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Many in developmental disabilities community tell lawmakers they don’t want services moved to KanCare

  • The Wichita Eagle
  • Published Monday, May 6, 2013, at 10:32 p.m.

With fears, and in some cases tears, people with developmental disabilities and their caregivers pleaded with Sedgwick County legislators to block Gov. Sam Brownback’s plan to turn home- and community-based care services over to KanCare, the state’s managed-care health program.

Matthew Cook drew loud applause when he told lawmakers that he’s concerned KanCare contractors will put profitability over serving the needs of people like him who have developmental disorders.

“The idea of putting my long-term-care needs in the hands of for-profit health companies is just plain wrong and is morally wrong – the idea of somebody looking not at what I need but what their profit margin will allow,” he said.

Cook, who said he has Asperger’s syndrome, is chairman of the community council for the Sedgwick County Developmental Disability Organization.

Supporters of the developmentally disabled were the largest contingent among about 100 attendees for a Monday night public forum held by the South Central Kansas Legislative Delegation.

Fifteen lawmakers attended the forum, the last one for this legislative year. On Wednesday, lawmakers will return to the Capitol for their annual wrap-up session.

The forum offered a preview of what is expected to be a substantial protest by the developmentally disabled community at the Capitol on Wednesday.

KanCare is the governor’s effort to reduce the state’s health- and disability-care costs by contracting with private insurance companies that are paid flat rates per client. The program has already been implemented for medical services.

But last year, the Legislature voted to delay having KanCare take over residential, job-training, living-assistance and other services for the developmentally disabled until Jan. 1, 2014.

Parents and service providers told lawmakers that the medical side of KanCare has been a nightmare, and they’re afraid it will be even worse when the program takes over disability services, which vary widely from individual to individual.

In a tearful speech, Cassandra Sines, who said she has adopted several special-needs children, told the lawmakers that KanCare’s restrictions on mental health care had already caused substantial problems for her daughter, who is mentally disturbed.

“Last year my 9-year-old daughter was admitted to a psychiatric treatment center,” she said. “She was extremely aggressive to me and her dad and self-harming and destruction of property. We were very concerned about our boys and their safety.”

She was initially approved for 90 days of treatment, with the possibility of two 60-day extensions, Sines said.

“When KanCare was implemented, we were told that … now she would be reviewed on a week-by-week basis, and if she was denied continued treatment, we would have 24 hours to bring her home, even if she was still having aggressive behaviors.”

She said because of the problems the family has experienced with KanCare, they’re considering returning the girl to state custody.

“Which is not something that we want to do and not something that any family should have to do to take care of their daughter and get the treatment that she needs,” Sines said.

She said if KanCare is expanded, “I am terrified how it is going to affect my son,” who receives community-based developmental disability services.

Several lawmakers who addressed the constituents’ questions acknowledged there have been some problems getting KanCare up and running. But they said they’re not sure whether those problems are systemic or isolated incidents as change is implemented.

Sen. Ty Masterson, R-Andover, said he needs to hear from more individuals who have experienced serious problems with the system before he will be willing to declare it broken.

Fellow Sen. Michael O’Donnell, R-Wichita, said his family has personal experience with KanCare and that so far it has worked fine for them. His father, the Rev. Michael O’Donnell, serves as legal guardian for an autistic adult who attends his church.

“He’s doing great,” the senior O’Donnell said after the meeting. “His funding is more than enough to take care of his needs.”

Sen. O’Donnell said he hasn’t decided how he will vote if a KanCare carve-out measure comes to the Senate floor but that he is committed to making sure that disabled individuals receive the care they need.

Reach Dion Lefler at 316-268-6527 or dlefler@wichitaeagle.com.

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