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Aldona and Pat Carney: KanCare bullying erodes trust

  • Published Thursday, May 16, 2013, at 12 a.m.

Have the state leaders pushing to include long-term care services for intellectually and developmentally disabled Kansans in KanCare ever had a doctor tell them that their child has a lifelong disability that has no known cure?

Have they ever cleaned up feces that were smeared all over the room by their child or changed a 13-year-old’s Pull-Up?

Have they ever had to fight off attacks from their adult child while he was in a rage? Or watch, horrified, as he pulls out his own adult tooth?

Have they ever had to stop their child from attacking other people while they were out in public? Or had to take turns going to church?

Have they ever had to stay up most of the night for many nights in a row because their child doesn’t have a normal sleep cycle, but still be expected to perform at their job?

Have they ever had to have poison control on speed dial because their child eats or drinks nonedible things?

Have they ever had their heart ripped out because they had to leave their child at a state institution so he could be safely detoxed off an antipsychotic drug that was no longer effective?

These are just a few of the many trials that our family has gone through since the diagnosis of our youngest child with autism. We know there are thousands of families across Kansas who can relate to a lot of what we have gone through.

Our hearts go out to all those families on the waiting list who don’t receive services. We are grateful for the services we have in place for our son.

What the House Appropriations Committee and Rep. Dave Crum, R-Augusta, did last week in holding the waiting list over our heads in an attempt to stop us from protesting the inclusion of I/DD long-term care into KanCare was the worst form of bullying (May 10 Local & State). We are talking about support and services for those who need help the most.

Brownback administration officials don’t want to listen to the pleas and concerns of those of us who live and work with people who have disabilities. They think they have it all figured out, even though they still can’t show how there will be cost savings by including long-term care in KanCare.

Is it any wonder why we have trust issues with legislators when they pull a stunt like this?

Aldona and Pat Carney live in Wichita.

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