For three years, Emily Wright of Lexington says her life has felt like one long roller coaster ride, watching her daughter grow up while missing out on a critical therapy that could change her future.
Her 14-year-old daughter was diagnosed with autism at age 12. The doctor assured Wright that her daughter could increase her language, communication and social skills and decrease problematic behaviors with an intensive autism therapy. But then Wright learned her family’s private insurance policy doesn’t cover the treatment, which is too expensive for many parents to afford out of pocket.
The treatment, which may require working with a therapist 40 hours a week, can cost as much as $70,000 a year, a state lawmaker told his colleagues after hearing from families and autism advocates.
“Every day we’re not getting (therapy for her daughter) is one less day or week we have until she’s an adult,” Wright said. “The biggest fear I have is she doesn’t reach her potential.”
Getting the vital therapy now, Wright said, could help her daughter hold down a job later and become “a productive member of society.”
Wright and other advocates blame state lawmakers for creating a coverage gap by failing to require all insurers to cover the therapy, considered by advocates an effective way to help children with autism lead independent lives in adulthood if started early.
Her family owns a small business, and their small-group private insurance policy does not cover the therapy. So they switched their daughter to her own individual policy, only to discover that it, too, does not cover her doctor’s prescribed treatment.
Lawmakers in 2007 passed Ryan’s Law, which requires large-group health insurance plans and the State Health Plan to cover autism therapy. But lawmakers excluded individual and small-group markets because they could not predict the cost to insurance premiums.
Now, autism advocates are in their fifth year of attempting to expand a state law to require all state-regulated health insurance plans include the treatment, called applied behavior analysis therapy.
But lawmakers and insurers are not on the same page.
Meanwhile, some children with autism are being left in the lurch, their parents say.
“For goodness sake, how many children are growing up without the therapy they need because the Legislature won’t act?” Wright told The State.
‘Robbed’ of a future
Parents of children with autism say they need private insurance to cover therapy because coverage under the state’s Medicaid program, which their children are entitled to, is not working.
Providers of the autism therapy say the state’s low Medicaid reimbursement rates make it difficult to offer the services to patients of the federal- and state-run health insurance program for the poor and disabled. A dearth of providers has meant that many families, even those the state has approved to receive the treatment, have had to wait for therapy or can’t find treatment for autistic children.
The demand for the therapy likely will only increase, advocates say. Autism is the fastest growing developmental disability in the United States; an estimated one in 59 children in the United States are diagnosed with an autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention.
“Families are being robbed of a chance for a future for their child,” said Leslie Robinson, a York County parent whose 4-year-old daughter was diagnosed with autism at age 3.
“We are desperate,” Robinson told lawmakers. “While stalling, the provider network has basically been eviscerated.”
After months of waiting, Wright’s daughter, Reagan, eventually was approved for therapy through Medicaid, only to be placed on a waiting list for two and a half years with three difference Midlands providers.
“It breaks my heart to think about where my daughter could be had she gotten this therapy,” Wright said.
Requiring more private insurers to cover autism therapy could reduce the number of children on Medicaid waiting for services, and help providers stay in business, and recruit and retain therapists. Private insurers also generally reimburse at higher rates, Wright and Robinson said.
The state may have another reason to make the change.
Lorri Unumb, an autism awareness advocate from Lexington whose son is the namesake for Ryan’s Law, says by not requiring all insurers to cover the therapy, the state is violating a federal mental health parity law.
That federal law generally prevents group health plans and issuers from discriminating against people with mental health and substance use disorders by imposing less favorable medical benefits.
Some lawmakers and insurers argue requiring all insurers to cover autism therapy will lead to premium increases for everyone in the state and potentially cost South Carolina millions each year.
One lawmaker, however, argues the cost won’t increase premiums much.
Lawmakers in 2007 excluded individual and small-group health insurance markets because the cost of claims was unknown.
“We now know how this benefit impacts premiums ... which is a nominal” increase to premiums, said state Rep. Seth Rose, D-Richland, who sponsored a bill that would require autism therapy coverage for all health insurance policies and health benefit plans.
A report from the S.C. Department of Insurance estimates the cost to expand mandated coverage for autism therapy would be 53 cents per member per month for each person who purchases a qualified health plan. But that cost could rise as high as $1.72 per member per month, according to the report.
Forty-nine states require the coverage that South Carolina started in 2007 and most have applied the coverage mandate to all insurance markets. South Carolina is one of about 10 states that have mandated coverage generally but left out the individual or small-group market, or both.
“We have to catch up and close the gap,” Rose said.
Opponents of the bill say it could cost the state as much as nearly $4 million a year to start, if the state is required to pick up the cost of the therapy under a rule in the Affordable Care Act designed to protect policyholders from increased costs due to newly implemented state mandates above what is federally required.
However, state budget forecasters, in a fiscal analysis of the bill, found no state has been forced to pay for any mandate enacted since the ACA took effect.
Still, insurance advocates say costs will rise for patients, if Rose’s bill becomes law.
“If the goal is to increase service to as many South Carolina children as we can, then the mandate bill is a very expensive and ineffective tool to reach that goal,” said Jim Ritchie, president of the S.C. Alliance of Health Plans. “If a person is buying through a small-group coverage, it will cause those premiums to rise and make it less affordable to small businesses. ... It’s not a one-size-fits-all solution.”
Instead, the insurance industry has been working to advance proposals in the S.C. Senate, one of which would place those with autism into a high-risk insurance pool.
The state would hire an insurance company to create a rider for purchase by those in need of autism therapy. That would require families to pay a second premium.
That approach would “(provide) a targeted solution to a targeted need, without raising everyone’s premiums,” Ritchie said.
Autism advocates contend it would price families out of coverage because it does not distribute the cost among all policyholders.
A panel of lawmakers last month voted to advance Rose’s House bill. But with only three working days left in the legislative session, the issue is guaranteed to get kicked down the road again to 2020.
Richie, though, said the alliance is working with Senate Banking and Insurance Committee Chairman Ronnie Cromer, R-Newberry, to convene a working group to address reimbursement rates, access and coverage.
Cromer could not be reached for comment.
“This is a rabbit hole we’ve been falling (down) for years,” Robinson said.