Plans are underway to provide thousands of individuals under age 21 with autism spectrum disorder (ASD) with home-based interventions and other services through the state’s Medicaid program beginning Jan. 1.
“This is absolutely huge,” said Jennifer Bogin, director of Autism Spectrum Services for the Connecticut Department of Developmental Services (DDS). “Many children already get quality programming during the school day. But it’s rare when that programming is brought into the home. This is a way for families to fully include their children.”
DDS is working with the state Department of Social Services (DSS) and other state agencies to draft a new state Medicaid plan to be approved by the federal Centers for Medicare and Medicaid Services (CMS). CMS has said that states must cover ASD services for people under 21. The state’s Autism Spectrum Disorder Advisory Council has until Dec. 15 to make recommendations to the proposed plan.
State officials face an aggressive timeline and multiple challenges, including a shortage of qualified autism specialists and pent-up demand for services for youth who have been diagnosed with ASD or need to be assessed.
“Our commissioner (Roderick Bremby) and health care professionals consider this a watershed moment for autism-related services and for Connecticut’s Medicaid program,” said David Dearborn, DSS spokesman. DSS administers the federal-state Medicaid program for low-income residents, known as HUSKY in Connecticut.
On The Rise
Autism rates have increased significantly in recent years with 1 in 68 children nationwide diagnosed with the disorder, according to the U.S. Centers for Disease Control and Prevention. Although no cure exists, research shows early screening, identification and intervention can help people with autism reach their potential.
The number of children with ASD in Connecticut’s Medicaid program is unknown. But about 6,000 beneficiaries under 21 with ASD were represented in medical claims last fiscal year, Dearborn said.
Bogin estimates that about 200 3-year-olds with ASD have moved on from the state’s Birth-To-Three program every year for the past five years.
“We have lots of children who need services,” Bogin said.
Under the proposed plan, Medicaid would cover evidence-based ASD services that are medically necessary based on a diagnostic evaluation, behavior assessment, and individualized plan of care for beneficiaries under age 21. The plan also would provide care coordination and family navigator services to both children and adults with ASD.
Covered services would include applied behavior analysis, structured playgroups, social stories, pivotal response training and more, said Bogin. “It’s exciting to see Connecticut take the extra step and cover many interventions because one type of service doesn’t fit every child,” she said.
Finding a provider may be difficult at first because Connecticut has a limited number of certified autism specialists, Bogin said. The plan would require DDS to credential all ASD providers who participate in the Medicaid program. For now, DDS is expediting the credentialing process of the estimated 500 ASD providers already registered in the state and will begin working to attract to new providers.
“No matter how you slice it, we do have a workforce problem,” Bogin said.
Game-Changer
The expanded Medicaid coverage is a “huge win” for thousands of children with ASD who have been unable to tap critical services, said Jay Sicklick, deputy director of the Hartford-based Center for Children’s Advocacy (CCA) and director of its Medical-Legal Partnership Project.
“We know that early intervention strategies can be effective in assisting kids along the autism spectrum to reach a much higher level of functioning,” he said.
The CCA and other advocates “have been pressing the state to expand the avenues of payment” for ASD services under Medicaid’s preventive health provision for some time, said Sicklick. Until now, Connecticut children with ASD were caught in a “catch-22” because Medicaid only covered services by licensed providers, but no licensing process exists for autism specialists such as board-certified behavior analysts.
State officials decided to take action after the federal government this summer clarified that state Medicaid plans must cover a full range of ASD services under the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) provision. This category allows Medicaid to reimburse licensed practitioners (such as physicians) and non-licensed providers, such as board-certified behavior analysts.
“It’s a good start,” said Sicklick of the proposed plan, “although many details need to be worked out.”
Still Shut Out
Despite the gains on the Medicaid front, getting all public and private insurers to cover autism-related services remains a concern. “Parents with children who have autism have been struggling for years to get the necessary services from both the commercial world and Medicaid world,” said Sicklick. For example, the Children’s Health Insurance Program (for low- and moderate-income children who do not qualify for Medicaid) and some private insurance plans are not required to cover ASD services.
The coverage disparities continue to frustrate Sicklick.
“You want an even playing field for all the kids in the state.”
I am very happy to see this expansion of coverage for those under 21 who are autistic. These services are necessary because we know that life does not stop at the end of a school day. We also know that early intervention leads to better outcomes. The next step is to acknowledge that those under 21 continue to be autistic when they turn 22 and beyond. As it stands now, provision of many of the services that these folks received before they turned 21 come to an abrupt halt upon their birthday. Their need for services so that they can participate in and give back to their communities and lead fulfilling lives continues. Let’s not forget that often, with only minimal support, people who are autistic are able to work in competitive employment and give back more than it takes to support them. Not to mention the sense of purpose that it can give to their lives. We should begin looking at the bigger picture, the whole person and stop chunking people’s lives.