Over the years, Feeding Matters has witnessed many insured families spend hundreds, and sometimes thousands, of dollars out of pocket to cover non reimbursed costs related to their child’s pediatric feeding disorder. To fully and accurately capture the devastating financial burden related to pediatric feeding disorder, Feeding Matters began collecting data and testimonials from our families.

Determine the cost associated with out of pocket expenses for families. In order to further investigate the out of pocket expenses for families, Feeding Matters collaborated with FirstEval to create an Economic Impact Survey to collect data around the child and the family, including medical costs, supplies, lost income, child care, travel, education, time, parent/caregiver health, psychological impact, and demographic information related to pediatric feeding disorder. The results showed families are spending money on extra childcare, specialty foods, and travel to therapists to receive optimal care. This significant expenditure has drained many family’s bank accounts.

“We sold our home, moved to a rental house and ultimately had to file bankruptcy to be able to afford for me to work part time rather than full time and to afford my child’s weekly therapy visits. Even though I have a bachelors degree and professional career, I took a job as a nanny (making significantly less than I made previously) so that I could have the flexibility to take my child to therapy and to stay home with him when he was too sick to go to school. The pressure of trying to manage my full time job while he was sick and had so many appointments was simply too much for me.”

Obtain data that will be used to help change the system of care and coverage around pediatric feeding disorder. The costs incurred by families navigating pediatric feeding disorder are not well understood by the reimbursement community and this has prevented them from being covered by most insurance companies. The data collected from the survey will be used to inform healthcare professionals and insurance companies of the financial burden of pediatric feeding disorder and influence the system changes that need to occur in order to obtain coverage for families. Feeding Matters is anxious to lead the way in helping families get the coverage they need.

It’s more than emotional stress that parents endure when their child has pediatric feeding disorder Money and finances continue to be top stressors for families managing pediatric feeding disorder. That stress, coupled with the emotional stress that families endure can be detrimental to one’s health. Families have indicated that they have heightened anxiety, difficulties in their relationship, and depression due to the financial stress of caring for a child with pediatric feeding disorder. When a parent is feeling these emotions, it is likely that their child will feel this too.

“I am killing myself trying to work full-time to support my daughter as a single parent. My parents had to move from out of state to help, and even with them here I am exhausted from trying to coordinate supplies, therapy, and her care while maintaining full-time employment. I want to quit and give up every day, but I can’t. It is maddening.”

Feeding Matters is currently looking at the findings and determining next steps for sharing this with the community.

Update: View more information here.