In Kansas, more than 5,000 names are on the developmentally disabled and physically disabled waiver waiting lists for home- and community-based services. Those 5,000 names mean 5,000 stories, all similar yet each unique, each worthy to be set down and read.
I can’t record them all. I do have one from each list.
Scott Wiechman was born 44 years ago with cerebral palsy, but CP didn’t stop him. He has normal speech and for quite a while could walk without any trouble. In fact, he owned and ran a lawn-care business. So he wasn’t on Medicaid.
CP is not deadly, but a lot of times those who could walk when younger develop trouble balancing as they age and have to use motorized chairs or scooters. That is Wiechman’s case. He can’t work, has a power chair and lives by himself. Daily tasks such as dressing and showering have become very hard. He could fall in his apartment, hurt himself and die, and not be found for days.
Friends call but don’t come by. He has no family in town. Does he go to church? I don’t know. But even if he does, no church I know of provides or pays for the type of services Wiechman needs.
He applied for services on the physically disabled waiver 20 months ago, and it could be a couple more years before he gets help.
He could move into a nursing home and Medicaid would foot the bill without blinking. He could also get on home- and community-based services now by having a stroke or bad accident. He’s too young, he says, for a nursing home, and the second option has no appeal. So he’s stuck on that list.
The mother of the second person asked that I not use their names. She has three sons, two of whom have autism. The eldest received services when the family lived out of state. Because he did, his behavior changed and he became quite sociable. He didn’t join the family in coming to Kansas four years ago, but the son, now 16, comes to visit in the summer and volunteers at Bible camp. He’ll do a year in AmeriCorps and go on to college, far exceeding what his mother once expected of him.
His 9-year-old brother also has autism but has been on the developmentally disabled waiting list for two years. Unless things change, he has another four years to go. He’ll never get those six years back. Could he have developed as his brother did? We’ll never know.
That’s not a tragedy; it’s a crime.
In February, staff from the Kansas Department of Social and Rehabilitation Services met with federal officials about the waiting lists. Today, Gov. Sam Brownback reportedly is meeting with federal officials.
SRS staff members have said the Brownback administration was acting in good faith to end the lists, even though it has done nothing about it this year.
Will the new KanCare system somehow save enough money to end the lists? I think SRS and Brownback believe this.
I don’t share their faith. I hope the feds sue Kansas for not providing enough services under the U.S. Supreme Court’s 1999 Olmstead ruling. I also wish the “End the Wait” movement success as it tries to end the developmentally disabled list.
Those on the list are pawns in a cruel and crazy waiting game. It’s past time to end it.