Susie Angel never intended to become friends with her personal attendant. Then again, it’s hard not to grow close to the person who, for nearly a year, has helped her dress, prepared her meals, brushed her teeth and otherwise cared for her. Last April, Angel first floated the idea that Sandy White become her attendant after a chance encounter on a neighborhood dog walk. White was between jobs, and Angel, who has cerebral palsy, needed some paid help in the mornings so that she could get to work on time. White was unsure. Her background was in retail, and she’d never cared for a person with a disability. But Angel was persistent. She paid White an unexpected house call; sitting in her wheelchair in White’s front yard, she offered White the job. “I was kind of flattered to be asked,” said White, who started working for Angel that week. “It’s satisfying being able to take care of someone.” Angel, 48, keeps herself busy. She beams with pride when she talks about how much time she spends outside of the house: at the downtown office where she works as an editor and researcher, at the YMCA where she practices with her dance troupe, at the stadium where she watches the local minor league baseball team play, at the open mic nights she helps organize at a local bookstore. “I’m always out doing something,” she said. But navigating a disability often costs precious time. A menial task such as putting on a shirt could require 10 minutes of work for Angel, leaving her frustrated or sapped of energy. “It’s like I’m having a fight with my arms,” she said in a recent interview at her South Austin home.
Enter White. From the moment she opens the door to Angel’s home at 8 a.m., it’s a blur of activity. On a brisk morning in February, she seemed to be in every room at once, helping Angel into her jacket, putting on a pot of tea, making a breakfast of sausage and oatmeal, starting a load of laundry, and helping Angel get into her wheelchair and out the door. Angel only needs a little bit of White’s help — about 22 hours per week, according to the state agency overseeing Angel’s health benefits — but for White, it’s a big ask. The job is part-time in name only; White, 56, keeps her schedule flexible to adapt to Angel’s needs, staying on call in case of an emergency. There are no paid vacation days, sick days or health benefits to speak of. In return, the state pays White about $10 per hour. And that’s above average for personal attendants — the base pay in Texas is $8 per hour. Angel is on a mission this year to persuade state lawmakers that White and other personal attendants deserve a raise. Advocates for the elderly and people with disabilities have turned out to the Capitol en masse this session, saying better pay would help with the industry’s abysmally high turnover — and attract more high-quality workers, whom the state relies on to care for some of its most vulnerable residents. If there were a legislative session to ask for more money, this is a good one. Lawmakers in January learned they would have about $9 billion more in state funds to spend on public programs this year, compared with the last legislative session in 2017. Over the next two years, lawmakers have about $250 billion to budget for the needs of 30 million or so Texans, an amount worth roughly $4,000 per person each year. Though state dollars only make up about half the total budget — most of the rest comes from the federal government and local property taxes — it falls to state lawmakers to decide how to divvy it up. It’s a weighty responsibility.
The budget spans nearly 1,000 pages, dictating a wide range of requirements like the size of public school classrooms, the number of troopers patrolling state highways, the location and road quality of those highways, the number of Child Protective Services caseworkers available to check on at-risk children, the length of waiting lists for people seeking reduced-cost mental health care, and much more. Technically, the biennial spending plan is the only bill the Legislature must pass before lawmakers leave Austin at the end of May. But there’s a catch. Even before lawmakers hold their marathon committee hearings, fielding testimony from the public about which public programs deserve money, the majority of the state budget is already written, driven by mandates in state law, in the Texas Constitution and in federal requirements for matching funds. Less than one-fifth is available for “discretionary” spending on pay raises or other funding bumps, according to Texas Comptroller Glenn Hegar, who oversees the state treasury. Angel joins countless other advocates and paid lobbyists, all of whom want a piece of that sliver of state revenue that lawmakers are debating how to spend this year. In a session dominated by talk of lowering Texans’ property tax bills and changing the way public schools receive funding, Angel will have to convince lawmakers that spending as much as $1 billion to improve the lives of workers who care for people with disabilities should also be a priority. Losing out on a consistent, high-quality attendant at home, Angel fears, could jeopardize her ability to live independently. “That’s my biggest nightmare,” Angel said. “If I can’t get an attendant on a regular basis, will fight to put me in an institution.”
“It took years to find her”
With White’s help, Angel arrives at her office just after 10 a.m. She works for the Coalition of Texans with Disabilities, an advocacy organization based in a converted guitar shop northwest of the Texas Capitol. Angel gets out of her wheelchair and sits on the floor at her workstation. A blue glow from her laptop washes over her face as she types out a message, slowly and deliberately, using her nose to press buttons on the keyboard. She’s preparing to visit the Capitol, where she has a meeting on this gray February afternoon with a high-ranking lawmaker. In the past two years, Angel says, she’s gone through four attendants, and now she worries that White, who recently fell behind on rent payments and has begun looking for a second job, will not be able to continue caring for her. White’s last job, at Target, paid $12 per hour. The Pizza Hut a block from Angel’s office has a sign offering $16 per hour to deliver pizzas. “It took years to find her,” Angel said. “I’ve had many of them come, get signed up to do it, and then they never come back. … Then we start all over again and hope the next one is better.” The two make an odd couple. Angel is ebullient, with a perennial smile; she loves to crack jokes and sleep in. White is reserved, with strawberry blond hair and Canadian politeness. Yet they have become close, often meeting for coffee on the weekends and going to dance performances together. So when Angel is at the Capitol, she’s not just advocating for her attendant — she’s advocating for a friend. “If you ask Medicaid or the people who pay for attendants, you’re not supposed to have a personal relationship at all,” Angel said. That expectation never felt realistic. “I can’t make her there for me without me being there for her.” Roughly 300,000 people work as personal attendants in Texas, according to the disability coalition, and nearly 200,000 seniors and people with disabilities depend on their care. A national study found that 1 in 4 home care workers lives below the federal poverty line. Angel believes Texas can afford to change that.
“Fighting for leftovers”
Lawmakers began their biennial legislative session in January with welcome news from the comptroller: Revenues over the next two years were on track to grow 8 percent, to the tune of about $9 billion. The state’s savings account was projected to reach an unprecedented $15 billion. And a massive hole in the current budget, the result of unpaid bills from 2017, had largely been plugged by sales tax collections that had poured an extra $2.8 billion into state coffers. In short, the state had some extra cash to spend. Within weeks, lawmakers unveiled their initial ideas about how to spend most of it. The Texas Senate drew up a proposal that would give public school teachers an across-the-board $5,000 per year raise, at a cost to the state of about $4 billion. The plan also included $2 billion to essentially buy down a small portion of businesses’ and homeowners’ property tax bills, with the specifics yet to be worked out. Lawmakers typically add to the base spending plan before they vote it out of committee. The Texas House, meanwhile, would spend about $6 billion in new funding for public schools and another $3 billion on tax relief, enough to save the owner of a home with a taxable value of $250,000 roughly $100 annually in school district taxes. The priorities matched Gov. Greg Abbott’s “emergency items” for the Texas Legislature, which ranked public schools and property tax relief as this year’s most pressing issues. Lawmakers’ agenda, though, has, for the most part, overlooked health and human services. Funding for that portion of the budget would remain basically flat under the House’s and Senate’s initial proposals, which did not include a raise for attendants like White. Advocates and lobbyists with interests in the state’s health care programs complain of being neglected in this legislative session. They want lawmakers to consider ways to expand low-cost health services, given that Texas has the largest share of people without health insurance of any state in the nation. “This session it seems that the public ed, property tax debate is sucking all the air out of the room,” said Elena Marks, president of the Houston-based Episcopal Health Foundation. Time is running short for health advocates. After lawmakers unveil their base budgets, as they did in January this year, the chances of an item receiving funding disappear quickly, said Dale Craymer, president of the Texas Taxpayers and Research Association. “If you don’t get in the budget bill as introduced, at that point you’re fighting for leftovers.” The Texas Constitution requires that the state budget be “balanced,” meaning lawmakers cannot spend more money than they expect to collect in revenue. In hard times, lawmakers can make across-the-board cuts and tell their constituents that belt-tightening is a difficult necessity, said Steve Ogden, who served as the Senate’s chief budget writer from 2003 to 2011. Years of surplus, perhaps counterintuitively, present a messaging challenge for lawmakers. “Politically, it was more difficult to write a budget with a surplus than with a deficit, because there are a lot of legitimate requests out there, and everybody’s got a story to tell,” Ogden said. “If you’re in a situation that says, ‘Yeah, we can afford it, but we don’t want to give it to you,’ politically that’s difficult.”
“This is the session”
On the way to the Capitol, Angel is feeling nervous. She has an appointment with the chief of staff of state Rep. John Zerwas, a Richmond Republican and anesthesiologist who serves as the House’s chief budget writer. Angel knows this may be her best chance to persuade a powerful politician to authorize a pay raise for her attendant. She’s prayed about this February meeting. As a teenager, Angel struggled to come to grips with her disability, and she now looks to her Episcopalian faith for comfort and purpose. She believes she has a responsibility to be visible in her community, “to show others that it’s OK to be different.” “You’ve got to have faith that he’ll make it work out in the long run,” she said. Angel’s office is only half a mile from the Capitol, but she gives herself 45 minutes to get there by wheelchair. She must navigate sidewalks that abruptly end or are obstructed by various obstacles: a telephone pole, cracked pavement, an abandoned scooter. Her boss at the Coalition of Texans with Disabilities, Executive Director Dennis Borel, has joined her, along with her roommate, Juan Muñoz, who also has cerebral palsy. Angel and Borel are armed with folders containing research about community attendants’ wages, and they hope to present a fiscally conservative argument to Zerwas’ office. Paying for better care now, in their view, could save the state money in the long run by keeping people with disabilities out of nursing homes or state-supported living centers. The coalition is pitching a plan for lawmakers to raise attendants’ base pay over two years to $13 an hour, at a cost of a little more than $1 billion. “The thing is, don’t understand at all that by paying for better care now, they can save money in the future,” Angel said. This year, the Texas Health and Human Services Commission agreed that community attendants deserve a pay raise. The agency asked lawmakers to spend about $150 million in state funds to raise attendants’ base pay by about 50 cents — not as high as advocates hoped, but a raise nonetheless. Abbott, who uses a wheelchair, endorsed the recommendation. The health commission listed it as priority No. 36 on a wish list of nearly 60 items it asked lawmakers to fund, including more money for programs for victims of family violence (No. 35), substance use disorder treatment (No. 21), early childhood intervention services for children with special needs (No. 6), and new phone lines (No. 13). In total, the state’s health and human services agencies asked lawmakers for about $38 billion for 2020 and 2021, compared with about $35 billion in the previous two years. The 2020-21 budget won’t be finalized until the governor signs it this summer, after its passage from the Legislature. But in their initial proposals, lawmakers recommended spending about $34 billion. When Angel and Borel arrive at Zerwas’ basement office, his chief of staff, Nelda Hunter, welcomes them into a meeting room, walking past a plaque that reads, “Sometimes all you need is a billion dollars.” Angel has a coveted 40 minutes to talk about her experience navigating the state-funded services that shape her daily life. Hunter smiles, asks questions and takes notes. Angel tells the story of a previous attendant who left her abandoned in her bathtub after Angel’s muscles began to spasm, spooking the care worker, who ran out Angel’s front door and never returned. She talks about how lucky she is to have the ability to come and advocate for herself, made possible by a visit that morning from White, her attendant. It would give Angel greater peace of mind, she says, if White earned a higher wage. Borel chimes in. “Look, if we’re ever going to do it, this is the session to take a bite out of that apple,” he said. At the end of the meeting, Hunter compliments Angel on making a strong case for herself. As far as the lawmakers who debate the future funding of health and human services programs, she says, “You really have to see to understand.” One thing Hunter does not do is promise that Angel’s wish would make it into the budget. She does vow, though, to “talk to Dr. Zerwas about it.” After the meeting, Angel feels optimistic. “I think it went well,” she said. “I could tell she had compassion for what we were describing.”
“It’s on the state”
Later in February, the Capitol rotunda echoed with the chants of about two dozen disability rights advocates. A tour guide in the next room recounted stories of the Texas Revolution while men in suits walked briskly past the activists. Members of the activist group Adapt were staging a demonstration at the heart of the Texas Legislature. They got out of their wheelchairs and lay on olive green yoga mats, most of them unable to get back into their chairs without help. The passive protest was meant to show what life looks like for people without consistent attendant care, organizers said. “We’re not going to pick them up,” said Cathy Cranston, a personal attendant who helped organize the February rally. “It’s on the state to decide how and when to help them.” They hoped to provoke a meeting with Lt. Gov. Dan Patrick, who had not commented publicly on the issue of personal attendants’ pay. Many held signs bearing messages: “My attendant needs more money” and “Rai$e it.” Some brought photos memorializing Nelson Peet, a disability advocate who struggled to find consistent attendant care. Peet died last year at 62 after contracting pneumonia at a nursing home. A chant rang out. “What do we want?” “Fifteen dollars!” “When do we want it?” “Now!” At 10 p.m., the Capitol’s usual closing hour, a crew of state troopers and emergency medical services staff arrived to escort the activists out of the building. An Adapt spokesman said last week that the group never heard back from the lieutenant governor about a meeting. A few weeks later, at a March meeting of the House’s budget-writing committee, state Rep. Sarah Davis, R-West University Place, presented a list of recommendations for additional health and human services funding to include in the chamber’s spending plan. “We heard countless hours of testimony, both invited and from the public, about the incredible need in the health and human services programs here in the state of Texas,” she said. “I am very proud to say we were able to address a great deal of those needs.” One of the line items was for personal attendants’ pay: $34 million in state funds, or about one-fifth of what the governor and the Health and Human Services Commission had requested to give them a 50-cent pay raise. “That equates to about a 10-cent-an-hour increase, so pittance is the right word,” Borel said. Still, he said, “I have no desire to throw under the bus. They’re doing the best they can.”