How Much Do We Appreciate Direct Support Professionals?

By Janet Shouse

About the Author

Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

This week (Sept. 10-16) is National Direct Support Professionals Recognition Week. The idea is to recognize the dedication and accomplishments of outstanding direct support professionals and show appreciation for their vital contributions to individuals and communities across the nation.

For those of you who are not familiar with the term “direct support professional,” here is Wikipedia’s definition: “A direct support professional is a person who assists an individual with a disability to lead a self-directed life and contribute to the community, assists with activities of daily living if needed, and encourages attitudes and behaviors that enhance community inclusion.”

If an individual with a disability receives state Medicaid waiver supports and services, through the DIDD waivers or the Employment and Community First CHOICES waiver program, the workers who provide many of those supports and services are considered direct support professionals. In some ways, DSPs are similar to special education assistants or para-pros in the school setting.

Direct Support Professional Recognition Week is part of the American Network of Community Options and ResourcesNational Advocacy Campaign, whose mission is to enhance the lives of all people with disabilities who rely on long-term supports and services by obtaining the resources to recruit, train and retain a highly qualified and sustainable workforce. Here’s a compelling video called “The Cost of Compassion.”

According to this group, ANCOR, approximately 1.4 million individuals require professional support in order to live and work in their own communities rather than an institution.

If you have ever needed care, either in your home or in a hospital or other facility, you know how important it is to have someone who enjoys what he or she is doing and who cares about YOU.

The work may include providing supervision for the individual, helping with cooking, feeding, bathing, toileting, going to work, going to the movies, going to the library, participating in a faith community. In other words, helping the individual with a disability to have the kind of life he or she wants.

There’s a National Alliance for Direct Support Professionals, and its vision is “A world with a highly qualified and professional direct support workforce that partners with, supports and empowers people with disabilities to lead a life of their choosing.”

I contacted two direct support professionals that I’ve heard are wonderful at their jobs. Their names are Laura Grant and Sarah Moore. I asked them if they would be willing to share some of their experiences as direct support professionals.

I asked what led each of them to choose work as a DSP. Laura said, “I enjoy making a difference in the lives of others.”

Sarah shared a story of when she was a teen; a friend had asked her to “hang out” with a friend’s son while his family took a short trip. She said the individual, who could not walk, got sick, and she had to lift him without any equipment. “It was a lot tougher than they said it would be, but I enjoyed helping him.” She decided to work as a direct support professional in 2004, starting as a weekend worker, taking the person she supports on camping trips. And she continues to find caregiving enjoyable.

These days, many of us have multiple jobs and/or careers, and Laura and Sarah are no different.

Laura worked as a social counselor helping protect children from abuse, as a mental health case manager working with people with dual diagnoses and those who are homeless, a crisis case manager working with Hurricane Katrina survivors and as a residential supervisor working with at-risk youth. She has also worked as a companion and a house manager for individuals with intellectual and developmental disabilities.

Laura currently works as a direct support professional for Mid-TN Supported Living and Capitol City Residential Healthcare in Nashville. She works 75-80 hours a week. She has worked in the field since 2005.

Sarah said she ran a wrecker service and worked a dispatcher for a logistics company, before returning to work with individuals with IDD. She served as direct support professional from 2004 to 2009, and then in 2009, she started working as a “companion.”

Sarah works for Mid-TN Supported Living as a “companion” caregiver, which means she lives in the home of the man she supports and is with him throughout the week except for the six hours a day he’s receiving “day services” and one weekend a month, which she takes off.

I asked them about the most enjoyable aspects of their current jobs. Laura finds assisting individuals in reaching their obtainable goals and learning advocacy skills to be rewarding and enjoyable. Sarah said the person she supports is “so upbeat, he’s so positive. If you’re having a bad morning, he’ll give you a hug, and it makes the day so much better.” For her, “He’s more like a family member, and he has a great heart.”

I was somewhat surprised when I asked about the least enjoyable aspect of their work, as I was sure I knew the answer (pay). Laura said she found the “lack of consistency amongst workers” to be the least enjoyable thing, whereas Sarah said “paperwork.” She went on to explain that while she understands the need for paperwork, sometimes it just gets burdensome.

While Sarah gets “personal time off” or PTO once a month, which is paid, Laura says one of her jobs provides paid time off, but the other one does not. So, if she wants to take a vacation or a personal day with that job, it’s unpaid.

Pay is a big issue in this field. Provider agencies may vary some in what they pay, but the range I hear consistently is between $8.50 and $10 an hour. A number of DSPs that I’ve spoken with, including Laura, work two jobs, usually between 70 and 80 hours a week. Sarah said, as a companion, she now makes about $33,000 after 13 years in the field.

I asked about the training, and Sarah said she worked with the individual for three days, read through his Individual Support Plan, took CPR training and took a medical certification course that would allow her to give the supported person his needed medications.

There is a significant deficit in the number of direct support professionals. According to statistics from ANCOR, the direct support workforce is made up of more than 3.6 million workers in the United States, but the demand for direct support workers is expected to increase by 35% from 2008 to 2018. I have heard many Tennesseans, including family members, provider agencies and policymakers, say that the lack of direct support professionals has reached a crisis stage in our state.

I asked Sarah, if someone asked her to make an ad to encourage people to become DSPs, what would she say?

“If you work as a companion, you don’t have to pay for a place to live. And it’s enjoyable. It’s very rewarding to be able to help somebody, to let them do what they want to do. I am one of the lucky ones. I just have one person to work with.” And as a person of faith, she believes, “We are paying it forward.”

I wondered if Sarah wanted to share one last thing about her work.

“At least take time to meet people with mental challenges; give them a chance. Get to know them. Talk to them. Shake their hands. That be the only personal touch that person has that day. Please don’t ignore them.”

I hope that we, as a state and as a society, can find ways to draw young people (and older people, too) into the direct support workforce. The need for DSPs will grow, as more infants with significant disabilities are able to survive into adulthood, as more children are diagnosed with autism, as more people with disabilities are living longer, and as we have now closed our state institutions for people with intellectual and developmental disabilities.  We need many more caring, compassionate, dedicated individuals, like Laura and Sarah.

I want to thank both of them for their willingness to answer my questions, share their experiences and open their hearts to the individuals they support. Thanks very much!

Have a wonderful National Direct Support Professionals Appreciation Week!