The goal of this Summit is to spark a sea change in the system serving I/DD.

I’ll start with 3 family stories:

1. Chapel Hill—Dotty Foley was perhaps THE top parent advocate in the state. Her adult son has autism, is nonverbal, and has a low IQ. He had the Innovations Waiver. A North Carolinian for 18 years, Dotty scraped together the means for her son to live in his own place in the community. For 6 years they used Supported Living Level 3 and she was the Employer of Record. Despite being enabled to pay her DSPs a much higher wage, there were unending staff gaps which she & her husband had to fill. She concluded the system would never improve enough in her lifetime to guarantee a high level of care for her son once she died. And she was tired of fighting for every single thing. So she left for Massachusetts last month.

2. Greenville—a singe mom has an adult daughter with Angelman syndrome who is nonverbal, confined to a wheelchair, and has low IQ. She has the Innovation Waiver. She’s had zero service for years, save for 3 DSPs who each quit after about a week because “the work was too hard”. The daughter can’t be left alone so mom hasn’t been to her own doctor or dentist in years. Lacking emergency respite, she was forced to bring her daughter with her as her mom died in the hospital. She’s too exhausted to even write her legislator, much less visit him. She can’t work and she’s about to lose her income as a caregiver when Appendix K expires.

3. Greensboro—somehow a mom bought a ticket to Ted Budd’s business-only fundraiser. She took along her son with Down syndrome, in his PJs, and confronted him saying “this is my son and he needs XYZ services.” Ted Budd actually picked up the phone, called some people, and suddenly her son had a Waiver (based on a loophole for the terminally ill) and got more services than they needed. That whole thing was probably illegal, and more important, that’s no way to run a system.

So what are we to do? We, parents of both children and adults, must step up, get organized, and tell our moving stories to our state representatives. We also need to work hand-in-glove with self-advocates and I/DD organizations.

Some history. We got what services we do have in part because a group of “radical” self-advocates in the late 1980s refused to be ignored by the federal government, which was ignoring its own laws intended to support people with I/DD. It was framed a civil rights issue. As such, they even got some support from the Black Panthers though few (if any) Blacks were in the self-advocate group.

We are at another inflection point in the history of I/DD. Why? Because Baby Boomers—a big bulge in the population—were the first generation to NOT put their babies in state institutions. But we Baby Boomers are now old and dying, and many of our adult kids are still in the family home. Where are they to go?

Why has this problem festered? Parents are exhausted, poorly informed, disconnected from each other, discouraged, and even scared of retribution if they object too much. There’s another reason: our kids with I/DD aren’t scary or visible. They don’t make headlines shooting up schools (mental health), dropping dead from substance abuse, begging on the streets as homeless people, or wasting away in a dreary nursing home. Those populations get funding, as they should.

And while every legislator has an elderly parent, few have a personal connection to I/DD. Moreover, look at who has the power and where they live. Senate President Phil Berger has Guilford and Rockingham counties, which collectively have about 2,000 on the wait list, But his actual district skirts the big cities to include the town of Shelby, 5 cows and a mountain. House Speaker Tim Moore has Cleveland and Rutherford counties, which have only about 200 on the wait list, but his district doesn’t contain cities of note. I’m betting neither gets many constituent visits about I/DD.

Yes, parents lash out, though too often at the wrong entity. They understandably blame who they see—DHHS, their provider, or the LME/MCO. Sure those guys screw up, but it’s the state legislature that controls those entities, as well as the purse strings on an ever-shrinking pot of state tax revenue. The federal government isn’t coming to the rescue.

This is a nonpartisan, family-values issue. Spending on our children and adults with I/DD is not a cost, it’s an investment in our communities and society writ large.

Finally, a single state legislator has little-to-no power to help a family or self-advocate, but the legislature as a whole does. That’s why we need a coordinated and continuous avalanche of personal stories going to the legislature.