Impact Feature Issue on Direct Support Workforce Development

We’re sitting around a table discussing the upcoming Presidential election. The individuals whose apartment I am in are hoping that the people they will vote for will change the direction of the services they are currently getting. I’m hoping they will also. The thought that runs through my mind is that when I started in this field the people I supported were never given the option of voting.

My life has come full circle. The people I support now are like the people I supported when I started in this field 34 years ago. My role as a Direct Support Professional (DSP) was just beginning. I didn’t know then what my role was going to become and how the lives of the people I support would change. Wisdom comes with education and experience. It also comes with living this life long enough to be able to look back to where we were and where we are now. I say “we” because this is a journey I have taken with the people I have been fortunate enough to support. I never planned on this being my career. I stumbled across the job because it was close to my home and I didn’t think it would be that tough. After all, I had two cousins with developmental disabilities who lived at home. Sometimes they needed a little more help than their siblings, but so what. I could not have been more wrong or more right.

Imagine a two-story building with brick walls that housed 50 women who slept in metal cots one foot apart. There were gang showers and bathrooms where the toilets did not have any dividers for privacy. Things like the clothes room, the TV locked in a wooden cabinet, and a juke box were accessible only by staff. The few personal possessions a person owned could be stored in a small wooden cubby with a curtain in front of it. Staff were the keepers of the keys. My job was to make sure people ate, assist with personal hygiene, and give pills.

Training? Well, that was eight days at the main regional center (they were called state hospitals). I remember sitting in a dark room watching individual after individual dressed in their underwear paraded onto a stage while a voice in the background droned on about their diagnoses. No names, no humanity, just a diagnosis, a medical label you wore for life that defined who you were and how you were to be treated by staff. I had more training on how to make the perfect square corners on flat sheets than I did on the effects of the medication I gave or teaching life skills. The people I worked for back then were divided into two categories. They were either individuals who were capable of receiving training, or those who were not. The criterion for this was set by a psychologist who came in to test people he met for the day without any input from the staff who interacted with them on an ongoing basis. Once given this label it was theirs for life. People were categorized by their disabilities, not any abilities they might have. Of course, the staff members were not encouraged to teach life skills nor were they trained to do so. There was no effort put into changing the staff’s knowledge base. Every day was much like the one before. In that extremely dismal place, what could ever have been right?

What was right was the spirit of the people I supported and their families. They created a community and changes that had a ripple effect on the attitudes of politicians in Washington who listened because they had family members with developmental disabilities. However, without families, self-advocates, and advocates pushing nothing would have changed. The change that began in the late 1960s and early 1970s meant many things, like the downsizing and closing of state regional centers and individuals having the right to live where they wished. Today, people with disabilities are active participants in their communities. The people I support expect that any discussion I have with them is just that, a discussion. The direction they want their lives to go is determined by them.

These changes have brought a need for a workforce with improved education, training, and resources to assist the people we support. DSPs need a deep understanding of how to support the people with whom we work, and a code of ethics to promote their true independence so that we are advocates for their rights. The days of eight days of training are gone. DSPs need both formal education and ongoing training. Depending on who you are supporting you may need extensive medical training, or training in occupational therapy, body mechanics, or life skill development. This is no longer a job anyone can walk into and expect to coast through the work. On any given day I might have to use training I have received in medication supports to assess how a person is reacting to a new medication, use body mechanics to provide range of motion for someone who has physical disabilities or be able to turn a desire that an individual has expressed into steps they will take to meet their goal. I need to understand the needs of the individual I work with whether that person has the ability to communicate with words or uses non-verbal communication. I may need to know how to use a variety of orthodic devices, assist with mobility challenges, or help someone with eating and specialized diets. I might work with someone whose medication and nutritional needs are met through a gastrostomy tube. Or I might be working with someone whose anxiety is expressed indirectly and it is my job to interpret this and help that person work through what is upsetting them.

Direct support has become a profession requiring not only ongoing training, but an extensive complicated skill set. The training and educational needs of DSPs change as the needs of the people we support change. Ten years ago we knew little about Alzheimer’s; today it is a challenge for many of the people we support. Autism was something we knew little about; now DSPs have a growing need for education and training on supporting people with Autism and their families. What once was a one-size-fits-all criteria for assisting people with developmental disabilities has grown into a career requiring an extensive knowledge base to help the individuals we support in their daily lives.

This is not a job, it is a profession. The people in the field now and who will enter the field in the future will be called upon to do more and know more. Unfortunately, the ability to attract and retain those individuals is becoming more and more of a struggle. Low wages and rising medical costs create constant turnover. Families, self-advocates, and provider agencies face an ongoing challenge to find qualified individuals whose commitment and knowledge will add to people’s lives.