Nancy Alar’s 39-year-old son, Matthew Ward, has autism, but he lives in his own Downtown Madison apartment, works at the library and sells art he makes.
With Dane County’s state-required shift next year to Family Care and IRIS — both Medicaid programs for people with disabilities and the frail elderly — Alar worries Ward won’t get the help he needs to continue his meaningful life.
“How am I going to tell if these people are going to be a fit for my son?” asked Alar, of Cottage Grove. “I haven’t been able to get any reasonable information about which agency to choose. I feel like I’m throwing darts at a dart board.”
Alar was among about 120 people who attended an information session about the programs Thursday at the Alliant Energy Center, sponsored by The Arc-Dane County, an advocacy group for people with developmental disabilities.
Family Care started in 2000 as a managed-care alternative to traditional Medicaid programs that offer long-term care services. IRIS — which stands for Include, Respect, I Self Direct — is a similar program that lets people design their plan for services such as home care, transportation and job assistance.
The state has shifted nearly all counties to the programs, saying they slow spending growth. It is now requiring Dane County, where about 2,000 residents receive long-term care through county-based Medicaid services, to switch to the state programs starting in February.
County officials say they provide richer services that help many people work and live independently, by contributing additional county funds that bring in a federal match.
The state says similar services will be provided under Family Care and IRIS, and nearly 500 people on a waiting list in the county will be able to get services.
But many people fear their services will be cut. In other counties where Family Care and IRIS have been implemented, fewer people with disabilities work and more live in group homes than in Dane County, said Lisa Pugh, state director of The Arc Wisconsin.
“For people with developmental disabilities, their lives can be very complicated,” Pugh said. “When one small piece falls apart, it’s like the thread that unravels a person’s life.”
The Aging and Disability Resource Center of Dane County started counseling people this month about whether Family Care, IRIS or a third option, called Partnership, might best meet their needs. The ADRC can also help people choose among seven agencies that will run the three programs.
People will transition to the new format in February through May, when the current programs will end, Jennifer Fischer, manager of the ADRC, told the audience Thursday.
“We realize this is a very stressful time for everyone,” Fischer said. “We want you to feel like in this situation you’re able to make a decision that is right for you.”
Lea Kitz, manager of the state’s Family Care and IRIS ombudsman program, operated by Disability Rights Wisconsin, said that if services are reduced, people should get notices about the changes with instructions on how to appeal.
Roland Rosenkranz, of Madison, is concerned about his son, who was born with developmental disabilities.
His son, who is 50 and lives with his parents, gets a ride five days a week to a MARC workshop and goes to the YMCA on weekends. The family receives periodic respite care.
Roland Rozenkranz wonders if the services will continue.
“We’re in a comfortable situation; he has everything,” he said. “Now we’re going into the unknown.”