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On January 1, 2017, the KHI News Service became part of KCUR public radio’s new initiative, the Kansas News Service. The Kansas News Service will continue to cover health policy news and broaden its scope to include education and politics. All stories produced by the former KHI News Service are archived here. Stories and photos may be republished at no cost with proper attribution and a link back to KHI.org.

Families with developmentally disabled loved ones form advocacy group

'Advocates for Invisible Kansans to push for higher provider reimbursement, local control, stable funding

By Andy Marso | March 20, 2015

Families with developmentally disabled loved ones form advocacy group
Matt Fletcher, associate executive director of Topeka-based Interhab, shows the poster for the new Advocates for Invisible Kansans campaign.

Connie Warkins never set out to be the face of a political movement.

An interior designer, Warkins moved from Nebraska in 1969 to go to the University of Kansas and never left Lawrence. Along the way, she and her husband, Dick, had two daughters, Rachel and Jessie.

Jessie was born with a developmental disability. That is what eventually led Warkins to put her face on posters that Interhab, a Topeka-based organization that advocates for developmental disability service providers, is using in a campaign to draw attention to the concerns of families like hers.

Connie Warkins and her family are the faces of the Advocates for Invisible Kansans campaign. Warkins and her husband, Dick, have a daughter, Jessie, who has a developmental disability.

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“We need support,” Warkins said. “We need continued support. Eventually my daughter may be on her own and knowing she’s somewhere where she’s cared for… is really important to us.”

The Warkins’ anxiety matches those of other families with loved ones who have special needs.

They praise the social movement away from institutionalizing people with disabilities in favor of home-and-community-based supports. But they worry about the sustainability of those supports, especially as they age and are no longer physically able to care for their loved ones.

Warkins and others are calling their new lobbying group Advocates for Invisible Kansans, and intend to expose lawmakers to a slice of their lives.

“I think a lot of the people in government are kind of insulated,” Warkins said. “If they could actually see or live with somebody (with a developmental disability) it might make a difference.”

Warkins and others from the new group were at the Statehouse Thursday talking to legislators about their three top priorities. They want to ward off budget cuts to the state’s intellectual and developmental disability system, raise the reimbursement rates for service providers and reaffirm 1995 state legislation that gave local service providers oversight over the system.

“I think a lot of the people in government are kind of insulated. If they could actually see or live with somebody (with a developmental disability) it might make a difference.”

- Connie Warkins, Advocates for Invisible Kansans

Bart Betzen, a Leavenworth County man whose brother, Andy, lives in a group home in Hill City, said increasing the reimbursement rates is key.

It’s already difficult to find quality employees to care for people with developmental disabilities, he said, especially in rural counties where the unemployment rate might be less than 3 percent.

Reimbursement rates for direct care staff at community providers has not been increased in almost 10 years.

“The people who work in group homes are a special breed,” Betzen said. “They’re doing as much as they can with little funds. There is nothing left to cut.”

Betzen knows what awaits his brother, now 64, if the community service providers close: a state hospital.

His brother spent years in such a facility before the movement toward community-based care. He was 21 when the family could no longer care for him and sent him to the hospital. 

“That was one of the hardest things Dad ever had to do was give him up,” Betzen said.

Betzen said hospital residency would cost more than keeping his brother in his community-based group home. But his main concern is the social cost.

“In Hill City, it’s like he’s home,” Betzen said. “The people treat him like family.”

Warkins’ daughter, Jessie, is about to turn 32 and receives day services at Cottonwood Inc. in Lawrence. She's also he’s involved in the Lawrence Parks and Recreation department and she worked part-time at Jefferson’s until January, when the restaurant was damaged in a serious fire.

Lawrence is all Jessie has ever known and Warkins said the city has provided "such strong support.”

Keeping state money flowing to ensure those supports remain convinced Warkins to get involved in Statehouse politics.

“I figured if I can’t advocate for my kid and my family, who can?” Warkins said.