Some state legislators and others complain that we are too “fragmented” in our “asks” for redress. They ask us to “prioritize” what we want because there’s not enough money to fix everything.

So far we’ve been asking for more DSPs, Innovation Waivers, access to post-secondary education, employment, housing, doctors and dentists who get I/DD, transportation, and public awareness and acceptance.

And there’s plenty more we need, like portability of Medicaid across state lines, an end to the crazy quit of Social Security categories and restrictions, an end to unnecessary reauthorizations and reevaluations, and an end to multiple forms asking for the same information. We also need everything in plain language, parents to be fully briefed from year one, and K-12 schools fixed. Even our kids’ aging needs differ from most other people.

Birth through death.

So here’s the thing: we must start insisting on our kids being considered as a whole person. Everything, everywhere, all at once. If we appear fragmented it’s because the system is fragmented. Our kids are currently treated in bits and pieces at both the state and federal levels. It is our kids’ birthright to get complete care, from birth through death. Birth defects (pardon the term) are completely random*. Our kids aren’t in any way culpable for landing in this position. Our kids are the most vulnerable–the core of society’s ethical obligation. If you prefer, they are the Biblical equivalent to the “widows and orphans” that God commended us to protect.

I/DD is NOT just another disability, despite some commonalities and some dual diagnosis cases. Nor are all adults with I/DD the same. It’s a spectrum, and one size does not fit all.

I propose we advocate for our own state I/DD division or department. It’s not unheard of in other states. We need a champion who advocates for the whole person, who can be innovative and bring the pieces together. Who can recognize our differences from people suffering from mental illness, substance abuse, traumatic brain injury, or the brand new disability category of “long Covid” (when it disrupts a major life activity).

To help make this case it would be good to have as complete a list as possible of both the unique features of I/DD and the things that drive us nuts about the system. If you can think of more than what I’ve listed above, please email them to me!

* The exception to “random” is the preventable case of Fetal Alcohol Spectrum Disorder, which is still rampant. It’s not the kids’ fault. And many drinking moms don’t know they’re pregnant, or even anticipate being pregnant, before the fetal damage is done.