We are taught in medicine early on about the idea of team-work. Teams in the hospital, in clinic, amongst our peers, but most of all the team-work it takes to take care of our patients. As I spend more time in clinic, I’m learning it is no longer enough to name and treat the diagnosis in the office but to extend our care to home, school, and the community at large. As you can imagine there is simply is not enough time in our day to cover all these areas. For healthy children this picture for a thriving medical home can be complicated; for children with special needs it can be downright overwhelming. I have been asked questions about school systems, health insurance details, housing issues, legal help and more that require significant time to understand and answer. Luckily there are organizations like About Special Kids (ASK) that are a crucial part of the team that can provide much needed guidance to parents. I was lucky on my community rotation to get to know this organization and understand the many ways they help our families.
ASK is Indiana’s Parent-to-Parent organization that is completely run and staffed by parents. All the staff I interacted with had a child with special needs themselves and a wealth of knowledge of how the “system” works. They spoke to families directly sometimes spending hours on the phone helping them cope with a new diagnosis, and sometimes hours afterwards collecting information and researching. What I thought was crucial was the frequent follow-up phone calls and check-ins to make sure things were progressing as the family wanted. Their success stories stem from parents feeling empowered now that they had knowledge and resources behind them. To have other hands in the community offering their support just as we do in the clinic is so important.
A mom of a patient with special needs said she loved ASK because it was a relief to talk to someone who “just gets it.” As I listened in on phone calls parent liaisons had with clients, I heard the relief on the other line when their months-long frustration was met with an “I was in your exact position. Here’s what you should do…” I empathize and care for my patients greatly but admit I cannot provide this exact type of reassurance. I am so glad there are team members out there who can.
