That time, the siblings talked the next morning.
“She said, ‘You did so great on the debate stage,’ ” O’Rourke, 47, recalled in an interview, the first in which he has talked in detail about his sister. “And Erin is not shy and has no filter and will tell you exactly how it is — if I screw something up, she’ll be the first to let me know. But if I do well, and make her proud, there is no greater advocate I have in my life than my sister.”
So when O’Rourke rolled out a portion of his disability proposal last week — a plan to expand health-care coverage for medical equipment inspired by meeting a woman who has struggled to find a way to pay to fix her power wheelchair — it didn’t just grow out of the numerous meetings he’s had with families, caretakers and individuals in the U.S. disability community. It was also because of Erin.
O’Rourke’s complete disability plan is expected to be rolled out by his campaign soon. It focuses on addressing what O’Rourke calls an “institutional bias that exists in federal funding and priorities right now” against those with disabilities.
O’Rourke wants to ensure that disabled individuals receive long-term home and community-based services and that the federal government provides states with additional funding for the disabled community. The proposal will also bolster existing protections supporting disabled individuals — such as funding for enforcement of the Supreme Court’s Olmstead v. L.C. decision ruling that under the Americans With Disabilities Act (ADA), disabled people have the right to live in the community with public support rather than in institutions. The ruling stated they are required to receive care in their own home or group house, if medical professionals determine that is appropriate, instead of being housed in a nursing home or institution.
O’Rourke is the first 2020 candidate to introduce a major proposal aimed at helping people with disabilities in a contest in which the issue has received scant attention, even as Democrats debate overhauling the national health-care system.
O’Rourke was the first candidate to specifically mention those with disabilities on the Democratic debate stage last week by recounting the story of meeting a woman named Gina who works four jobs and is raising a disabled daughter named Summer.
The former Texas congressman has vowed that people with disabilities will serve in leadership positions in his campaign — and in a potential O’Rourke administration — to mirror the fact that 1 in 4 American adults lives with a disability.
“We must do better for those living with disabilities in America,” O’Rourke tweeted last week. “We must fully fund our special education programs. We must expand the Voting Rights Act to make it easier to cast their ballots. For too long, we have overlooked people with disabilities. That must change.”
There are currently a handful of federal laws protecting people with disabilities, including the ADA, the Individuals With Disabilities Education Act (IDEA) and the Rehabilitation Act, which together prohibit discrimination, provide a free and appropriate education, and limit federal funding to discriminatory institutions.
Sixty-one million adults live in the United States with a disability, according to the Centers for Disease Control and Prevention, and 1 in 3 disabled adults ages 18 to 44 over the past year have experienced an unmet health-care need because of exorbitant costs associated with their condition.
Critics of the Trump administration say it has uniformly worked to roll back spending and programs for the disabled community. Rebecca Cokley, the director of the liberal Center for American Progress’s disability justice initiative, pointed to such actions as the Education Department rescinding 72 guidance documents outlining the rights of students with disabilities and the administration allowing states to implement eligibility requirements for Medicaid recipients. Trump’s desire to dismantle the Affordable Care Act has sparked a particular urgency among disability rights activists in Washington.
The disabled community has “been on the front lines of every single fight pushing back against the Trump administration,” Cokley said.
O’Rourke’s family didn’t realize it faced an 18- to 20-year wait list to receive state-supported disability services for Erin until she had graduated from high school in Texas. The former congressman says he began to understand the complex and costly maze of public programs for someone like Erin, who requires constant supervision, after his younger sister moved in with him following her graduation.
“Erin learned how to take the bus from my home to work, which was a real breakthrough and milestone — she established some level of independence and it changed her in a really positive way,” O’Rourke said. “To see her develop friendships and relationships with people at work, independent of her family, for one of the first times in her life was really powerful.”
He added: “Making sure she received the help and care she needed really made an impact on me — as does meeting so many of these families with physical and intellectual disabilities who are working so hard to make sure their family members should live life to their full potential.”
After rocketing to national fame in his 2018 challenge to Sen. Ted Cruz (R-Tex.), O’Rourke is struggling in the polls, placing seventh in the Democratic primary, according to the latest RealClearPolitics average.
But even if O’Rourke doesn’t win the 2020 nomination, he hopes Erin and the disabled community will feel they got a say in the process.
“Erin loves that I’m running for president, and she’s been involved in every campaign I’ve run — whether it’s taking the time to knock on doors with me or providing the moral support because we talk so often,” O’Rourke said. “No matter what my day was like, I’m able to talk to Erin, put things in perspective and realize how lucky I am to be her brother.”