Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

Sarah was born on October 19, 1986. When she was eight weeks old she was diagnosed with a rare metabolic disorder and given two weeks to live. The error in her metabolism is in the energy-producing part of the cell that makes energy for proper muscle function. All of her muscles have been affected. She is significantly developmentally delayed, profoundly deaf, and has cerebral palsy, to mention a few of the many issues she is dealing with.

Sarah has no safety skills, needs help with all basic acts of daily living, and needs 24-hour supervision. I typically sleep less than five hours a night and have chronic shoulder and back pain from helping her. My husband and I work opposite shifts so that someone is always available for Sarah. Very few people can understand the depth of responsibility that comes with caring for her; it is a huge emotional, physical, and financial stressor for our family.

Because of our combined income, we make too much money to qualify for financial assistance. To qualify for most services, we would have to live near poverty level. This makes stress levels very high and finances very tight. I have to work, so I work 10 minutes from Sarah’s school so that I’m close in case of a problem, and my employer is very understanding of the situation. But, the bills do not go away when we can’t work because Sarah is sick and needs us at home. We have never had a family vacation because our financial situation prevents it.

Because Sarah has multiple problems and physicians, making appointments, understanding tests, and finding answers to questions is difficult. Eight years ago we started working with the U Special Kids Program at the University of Minnesota. It now does care coordination for Sarah. Barb and Nancy, the U Special Kids nurses, know everything about Sarah and they make her appointments, keep her medical profile, and also answer questions from physicians, nurses, her school, anyone. I also needed someone that I could ask any question to, and Barb and Nancy are there for me, not just for information about medical care, but also about what resources are out there for our family, from medical supplies and durable medical equipment and home modifications to developing a “recipe” for diaper ointment that works. There is so much that parents do not know and until U Special Kids no one resource was available that did for us what U Special Kids does.

Sometimes it is hard just caring about the “normal everyday stuff” like food, housing, and my other kids. Add the 24-hour care of Sarah and I’ve been on an emotional roller coaster. Barb, Nancy, and Dr. Kelly at U Special Kids are advocates who have helped me off it. As busy as Dr. Kelly is, she always manages to make time for you when you need her. Like when she drove in early to hold my hand and cried with me when Sarah’s brother Marcus died (he died of the same disease in 1999).

When I think about what our family and others like us need from the health care and social services systems in this country, first, I would say that we need them to stop making parents justify care when a child is severely disabled. To qualify for most services, we would have to live near poverty; this makes stress levels very high and finances very tight. As I said earlier, before we enrolled Sarah in USK, we did not know where to find or apply for resources. The county case managers should have the resource information and know who should apply and how, but they often don’t. Parents should not have to search for resources. And second, we need U Special Kids and other programs like it to be funded and made available to us 24 hours a day.