After months of partisan fighting, state lawmakers in April reached a last-minute deal to send emergency funding to a state agency that serves Arizonans with developmental disabilities. Both Republicans and Democrats praised the families and advocates who pushed them to reach a compromise, among them a 13-year-old girl fighting to protect the services her brother relies on.
Hundreds of family members and advocates marched at the Arizona Capitol in February, calling on lawmakers to send $122 million to the Department of Economic Security’s Division of Developmental Disabilities, which administers the Medicaid program for tens of thousands of Arizonans.
Cost increases, enrollment growth and other factors ballooned the program’s budget, and state officials warned the division would run out of money in May if lawmakers didn’t take action.
While Republican and Democratic officials agreed they should approve that money, partisan fighting over what, if any, cost controls should be attached bogged down negotiations as the deadline neared.
Enter 13-year-old Grace Haley, whose twin brother, Caleb, receives services funded by the Division of Developmental Disabilities.
“She read a letter that said, I'm going to paraphrase, ‘stop your foolishness, let down your ego, work across the aisle, and help my family,” said Rep. Nancy Gutierrez (D-Tucson), recalling the blunt message Grace Haley delivered at a meeting with Gov. Katie Hobbs and Democratic lawmakers.
Amy Haley, Grace and Caleb’s mother, said Caleb has severe autism, suffers seizures and requires constant, vigilant care that would be nearly impossible to provide without support from the DDD program.
“Caleb Haley is this incredible little boy, and he's not a little boy at all. … Caleb is 13 and almost 6 foot tall, but cognitively, he's about 12 months old, and so he has this combination of medical complexity that can be really, really scary,” Amy Haley said.
Amy Haley said Grace has never been shy about watching out for her brother.
Caleb is non-verbal, and Grace said they share a special bond. Sometimes, she is the only one who can understand what he wants or needs.
“He's my best friend in the whole world. I feel like I can really talk to him, even if I don't hear him with my words. You can just see it in him. He's so special,” Grace Haley said.
Amy, Grace and Caleb Haley visited the state Capitol during that march in February. They also sat through committee meetings and came away disheartened by what they saw.
“At first, I thought maybe if they just knew what was actually going on and what it was like for the disability community, then they would change their perspective, and that wasn't what I was finding,” Amy Haley said, reflecting on the months of inaction at the Legislature.
But she said they were determined to keep up their grassroots lobbying effort.
“Not ever something I really wanted to do, definitely not something I thought I would be doing, but it just felt like my son needed me in a new way, and so this is what I was going to do for him,” Amy Haley said.
She tried to coordinate meetings with lawmakers in her Chandler-area district but wasn’t having much success.
And then Grace Haley took matters into her own hands after receiving a contact sheet for her local lawmakers during that visit to the Capitol. Grace chose her local representative, Rep. Julie Willoughby (R-Chandler), because she liked her photo.
“So I emailed her, and she responded, and it was amazing. And my mom was like, ‘What?’” Grace Haley said.
Her mom added, “Baffled, I was so excited.”
Willoughby met with Grace and her family, heard their story and later sponsored a bipartisan bill to solve the funding crisis — marking the first crack in the political divide on the issue in months.
“I sat down and met her and her nana and her brother, Caleb, and her mom, and I was able to see exactly what this community is about,” Willoughby said during a bill signing ceremony alongside Hobbs and Gutierrez. “I've learned that they are great at two things, one is how to love, and two is how to fight.”
Willoughby’s initial bill ran into more partisan grid lock at the Legislature. But, about two weeks later, another bipartisan effort passed the Arizona House and Senate.
Hobbs signed it the same day.
“This community showed up every day, and they stood in the breach,” Hobbs said. “Their advocacy shouldn't have been necessary, but it turned out to be essential.”
Grace says she learned a lot about the legislative process over the past few months.
“Well, I learned that we're a lot more divided than I thought that we were,” she said. “And coming here and seeing Julie Willoughby and Nancy Gutierrez sign the bill together, and just it was so amazing. It was so cool to see them act as our legislators should.”
Amy Haley said she wasn’t surprised to see her daughter stand up and challenge a room full of adults to solve an issue that had beguiled elected lawmakers and professional lobbyists for months.
“I've always known how powerful this girl is,” Amy Haley said. “She's got an incredible voice, and I think she's got a pretty exciting future ahead of her, but watching other people realize that and congratulate her on the work that she did, and bring her up there to speak, it's beautiful to see her kind of sprout these wings.”
She said it’s the best civics lesson she could imagine for her daughter, though she hopes they won’t have to come back down to the Capitol anytime soon.
