Cassandra Oldham, center, holds a picture of her two year-old son Korlan while listening to Delegate Poisson explain the order of the hearing. (Charity Corkey)
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"ABA is most effective if applied early," she added. "Had we had insurance to cover [more treatment], I can't fathom the changes we would have seen."
While most hearings end after a couple hours, according to Poisson, Monday's hearing lasted for five due a high turnout of parents with autistic children and multiple expert witnesses.
In his opening remarks to the commission, Poisson discussed the cost of immediate coverage for autistic children compared to long-term coverage.
"Admittedly, in the near time, mandating this coverage could add slightly to the cost of health insurance in Virginia," he said. "But whatever the cost, and no one can say for certain what it will be, it pales by comparison with what it will be if we fail to invest now in early intervention services."
Stuart Spielman Esq., senior policy advisor with Autism Speaks, estimated later in the hearing that the lifetime cost for one person with autism is, around $3.2 million, and the cost of caring for all persons born with autism in a given year is near $35 billion - the reason being that children who are higher functioning have lower health costs and need less assistance from their families.
Spielman also estimated that the cost increase for those insured will be less than one percent.
When the time came for families to share their stories with the commission, emotions ran high. Cassandra Oldham from Leesburg cried as she told the delegates about her two sons Gareth and Korlan, two and four, who have both been diagnosed with autism. Oldham and her husband Bill have seen improvement in their sons through ABA therapy, but cannot afford to pay for the amount of therapy that both boys need. Providing both of her sons with 40 hours of therapy a week would cost the family nearly $14,000 a month.
"I've been put in a position that no mother should ever be put in," said Cassandra. "When I found out that baby Korlan was also autistic, I had to decide. Should I give one [boy] more therapy than the other? Or, should I give them both equal amounts, but less?"
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Having run out of savings, but determined not to stop therapy due to the timely nature of autism the Oldhams have turned to their community for help, asking for donations, and holding yard sales, bake sale and car washes.
Parents of older autistic children also spoke to the Commission. One mother with a child already past the point for ABA to be effective came to express her support for the bill and ABA therapy.
After the testimonies, several people representing the insurance industry took the stand.
On behalf of the Virginia Chamber of Commerce, Keith Cheatham expressed his concern that a mandate [raising insurance costs] will cause current insurance holders to drop their policies, leaving those insured with even higher premiums.
Doug Gray, a lobbyist for Virginia health insurance companies, discussed the line between medical and educational treatment.
"Is it health care or education," asked Gray, of ABA. "ABA is described as an education service by federal law. Many borderline health care services are not covered by health insurance. For example, if a kid with ADHD needs a tutor or a special school, it would be provided by educators."
Later, Poisson responded to Gray's comment: "[ABA] originates with a medical diagnosis and only an M.D. can make that determination," he said. "ABA is a necessary medical treatment."
Copyright 2009 The Washington Post Company
