Caregiver Shortage Threatens College Dream Of Student With Cerebral Palsy
GREENVILLE, Pa. — Noah Spaulding endured painful operations and grueling therapy beginning at age 5 so he could stand.
He stuck with wrestling even after some opponents refused to wrestle him.
He ignored advice from high school counselors who steered him toward vocational training rather than college.
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After years spent overcoming obstacles, Spaulding never expected his dreams would threaten to collapse under the weight of this: the shortage of personal care aides.
The 23-year-old earned a 3.71 college GPA this past spring while studying remotely in the basement of his family’s home in rural northwestern Pennsylvania.
But Spaulding, who has cerebral palsy and has always relied on round-the-clock help, burns to live on campus. For one, he longs to be around lots of people his own age.
For another, he plans to ultimately live wherever opportunity points. As he forcefully explains, people with disabilities and ambitions like his need to physically attend college. Otherwise, they have little chance to build the friendships, networks and resourcefulness needed to function and thrive in the world.
“I believe the most important thing is forming relationships with people. Because relationships, especially for a person like me, make my world a lot better,” he says.
But a historic shortage of aides for people with disabilities threatens to trap him at home.
Spaulding was supposed to move into an apartment at Messiah University in Cumberland County last fall. But arrangements for live-in support fell through, forcing him to study remotely.
A year later, the shortage has only worsened.
He and his mother, Shelly Kaulen, are determined to overcome all obstacles to living on campus. “There is no plan B,” she says.
Spaulding hopes to become a minister and someday lead a congregation. He believes it’s God’s plan for him to attend Messiah, a Christian university. While he admits to getting “a little nervous” as the Aug. 23 start of fall classes rushes toward him, he holds onto faith things will fall in place.
His mother, who shares his faith, has always assured him little is beyond his reach. But in recent dark moments Kaulen has wondered: Did I fill him with false hope? Did I set him up for heartbreak?
A medical journey
“My legs used to be bent up to my nose,” Spaulding says. “I couldn’t stand up straight if you paid me.”
He has spastic cerebral palsy. The condition involves damage to the brain that interferes with messages sent to the muscles, making it difficult to control and move the limbs. It often results in differences in growth rates and development of bones, muscles and tendons, causing deformities that interfere with standing and walking.
Spaulding has undergone many surgeries to help overcome such problems. At 5 he had operations on his back and feet. At 12 he underwent a barrage of surgeries that left his legs fully encased in casts for six months. He spent a long time hospitalized for rehabilitation in Pittsburgh.
“For seven weeks I hammered it out and it was a lot. It was grueling. I cried, screamed, etc.,” he says.
Later, his knee and foot turned inward. Recognizing the threat to gains from previous surgeries, he underwent more.
“Even though it may sound like a lot and it took a lot out of me, I am forever grateful,” he says. “When I get married, I’m going to be able to stand rather than sit.”
An unprecedented shortage
The caregiver shortage is profound and heartbreaking, with the full impact gradually coming to light. People are being shut indoors for lack of an aide to help them get outside. They are having to move to nursing homes because of lack of help needed to live at home.
“These are scary times,” says Pam Auer, the director of advocacy and community engagement for the Center for Independent Living of South Central Pa.
The shortage began before the COVID-19 pandemic and accelerated due to forces causing labor shortages in so many fields. The average hourly pay of $13.40 in Pennsylvania is driving people to other occupations.
Auer, a college graduate who has spina bifida, says she has no doubt the shortage is preventing an untold number of people with disabilities from working or attending school.
In the case of students who want to live at school, Auer stresses their parents need to be certain their child will have dependable care — knowing someone is there to roll them over at night to prevent bed sores or to help them begin their day on schedule or to take a shower, for example.
“They want assurances for their kids and we can’t always give them assurances,” she says.
Spaulding knows campus life.
He began college at Edinboro University, about 50-minutes from his home. Edinboro was one of only four colleges in the United States that provided personal care attendants for students with disabilities. About three dozen students with disabilities lived on two dorm floors.
But the decades-old program ended in 2019, largely because of changes related to government funding for personal care attendants.
Spaulding, using the state programs available to people with disabilities, hired his own aides and remained on campus.
Then the COVID-19 pandemic sent everyone home to study remotely.
Meanwhile, Edinboro was part of a cost-saving consolidation of four state universities. Various majors were concentrated at one school. Spaulding, majoring in history, found it harder to get the courses he wanted.
He had long expected his desire to become a minister would eventually take him to a Christian school such as Messiah, so he transferred. He’s now a junior.
Determined to climb
Taking slow, careful steps and relying heavily on upper body strength, Spaulding climbs the basement steps in his family’s three-bedroom, raised ranch house in Mercer County.
“One small step for man, one giant step for mankind,” he jokes upon reaching the first floor.
When Spaulding was in elementary school, therapists taught him to climb stairs by sitting backwards on the bottom step, raising himself to the next one and so on. Or, as he put it, “going up stairs on my butt.”
One day he got off the school bus and announced he would not climb stairs on his butt.
His mother cringed but didn’t interfere. Noah crawled at first but after a few years could climb steps upright.
Kaulen is a rehabilitation nurse and once had ambitious career plans involving well-paid management positions.
But during her son’s early years, she realized he needed more attention than hospital nursing would allow.
“I picked Noah. He’s my gift,” she says.
Now remarried, Kaulen works for her family’s municipal debt collection business. Spaulding’s stepfather, Eric Lean, works in construction.
When Spaulding was small and asked to wrestle, Kaulen said OK. Some kids refused to wrestle him. But Spaulding figured out how to hold an abdominal crunch to avoid getting immediately toppled and pinned. Kaulen still remembers the name and team of the boy who deliberately extended a match, giving him more time to wrestle, and drawing a warm reaction from spectators.
When he expressed interest in baseball, she bought him umpire gear so he could officiate school kickball games and eventually church league softball.
An apartment awaits
Students with various disabilities attend Messiah, including some who use wheelchairs. But in 11 years, Amy Slody has seen only one student whose need for assistance is similar to Spaulding’s.
That student couldn’t speak, typing papers by foot and conversing by spelling out words on a foot board, says Slody, who directs Messiah’s academic success center. The student graduated. Slody sees no reason why Spaulding can’t do the same.
“Noah has already demonstrated he can perform well in Messiah classes,” she says.
Messiah offers many accommodations, including specialized technology for typed assignments and exam taking, an office of academic accessibility which works with faculty to solve problems, and making sure wheelchair routes get shoveled first.
But as with virtually every college, students who need caregivers must provide their own.
“As long as Noah is able to obtain a personal care assistant, I feel confident he will be able to fully participate in our programming,” Slody says.
A campus apartment with a second bedroom for a live-in caregiver has been waiting for a year. Spaulding and his parents visited recently, taking measurements, noting what equipment they’ll need to bring from home and envisioning where they’ll put his big computer desk.
But the personal care part remains uncertain. They continue to consult with multiple home care agencies and the state office of vocational rehabilitation. They push themselves to think outside the box and hope others will do the same.
Spaulding can do much for himself and is determined to do more. He can get to and from class on his own. He can ask for help getting his food in the dining room. But he needs help with things like dressing and going to the bathroom. The simple fact that it’s hard for anyone to know exactly when they’ll need to use the bathroom illustrates the logistical complexity. And there’s the question of what happens if his aide gets sick or is otherwise unavailable, with his family five hours away.
During the recent visit, Kaulen looked approvingly at features such as the opening under the kitchenette sink that allows a wheelchair to get close and the seat in the shower. She’s developed a keen eye for such details and learned to take nothing for granted.
“Things can be ‘accessible’ but it doesn’t mean they are accessible,” she said.
She squeezed her fists together as her eyes turned wet.
“I want him here so bad,” she said.
Campus living is essential
Shona Eakin says she could hire 500 personal care attendants today, if only she could find them. Eakin is CEO of Voices for Independence, a nonprofit home health care agency that provides direct care workers for people with disabilities in 27 western Pennsylvania counties.
Eakin, who has cerebral palsy and went to college, doesn’t know Spaulding but understands his desire to live at school.
“One of the best benefits of on-campus living is you learn how to live your life. You learn how to problem solve. You learn how to face different challenges and overcome them in a way that you don’t when you’re sitting in your house,” she says.
She supports Spaulding’s determination to figure out how to manage with less support than he’s used to.
“When you have a disability you learn to watch people and you learn to look in a crowd and identify the people that you think you can ask for help and avoid the people that you feel you can’t ask help from,” she says. “That’s a skill you develop over time. That’s one of the reasons it’s important he goes on campus.”
Spaulding and his family have faith new and perhaps novel avenues of support will appear once he gets situated at Messiah and has a chance to meet other students and become part of the community. But he needs a baseline level of help to get started.
“We’re getting real close,” Spaulding said after the recent two-day visit.
“I think things are kind of happening,” his mother said.
Hope and worry
“Being different is my specialty,” Spaulding says.
He regularly applies Bible verses to situations at hand. He possesses voluminous knowledge of major league baseball umpires and their controversial calls, which he tends to find hugely amusing. He offers deep analysis of lyrics and YouTube videos of artists ranging from Johnny Paycheck to Dierks Bentley to Reggie Watts.
He carries on a constant banter with his mother, which sometimes pushes her buttons, and which he then punctuates with “I love you mom.”
On a recent evening, she straps him into his powered wheelchair in their driveway. “Rock and roll dude,” she says as they head for the long, straight two-lane in front of their home.
“Hey guys, if you want a free amusement park ride, hop on the back of my wheelchair,” Spaulding calls out to a PennLive reporter and photographer.
Kaulen continually scans for vehicles as they hug the road shoulder for several blocks, then cross into a nearby neighborhood and eventually onto a path through some woods.
It’s a hot, steamy evening, and Spaulding pilots his chair around soggy spots while chatting about things including his desire for his children to play sports.
They arrive at a softball field and a church league game involving men and women from their church, the First Church of God. Spaulding, who sometimes officiates, parks near first base. People on both teams drift over to chat and joke.
Spaulding’s regular aide is off this evening, attending a softball game of one of her own two daughters. Kaulen chose to walk with him to the game so she wouldn’t have to lift his non-powered wheelchair into the back of her pickup truck.
They end up encountering more puddles than expected. This results in a small worry for Kaulen: The heavy, powered wheelchair is about five years old. Breakdowns have become frequent enough that she wonders why the insurance company doesn’t just provide a new one rather than pay for repairs. She worries about the battery getting splashed with water, which could leave him stranded.
It’s the kind of thing that makes her fear being five hours away with uncertainty over who will be there to help her son.
It’s why she recently said, “I’m trying not to be sick to my stomach.”
The next morning, their pastor, Rob Robertson, makes one of his regular visits.
Spaulding has an enviable basement space outfitted with a convertible bed, big TV, drum set, desk, refrigerator and bathroom.
But it lacks natural light and Robertson asks if Spaulding has been following his advice to spend time in the sunlight, even if it’s just parking in the driveway. He notes the importance of sunlight for mood and avoiding depression.
He urges Spaulding to invite some of the young men from church to come over and hang out.
During the visit, they pray and discuss Spaulding’s “quest” to attend Messiah, and the impact his experiences can have on others, especially if he enters the ministry.
At one point, Spaulding explains his understanding, based on high school experiences, that some people will welcome his friendship and some won’t. He mentions learning to distinguish between friendship and romantic interest. He discusses his intention of quickly making friends at Messiah. “I’m going to put up a booth and a sign that says ‘free hugs’,” he jokes.
Still, Roberson takes the occasion to remind him always to consider how others will interpret things.
Time to get out and grow
Spaulding figures it’s high time to face the challenge of mastering more things that previously required help.
“I would like to get married and have children and do all those things and you can’t really have a romantic relationship with an aide pulling up your britches,” he says.
Spaulding and his mother realize he has lost “momentum” since returning from Edinboro, accepting help for little things he used to manage on his own. She knows she must let him go and rely on faith.
“He’s not going to grow here,” she says. “I don’t know what it will look like, but I have to trust it will be OK.”
Spaulding says he long ago learned to tune out people who doubt him. At the same time, doubters still motivate him.
“What matters is whether I have the spirit and the courage to do it anyway,” he says.
He also thinks about people with disabilities teetering between uncertainty and hope, feelings he knows well.
“In my head, I am responsible for everyone else because I want to show them what they can do,” he says.
© 2022 Advance Local Media LLC
Distributed by Tribune Content Agency, LLC
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