Invisible and Isolated: The Future for Direct Support Professionals
“It was a culture shock,” said Alex Esposito as he reminisced on his first day at the Anderson Center for Autism in Staatsburg, outside Hyde Park, New York.
Esposito walked into one of the 24 group homes affiliated with the center and finally met the six men, or “his guys” as he normally refers to them — he would be cooking for, bonding and helping these people with daily tasks for the next year. They came downstairs for breakfast on the morning of March 16, the first day the center went into isolation due to the pandemic, and Esposito felt alienated from the start.
He had only reviewed the mens’ behavior support plans before, so he dove right into working with these men with no prior relationship built with them, which is necessary to be an effective direct support professional (DSP). It also didn’t help that they are predominantly nonverbal.
Before meeting the guys, Esposito thought communication wouldn’t be a problem because he knew sign language, but the men didn’t.
One man he aids, Jason, his name and some others have been changed to protect people’s privacy, uses verbal approximations and only people who know him closely can understand what he’s saying.
Jason loves country music and after some time, Esposito learned that when Jason repeats the phrase “ree,” that means he wants to listen to the western genre. The phrase comes from Jason’s hometown country radio station, 96.3 FM.
DSPs typically learn these verbal approximations by one of three ways: taking the time to learn and understand how the individual speaks, asking coworkers who know and have spent a lot of time with the individual or asking the individual to show you what they are asking for.
Esposito has asked Jason multiple times what his verbal approximations mean and Jason will grab his arm and lead him to the object he is talking about.
After lunch, Esposito’s two coworkers talked in the kitchen as he sat alone with his guys in the living room. Esposito sat in the middle of the brown sectional with two men on one side of him and three on the other. The stress of managing the communication barrier weighed on Esposito; he began to cry as the unfazed men beside him watched Cinderella lose her glass slipper on TV.
Alex Esposito on the SUNY New Paltz campus where he is working on getting a master’s degree in school counseling. Photo by Nikki Donohue
The Anderson Center is a facility that offers supervised group homes and day-habilitation programs for children and adults with intellectual developmental disabilities (IDDs). According to the National Institutes of Health, IDDs are disorders that negatively impact a person’s intellectual, physical and emotional development. Common IDDs include cerebral palsy, down syndrome and autism spectrum disorders (ASD).
Esposito works as a DSP at one of the center’s homes. As a DSP he not only has to help the men he supports maintain personal hygiene, make their meals and help them through crisis situations; but he also needs to build solid relationships with the men in the home and improve their quality of life.
“A DSP does significantly more and has much more responsibility than a home health aide or personal care attendant,” said Founder and CEO of the National Alliance of Direct Support Professionals, Joseph Macbeth. “They do provide care, but they do a whole lot more than that, like building those relationships and getting people to make informed decisions, that's not care. That's complex skill development.”
After a year and some adjusting to the role, Esposito loves his job and “would die “ for the guys at the home. However, being a DSP isn’t necessarily sustainable employment.
Esposito started at Anderson about three months after he graduated from SUNY New Paltz with a bachelor’s in psychology and a minor in deaf studies. Because of his degree, he makes $15 an hour. Anderson’s starting wage is $12, less than the national average of $13.63, according to the American Association on Intellectual and Developmental Disabilities (AAIDD).
Esposito lives comfortably in New Paltz with three housemates and can pay rent of $750 a month because he works 50 hours a week at the group home, including overtime.
His monetary situation as a DSP isn’t unique. Education makes a difference. People who have college credits tend to make a little extra money than their counterparts who don’t have a form of higher education.
A lot of DSPs live in poverty because of the low wages and access to livable wages is a huge problem for DSPs, according to Macbeth.
Melissa Archer, a DSP at the Opportunity Foundation of Central Oregon, has been working with people who have IDDs for the past decade and at some point, found herself working three jobs just to make ends meet. When she first started, she was only paid $11.50, and once her pandemic raise runs out she’ll make $13.63 regardless of having 10 years of experience.
“The truth is that it is very hard to be financially independent and just do the job,” she said.
Archer now only works at the Opportunity Foundation because she recently got married and now has another source of income to fall back on, but she recalled that when her 16-year-old daughter Avery started working at Walmart, she was actually making more money than Melissa.
The reality is that although DSPs do important work by helping those with IDD live fulfilling lives, the people who work these jobs are practically invisible.
The AAIDD reported that the job already has a high turnover rate because of the low pay, and that the Department of Labor doesn’t recognize it as a separate job from being a home health aide meaning there’s no set standard of training or pay for DSPs.
Macbeth says that not recognizing the importance of a DSP’s jobs is actually neglectful to people with IDDs.
“They've been on the outside for centuries, left to fend for themselves, they've been institutionalized, they've been sterilized, they've been marginalized, they’ve not been included,” Macbeth said. “If we are to truly welcome and include people with disabilities in our communities, then we need to recognize that the people who are paid to support them also have value and should not live in poverty.”
The job of a DSP is inherently difficult because of the physical and emotional nature of the job, but the pandemic created new problems and exhausted this workforce even further.
Over the past year, those who stuck with the job had to do their original tasks with the added stress of potentially catching the virus and bringing it home, and emotionally handle having to watch those they support struggle to come to terms with the implications of the pandemic — all while receiving little compensation.
Macbeth describes the DSP workforce as a rubber band being stretched further and further until it reaches its limits and snaps.
“This workforce is being stretched and asked to do more for very little in return. That rubber band is going to stress when you're starting to see DSPs leave this field of work because of the high pressure, and the trauma,” he said.
According to research presented by Amy Hewitt, director of the Research and Training Center on Community Living at the University of Minnesota, during an AAID webinar on March 16, 75% of DSPs who participated in Hewitt’s research said that they felt that they were essential workers, yet only 17 state governments directly named or alluded to DSPs as such.
Group home support staff have had an especially difficult time during the pandemic.
Brittany Herring, a shift supervisor at the Anderson Center, and her boyfriend caught COVID-19 in March, leaving them both out of work for over a month while they had to care for their 8-year-old son.
“We ran out of funding from the government,” she said. “They are supposed to pay you for a good 10 to 14 days. I was out for almost a whole month.”
After the first week, she was back at work, Herring hurt her leg on the job while intervening in a crisis and is now out on worker’s compensation.
Restricted for Their Own Good
DSPs have not only had to worry about contracting coronavirus and bringing it back to their families, like Herring. Archer said she was more nervous to bring the virus to those she supports because people with IDDs are a higher risk population compared to neurotypical people.
According to the AAIDD, 10% of people with IDDs, approximately 738,000 people, live in a supervised group home. People with IDDs are more likely to have underlying conditions, making them vulnerable and those who are nonverbal may have a difficult time communicating when they are sick.
Those living in group homes are at a higher risk of severe cases because they live within close proximity of one another and are more likely to die from the virus.
The measures these group homes put in place to protect people with IDDs have made life at the group homes more difficult for both DSPs and those living there.
The residents of the homes haven’t really been able to understand the pandemic. All of a sudden they couldn’t go out into the community, see their families, they had to wear masks — a task that many cannot do for long periods of time — and wash their hands more frequently.
Esposito said his guys especially struggled with not being able to see their families. He drives the same car as Jason’s mom; a blue prius. Multiple times Jason has grabbed Esposito’s hand, leading Esposito to his car in hopes that his mom was there to take him home for the night.
James Sanborn, a senior clinical director of Positive Behavior Support in Long Island, New York said that the abrupt change has been hard on people with IDDs because they rely heavily on their routine. “They like things to be the same, they like things to be predictable,” he said. “Typically, if there's going to be a change, they prefer that there's some sort of advance notice.”
Edward, a parent of a 24-year-old man with Autism who lives at an Anderson group home, said that his son, Patrick, loved going home to see his family, going on walks and taking trips to indoor water parks.
When the lockdown in New York began, Edward went without seeing Patrick for three months. During those three months, Patrick was kept inside the home.
Esposito, Archer and Herring have all noticed an increase in behavioral issues last year including aggression and self-abusive actions that the DSPs must de-escalate.
According to Amy Hewitt’s research, the sudden disrupt in routine has caused an increase in behavioral issues by 52%, depression by 37% and loneliness by 48% and there hasn't been much change.
Watching those they support grapple with the effects of a global pandemic and not understanding why has been hard for the DSPs.
“Everything they had known was taken away from them and they didn't get a choice, they didn't get to say what they felt about it or how they thought about it,” Archer said while choking back tears and smoking a cigarette. “Of course they're having outbursts and of course are angry.”
Group Homes May Not Be Suitable
“You’re the safest with people who know you, know about you, care about you and see you. ”
The emotional and physical stress on DSPs during the pandemic has been a lot to bear causing a lot of them to quit their jobs, putting more stress on their coworkers and those who use DSP services.
Macbeth says people with IDDs need “well trained, competent and well compensated” staff who know them. “Someone can't be a good direct support professional until you get to know people that you're supporting,” he said.
A good DSP in Macbeth’s eyes knows the individual’s family, takes time to know what helps their client have a good day, how to help them get out of a bad mood and takes their time on the discovery process to foster a respectful relationship.
Now because of the pandemic, states across the country have continued to ease up on training requirements for DSPs since there’s no national standard and it has been difficult to get people into a classroom setting. “What is required is not even the bare minimum of what people need to learn how to be effective direct support professionals,” Hewitt said.
Esposito said a lack of training leads to neglect and it also doesn’t prepare people for the stress of the job.
Steve Eidelman, former president of the AAIDD and professor of human services and family science at the University of Delaware, said that the pandemic and isolation is impacting the care of people living in group homes.
“You're the safest with people who know you, know about you, care about you and see you. So many of the group homes, especially in this current environment, had to go through a sort of hunker down model, because no one knows who's transmittable and not transmittable,” Eidelman said.
Jennifer, who would rather not give her complete name, is the mother to a 20-year-old woman living in a Montana group home. We’ll call the daughter Hannah; she has Pitt-Hopkins syndrome, a rare genetic disorder caused by an abnormality on her 18th chromosome.
Jennifer had to put Hannah in a group home because she functions at the developmental ability of an 18-month-old and requires 24/7 care. Hannah’s needs became overwhelming for Jennifer while also taking care of the seven other family members in her home.
Since Jennifer hasn’t seen Hannah often over the past year, she hasn’t been able to manage Hannah’s personal hygiene. She also said most of Hannah’s DSPs have went away
One day Jennifer picked Hannah up from the home for a permitted family outing, a doctor’s appointment. Jennifer was extremely sad at the sight of Hannah’s condition. Her pants were covered in food stains; Jennifer never lets Hannah leave her house with dirty clothes, her nails were grown out and she had a wart on her hand that Jennifer wasn’t made aware of.
Before the pandemic, Jennifer would take Hannah home every so often to cut her nails, brush her teeth, give her a good shower and make sure all of her clothes were clean and fit. The pandemic has prevented Jennifer from monitoring Hannah’s hygiene and since the only phrase she knows how to say is “go bye-bye,” Hannah can’t express when she’s uncomfortable.
Jennifer said that she has had to take different routes to the group home to keep Hannah from crying when she drops her back off.
The Future for Direct Support Professionals
No one is sure how the pandemic will impact the DSP workforce and those they support.
Some organizations hung banners and started calling DSPs heroes for their work but according to Hewitt’s research, 70% of DSPs didn’t receive any pay increase to their minimal hourly wage while other essential workers received hazard pay.
Macbeth described calling these DSPs “heroes” as “false praise” and “empty rhetoric.”
“If they're heroes, then you're gonna pay them a living wage, if they're heroes, you're gonna give them professional identity,” he said. “What they are is they're an exploited workforce.”
Macbeth also said that calling DSPs “heroes” devalues people with IDDs because they don’t need to be supported by “heroes,” they need well-trained staff who are held to a standard.
Hewitt argued during the webinar that the pandemic could be a “leveraging point” and help IDDs, advocates and DSPs lobby for labor recognition, a standard for training and a higher wage. She advised DSPs to contact their elected officials and be “relentless” to make them aware of the skills required to support people with IDDs.
Lisa Reed, the executive director of RHDD — an organization in Ohio that sends DSPs to people’s homes for self-directed support, has less faith for the workforce.
Reed said 30 years ago, her organization had an abundance of applicants and now they have “virtually zero” because the baby boomer generation is leaving the workforce, creating a gap that can’t be filled.
RHDD pays their DSPs $9.50 to $13 an hour and that hourly wage isn’t desirable to applicants.
“There are so many industries that pay a lot more than virtually anything in human services,” Reed said. “So people who want to work are gravitating to anything that pays more than $13 an hour, and [there] just doesn't seem to be as many people who choose caregiving as a career.”
Although the Bureau of Labor Statistics data can’t be depended on to determine how many DSPs are in the U.S. workforce, Hewitt estimates that about 1.4 million people work as a DSP. However, the turnover rate has consistently remained at 50%.
Esposito and Herring both said that they do not want to continue working as DSPs for long.
After she injured her leg, Herring expressed that she would be seeking a management position at Anderson Care Center that’s less physical.
Esposito is going to graduate with his master’s in school counseling in 2022. He plans to be a school psychologist. In the meantime, he hopes to become a shift supervisor and continue working with the guys at the group home.