Family faces grueling routine to help son with disability attend college amid caregiver shortage

Patriot-News - 8/15/2022

His family is paying for college room and board. But Elliott Johnson, who has muscular dystrophy and uses a wheelchair, will commute from home more than an hour away.

It’s even more complicated than it might sound.

Every day beginning Aug. 19, his father, Paul Johnson, will drive him to marching band camp and, after about a week, to classes at Lebanon Valley College. His father will find a place to work remotely. At day’s end, they’ll drive back to Downingtown.

“We’re just trying to help fulfill his dreams. We’re willing to, as we’ve always done, make sacrifices,” says Joanna Johnson, Elliot’s mother, her voice cracking.

She acknowledges the grind is “unsustainable.” They can only hope it’s temporary — and they’ll soon find the help Elliott needs to live at school.

He’s among the countless people with disabilities whose ability to live a full life is jeopardized by a profound shortage of personal care aides.

Elliott needs help with things including dressing and using the bathroom. It will take several aides so one is present at the various points of the day and night when he needs help.

They’ve contacted more than two dozen agencies that supply home health and direct care aides. Elliott has made Facebook appeals. They put notices on bulletin boards at Lebanon Valley, hoping to find students interested in part-time work as an aide.

As of Friday, they were still unable to line up the needed coverage, Joanna Johnson said.

The shortage is severe and widespread, impacting people with disabilities of all ages, backgrounds and circumstances.

Some are rarely getting outside due to lack of help, said Pam Auer, the director of advocacy and community engagement for the Center for Independent Living of Central Pennsylvania. Some are being forced into nursing homes because they can’t find the caregivers needed to live at home.

Auer knows a person whose bowel-related condition required a home caregiver. Because of the shortage, the person underwent surgery to get a colostomy bag, not the preferred option.

She knows of an executive with a disability who is having trouble keeping up with work responsibilities because of the shortage.

It’s hard to know how many young men and women are being cut off from campus living by the shortage.

Noah Spaulding of Mercer County was kept at home for a year by the shortage. The 23-year-old has cerebral palsy and relies on an aide. He was supposed to begin living at Messiah University last fall. But caregiver arrangements fell through at the last minute.

Just last week and after months of effort, they finally lined up a pair of aides who are related and will trade 12-hour shifts while living with Spaulding in a two-bedroom apartment at Messiah.

“I could have bawled,” his mother, Shelly Kaulen, said last week, describing her reaction.

Joanna Johnson communicates with families of people with muscular dystrophy around the country.

“They’re all saying the same thing — ‘No aides; can’t hire anybody,” she says.

Advocates say the shortage has been building for years, but has become a crisis since the start of the COVID-19 pandemic. Much is the result of low wages: the average pay in Pennsylvania for people who help with non-medical things such as dressing and bathing is $13.40 an hour. With rising wages in retail and many other industries, people are fleeing direct care for jobs in other fields, advocates say.

The direct care required by most Pennsylvanians with disabilities is covered by Medicaid, funded by state and federal taxes. Joanna Johnson argues the difficulty in hiring aides proves the system is broken.

“If this is a service that Medicaid pays for, then the service is useless if you’re not paying enough to make this an enticing job. These aides could get more money working at Walmart,” she says.

The Pennsylvania Department of Human Services, which manages the program, says it’s been trying to address the problem but much more must be done.

The department, for example, spent $38.5 million from the federal American Rescue Plan to help direct care providers attract and retain workers, according to spokeswoman Ali Fogarty. The recently-passed new state budget includes another $60 million from the rescue plan that can go toward recruitment and retention.

“We know, though, that this is only a first step, and future investments are needed to ensure this essential workforce remains a sustainable and attractive field for people seeking to work in a caring profession,” she says.

The Johnsons’ situation is even more difficult because Elliott’s younger brother has the same severe disease, called Duchenne muscular dystrophy.

Joanna Johnson is a high school Spanish teacher and Paul Johnson is a software analyst. They’re thankful their jobs give the flexibility to provide so much help for their sons.

For now, Paul Johnson expects he and Elliott will spend some nights in Elliott’s campus room to ease the commuting strain. His mother will occasionally do the same.

One of the barriers is that Elliott needs a nurse overnight. His mother says Medicaid requires this because he uses a BiPAP to help with breathing. However, she considers the requirement “ridiculous,” saying the machine has never caused a problem overnight.

With nurses in high demand for well-paying jobs throughout health care, finding one willing to work for what Medicaid pays amounts to seeking a “unicorn,” she says.

Because of that barrier, they have even thought about Elliott discontinuing the BiPAP while at school. True, it benefits his health. But if it prevents him from attending college, it will hurt his ultimate quality of life, she says.

When hearing about Elliott’s situation, Joanna Johnson says, people often point out that public schools are required to provide aides for students with disabilities, and assume it’s the same for colleges.

It’s not. While colleges are required to make many accommodations for people with disabilities, it’s up to students to provide their own aide.

That fact threatens to diminish many lives, she says.

“You hear sadder and sadder stories about kids that, when they turn 18, all they have to look forward to is living with their mom and dad for the rest of their life and a crappy part-time job,” she says. “It’s wrong. The system is failing here and something needs to change.”

Elliott began studying piano in second grade. He participated in marching band for four years during high school, playing a synthesizer while in his wheelchair.

He plans to major in music production at Lebanon Valley, which is known for music-related programs. He hopes for a career in music production and looks forward to hands-on experience with soundboards and recording equipment at Lebanon Valley — things a remote education would lack.

He also knows not living on campus will deny him the opportunity to network with other students and figure out how to overcome obstacles that would otherwise thwart his career ambitions and independence.

“Not being able to live on campus or having to commute is going to take away a lot of the independence learning curve,” he says.