Miles, who has chronic lung disease and Cerebral Palsy, is supervised by Neil and Abby Hoffman while seated in his positioning chair. He enjoys interacting with his siblings. A standing frame would provide Miles the opportunity to be at eye-level with his family.
However, insurance will not cover a standing frame. Miles is covered by two plans that overlap: his parents’ Blue Cross Blue Shield of Kansas City policy and another administered by Aetna through the Kansas Medicaid program, known as KanCare.
Aetna may cover the $5-6,000 expense of a standing frame. Blue Cross Blue Shield must first officially deny the request in writing. Blue Cross Blue Shield will not do so. Unfortunately, this leaves Miles without the equipment he needs.
Families throughout Kansas are stuck in similar bureaucratic limbo, unable to obtain essential medical equipment. Denials can jeopardize opportunities to grow at home, in school, and into adulthood, and can lead to additional health complications.
Doctors, therapists, and advocates say denials of medical equipment are far too common. The Kansas Department of Health and Environment declined to respond to inquiries about KanCare insurance companies’ chronic delays and denials of physician-prescribed devices.
Carrie Grosdidier, an occupational therapist who works with the Hoffmans, says Miles’ lack of a standing frame could have serious repercussions. According to The Archives of Rehabilitation Research and Clinical Translation, standing has numerous benefits. Among them are improved bone density, greater bladder, and bowel control, improved digestion, decreased spasticity, and improved circulation.
Kacy and Dan Seitz have learned about the challenges of navigating the healthcare system while caring for their 12-year-old daughter, Hudsyn. At birth, she sustained a brain injury. The family from Shawnee, Kansas, had to purchase a stairlift, a bath chair, and a wheelchair.
The lengthy wait times mean Hudsyn’s parents prepare a year ahead of time. Sometimes, they use ingenuity instead of waiting for health insurance approval. For example, Hudsyn’s recliner is on a wooden platform with wheels.
Living with a disability is extremely expensive. According to the National Disability Institute, researchers estimate that households containing an adult with a disability in the U.S require, on average, 28 percent more income (or an additional $17,690 a year for a family at the median income level) to obtain the same standard of living as a comparable household without a member with a disability.
Some items a disabled person might need include accessible vehicles, enteral formula, allergy-friendly foods, shower chairs, and specialized beds. Some of these costs are covered by health insurance, but not always. Obtaining insurance approval for many of these things can be a time-consuming process. I had to submit two different appeals for my most recent power wheelchair. The process took eighteen months because of the appeals.
With astronomical medical expenses unsurprisingly, the CEO of the fundraising website GoFundMe says approximately 33% of all donations go towards paying for medical expenses.
Disabled people often have to fight for things that improve their daily lives. Insurance companies should not deny critical equipment to disabled and chronically ill people. People should not have to raise money or rely on acts of kindness to survive.
Goodman, Nanette, et al. “The Extra Costs of Living with a Disability in the U.S. — Resetting the Policy Table.” National Disability Institute, National Disability Institute, Oct. 2020, http://www.nationaldisabilityinstitute.org/wp-content/uploads/2020/10/extra-costs-living-with-disability-brief.pdf.
Horton, Samantha. “Families Say Kansas Medicaid Red Tape Cuts off Kids from the Medical Equipment They Need.” KCUR, NPR, 28 Mar. 2023, https://www.kcur.org/news/2023-03-28/families-say-kansas-medicaid-red-tape-cuts-off-kids-from-the-medical-equipment-they-need? fbclid=IwAR1WN33ogn82e-ZiDgJT7YDeKb7_NxuQS394vhhZEyn6TLbcmMXOwGr2H5M.
Murphy, Kevin P et al. “Health Parameters in Standing and Nonstanding Nonambulatory Adults With Cerebral Palsy.” Archives of rehabilitation research and clinical translation vol. 3,2 100110. 16 Feb. 2021, doi:10.1016/j.arrct.2021.100110
Martinez, Gina. “GoFundMe CEO: One-Third of Fundraisers Are for Medical Costs.” Time, Time Inc, 30 Jan. 2019, https://time.com/5516037/gofundme-medical-bills-one-third-ceo/.