By Jeremy Einbinder
A person’s disability can affect them in many ways, and many ways in which someone might need assistance. It’s important to support the civil rights and access rights of people with disabilities as much as possible, but it’s also important to recognize some of the most important people in their journey of self-determination: direct support professionals (DSPs).
Some people cannot live completely independently. They can’t take care of themselves on their own and need help. They may need part-time help or around-the-clock care, or anywhere in between, but the services they require are essential to their well-being.
What this essentially means is that there needs to be more DSPs who need to be able to work less, for more money. A rotation of people assisting the same clients may not seem ideal, but that might only seem to be the case because it is not the norm, and clients are not used to it. In fact, the very idea of an entire work shift being the responsibility of one person might in fact be extremely isolating.
A job posting on monster.com lists the following duties for a DSP:
- Provides direct care to those with intellectual and developmental disabilities.
- Performs personal care tasks, including assistance with basic personal hygiene and grooming, feeding, and ambulation, medical monitoring, and health care-related tasks.
- Fosters positive relationships between caretakers and individuals served.
- Ensures client safety and maintains a safe environment.
- Reminds and assists clients with self-administration of medications (with proper training).
- Encourages self-help activities.
- Reports changes in client’s condition or family situation to administrators and supervisors.
- Documents services provided.
- Performs home management functions such as light housekeeping, laundry, bed making, and cleaning.
- Plans meals, shopping for groceries, prepares and serves food/meals, feeding and clean-up.
- Accompanies clients to scheduled appointments and transports clients or running errands for clients.
- Assists with toileting, including bedpans, urinals, and commode chairs as necessary.
- Other duties as assigned.
Are these things really meant to be taken on by a singular person at a time? It seems clear that it’s not reasonable to treat this as just one job. Perhaps the reason for a shortage of care jobs such as this is because the job can be deeply unpleasant. It is exhausting, it doesn’t pay enough and it’s hard to tell how rewarding it may or may not be, when it is obvious that the individuals with disabilities are not getting the help that they need.
According to Mariah St. John, writing for Forbes,
“A direct support professional supports individuals with intellectual and developmental disabilities by equipping them with life skills and habits they need to succeed in their community. They assist their clients by addressing their conditions and behaviors through the implementation of personalized care plans.”
It seems pretty straightforward and good to foster a positive environment and support system for people with disabilities, but if it is so exhausting, so alienating, so taxing, that it is not getting done, that leaves two problems: exploited employees who may be so miserable that they have to leave their jobs, and neglected consumers with disabilities, who cannot make it on their own or fend for themselves. Specialized healthcare that people with disabilities need ought to be considered a public good, just like any form of healthcare should be. In that vein, direct support professionals, just like any other healthcare workers, deserve to be treated with respect and dignity. Unfortunately, that doesn’t seem to be currently happening.
The American Network of Community Options and Resources (ANCOR) offers the following reasons why DSPs may be leaving the profession, and why it is difficult to hire people. Some of them are as follows:
- lack of useful data about the DSP workforce
- wages that are too low to make a good living
- not enough benefits (e.g. healthcare, retirement, etc.)
- little appreciation from employers
- lack of public awareness
- lack of opportunities to advance in their careers
- not enough access to important technology
- changes in the working population
Most of these reasons are the same reasons why someone might leave any employer, but the fact that the people working the job are not fully aware of its challenges is a big problem. Of course, jobs that have too many working hours should reduce their loads. Jobs which are not paying enough should pay more. Jobs that are especially exhausting and have staffing that is too low should be made less exhausting and more people should be hired. However, it is critical that the public is aware that these jobs exist, that these roles need to be filled, and that there are comprehensive and overarching systems of social support which help both the clients and the workers thrive. New Jersey in particular is making small improvements to the profession. Governor Phil Murphy has spoken in support of these workers. In late April, a Department of Human Services hearing attempted to address these issues. According to an article on northjersey.com,
“Murphy used the hearing to rally support for home aides — known in the industry as direct support professionals, or DSPs — who assist with daily needs, including bathing, clothing and feeding around the clock. It’s a grueling task for which they are underpaid, advocates said.
The state has approved three rate increases for the aides since 2019, and another is planned for January 2023. All four totaled will account for an additional $4.75 per hour for each worker, bringing the current median wage to $17.86 an hour, according to the state.”
At the absolute least, using the MIT living wage calculator, the lowest hourly pay rate for an adult living on their own with no children that can be considered a “living wage” in Trenton is $18.54. By this low and incomplete standard, even the yet-to-be-implemented median wage is too low.
More can be done. With greater systems of social infrastructure and support, the ability of communities to thrive is possible. We must start to see direct support professionals in adequate staffing numbers and collectively managing their own companies and directing their working conditions with each other and with their clients. Both direct support professionals and their clients need to work together with one another to collectively determine the best ways for the clients to get the care they need. That cannot be done with an alienated, exploited, and exhausted workforce.