About a year ago I was asked to talk to some primary care physicians about what it’s like to raise a child with complex health care needs. I thought long and hard about the right words, but eventually pulled out a bunch of colored markers, sat down at my dining room table, and drew this diagram which I shared with them:
The crazy diagram is pretty self-explanatory, but just in case, here’s a little more info. In the center, the “G” is our son. It’s the first initial of his name. Around him, “our family” represents me, my husband and my daughter. Naturally, he’s not always the center of the universe, but for the purpose of the talk I was giving, he was.
Around all four of us radiate areas of need. From each of those areas radiate pieces of support (in the “bubbles”) and barriers (in the badly drawn doors).
- Health: Any medical provider or service typically grouped in the medical silo; anything paid for by our primary or secondary insurance; medical equipment; pharmacies and medication–it’s all grouped here.
- School: This is any service that impacts learning or is provided by our school. Physical therapy, speech therapy, and occupational therapy could be considered health supports, but since they’re provided at school, they’re included here. The bus driver? Believe me, when I’m a half-hour late for work because the bus is late, the bus driver is at that moment as important as a surgeon.
- Developmental/assessments: These are the services, paid for by insurance, that support our request for adequate educational intervention. Besides there, these silos don’t talk much to each other.
- Info/advocacy & leadership: These are the folks who tell me what I don’t know, teach me what I need to learn, raise my consciousness, help me lobby for system change, or who lobby with me.
- Recreation & community: When it comes to free time, my son needs help making and creating friendships, finding activities, and having fun.
- Legal & financial: This is kind of funny section. It might give you the impression that I have actual assets. Not quite. But the day I do, I know who to call.
- Support: These are the resources that directly support me, my husband and my daughter when it comes to supporting my son.
The night I sketched out our complex web for the first time, I felt accomplished. I could see all the connections that I was managing. No wonder we had so many piles of unfolded laundry! I also felt called to action by how segmented and complicated the system was. It strengthened my commitment to be an agent for change–and that very night I blogged about it, a blog piece that I believe led to a job offer shortly thereafter.
And I was saddened by how small the area representing recreation was compared to health and school. I vowed to I’d devote some time to fixing that. (It was the reason I pursued the inclusive sports and after-school programs I wrote about this spring.) Every time I showed it to another family, they immediately got it, too, and often decided to make their own.
When I presented this to the group of doctors, they got it. Within a day I heard from two of them who asked if they could share it with colleagues. Something about this spider web of resources communicated a complexity that they were unable to express.
Next I shared it with our own doctors: our pediatrician, some specialists, even a medical student who started following our son’s case. I can’t say for sure, but it felt as if they treated me with a bit more respect when they could see how many balls I was juggling. One doctor helped me prioritize upcoming appointments once she saw what we were dealing with. In one case, one said that they felt humbled to realize that all this time they considered themselves so central to my son’s care, yet there were so many other people in his life who were doing just as much.
After that, the care map took on a life of its own, creating ripples that were unplanned but very welcome. It’s become an effective tool to share with other doctors, providers, policy makers, advocates and quality improvement specialists.
But mostly I want to put it out into the blogosphere in the hopes of hearing from families:
- Have you seen anything like this?
- Do you think you’d ever consider making one?
- Assuming that you would tailor it to suit you, would it be hard or easy?
- Do you think it would help? How?
- If you’re a provider, family member or friend of someone with special needs, what might their Care Map teach you?
Please let me know. How do you tell your story when you don’t have 1000 words?