Abbey Ripper was diagnosed with autism at 3 years old, although her parents had realized early in her infancy that she was different from other babies.
At an age when most teenagers aggressively assert their independence, Abbey – now 14 – needs round-the-clock care. She struggles to dress and bathe herself, and she sometimes hits or bites family members when she’s struggling to control her emotions.
“She gets frustrated that she can’t verbalize and say what she is feeling, and she does lash out,” Melissa Ripper, her mother, said. “She feels very apologetic afterward.”
Since August, Abbey has been participating in behavioral treatment sessions to develop better communication skills. But the $4,000-per-month treatment hasn’t been covered by insurance, so Ripper has had to seek financial help from family members.
Digital Access for only $0.99
For the most comprehensive local coverage, subscribe today.
The family’s struggle is one that many in the autism community face: The best treatments often don’t have insurance coverage. That will change on July 1 when a new state law will require all state-regulated insurance plans to cover Applied Behavior Analysis, or ABA, and other treatments.
“There are some families out there that feel like they’re drowning,” said Ripper, who lives in Apex.
Sen. Tom Apodaca, a Hendersonville Republican who sponsored the autism insurance bill, said the legislation was the product of negotiations with insurance companies – which for years have opposed legislators’ efforts to require coverage.
Caps and coverage limits
Those companies ultimately supported last year’s bill, which caps adaptive behavioral treatment – a broader term for programs that include the Applied Behavior Analysis sessions Abbey attends – coverage at $40,000 per year and limits it to patients age 18 and under.
“We don’t need to put anybody out of business, but we do need to cover the families,” Apodaca said.
Apodaca’s bill won’t provide universal autism coverage in North Carolina, in part because the state can’t regulate federal insurance programs such as Medicaid. Autism advocacy groups say they’ll continue to lobby at the state and federal level to expand coverage further.
“I think all insurance legislation is generally incremental; you almost never get everything you want the first time around,” said Jennifer Mahan, director of advocacy and public policy for the Autism Society of North Carolina. “You’re going to have to make compromises or you won’t see legislation passed.”
The treatment is designed to stimulate a child’s development by addressing the way children with autism learn. Providers use positive reinforcement – typically a reward that’s unique to each child – to teach communication and basic skills with a heavy emphasis on repetition.
Ripper says her daughter’s communication skills improved noticeably within months of starting the program.
“Just from what we are seeing from August to now, the language improvement has absolutely blown our minds,” she said. “She can put the words together, and she can have a conversation back and forth with the instructor.”
Abbey is nearly always in motion, often rocking her head back and forth even while sitting down as a way to relax. She likes to hug – even people she doesn’t know well – but has a tendency to finish the embrace with a shove. She loves trips to the beach, but crowded public places can sometimes be overstimulating.
Special needs school
Abbey attends an Applied Behavior Analysis program at a school for special needs children called Learn With The Best. The classroom has a teacher and two teacher assistants.
“Right now they are working on daily living skills with her to just kind of prep her for adulthood,” Ripper said. “She is still doing the academics and things that other kids are doing, but she is also learning how to fold laundry, put on a shirt, brush her teeth correctly.”
But while the program is effective, paying for it without help from the family’s insurance plan isn’t easy.
Ripper teaches part time at an Apex preschool, and her husband, Ralph, is a Raleigh fire captain – so the $4,000 monthly cost is beyond the family’s budget. “We’ve got the support of my family members, and they’ve helped quite a bit,” Melissa Ripper said.
A long fight for coverage
Insurance coverage for behavioral treatment programs is spotty across the country, and getting coverage in North Carolina was a long process.
A bill requiring coverage was first filed in 2010. It got a few hearings in a legislative study commission but never made it to the House or Senate floor.
The proposal got more traction a few years later when then-House Speaker Thom Tillis took up the cause. Autism insurance became a pet issue for Tillis in 2014. But while his support helped the bill pass the House in 2014 with a 77-33 vote, the Senate never took up the proposal.
What changed between 2014 and 2015? Insurance companies dropped their opposition to the bill after a series of negotiations between Blue Cross Blue Shield, autism advocates and psychologists and some tweaks to the bill.
Instead of a requirement to cover autism treatment for those age 23 and under, the new law will apply only to those age 18 and under. The cap on treatment costs increased from $36,000 per year to $40,000, and it will increase based on inflation. The definition of the treatment to be covered was broadened to include some other “evidence-based” behavioral treatments outside the umbrella of ABA.
Blue Cross – along with the N.C. Psychological Association, the Autism Society of North Carolina, and others – signed a letter of support telling legislators the bill “offers a workable path for health insurance benefits to address autism.” Blue Cross hasn’t released any estimates on how much the new law will cost. The previous version had been estimated to cost as much as $15 million a year.
Medicaid still won’t cover it
Some families still won’t catch a break on their autism treatment expenses when the law becomes effective in July.
Laura Driver, a Wake County sheriff’s deputy, has a 15-year-old son with autism. He has Medicaid, which is not affected by the new law. His treatment costs about $30,000 per year.
“We’ve been paying out of pocket for many years,” she said. “He needs to be attending the full-day program, but that is in the neighborhood of $60,000 a year.”
Driver qualifies for coverage through the State Health Plan – which covers ABA – but switching her son from Medicaid would prove costly because Medicaid has better coverage for other in-home care services her son needs.
In addition to Medicaid recipients, the new law doesn’t include people whose insurance isn’t part of a large-group health plan provided by a company with 50 or more participants.
“State insurance laws cover a limited number of plans,” said the Austism Society of North Carolina’s Mahan. “This does not provide coverage for everyone out there.”
Given the steep cost of ABA programs, many families of children with autism can’t afford to sign up. “Insurance coverage is one of the big barriers to getting access to treatment, and for some people it will continue to be,” Mahan said.
Staff photographer Jill Knight contributed to this report