‘WE WORRY A LOT’
Tennessee parents raise concerns over coming changes to disability care
A plan to change care for Tennesseans with significant intellectual and developmental disabilities is alarming families and advocates who worry it could reduce or eliminate vital publicly funded health treatment for thousands of people.
Tenncare and the state Department of Intellectual and Developmental Disabilities are planning to contract with health insurance companies starting next summer to administer some treatments for Tennessee residents with severe disabilities.
Much of the state's existing disability services already are administered that way, but the state handled the most serious homebased care for individuals through federal “waiver” programs.
The state insists switching remaining state-covered disability services to private “managed care” contracts won't result in any immediate shake-ups for patients. Instead, they said, the change will simplify processes, save money and make services available to
more people on lengthy waiting lists.
State officials point to the creation of the Employment and Community First CHOICES program, which already operates under a managed care model administered by private health insurance companies under contract with the state. That program, officials say, brought a wide array of services to more people.
But families and advocates say the remaining populations who get treatment under waiver programs have more serious and complicated needs. They say the information they’ve gotten so far does not rule out the possibility that managed care contractors could make significant reductions in that care down the road.
For people with the most intense needs, who rely on 24-hour in-person care to maintain their health, even minor shifts could have life-or-death consequences. Multiple parents pleaded during a public hearing last month for state agencies to release more details before pushing such a sweeping redesign of aid.
“This plan is very large and moving forward very fast,” parent and advocate Sara Scott said during the hearing. “It is yet another attempt to homogenize services in the name of money.
“We were promised transparency, but there has been none.”
Concern about drop in services
Parent Russ Overby said he is grateful for existing care overseen by the Department of Intellectual and Developmental Disabilities, which meant his 32-yearold son Erik could move from institutional care to his own home in Sumner County.
Erik has autism, an intellectual disability, a depressive disorder and catatonic episodes. He needs help eating, communicating and taking medicine – all provided through the current system. Overby said Erik and many others like him depend on those kinds of services.
Overby said his son spent years under expensive and restrictive hospital care. Now he has a house. He can go outside, sit on the porch and read a book.
He has a speech therapist and behavioral therapist so he can tell his parents how he is feeling and what he needs. Overby, 72, is scared to see those services reduced once a managed care contractor has a role in care decisions.
The state said services will remain the same when the new arrangement begins on July 1, but Overby worries about what happens a week or month after that.
“My biggest fear is sometime after July 1 the level of services that our son needs and many other people on this waiver needs, aren’t going to be available anymore,” he said.
After months of state webinars and presentations, Overby said he still has unanswered questions.
He worries the contractors will change how treatment resources are allocated or that there will be less incentive to provide comprehensive services to people who cannot work because of their disabilities.
At the hearing, he and other parents said they worry the new system will force families to find new health care providers if the managed care contractors decide not to work with certain providers in the future.
In a joint statement, Tenncare and the Department of Intellectual and Developmental Disabilities said agency staff were aware of those concerns.
“We are using that feedback to inform the program design, but also to help address those fears,” the statement read.
The state reiterated no changes would be made on July 1. But the agencies said they would begin using technology, including apps and webcams, to help people while also providing employment opportunities for people who get waiver coverage now.
Parents said they worried such a shift could siphon resources away from in-person services, particularly for people who are too disabled to work. But the state said it would continue to review treatments provided by the managed care contractors on a case-by-case basis to make sure they were appropriate.
“In the end, we want people to see changes: positive changes to their quality of life,” the statement read. “But those changes will be those of their choosing, and they will be provided with the information and options, to make decisions that will help them live the lives they envision for themselves.”
The state is expected to share more detailed plans with the federal government, after which there will be time for more public feedback and tweaks. Overby said he wants to see parents more involved in developing the fine details of the new plan.
“We worry. We worry a lot,” Overby said.
“We kind of move from crisis to crisis. But this one is particularly troublesome because it will affect our son after we’re gone, and we really have very little control over it,” Overby said. “In the end these decisions are primarily going to be made by state officials, who I recognize are under pressure to save money whenever they can.”
Keeping families involved
Advocacy groups are pushing to have families actively involved to help shape the details of the plan with policy makers.
“These families have intimate knowledge of the programs and intimate knowledge of their own lives and what works best for them,” said Katie Ann Twiggs, community engagement coordinator for the independence team at the Tennessee Justice Center. “The best next step and the most appropriate next step is to establish family and stakeholder work groups that are providing ongoing insights into ways to make the program work better.”
Advocacy groups including the Tennessee Disability Coalition and the Tennessee Justice Center are coordinating to press for details and help parents understand the new landscape.
Tennessee Disability Coalition executive director Carol Westlake said she wants families to share their stories with lawmakers and state employees. Her goal, she said, is to make sure their perspectives are woven into the continued evolution of support services.
“Our priority is just to support Tennessee building a system that is both efficient and flexible enough to really meet people’s needs,” Westlake said. “Our commitment is to do whatever we need to do, to work with whoever we need to work with to make sure that happens.”
Reach Adam Tamburin at 615-726-5986 and atamburin@tennessean.com. Follow him on Twitter @tamburintweets.