Colette’s 5-year-old daughter, “Rebecca,” was born prematurely at 24 weeks, and has multiple diagnoses, including chronic lung disease and chronic lung failure. Rebecca is dependent on oxygen 24 hours a day, and because of her lung disease, has special feeding requirements, including that she be seated upright or at a particular angle in order to prevent acid reflux, which would have the likely complication of pneumonia. To meet Rebecca’s medical needs, she required a special feeding chair, one that would keep her at the right angle and also avoid the risk of bedsores, since the chair would also be used for other activities.
Colette, who has a professional background in disability advocacy, applied for the appropriate chair through the rehabilitation equipment company designated by Medicaid, and was denied under the rationale that the chair did not qualify as Durable Medical Equipment. Knowing Medicaid’s emphasis on medical necessity, Colette prepared and submitted letters from her daughter’s occupational therapist, pediatrician, and physical therapist, all emphasizing that the feeding chair was medically necessary for Rebecca’s health and development. When the request was still denied, Colette reached out to Family Navigator Sam Murillo at Family Voices Colorado.
Step by step support
Because Colette had previous professional experience pursuing a Medicaid appeal, she knew what steps to take, and she knew it would be a lengthy and tedious process. But what she had not anticipated was how emotionally draining the process would be as a parent: where her professional experience had allowed some degree of objectivity, she found that as a parent, she was deeply frustrated by knowing how necessary the feeding chair was for her daughter, and by the need to defend the request to an institution that claimed to have a commitment to meeting her daughter’s medical needs.
In describing how Family Voices Colorado helped Colette and her family navigate this intensely difficult and overwhelming process, Colette shared, “Sam was wonderful. He walked us through every step, and was very encouraging and informative.” Recognizing the potential for information overload, Sam broke it down into manageable pieces and met the family where they were. Before submitting the appeal paperwork and documentation, he brought in his supervisor to ensure that nothing had been overlooked. When Medicaid called Colette a week before the scheduled court hearing, wanting to settle the matter directly with her by phone, Sam was available as a third party on the line to serve as a witness and help ensure accountability for what was promised. Just days before the court date, the feeding chair was approved.
Finding peace of mind
Colette adds, “Even having a background in the field, it was still hard for me to navigate the appeal process. For parents without that experience, I can’t even imagine how difficult it is. It was a wonderful blessing to our family to have Sam.
“We have had the chair for over a year now, and I don’t know what we would do without it… Families of children with special health care needs understand – where others might not – what a big deal something like a feeding chair is for a medically fragile child. Knowing that it keeps her out of a hospital stay for pneumonia, that she is able to eat without food going into her lungs, that gives me tremendous peace of mind, just knowing that she is safe.”
How Family Voices helps families and children thrive
Families of children with special health care needs face tremendous challenges in making sure their children get the therapies, equipment, and specialists they need to thrive. Family Voices Colorado believes that every child should have access to high quality, coordinated, comprehensive, family-centered health care, regardless of diagnosis or family income. Every day we help parents find peace of mind by walking them through the steps they can take and resources they can use to help their children enjoy healthy and happy lives.
If you believe in the work we do at Family Voices Colorado, please make a donation at GivingFirst.org/FamilyVoicesCO. Colorado Gives Day, December 4, 2012, is an especially valuable time to make a donation, because the FirstBank Incentive Fund increases the value of every dollar contributed on that day. You can schedule your donation in advance for Colorado Gives Day, or set up a recurring gift to provide ongoing support. Your generosity helps us make a difference in the lives of families like Colette’s. Together, we can make Colorado a better place for children with special health care needs.
Family Voices Colorado believes that parents of children with special health care needs should not be alone when they face the scary and confusing task of securing care for their children. Every day we give parents the information and strength they need to navigate complex health care systems in order to get things like wheelchairs, oxygen, or surgery for their children. With our help, parents are able to be the heroes their children are counting on.