Advocates ask federal government to intervene in treatment of SC autistic children

COLUMBIA — A "large" number of South Carolina children suffering from autism are not getting access to medically necessary treatment they need because the state pays the lowest therapy rates in the nation, a lawyer representing advocates and organizations has told federal Medicaid officials.

In a letter to the U.S. Centers for Medicare and Medicaid dated June 29, the advocates urge federal officials to direct the state Department of Health and Human Services to increase their reimbursement rates for applied behavior analysis treatments, what advocates believe offers the most hope for many who suffer from autism.

"Our most immediate concern is that a large number of South Carolina children are being deprived of access to prescribed, medically necessary ABA treatment because SCDHHS’ substandard reimbursement rate for these services — the lowest in the country, by far — has resulted in a lack of providers of this desperately needed care," Daniel Unumb wrote for the Autism Legal Resource Center and seven advocates and their organizations.

Unumb is the husband of Lorri Unumb, vice president of Autism Speaks and a new appointee for the state Department of Disabilities and Special Needs Commission.  She also signed the letter.

The letter also was written on behalf of Gloria Prevost, executive director of Protection and Advocacy for People with Disabilities, Inc.; Margie Williamson, executive director of The Arc of South Carolina; Susan Sachs and Lisa Lane, co-executive directors of the Project Hope Foundation; Melinda Moore, chief executive officer of The Arc of The Midlands; and Marcella H. Ridley, co-founder and executive director of Winston’s Wish Foundation

CMS officials in the agency's Atlanta regional office could not be reached for comment.

The DDSN commission in June rejected by unanimous vote a request by the state’s Medicaid agency to administer the autism program, citing the low therapy rate and lack of providers as a reason.

State Rep. James Smith, a Columbia Democrat who unsuccessfully pushed in May for a budget amendment to increase the rates, told The Greenville News last month that 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 is 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 in June that beginning July 1, officials had 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.

In their letter, the advocates said the new rate "will do nothing to meaningfully address this issue."

North Carolina's behavioral therapy rate is $50 per hour and Florida's is $48.76, advocates wrote.

"For some time, SCDHHS has conceded the inadequacy of its rates and represented to providers that it would be substantially increasing rates with the transition of services from the state’s Pervasive Developmental Disorder Waiver to EPSDT/State Plan services," Unumb wrote. "Instead of doing so, however, SCDHHS recently announced a negligible increase to $17.28 dollars per hour — less than 40 percent of the average rate paid by other states, and less than 60 percent of the next lowest rate in the country."

Former DHHS Director Christian Soura told lawmakers in January, according to the letter, that of 1,066 children approved for services, 495 had been able to locate a provider to receive any service. And there was no assurance, according to Soura, that those children were receiving the number of treatment hours they needed.

In addition, there were still 1,500 children on the waiting list, most of whom were eligible for services, Unumb wrote.

"In the last several months, with the continued lack of meaningful action on rates, the situation appears to be worsening rather than improving," he wrote. "The debilitating effect of these delays and denials of care is profound and long-lasting. Expedited access to treatment is critical in treating ASD."

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.

The agency has not sought funding from lawmakers to increase rates, Unumb wrote. But he said the agency has enough funding anyway to do so.

"We cannot help but recall the words of United States District Judge Joan Lenard in her 2012 decision in the case of K.G. v. Dudek," Unumb wrote. "Ruling from the bench against the State of Florida’s Medicaid agency for failing to provide ABA, Judge Lenard asked a simple question— “how many children have been lost?” We ask that CMS exercise its authority to spur resolution of this pressing issue so that we in South Carolina will no longer have to ask that question."