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The Disability Care Crisis and Direct Care Jobs

Personal Perspective: A devaluation of direct care workers is creating a crisis.

Key points

  • Our care system is in crisis, from a shortage of available services to reports of abuse and neglect.
  • Direct service professionals (DSP) perform demanding, unpredictable, and risky work.
  • In Massachusetts, the median hourly pay for those who provide direct care ranges from $15 to $17 an hour.
  • We need improved working conditions, including higher wages and better training, for direct care jobs.

Underneath my calm façade, the anxiety is overwhelming. It happens every time, unfailingly, whenever my husband and I drop off my son at his group home after he visits us.

My son is a 25-year-old young man with profound autism. He has limited language and life skills and challenging behaviors that need 24/7 care and supervision.

iStock/Credit Fotostorm
Man Embracing his Friend
Source: iStock/Credit Fotostorm

When we leave the group home, we say goodbye to the on-duty staff, the direct service professionals (DSP) who work with my son and the other residents, supervising and supporting them in the activities of daily living. From toileting and dressing to dealing with aggressive and self-injurious behaviors, they do it all.

As family members advocating for our vulnerable loved ones, we have a complicated relationship with those who provide direct care, a mix of appreciation and unease. We are grateful to them, these strangers who have taken on the physically and mentally demanding, unpredictable, and, at times, risky work of caring for adults with intellectual and developmental disabilities (IDD). At the same time, we fret about the quality of their labor. After all, these jobs ask for a great deal in comparison to what they give in pay, benefits, security, and status. Can we reasonably expect a high level of skill, commitment, and motivation from DSPs under these conditions?

Our care system is in crisis. From a shortage of available services for those who desperately need them to disturbing reports of abuse and neglect, the service system for adults with disabilities is in turmoil. There are many layers to the crisis, but at its core is the devaluation of the labor of direct care, the failure to give it the kind of recognition it deserves. Any meaningful reform has to start here, with greater rewards and respect for those who provide services to adults with disabilities. As a parent, I am viscerally aware of how my son’s well-being and that of the workers who provide him with direct care are deeply interwoven.

Health care support and direct care occupations are largely populated by women, people of color, and immigrants. Those working with my son in these positions since his teenage years have been immigrant men from Africa and the Caribbean. For them, these jobs, spurned as low-paid, low-status, and unpleasant work by others, provide a foothold into the U.S. labor market.

To learn more about direct IDD care, I decided to put my training as a sociologist to use and interview people in these jobs. Muneer, who spoke to me on condition of anonymity, has been living in Massachusetts and working in the field for over five years. With a Master’s in Business Administration from his home country in Africa, he had no experience working with persons with disabilities before coming to the U.S. Like other highly educated African immigrants who have no option but to move into entry-level care jobs, his home country credentials did not translate into opportunities in the U.S. labor market.

Muneer derives great satisfaction from his work in direct IDD care, even though he never imagined himself doing it before coming to the U.S. He feels deeply connected to many of those he takes care of and has come to appreciate their individual personalities. Similar to what University of Connecticut sociologist Fumilayo Showers describes in her research on West African immigrants in disability care jobs, Muneer feels that he has grown as a person and developed a newfound respect and appreciation for those with disabilities.

Soon after arriving in the U.S., Muneer began a job as a staff member at a residential home for young men with disabilities through the referrals of fellow immigrants from his home country. The first few weeks were overwhelming, as he learned about the specific needs of the men at the home. He learned that one man had a habit of trying to lock the staff out of the house and another had meltdowns whenever anyone tried to button his jacket. He felt ill-prepared by the agency training and orientation, which had focused mostly on rules and policies instead of the actual tasks of care. In a 2023 survey, over half of direct service professionals (DSPs) in IDD care indicated that the onboarding process for their jobs had been inadequate.

In Massachusetts, the fifth most expensive state in the nation, the median hourly pay for those who provide direct care to persons like my son ranges from $15 to $17 an hour. Finding it difficult to survive on these wages, Muneer, like many fellow workers, started “shift-hopping.” He took on multiple shifts across different agencies to augment his working hours and income. “It’s like we work four-day shifts at one home, two overnight shifts at another, and then a third home on the weekends.”

It’s not just the long hours and multiple locations that are exhausting for Muneer. The dangerous behaviors of residents can leave him emotionally and physically drained. Difficulties are most likely to arise when the service agencies contracted by the Department of Developmental Services (DDS) to operate homes understaff them, leaving those present to deal with much more than they can handle. Agencies can also fail to provide direct care staff with the guidance of specialists, such as clinicians who can assist and advise on how best to work with clients with challenging behaviors.

Muneer has, at times, felt ignored by agency administrators when he has made suggestions to them about the needs of clients. He feels that, at some agencies, direct care staff are largely overlooked and dismissed by upper and mid-level management as an expendable and unskilled workforce. The only time they get attention is when there is a problem for the agency.

“The managers don’t want to listen to us," he says. "We are the ones actually there with the guys in the home, but what we have to say doesn’t matter. Then there’s a problem, maybe a neighbor complaining about the screaming noises from the house or a fight between two residents. And the finger points at us, even though we have been saying for months that these guys need to be placed in rooms farther apart in the house.”

Pixabay/ Harish Sharma
Awareness
Source: Pixabay/ Harish Sharma

Since my son turned 22 and transitioned from youth to adult care services, my husband and I, like many other families we know, have been advocating for our son to receive appropriate, high-quality care services. We grapple endlessly with the various bureaucratic layers of a fractured and underfunded system that appear, at least to us, to lack transparency and accountability.

Listening to Muneer’s story has given me a fresh perspective, though, on these struggles. My goal of making sure my son lives safely and as fully as possible, even when my husband and I are not around to advocate for him, cannot be realized without improved working conditions, including higher wages and training, for those who care for adults with IDD disabilities.

Dropping off my son at his group home after a visit will always be emotionally fraught for me. Especially since he cannot communicate to us about his life, I will always be concerned about him. What if I were confident that those caring for him were being adequately rewarded and respected? Under these conditions, I could say goodbye with the comforting knowledge that the work of caring for my son is recognized for its value.

References

Showers, Fumilayo (2023). Migrants Who Care: West Africans Working and Building Lives in U.S. Health Care. Rutgers University Press.

Duffy, M., Armenia, A., & Price-Glynn, K. (2023). From Crisis to Catastrophe: Care, COVID, and Pathways to Change. Rutgers University Press.

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