Emotional Hearing for Parents with Autistic Children
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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."
Photo Gallery
Autism Bus Ride to Richmond
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)
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)
Diagnosed with classic Autism, Ethan Nunez, 6, has difficulty maintaining eye contact. (Cydney Cappello)
Residents of Loudoun County enter the General Assembly to speak to the Special Advisory Commission around 12 p.m. Monday afternoon. (Charity Corkey)
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)
"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."
Tagged: health, Loudoun Comm. Health Center, special needs, State news
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If Mr. Spielman's estimate for the costs of ABA is correct, the cost of providing therapy for ALL those affected by autism FOR THE NEXT TWENTY YEARS would be about $700 billion (without factoring in inflation). Hmm. What else are we being asked to pay for that will cost us at least $700 billion? As a taxpayer, I would rather chip in to pay for helping these kids than bailing out Wall Street fat cats and idiots who borrowed to the hilt for more house and lifestyle than they could afford.
Posted by romito (anonymous) on September 30, 2008 at 8:52 p.m. (Suggest removal)
Autism is a nice scientific word for poor parenting. As Mr. Savage pointed out, I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.' "
Posted by miniturk15 (anonymous) on September 30, 2008 at 8:59 p.m. (Suggest removal)
The reason health care costs keep going up is we keep insuring more things that "add slightly" to the cost of insurance for everyone. Create a separate insurance policy for people to buy coverage for autism - just like long term care, disability. To make the expense more affordable I am sure supporters like Poisson will generously give his own money to buy down the price of the insurance.
Posted by rplm337 (anonymous) on September 30, 2008 at 9:42 p.m. (Suggest removal)
For those who critisize I must tell you I felt the same way before my sons were affected. I too thought it was bad parenting and rolled my eyes but today I know different. Two of My children lost skills and are effected neurologicly by toxins. There is a blood test that proves their autism. They will need to be institutionalized if they don't get the care now and that will cost taxpayers a lot more.
Posted by panel (anonymous) on October 1, 2008 at 11:14 a.m. (Suggest removal)
Kudos to Ethan and his family who dared to bring their 6 y/o son with them on a long bus ride to then sit through a public hearing so that the voices of all our children could be heard.
Ethan was a real trooper and an inspiration to us all.
Posted by jlmpdx (anonymous) on October 1, 2008 at 12:22 p.m. (Suggest removal)
Response to miniturk, please refrain from posting ignorant comments that you obviously don't know anything about. I am a master's level healthcare professional and do not have a child with autism, but am nevertheless extremely offended at your comments. Autism is a medically researched and diagnosable disease, and your judgemental comments are degrading and hurtful to any parent with a child with autism, as well as emberrassing to yourself and your family, I would expect. Maybe you should educate your self about this disease before you post such comments in the future. Furthermore, there is nowhere in the research I think you will find, that references autism being "caused" by a single mother, as you are inferring in your un-educated comments either.
Posted by 3256hello (anonymous) on October 1, 2008 at 4:48 p.m. (Suggest removal)
For someone supposed to be “educated” there sure are several mistakes in your 5th grade caliber paragraph. Please check the spelling of judgmental, embarrassing, and uneducated. In addition, you use the comma in an extremely reckless nature that is an obvious sign of your inferiority complex. Regardless of our intellectual differences you may have proved your point of Autism being real. My contention is that only an Autistic person could concoct the piece of trash writing you just submitted. Bravo Rainman!
Posted by miniturk15 (anonymous) on October 1, 2008 at 9:02 p.m. (Suggest removal)
miniturk, oops, unfortunately, some, of, us, educated, professionals, out, here, in, the, working, world, serving, our, community, and, treating, people, with, legitimate, medical, conditions, don't, have, time, to, use, spell, check.
Posted by 3256hello (anonymous) on October 2, 2008 at 1:55 p.m. (Suggest removal)
Carol Nunez is one of my best friends and I have been witness to the unending battle here and her husband have faced. It blows my mind that there are still people like "miniturk" out there who think autism is not real. How unbelievably ignorant. I pray that no child of "miniturk" ever is diagnosed with autism or any other type of disease. I am more than willing to pay a little more insurance if it helps with therapy. We have mental therapy, smoking cessation therapy, alcohol rehabilitation and countless other maladies that are covered by insurance, autism should be no different. Carol and Rick Nunez have basically devoted their lives to helping Ethan have the best life possible. I have seen first hand the differences in his behavior due to proper therapy.
Posted by sprakss (anonymous) on October 2, 2008 at 4:50 p.m. (Suggest removal)
Wow...I'm so glad someone seems to have a solution. Here I am worried about the health of my children and I come to find out its only "bad parenting". That make me feel so much better. I will pay you large to come to my house and help me with my "bad parenting". I've been paying thousands in therapy but if you can teach me how to properly parent a child who can't seem to understand anything, lost language, lost imitation skills, play skills, eye contact, chewing, and then come on over for dinner and lets get started!! This should be interesting!!!cmfitness@verizon.net
Posted by panel (anonymous) on October 2, 2008 at 6:05 p.m. (Suggest removal)
. I firmly believe the research that Dr. Dmitri Krystaveinsky from the Kiev Institute has developed. His contention that Autism is a man made diagnosis by Americans in conjunction with federalized programs and the medical industry is 100% accurate. These social miscreants can be cured with stern lecturing, mental intimidation, and extreme positive punishment Positive Punishment i.e. adding a displeasurable stimuli such as physical pain or insults when the abrasive child chooses to misbehave is used in place of chemical medication or unnecessary “counseling”. The economic technique of Cost Benefit analysis may be used as well when discussing the financial ramifications these spoiled kids cost taxpayers. Cost Benefit Analysis or cba is a relatively* simple and widely used technique for deciding whether to make a change. As its name suggests, you simply add up the value of the benefits of a course of action, and subtract the costs associated with it. To put it bluntly we spend more tax dollars on these kids that will never develop into successful or productive adults. Quite simply we would be better off to plant trees that give off oxygen to humans than spend money on these kids that give nothing back.
Posted by miniturk15 (anonymous) on October 4, 2008 at 10:02 p.m. (Suggest removal)
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