COLUMBIA – A new South Carolina Medicaid program that will offer unlimited treatment services for children diagnosed with autism may reach only a fraction of the children waiting for help because low rates paid to therapists have caused providers to back away, advocates say.
The program is so ill-equipped, in fact, that the state Department of Disabilities and Special Needs Commission recently rejected by unanimous vote a request by the state’s Medicaid agency to administer it.
Marcella Ridley, an autism advocate and co-founder of Winston’s Wish Foundation, describes the situation as “catastrophic.”
“This program is disintegrating before our very eyes,” she said. “Everyone is passing the buck. And meanwhile, upwards of 2,000 children are waiting for life-saving treatment. And every day that passes, their opportunity for amelioration is growing smaller and smaller.”
Rep. James Smith, a Columbia Democrat who unsuccessfully pushed last month for a budget amendment to increase the rates, said what is being offered by the state is “effectively a denial of service” for families of autistic children.
“It’s a huge problem,” he said.
Asked why the state’s therapy rate was so low compared that of its neighbors, Colleen Mullis, a spokeswoman for the state Department of Health and Human Services, the state’s Medicaid agency, said beginning July 1, officials have approved a 27.25 percent rate increase for line therapy, “the first step in a multi-year process.”
“We will continue to review access, utilization and volume of these services through the next year as well as research rate construction in other states as we continue to evaluate the need for program changes in the future,” she said.
The increased rate is $17.28 per hour, up from $13.58 but still far below what is needed to attract and retain the therapists needed, advocates say.
Since 2007, Mullis said, the state has offered a limited autism behavioral health benefit to children aged 3 to 10 under a federal program, the Pervasive Developmental Disorder waiver. This waiver, administered through DDSN, provides a limited number of slots for eligible beneficiaries to receive services for up to 36 months, she said.
Due to federal requirements, effective July 1, the state DHHS will expand autism services to all eligible Medicaid beneficiaries up to age 21 and remove limits for the duration of treatment, Mullis said. Medical necessity requirements will also be less stringent for individuals to qualify for services.
Both Applied Behavioral Analysis, considered the gold standard of therapy for treating autistic children, as well as other evidence-based practices will be available from board certified and licensed practitioners respectively, she said. These services are in addition to what DHHS already covers for beneficiaries such as speech therapy, occupational therapy and psychotherapy.
The Pervasive Developmental Disorder waiver, which currently has a waiting list of more than 1,200, will end Dec. 31, Mullis said.
Thus far, she said, 1,425 children have been approved for coverage of Applied Behavioral Analysis therapy and 585 are receiving services currently. She said the agency has not received a claim for services for 840 of the children.
According to DDSN, there are more than 7,500 children ages 3-21 diagnosed with autism spectrum disorder in South Carolina.
Autism is a brain-based disorder that affects behavioral, social and communication skills. The U.S. Center for Disease Control and Prevention has estimated that one in 68 children has autism.
Advocates said they were thrilled at the news that states were being told to offer unlimited treatment services such as applied behavior analysis therapy.
About 47 percent of autistic children undergoing such therapy with early intervention eventually are mainstreamed into school classrooms, advocates say. And another 42 percent are able to be mainstreamed but need additional support, Ridley said.
“So you’re looking at a 90 percent success rate,” she said. “It’s hard to beat that.”
But the key to the treatment being available is an adequate rate for therapy, and the current rate authorized by DHHS is among the lowest in the nation, advocates said.
The state’s increased rate of $17.28 per hour is not only well below most states, it’s about half the $30 rate paid in Mississippi, according to Autism Speaks, a national non-profit that conducts research and advocacy on autism. The national average is $43.41, according to the organization. North Carolina’s rate is $50.
Federal law requires that Medicaid rates be sufficient to attract enough providers so that Medicaid beneficiaries have the same access to treatment that members of the general public have, according to advocates.
States and the federal government share the costs and responsibilities for running Medicaid programs.
Smith said his proposed amendment to increase the rate to $40 failed by one vote. The Legislature has adjourned for the year and will not consider budgetary items until 2018.
“We’re about to lose a generation of those kids that now are far more likely to be institutionalized and cost us far greater but more importantly a loss of a productive life,” he said. “We shouldn’t stand for this.”
At the June 15 DDSN board meeting, commissioners said they were in a no-win situation. If they agreed to administer the program for DHHS, some worried that they would become the public face of a program that would draw scorn. If they rejected it, they also expected criticism.
“I for one am very nervous about starting a program that is underfunded right from the beginning,” Commissioner Vicki Thompson of Seneca told other commissioners.
Vice Chairman-Elect Gary Lemel said that “whenever we’re the public face of anything we take the hits, not DHHS.”
“We can point fingers all we want to but that doesn’t play well in newspaper articles,” he said. “They’re going to say we’re the administrative body and it’s going to look bad for us in front of the Legislature and it’s going to look bad for us in the public eye.”
He said there remained “significant gaps” between what was proposed and what the commission wanted in the program. Lemel said the board wanted to help because it was a population the agency already served.
“If we say no, we’re the bad guys for not serving those people,” he said. “There are political ramifications in saying no.”
Chairman-elect Eva Ravenel asked why the agency could not just tell DHHS to increase the reimbursement rates.
“If you want us to do a good job, you have to pay for it,” she said.
But other commissioners said the sole issue for the board was the administrative contract and the payment for that oversight was not being debated.
DDSN Executive Director Beverly Buscemi told the board that DHHS officials have said there was no money to increase the rates beyond what they had already done.
Chairman Bill Danielson said he saw little benefit to the agency overseeing the program.
“We’ve got a program with a consumer pool that is mushrooming out,” he said. “We have a provider network shrinking and we have dollars half of what our neighbors have, give or take, for our providers. And we don’t have training and facilities in place. And we have to worry about who is doing the diagnostic work. I haven’t heard anything positive yet other than we are the disabilities agency that should be doing this.”
Thompson said the “deal breaker” for her was the low reimbursement rates and the lack of providers.
“We can’t do it,” she said. “We just can’t do it.”
DHHS subsequently announced it would administer the program.
“SCDHHS will continue to assume the complete role of ASD provider enrollment, application screening and processing for the new ASD program starting July 1, 2017,” Mullis said. “Facilitating the process directly with the providers should make this a more seamless and easier process. Additionally, SCDHHS will continue to be the intake for all assessments for autism fee-for-service authorizations.”
Ahead of Saturday’s roll out, some providers have already announced they would not accept new Medicaid enrollees or would shut down part or all of their operations.
Anna Craft, the vice president and incoming president of the South Carolina Association of Behavioral Analysts, said a recent survey of 59 analysts shows that only five were accepting new Medicaid clients.
Another survey, she said, found that a majority cited low rates as the primary reason they would not take on new Medicaid clients.
Lisa Lane, co-executive director of the Project Hope Foundation, which serves autistic children in the Upstate, said this week she notified 350 families on a waiting list for services that the foundation would not be accepting new Medicaid clients.
“It’s heartbreaking,” she said. “The shortage of providers is based on the fact that it is not a sustainable business for people. There are folks who want to do this work, who are excited to be in a job where they are changing lives. But we can’t attract them and retain them if they can’t pay their bills.”
Lane, who has an autistic son, said her organization also had to close its Charleston services as a result. She said she knows the news is “devastating” to affected families.
“We fully know what that does to a family to say, ‘here is a service that would be life-changing and you don’t have access to it,” she said. “’And the clock is ticking for your child.’”
If the therapy reimbursement rates were higher, she said, families who have been waiting for years for service could be served. She said her organization had prepared for new clients and were excited at the possibilities but the funding is not enough to accept new clients.
Teri Todd, co-owner of Palmetto Autism Interventions in Columbia, which serves about 100 Columbia and Greenville children, including about 74 through Medicaid, said her organization is closing its doors.
“The restrictions and the new requirements they are imposing as of July 1 and the reimbursement rate which they have set makes it impossible for our young company to remain open,” she said. “We explained this to them. We’ve met with various people at DHHS as well as legislators explaining that with the turnover and the requirements they were imposing that we would not be able to stay open. It would just cost too much.”
She said some children who started with her organization did not speak but after a few years of treatment were able to move into normal classroom settings.
Ridley, of Winston’s Wish Foundation, said the decision by the state is a costly one. She said studies estimate the lifetime cost of autistic children who do not receive treatment is about $3 million.
Advocates say many providers are registering with DHHS to continue to get paid for current clients.
Sen. Thomas Alexander, a Walhalla Republican and chairman of the Senate finance subcommittee that oversees DHHS and DDSN, said he plans to try and find the necessary money next year to increase rates further.
“We’ve got to have providers,” he said. “It wasn’t brought to our attention early enough to be able to address it all in one year. It’s going to continue to be a priority for me as we go forward to get those rates to where they need to be.
"We didn’t get into this place in one year so we can’t get out of it in one year. But it’s at the top of my agenda to make sure we get it where it needs to be.”
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