Family members of people with developmental disabilities are used to struggles. They become part of life when a loved one relies on special services to get through school, or work, or even a day at home.
But Kansas’ transition to a managed-care Medicaid program, KanCare, has vastly complicated matters for many of these families and the people who take care of disabled Kansans.
In the past, they interacted with specialized disability offices operated by nonprofit groups or county governments to coordinate services such as overnight aides, transportation and assignment to group homes. Now crucial decisions are made by three separate health insurance companies whose expertise is in providing medical care, not services for disabled people.
At a recent meeting in Johnson County, family members aired a litany of complaints. Paperwork is getting lost. Long-time guardianships are not being recognized. It seemingly takes forever to get an answer to a question.
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“People’s existence is so unsettled,” a parent said tearfully. “I’m trying to figure it out and it’s really a challenge.”
Service providers weighed in with their own problems. Paperwork and bureaucracy has ballooned, they said, leaving less time to help disabled clients. Many providers, who have gone eight years without an increase in reimbursement rates from the state, have had to hire additional staff to deal with new administrative responsibilities.
“It’s taking months to fix what never was a problem before,” said Dynel Wood, who operates a support services agency.
Underlying the frustration is a palpable sense of fear.
Many families have received notice that disabled individuals are being moved into “health homes,” not physical places but coordinated care networks designed to keep people healthier and reduce costs.
The theory is sound, but implementation is proving to be remarkably complicated. The biggest problem is that not all case workers will be able to work with all of the “health homes.”
For families of developmentally disabled citizens, a good case worker is a lifeline. The prospect of losing a case worker is creating near-panic.
No patient will be forced to remain in a health home network, said Angela DeRocha, a spokeswoman for the Kansas Department for Aging and Disability Services.
“This is an additional level of care that we are providing to some very vulnerable KanCare consumers,” she said. “It is optional. Consumers can opt out.”
But that wasn’t immediately clear to families who received notices about the health homes. A good measure of anxiety could have been spared if they had been able to opt into the new program, rather than opt out.
Since the KanCare program got started, hospital emergency room visits by developmentally disabled Kansans with waivers for services have dropped by 27 percent, DeRocha said, suggesting that better coordination of services was having an effect. More people have received additional services than lost services, she said.
But some families have complained about services being cut.
And this is the last group that should be burdened with bureaucratic entanglements. Their lives are complicated and difficult as it is, and even small changes in routine or case management can create setbacks for people with intellectual or developmental disabilities.
Gov. Sam Brownback’s administration should show some compassion and return the coordination of non-medical services for disabled Kansans to the community-based groups that understand these patients, their families and their special needs.