TIP of the WEEK: Fighting the Fight

In the final week of PWS awareness month I have been thinking ahead to the possibilities that this new generation will have but am distracted by the current state of insurance claims being cast aside, accommodations for a fair education being refuted and needed in-home services being rescinded. It confounds me how we are still fighting this battle and then I realized why- because they don’t know our kids. That’s all. If they knew them they would love, admire and fight for them the way that we do. They would not give indirect answers denying their necessary accommodations to get a fair education. They would not use their antiquated laws to refuse our kids the support that they need in adulthood, and they would not reject scientifically proven medications because a simple modification to their insurance policy would just be too overwhelming for them to manage. If they knew our kids they would make the changes, find the loopholes, fight the system. But they don’t know them so they don’t bother and that is the greatest injustice I can think of; to blindly turn away.

We are not asking to give people with PWS a great advantage, simply to give them what is needed to be safe, healthy individuals with the same rights as every other citizen. That is not too much to ask and yet we are still fighting. So what do we do? We make it personal, because it is. We create teams of people who know and love our children to make the calls, insist on the meetings, reject plans that are subpar, that don’t stop even when the odds look incredibly stacked against you. It may take an army but guess what? We have one. May ends in a few days but our fight doesn’t and we have what it takes to make the changes that will allow our kids to get the services that they deserve. I’m in. Are you?

Submitted by:
Patrice Carroll
Manager PWS Services

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