Kim, Chad and Blake Johnson
“When I first got home, I felt more like a nurse than a mom,” Kim Johnson explained, talking about her experiences in taking her son, Blake, home after he spent the first 14 months of his life in the hospital. Blake was born premature weighing 1 pound 6 ounces, was blind and had numerous surgeries for heart and lung problems.
While he was in the hospital, they received Medicaid due to Blake’s low birth weight. Once he gained enough weight, the threat of losing his Medicaid coverage was eminent. Medicaid coverage continued for awhile because of his blindness, but he lost it when he was sent home from the hospital.
Quitting her job in order to care for her son, Kim has waited for services for 3 ½ years. “I would be working if I didn’t have a disabled child,” she said. “No daycare will take a child that is so medically fragile.”
Life on a Medicaid waiting list is not easy, and the difficulties are numerous. Kim and her husband have to financially balance the deductibles on their private health insurance and the co-payments with the services Blake so greatly needs. They make daily decisions such as weighing the need for a swallow study or whether to wait another year so they can put their resources toward the cost of physical or speech therapy. Their insurance only covers 20 visits per year, per discipline.
Early intervention is essential for children born with severe physical and medical issues because there are often delays in their development. People on the waiting list frequently go without the care and services they know would greatly improve the quality of their lives.
“People need to get off the waiting lists earlier,” Kim said, “so they can get the therapies, home modifications, and equipment they need for their children sooner.”
Even with supportive family and friends, life can be very isolating while waiting for the Medicaid waiver program. Despite all of their struggles, Kim reports that “Blake has changed our entire family. We don’t take things for granted, and we look at life in a different way. He has been such a good thing for us, and we’re so lucky to have him.”