Parents of disabled children address Kansas Legislature again: ‘Families are drowning’


TOPEKA — Kansans who urged lawmakers to fix the state’s health care system weeks ago say their situations have become untenable.

Kathy Keck, a mother of five kids, three of whom have developmental and medical disabilities, said she left the workforce more than five years ago to care for her children. In September, Keck told lawmakers that she was struggling to find child care for her children, especially since she had a mastectomy scheduled and wouldn’t be able to do any heavy lifting for a six- to eight-week period.

With her daughter’s full-time nurse covering 52 hours a week, and her husband, a full-time nurse, handling 40 hours of child care per week, Keck was in charge of her daughter for about 76 hours per week, she said in testimony given to the Robert G. Bethell Joint Committee on Home and Community Based Services and KanCare Oversight. 

Keck asked the committee to increase medically necessary nursing care for children on the Technology Assisted Waiver, a Kansan waiver that provides people with services such as personalized medical care. Keck had her mastectomy three weeks ago, and her husband had to take off work under the Family and Medical Leave Act  to care for their children.

“As I have asked previously, who is being held accountable for the network inadequacy and workforce crisis? Families are drowning,” Keck said while testifying to the committee again on Wednesday.

Parent Rick Elskamp also testified to the committee in September on behalf of his 21-year-old daughter, Sheridan. Elskamp said Sheridan is mentally a 6-year-old and has sensory issues, a history of seizures, behavioral issues and communication delays. Elskamp and his wife work full time, and payment for her day care is very expensive.

Sheridan got on the Intellectual and Developmental Disabilities waiver program waitlist in 2013 and is still waiting for help, with advisers telling him the wait could be anywhere from 10 to 15 years. The family’s efforts to explore other options, such as putting in a funding crisis request and utilizing a respite care plan offered by their insurance, were unsuccessful.

More than 4,800 Kansans are currently on the waitlist, according to the Kansas Department for Aging and Disability Services. The waiver program provides extra resources, support staff and overnight care options, along with other disability aids.

Elskamp told the committee Wednesday he had no idea of when, if at all, Sheridan will be taken off the waitlist and enrolled in the program, with no progress made since the last time he addressed the committee. Sheridan has 15 people ahead of her on the Shawnee County waitlist and Elskamp said only one person had been taken off the waitlist and enrolled in the program in Shawnee County during the past year.

“All we had to go by was the seven- to eight-year wait time we were given in 2013. Now we are scrambling to figure out how we are going to pay for Sheridan’s day service for possibly the next 10 years,” Elskamp said in submitted testimony.

Fixing the Kansas health care system has been a rallying point for Democrats across the state ahead of the Nov. 8 election, with many Kansans supporting Medicaid expansion. Gov. Laura Kelly has run on a platform of expanding access to KanCare, as Medicaid is known in Kansas, saying she will introduce a fifth expansion proposal to the Legislature in January if she is reelected.

Her GOP opponent, Derek Schmidt, has expressed skepticism about expanding eligibility for Medicaid. Kansas is among a dozen states that still hasn’t broadened access among lower-income people to affordable health care coverage under Medicaid.

Expansion legislation in Kansas was vetoed in 2017 by Republican Gov. Sam Brownback. GOP leadership in the Senate blocked a vote on a House-passed bill in 2019.

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