OPINION-- Willamette Valley Community Health (WVCH) was looking for a better way to care for children with very complex health needs. Using special legislative funding intended for Coordinated Care
Organizations (CCO) to launch innovative pilot programs, WVCH hired two new Family Support Coordinators in summer 2014. The idea was simple but groundbreaking: they would work closely with families of children with special health needs to support them with whatever they need to better manage their health.
The Family Support Coordinators worked with primary care providers from five different clinics in Salem to identify their most complex patients. Then, the providers called the families to invite them to participate. The Family Support Coordinators worked hand-in-hand with the children’s patient-centered primary care home team, coordinating with the primary care provider and the array of specialists that complex children often see. By getting to know the families in-depth they quickly recognized their strengths and identified their barriers to better health.
Julie is one of the first children that participated in the program. She has a form of muscular dystrophy that causes weak muscles and limited movement. Heather Diaz, M.D., Julie's doctor at Lancaster Family Health Center, thought she might benefit from working with a Family Support Coordinator. Julie has a highly specialized wheelchair that is great for going to school and on family outings, but when she was at home the chair sat outside in a shed.
“Julie’s condition is very serious, and we need to do everything we can to optimize her quality of life. The more we can have her be mobile on her own, the more independent and strong she’ll be, which will help her health,” said Dr. Diaz.
Julie's home lacked a ramp, so she couldn't take the wheelchair inside and her family was forced to carry her around. She was frustrated about not being able to use her wheelchair at home, and was resisting eating and taking her medications. She was losing weight, and at 24 lbs., was already well below average for a 5 year old. That put her health at risk.
The Family Support Coordinators took Julie’s story back to the WVCH team and they determined that for Julie's health and safety they would install a wheelchair ramp at her home using the CCO’s “flexible funding.”
Under Oregon’s Medicaid waiver, CCOs can use “flexible funding” to pay for items that will clearly help support a person’s health but are not typically covered by insurance plans.
The result? Julie was so pleased about the ramp that she gained more than 2 lbs. before installation was even completed. She can now get around on her own at home and play with her little brother – and escape to her own space when needed.
“There are so many things parents want to do for their children and they can’t. Sometimes Julie can’t have what she needs because I can’t get it for her. Your program is going to change lives,” said Julie’s mother, Veronica.
The wheelchair ramp allows Julie and her family to get the most out of her costly motorized wheelchair, and if it helps Julie stay healthy, could avoid future health care expenses.
Just one year later the Family Support Coordinators are working with 35 children and their families, providing everything from transportation to medical appointments to delivering food boxes and coordinating care across education, social services, and medical systems. They aren’t tied to a desk; they meet with families at their home or wherever is convenient for them, and frequently attend doctor’s appointments and meetings with schools or social service agencies.
The Family Support Coordinators have also used flexible funding to obtain protective helmets, specialized cribs and beds, and in one case a high-powered blender for a young boy with a gastrostomy tube who had never been able to eat anything but formula. The blender arrived just in time for the boy to enjoy his first ever Thanksgiving dinner with his family. It also provides better nutrition, keeping him healthier down the road.
Right now WVCH is conducting an evaluation of the pilot program to help understand its effectiveness, but it seems clear that this innovative approach to coordinating care for some of Salem’s most complex children is just what the doctor ordered.
E. Dawn Creach, MS, is the program manager of medical home delivery and innovation for the Children’s Health Alliance and Children’s Health Foundation
Alethea Duncan is the family support coordinator for Willamette Valley Community Health
