A bit of a rant about information accessibility

Rising Lights Project where H. attends her gardening group hosted an informational meeting about special needs trusts, social security, guardianship, etc. Not exactly a fun topic, but an important one. And since this is an area where I really needed more information, I was happy to attend. It was extremely useful and I have a much better sense of out game plan.  I'll admit that I have put off doing research other than randomly pumping friends in the same situation. 

Here's the thing, though. With R. being stable for the past six (!) months, we have some bandwidth. Sure, I could have made some phone calls during the past seven years, but honestly, once we had a short stretch of calm where we could think about such things, the calm would end and so would our window. It's been six and a half years of off and on crises if I'm brutally honest. Surviving the moment always seemed like a much better choice than planning for years down the road. The trouble is the road gets shorter and shorter even if you're just surviving. 

I've been brooding about this ever since. It shouldn't be this way. The parents shouldn't have to work so hard to find information or have to pay someone to obtain it. There are plenty of people who work with and support special needs families, why are we not training them in the basics and make it commonplace to regularly share this information? 

For instance, any adoption social worker should be sharing how and when to do these things when they help place a child with special needs in a family. That would have been super helpful to be given a general timeline of what to do and when. I wish I could go back to when we first came home and be told to get on the PUNS list now even if you think it's something you don't want or need because eventually you will. I had plenty of people mention it to me, but without a real understanding of the financial aid it can supply, it didn't seem to be something we needed. 

Or how about pediatricians? This seems like something that impacts health and well-being, why are they not taught the basics and share it at each annual checkup? I know that some school social workers provide this information, but do all schools? What if you don't attend public school? Is it some backhanded punishment that you aren't using the system so you don't get the information? How about hospital social workers? They see some pretty impacted families. It wouldn't be too difficult to ask if a family needs help understanding how to navigate the system. Even my DSCC care coordinator wanted to help but couldn't answer any of my questions. These are certainly people who should at least have some sort of clue about gaining guardianship, what the different implications are for each type, and how to get started. I had to call a lawyer to even find out you couldn't apply until age 18, no one else knew.

I just love chasing legal and governmental information. Not. I'd much rather spend my time actually parenting. This is not unlike how difficult it is for special needs parents to navigate the medical and insurance industries. It sometimes feels as though it is yet another full time job that already swamped parents are expected to shoulder.

Do you want to be an ally for disabled people and their families? Then don't just tell us how inspiring we are, work to change the system... getting information, accessing affordable and appropriate medical care (as opposed to a system that continues to allow doctors to ask questions such as, "Will she even notice or care her tooth is missing?"), accessibility in general, and a greater acceptance for diversity in general. We'd rather lose our inspiring label because society doesn't make our life any more difficult than anyone else's.

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