Parents of disabled kids urge Kansas lawmakers to expand aid and fix issues with health care system
Parent Rick Elskamp urges legislators to provide more aid to struggling families during Monday’s hearing on KanCare oversight. (Kansas Reflector screen capture from Kansas Legislature YouTube channel)
TOPEKA — A Kansas mother struggling to balance treating her cancer with caring for her disabled children urged lawmakers Monday to provide more support for people like her.
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. Now, with a mastectomy scheduled, Keck said she doesn’t know who will watch them while she is recovering.
According to Keck, her daughter’s full-time nurse covers 52 hour a week, and her husband, a full-time nurse, handles 40 hours of child care per week, leaving Keck in charge of her daughter for about 76 hours per week. Keck doesn’t know what to do for her six- to eight-week mastectomy recuperation period, where she won’t be able to do any heavy lifting.
“I too have concerns about another mastectomy, but the biggest cause of stress and anxiety is not knowing how I will care for two of my three disabled children/adults long enough to take care of my own medical needs and recover with the ongoing workforce crisis,” Keck said in testimony submitted to the Robert G. Bethell Joint Committee on Home and Community Based Services and KanCare Oversight.
Keck asked lawmakers at the meeting to address systemic issues by increasing medically necessary nursing care for children on the Technology Assisted Waiver, a Kansan waiver that provides people with services such as personalized medical care, and find ways to address the statewide shortage of qualified health care workers.
Keck said the KanCare system, the state-administered form of Medicaid in Kansas, needs to be fixed.
“What is happening in our system is a lot like cancer,” Keck said.
An issue brought up several times during the seven-hour meeting Monday was the waitlist for receiving aid for intellectual and developmental disabilities.
More than 4,800 Kansans are currently on a waiting list for the Intellectual and Developmental Disabilities HCBS waiver program, 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.
Parent Rick Elskamp said his 21-year-old daughter, Sheridan, got on the waitlist in 2013 and is still waiting for help, with advisers telling him the wait could be anywhere from 10 to 15 years.
According to Elskamp, 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.
Elskamp said he and his family tried to explore other options, such as contacting legislators, putting in a funding crisis request and utilizing a respite care plan offered by their insurance, all of which was denied or failed, Elskamp said.
“It should not be this difficult getting the funding for services Sheridan deserves. Could you imagine waiting 10 years after suffering a disabling injury to get benefits?” Elskamp said in his testimony.
Other speakers at the meeting brought up issues with child health care coverage in the state.
Approximately 76% of KanCare enrollees are children and their caregivers, according to the Kansas Department of Health and Environment, but child health care advocates say an outdated child insurance eligibility requirement is barring hundreds more from adequate coverage.
The Kansas Children’s Health Insurance Program determines program eligibility by federal poverty income guidelines, with children qualifying if their families make less than 250% of these income guidelines.
But advocates from the Kansas Action for Children say the state Legislature tied CHIP eligibility to the 2008 fixed poverty level, and have never updated it. Legislators increased funding during the 2022 legislative session to address the issue, approving $1.4 million in increased CHIP coverage, but advocates are now asking legislators to find a permanent fix to the issue in the 2023 legislative session.
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