Parents look to lawmakers to stop children with autism from 'falling through the cracks'

Updated: Apr. 24, 2017 at 8:39 PM EDT
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COLUMBIA, SC (WIS) - The parents of children with autism say their needs can fall through the cracks in South Carolina - especially if their families don't have the insurance coverage they need to pay for expensive treatments.

A bill in the State House now aims to expand insurance coverage for those with autism. Autism advocates are pushing for it to pass, but it has stalled in the House.

Rep. Nathan Ballentine (R- Richland) sponsors H. 3747 in hopes of adding more insurance coverage to the expansion passed 10 years ago, under Ryan's Law.

Ryan's Law required state employee insurance plans and fully-funded large group plans to fund treatment like Applied Behavior Analysis (ABA) therapy for children with autism.

The bill filed recently would further mandate people on small group plans, which is small-business insurance plans, and individual plans to be covered by insurance.

Autism Speaks advocate Lorri Unumb works with the nonprofit group to fight for better autism treatment coverage across the country. Unumb is also a parent and Ryan's Law is named after her son. He was diagnosed with autism at a young age.

"When my first-born child was diagnosed with autism, what was recommended was a therapy called Applied Behavior Analysis," Unumb explains.

She later learned the price of the therapy runs between $50,000 to $70,000 and her insurance would not cover it. Working as a lawyer, she paid out of pocket and devoted her entire salary to her son's treatment.

"But it was a knife in my stomach to think, 'what is your average family supposed to do?'" Unumb says.

Unumb began her crusade to get Ryan's Law passed. Now, she realizes there are holes, including others without insurance coverage. She has now gathered other families to push for the next bill to expand coverage.

Jim Raman is another parent and local orthodontist whose son, Jimmy, is fortunate enough his parents can pay out of pocket for his treatments.

"It's sad to see you know, it's the working class South Carolinian who makes too much to be on Medicaid but not enough to be able to afford it themselves. You know and these children, they just fall through the cracks and that's why this mandate is necessary," Raman says.

Raman says he's joined the push for more insurance plans to cover autism treatments because those like his patients and employees are people who need it.

But the bill has stalled in the House, and a similar one stalled in legislative sessions before. Ballentine says part of the reason is because there are groups fighting back against it. There are healthcare and insurance groups with concerns over cost.

"It will simply be an insurance policy increase of about 50 cents per member per month," Ballentine says. "This would keep our Medicaid rolls from growing. This would let families actually be able to take care of their children through their normal insurance like everybody else who has insurance."

Those not in favor of the bill's passing include the South Carolina Association for Healthcare Plans.

The group says concerns over the legislation include the rise of healthcare premiums; they call the bill unfair since it does not include all insurance plans in mandating coverage.

Further, they say there should first be more resources considered allotted to autism care and treatment availability in the state before the bill for more expansion is considered.

H. 3747 never received a committee hearing this session. Lawmakers, however, will try to insert the proposal into another bill in an attempt to get the plan on the House floor for debate.

If you'd like to reach out to your House member about this and any legislative matter, you can go to the State House website and find their contact information.

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