Sunday, March 24, 2013

Ahead of the curve

Maggie, like many of her disabled peers, is ahead of the curve in so many ways.  She is the product of advanced medicine, alive and thriving in a world that doesn't have an infrastructure in place to deal with her needs.  She is a survivor and lives in a world that is not set up for her.

 This is not limited to disabled children, either. Kids with various health care needs are surviving longer. They may need assistance but there is nothing in place because they are the first generation to survive. There is not sufficient infrastructure for any members of society who depend upon the net of social services, but for these first generation survivors, it is really up to the families to get things set up. And families are tired because they are already completely overtaxed.

I do believe that the state and federal government WANT to help, but it chokes on its own bureaucracy. Things are pieced together from this program and that program. If you shove a round peg into a square hole, there will always be gaps.  Change happens, but on a glacial timetable. (Wait, even the glacial timetable is faster now that the polar ice caps are melting so quickly.) The piecemeal approach and the delays in addressing the reality of the populations these programs serve have drastic effects on many many lives.

On Sunday I had the pleasure of sharing the story of Maggie and how we make it all work. I went to Jack's Camp a weekend camp for families who have a child with a brain tumor, or deal with the after effects of the brain tumor, even if those are none. Check out Jack's Camp, it's one of two family camps in California sponsored by We-Can, a non profit organization  was founded by a couple of MOMS to address a need that was not being met for survivors of brain tumors.  This is all funded by the Taylor Family Foundation.

The families at camp can socialize and exchange information with other families who "get it".  I participated in a large group discussion at the Camp and a lot of the discussion involved the ways the system doesn't address the kids who have brain damage and lingering effects of surviving a brain tumor. Maggie has never had a brain tumor, but as I told them, we were simply in different cars on the same road. It was the same story I hear with parents of kids with disabilities from any number of causes.

One mom pointed out she was "lucky" that her daughter was diagnosed with cerebral palsy because that opened doors to programs that her daughter would not have been able to access with only a brain tumor.

Reread that last sentence. Does that make sense to you? Of course not. If there is a child in need of services, and the services are available -- which they ARE -- why on earth would one cause be covered and another not.

Before anyone out there pounds their fist and screeches about too much government, I am not saying that we necessarily need more services, but they must be available to the children who need them. And under the antiquated service delivery system in place they are not getting there. The system doesn't recognize the Maggie's of the world or the disabled survivors of childhood brain tumors because they simply weren't part of the world when the system was set up. But they are here and part of every community.

We Can, and the Taylor Family Foundation are doing great work, but they cannot do it all. With an efficient system delivery service at the government level, organizations like these could get so much more done.

It is time to streamline and upgrade. Governmental agencies need to stop protecting what they conceive to be their territory and make sure the services get to the people who need them.  I am certain that services could be delivered in a more efficient and cost effective way and help more people.  And isn't that why they are in place.

Just don't make the families do it all. We have been pioneering for years and we are really really tired of the hardscrabble life on the Prairie.


  1. Thank you, Sally. This is such a great summary of so many issues. Above all, the feeling of being defeated by being overtaxed resonates with me. All the letters I wish I could write, fundraising events to support and attend, etc. ... But instead I just head off to bed because sleep comes first.

  2. This is wonderful and so perfectly captures life for those of us in this world. I hope that those in positions of power will see it. Have you thought to send it out?

  3. Hi Sally and Maggie,
    My name is Brandi, and I was the mom at Jack's Camp that talked about my daughter's "luck" of being diagnosed with CP. We are battling to secure our insurance, and are so grateful that you were able to share your story with us. I will keep following Maggie's story to watch you go to bat for her! We write too: Thank you!


Hi Maggie loves your comments. It may take a while for the comment to post, but you will see it eventually.