More people with intellectual and developmental disabilities could work and live at home under changes recommended in an advocacy group's plan, which also raises the possibility of converting the state's largest agency into a quasi-governmental entity.
The Arc of Indiana said its "Blueprint for Change," released Tuesday, is the result of 18 months of work by national leaders in the field of developmental disabilities, people with disabilities and professionals in Indiana seeking ways to improve care with shrinking budgets and resources.
"We've got to change some of the basic premises that we're dealing with here," John Dickerson, executive director of The Arc, told a conference in Carmel. "We can't just keep cutting back. If we do, we're turning our back on people and it just won't serve anyone well."
Indiana has more than 20,000 people with intellectual and developmental disabilities waiting for services to support them in their homes and communities, he said.
The core approach of the plan is to find employment outside the home — whether paid or volunteer work — for even the most severely disabled, while providing families with the resources they need to cope. Eighty percent of people with disabilities live with their parents, Dickerson said, and in too many households, one parent must quit his or her job to stay home and care for a disabled child once the child graduates from high school. The plan would turn that dynamic around by helping other family members, as well as the disabled, find work.
Part of the plan involves building more flexibility into the state's Medicaid waiver program to redirect funds to families and individuals instead of group homes and nursing homes in return for lower overall spending.
"We know we don't have endless amounts of money to work with," Dickerson said.
Dickerson believes the plan would yield savings. As much as $25 million a year could be saved simply by helping disabled people living on their own to find roommates with whom they can share services, he said.
The plan also calls for cutting unnecessary regulations. For example, Dickerson said it currently requires five bureaucratic steps to get a disabled person transferred from a workshop environment to a job. Any savings from reducing red tape would go back into programs to help the disabled under the plan.
"We need to find a way to make it simple and easy … and if it doesn't add value to the person's life, if it's just a mindless regulation, then we need to get rid of it," Dickerson said.
Some facets of the plan would require change at the Family and Social Services Administration, not just in the way it does business, but in the agency itself. One of the plan's recommendations calls for a consumer-oriented review to determine how FSSA can better deliver services, with consideration given to the idea of turning the agency into a quasi-governmental, nonprofit organization.
"Maybe there's a new structure in government that could work that serves the taxpayers as well as people with disabilities," Dickerson said.
FSSA spokesman Neal Moore said agency officials meet weekly with stakeholders including The Arc to discuss the scope and design of the Medicaid waiver program and are required to present a report to Indiana's Select Joint Commission on Medicaid Oversight by next July. He declined further comment.