LAWRENCE, Kan. -- Should parents be paid for caring for their own children? That's the question raised by a rural Lawrence couple whose son has an illness that will take his life.
Seth Van Nostrand was born with Hunter Syndrome. His body doesn't make a key enzyme. Seth is dependent on a brain shunt. His breathing, eating, sleeping, seeing and hearing are all impaired. Hunters is progressive and deadly.
"I have a few more years if I'm lucky with Seth. It's that part that's the hardest for me," says his mother, Misty Van Nostrand.
But Misty says it's also hard for her to get by on just two to four hours of sleep a day. That's been the case for months as she's worked overnight so she can care for Seth during the day when her husband, Corey, is at work.
The Van Nostrands say for multiple reasons, they haven't been able to get and keep caregivers who are paid through the state's Medicaid program. For one thing, they live out in the country and nurses and personal care assistants don't want the drive.
But the parents say it also has to do with the complexity of Seth's condition and the incompetence of some caregivers.
"It's not like, oh, we don't like their personality. It's like the nurse didn't give him the meds that he needs or they fed him wrong so he was sick for a week," says Corey.
The Van Nostrands propose a solution -- the state paying Misty to provide some of the care she's already providing such as the infusion of medicine Seth receives once a week. It's one of many drugs he has to take.
Misty says the pay would allow her to quit her regular job. But current Kansas law says parents of minors cannot be their paid caregivers. The Van Nostrands think an exception should be made for parents of kids with terminal illnesses.
"A lot of people will think people just want to stay home to be a stay-at-home mom, and that's not the situation at all," says Misty.
"He's actually happier having us do that," says Corey.
They say it would give Seth the best quality of life possible when his quantity of life is limited.
The family's state senator, Marci Francisco, says lawmakers are reluctant to allow parents to be paid because taxpayer dollars would be used with less ability for oversight than there is with outside caregivers.
Francisco says lawmakers may be more open to a measure that would allow parents to be paid for a limited timeframe if no caregiver is available.