AUSTIN, Texas — Nancy Crowther worries every time her personal care attendant leaves the house.

She worries that her attendant will see the Dairy Queen banner boasting $16 an hour flapping in the wind on her drive to the grocery store and be tempted to apply.

Worries that the taco place down the street promising $17 an hour will catch her eye.

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Worries that she’ll find something better than the $11 an hour she’s paid to keep Nancy alive.

Nancy, 64, has a progressive neuromuscular disease that is slowly eating away at her muscles.

It started with her legs, which have largely been rendered useless since childhood. It’s spread to her arms, which are no longer strong enough to hold a pan or reach a light switch without assistance.

Without her attendant’s help, Nancy would have to give up her home and live in a nursing facility.

“I’m really scared about it,” Nancy said. “If I had to give up my home because I didn’t have attendant services … There’s no reason to go on.”

Nancy is one of more than 300,000 Texans who receive help with tasks such as bathing, dressing and toileting from attendants through long-term services and support programs in the state. This help allows them to continue to live and remain active in the community.

Many of these individuals receive care through one of the state’s six Medicaid waiver programs for people who have disabilities, which use state and federal funds to get people care in the community instead of in an institution. A Houston Chronicle investigation published in July found that there are nearly 200,000 Texans waiting for one of these waivers — and some have waited for nearly 20 years.

Others receive attendant services through non-Medicaid services such as the Consumer Managed Personal Attendant Services program.

But even after getting that funding, getting the actual care can be a difficult task.

Personal attendants in Texas are paid a base hourly wage of $8.11, an amount that has left the state with a crisis-level shortage of attendants — especially as the number of Texans needing them is expected to grow by nearly 95,000 by 2028, according to a report published this year by the Coalition of Texans with Disabilities.

“Finding individuals to fill these jobs, and stay in them, is tremendously challenging at the low wages Texas pays, and demand for community attendants is already outgrowing the supply,” the report states. “Crises can occur, and often do, when people can’t find the care they need for themselves or a family member.”

Nancy has been in that position too many times to count. If her weekday attendant gets sick or has an accident, she has no backup. She has to rely on her older sister to drive in from Dripping Springs to help.

She’s been without a weekend attendant since the COVID-19 shutdown in March 2020. Her sister drives in for those shifts, too.

Texas Health and Human Services Commission — which oversees intellectual and developmental disability services — acknowledged the problem in a November 2020 report, setting long-term goals such as increasing wages and collecting better data on recruitment and retention of attendants.

Community attendants in Texas and across the nation often face financial insecurity from low wages, lack of benefits such as health insurance and high levels of part-time employment,” the report states. “Addressing these and other challenges related to the community attendant workforce demands a coordinated, statewide approach.”

But disability advocates, including Nancy, have been fighting for higher pay for attendants for years. Base hourly wages have increased less than $1 since 2013.

At $8.11 an hour, Texas is way behind nationally. Across the U.S., the average pay for home and personal care aides in 2021 was $14.15 an hour, or less than $30,000 a year, according to data published in May 2021 by the U.S. Bureau of Labor Statistics.

During next year’s session, advocates plan to push for an increase to $17 an hour by fiscal year 2025.

The price tag would be in the billions. But research shows it’s a significantly cheaper option than sending someone like Nancy to a nursing home.

“Plenty of people with permanent disabilities can stay relatively healthy, but not without support,” said Dennis Borel, the coalition’s executive director. “We have the capacity to shift funding to the front end and keep people as healthy as possible.”

‘It really is a crisis’

On most days, Danny Saenz is able to get into bed at night without help. But if something goes wrong, he can find himself face down in bed, his arms trapped beneath his body for 30 or more minutes.

Danny, 62, has cerebral palsy. He is approved to have an attendant help with tasks at night — such as getting into bed from his wheelchair, toileting and showering — through the state’s Consumer Managed Personal Attendant Services program.

The program allows the state to contract with licensed agencies to provide personal assistant services to people with physical disabilities, who interview, select and train their personal assistants.

He hasn’t been able to find anyone who will work at $8 an hour. It’s been four years.

“It really is a crisis,” Danny said. “What’s it going to take for lawmakers to do something about it?”

Danny’s parents are dead. His siblings live too far away. Friends can’t help on a reliable basis.

So Danny does his best, using his arms to drag himself into bed.

It doesn’t always end well and he has the scars to prove it: A jagged line running down his back from where he tried to use momentum to get into bed and missed. A bright white slash on his tanned arm from when he got tangled up into his wheelchair.

Although it hasn’t happened in a while, Danny has gotten stuck enough times that the firefighters he has to call for help know him by name.

Danny would rather be dead than go to a nursing home. But as he gets older, and as he continues to struggle to find help, he worries that he’s inching closer to that reality.

“Who would want to live in a nursing home?” Danny said. “I want to live on my own.”

Ranking 47th in attendant pay

Disability advocates have been making marginal progress on raising the wage for attendants since at least 2007, when lawmakers tied attendant pay to the federal minimum wage, which at that time was $5.15 an hour.

During the 2013 session, they bumped it up to $7.86 an hour in 2015 — higher than the federal minimum wage of $7.25 an hour.

Two years later, in 2015, lawmakers raised it to $8.

It still wasn’t enough, advocates say.

“These workers have been woefully underpaid for decades,” the Coalition of Texans with Disabilities wrote in its 2015 legislative report. “While we did see a small increase, progress here was so minimal, we don’t count it as much of a victory.”

The coalition recommended that lawmakers raise the base wage for attendants to $13 an hour during the 2019 session.

Lawmakers raised it 11 cents.

“Every year, we highlight the urgency of this worsening situation to decision makers, yet the legislature has moved at a glacially slow pace to respond,” the coalition wrote in its 2019 legislative report. “The rises in costs of living and wages in other jobs far outpace the stagnating base wage for attendants each session.”

The American Rescue Plan Act, a federal pandemic relief initiative, allowed attendants to get bonuses, but it did not impact base pay because it was a temporary funding stream.

Texas HHSC has conducted a community attendant survey to provide the agency insight into the needs of the attendant workforce, which was open until Sept. 28.

Though experts say no state pays enough, Texas ranks 47th out of all 50 states and Washington, D.C., when it comes to average hourly wage, according to the labor bureau’s May 2021 data.

The highest paying state as of May 2021 was Washington, with an hourly average wage of $17.36 for home health and personal care aides, which include community and personal attendants, the labor bureau found. Texas’ average hourly wage was $10.88.

Advocates hope to get Texas’ base hourly wage almost that high — to $17 an hour — by fiscal year 2025.

Raising the wage to that level is estimated to cost $3.7 billion over the 2024-2025 biennium, but experts say it will pay off in the long run.

Texas HHSC found that monthly nursing facility costs in fiscal year 2019 were 227% higher than community care, according to its November 2020 Community Attendant Workforce Development Strategic Plan.

The coalition estimates that the state could save nearly $250,000 a year for every person that stays in the community and avoids an institution.

61% turnover

Nancy has had an attendant since she was 19, when she first moved out of her parents’ house and began studying social work at the University of Texas-Austin.

She relied on those attendants for help getting in and out of bed; getting dressed and brushing her hair; toileting and showering.

Hiring an attendant used to be easy. In college, her roommates and friends often filled the role.

After graduation, she sought help from community college and nursing students.

There were always people interested. And there were always backups.

But as the cost of living increased over the decades, and the pay for attendants did not, it became harder and harder to find someone.

She started offering free room and board in her Austin home to supplement their meager income.

“I had to do something to encourage, almost bribe, people to come help me,” Nancy said.

Even with that, it became increasingly difficult to find people willing to work for less than $8 an hour.

Her older sister, Karen, had to start supplementing her care.

When an attendant was sick or got into an accident, Karen would drop what she was doing and drive the 40 minutes to Austin from Dripping Springs to help.

When an attendant quit and there was no back up, Karen would drive in and set up shop in Nancy’s spare bedroom.

The longest she’s stayed was five months, while Nancy searched in vain for a replacement.

“Over the last few years, it’s been harder and harder to find a backup that can come in a pinch,” Karen said.

In its strategic plan, the state found that the turnover rate for attendants in fiscal year 2018 in some Medicaid waiver programs was about 61%.

In some programs, one out of every 10 jobs weren’t filled as of Dec. 31, 2018, the report found.

‘You need to cover your bases’

For the past four years, Nancy’s had a steady weekday attendant, Julie McConnell. McConnell, who lives in Nancy’s spare bedroom, got into attendant services after retiring from nursing almost a decade ago.

She’s worked her way up to $11 an hour, she said, but wouldn’t be able to live on that amount if she didn’t have retirement savings and free room and board.

“The wages are so low,” McConnell said. “It just blows me away. I can’t even wrap my head around it.”

Nancy is approved for nearly 50 hours of care a week.

But Nancy needs help on the weekends, too.

Her weekend attendant quit during COVID-19 and she hasn’t been able to find a replacement for two years. Karen has been filling in ever since.

Every Saturday and Sunday morning, Karen drives the 40 minutes one-way to Nancy’s house and works her hours. She drives back home each night.

“It’s part of my weekly schedule now,” said Karen, who is a 66-year-old retired graphic designer. “I volunteer at the library, with search and rescue and at music festivals, but my weekends are set aside.”

It makes it difficult to travel, Karen said, and live her retired life to the fullest.

She will continue helping Nancy on the weekend until she finds a permanent replacement, Karen said, but she worried that something might happen to her — she’s older than Nancy, after all.

“It’s difficult knowing I’m the only backup,” Karen said. “I keep telling her, ‘You need to cover your bases because I could go down.'”

30 years of fighting

Nancy has been fighting for disability rights in Texas for 30 years. Every morning before Nancy emails lawmakers and plans protests, Julie helps her get out of bed.

As Nancy’s condition has deteriorated, she’s had to start strapping herself into her wheelchair.

She can no longer brush her hair on her own — she can’t put her shoes on her feet.

Julie helps her with all that, too, all before preparing her daily breakfast of coffee, eggs or oatmeal.

A social worker by trade, Nancy led Austin’s Capital Metro in implementing accessible transportation options for people with disabilities, including bus wheelchair access design, safely securing wheelchairs, accessible bus stops and signs and driver customer service training.

She’s a staple at the Capitol building during legislative sessions, and has had Capitol police called on her more than once for refusing to leave the governor’s office.

Danny, too, makes his presence known at the Capitol. During the session, he’s there two times a week.

Both are fighting for an increase in attendant pay — a 15-year fight that, really, has gone nowhere. But it’s vital if they want to continue to live productive lives in the community.

For Nancy, the day is coming when her disease will take her voice; her heart; her brain.

She won’t give up until that happens.

“If it weren’t for (attendants), I wouldn’t be as able to advocate for those people who can’t advocate,” Nancy said. “And I wouldn’t be where I am today.”

© 2022 Houston Chronicle
Distributed by Tribune Content Agency, LLC

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