Every month, state lawmakers on the General Assembly’s Health and Human Services Oversight Committee hold meetings to talk about health policy in North Carolina. Legislators sit at the front of the room to discuss their agenda, as staff members, reporters, and lobbyists listen. But in the back of the room, a mother and daughter, Mary and Katie Short, who attend every single meeting keep their eye on things too.
It’s lunchtime, and Mary and Katie Short are hungry. Mary, who has thick grey hair and a bright smile, unzips a big backpack and starts pulling out food she packed carefully the night before.
"We’re gonna get some cups, and we’re gonna have some chips, well pretzels because there’s too much fat in chips," says Mary Short.
The Shorts are sitting at a counter that divides the front of the room, where lawmakers sit, from the audience, where they are. Right now Mary wants to make sure her 34-year-old daughter, Katie, eats. Katie, who’s profoundly intellectually and developmentally disabled, is smiling and sitting quietly in her chair.
Mary asks, "do you want something to eat?" Katie says no. "Oh yes you do," says Mary, explaining that Katie says no to everything.
Coming to the General Assembly is a familiar routine for the Shorts. They’ve been making the trip from their home in Taylorsville several times a month since 1998. As Katie rocks and coos in her seat, Mary explains that Katie has a disorder called tuberose sclerosis complex:
"I very well may have this disorder, but I don’t have seizures, and most days I’m not retarded, so the rest of you are on your own but I have an excuse when I- just sayin!"
Mary is her daughter’s only caretaker and guardian- she has been divorced from Katie’s dad for years. The two moved to North Carolina from California in 1998, because Mary wanted to get a job with NASCAR. She found a group home for her daughter during the week, but when Katie came home on the weekend with unexplained bruises and behavioral problems, Mary pulled her out and became a full-time caregiver again. She gets paid by the state to do that. That’s also when Mary and Katie started visiting the legislature. Mary wanted to learn more about the state’s policies affecting the disabled, so she and her daughter started attending meetings and knocking on lawmakers’ doors.
"Just the fact that we’re here physically so there’s a face every time they meet I think is important. I understand when I’m supposed to be thankful and when I can be demanding and pushy," says Mary.
Mary also keeps up a listserv for families like hers that about two hundred people subscribe to. Although some parents can’t physically bring their disabled children with them to the legislature, Mary is lucky that Katie can stand on her own and walk with a little assistance. And they usually look like they’re having a good time. Katie is developmentally at the level of a two-year-old. She smiles at lawmakers and lobbyists she recognizes. Mary says her daughter loves shiny things and bright colors:
"When men wear really colorful ties, she always reaches out to touch them."
Mary and Katie’s advocacy are not insignificant at the legislature.
About two years ago, Mary helped persuade the Department of Health and Human Services to change a policy that capped the amount of time some qualifying caregivers could be paid at 40 hours a week. Representative Verla Insko is from Chapel Hill.
"She was instrumental in getting that changed/modified for children who have exceptional needs. Many agencies can’t provide those services. And so she was instrumental in helping get that modified to where the department can make exceptions," says Insko.
Mary Short is also currently appealing a decision made by the agency that manages her daughter’s care to cut down the number of hours she can be paid on a daily basis. Lobbyists who frequent the halls of the General Assembly respect Mary’s advocacy, including Julia Adams, who represents the ARC of North Carolina:
"I think it’s critical that parents have the ability to access legislators and build relationships with those legislators, and I think that Mary Short has done that. She has come and she has spoken with the legislators on a regular basis."
When asked why she goes to so much trouble, Mary Short reaches into her backpack and pulls out a Ziggy cartoon that she keeps in a baggie.
"Ziggy walking by a sign that says life is what you make it. And then he adds thinking to himself or it is what somebody else makes it when you’re not paying attention. And that’s what the legislature and the department are. If I sit at home, if I’m not up here being a voice not just for Katie but for all the families, then life isn’t what I make it. It’s what they make it," says Mary.
One of the issues Mary is working on now concerns a seven-year waiting list in this state for services for the disabled. Mary and many lobbyists say they want lawmakers and the governor to find ways to shorten or eliminate that wait as the state moves toward Medicaid reform. Legislators on the Health and Human Services Committee are scheduled to meet this morning. And Mary and Katie Short plan to be there— in their usual spot.