Steve and Kaye Wienecke’s oldest daughter, Kristen, 36, has Down syndrome. She lives with them.
“She was born in Oklahoma,” Steve said. “And I’ll never forget the doctor walking over to me and saying, ‘We don’t have to take this baby to her mother. We can give her straight to the state and you’ll never have to see her again.’”
But the Wieneckes wanted none of that. Kristen was theirs and they would spend the rest of their lives caring for her.
They are Christians, they said, and Kristen is their God-given responsibility. End of discussion.
“Every parent in our situation is confronted with the decision: How much am I going to give up to provide the care that should be provided?” Steve said. “Do I go to work and pay someone to provide that care who won’t do it as well or care as much as I do? Or do I just do it myself?”
The Wieneckes, both 61, decided to do it themselves. Kaye, who has a degree in early childhood development, gave up her career to be with Kristen.
“We cannot leave her unattended,” Kaye said. “She can’t live in an apartment and be on her own like some other kids are.”
“Discernment is an issue,” Steve said. “If a stranger walked up to her and said ‘Do this,’ she would. There’s no discernment.”
Proposed Changes to HCBS Programs
The Kansas Medicaid program compensates Kaye for providing “day services” for her daughter. If Kristen didn’t live with her parents, it’s likely the state would pay a residential program as much or more for her care.
Earlier, the Wieneckes tried having caregivers come to their rural home near Stanley, but they said it wasn’t worth the effort.
“I was having to spend all this time managing which college person was going to show up or not show up, or who had a test they had to take, or who couldn’t drive all the way out here,” Kaye said. “It just got to the point where, no, life is too short, I’ll just do it myself.”
For years, the Wieneckes have done whatever Kristen’s case manager said they needed to do to maintain her Medicaid eligibility. They’ve had few complaints.
“As a parent, there’s a natural desire for your child to receive the maximum amount of services, and that desire is countered by the state’s need to save money,” Steve said. “It’s always been the case manager’s job to moderate those differences and to render an objective opinion as to which services are really necessary. We’ve always respected that process, and we’ve never asked for more than what we’re getting.”
That may soon change. The Kansas Department for Aging and Disability Services has proposed allowing the managed care companies that have administered the state’s Medicaid program since February 2013 to have a say in deciding which services “best meet (a) participants needs.”
KDADS last month asked federal officials to approve the plan. The public has until Dec. 20 to comment on the proposal.
The Wieneckes said they object to the notion of a managed care company being allowed to decide which services — and how many hours of each service — a person with a developmental disability needs to continue living in a community-based setting or, conversely, to avoid having to move to an institution.
“It is a major conflict of interest,” Steve said. “All these years, we’ve been told it would be a conflict for us to get to decide what’s best for Kristen because we’d want too much. But now we’re being told it’s OK for a managed care company — a for-profit that derives its profits through savings through reduced services — to make those decisions? They are hardly a disinterested party.”
Kaye said she feared that, eventually, people like Kristen will be dropped from the program.
“You know that when the state gets into real financial trouble, they’re going to start cutting people off,” she said.
KDADS officials have said the proposed changes in the state’s Medicaid plan are meant to increase efficiency, not to cut services.
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