I learned everything I need to know about caregiving from being a DSP

This week, the entire nation is celebrating Direct Support Professional Recognition Week. Direct support professionals are paid caregivers that provide assistance to an individual who needs support to live in their home. They go by many names: 

Direct support professional (DSP). Direct service workers. Direct care staff. Direct support staff. Staff. Personal care attendant. Personal care assistant. PCA. Personal assistant.

Despite the different titles shared by these professionals, they all have the same critical role in the world: empowering people who are have intellectual and developmental disabilities (IDD), mental/behavioral health issues, or who are aging to live independently in their homes and connecting them to their communities.

I started my first job as a DSP in 2005 right out of high school. I had watched my mom support several adults with IDD throughout my teenage years, so I figured it would be a cake walk. It didn’t take long for me to realize that taking care of people was not as easy as it looked.

DSPs are responsible for helping people with a wide range of support needs with the basic things we all do everyday. (Professional speak for this is the Activities of Daily Living (or ADLs) and the the Independent Activities of Daily Living (or IADLs)¹. These include:

That is a high level of responsibility!

Since the majority of people with IDD are living in a setting that is funded by Medicaid, DSPs have strict and sometimes restrictive policies and procedures that must be followed to ensure the quality of their supports. This means that DSPs often have another level of responsibility in providing support that go beyond the assisting with daily activities. These include:

• Transportation: helping people get to the places they need to go and navigate their communities
• Documentation: capturing daily activities, tracking medication administration, monitoring health and behavior supports, and reporting community outings
• Health care navigation: communicating with doctors and medical staff, relaying medical history, providing personal information, taking care of follow ups
• Ensuring Safety: DSPs have to carry out monthly emergency drills (something we should all do) and become certified in CPR and First Aid

It is not always an easy job. “…DSPs today are called on to provide medication supports, implement behavioral plans, teach new self-care skills, design and implement augmentative communication systems, and provide a wide range of other sophisticated supports that require substantial skills on the part of DSPs”². More often than not, people working as a DSP do not receive a substantial amount of training to equip them to support people with these activities. Many of us struggle with some of these areas ourselves as adults without any physical or cognitive impairments.

We all know that we need more than our basic day-to-day needs met to have a good life. At the very core, we are all humans with the same basic needs, not only for nourishment, security, and shelter, but also love, self expression, and spiritual fulfillment (see Maslow’s hierarchy of needs).

Besides helping with daily activities, which can, at times, be strenuous (depending on an individual’s need for support), the emotional side of dealing with people can be difficult at times. DSPs must master the art of human interaction on several levels. I can tell you that some of the most critical lessons I learned about supporting people at home and in the community took place at this level.

Below is a short list (ha!) of the truly valuable skills and insights I picked up from being a DSP.

Human Psychology

DSPS have to be masters of interpersonal communication. In order to help another person be part of their community and make it through daily life, you have to know how to communicate well with others. This is not always easy. You have to learn how to be invisible, but at the same time, be present to assist with facilitating connections.

You also have to have an awareness of emotional intelligence, not only being aware of the emotions of the person you’re supporting, but also your own emotions. People who are receiving support often pick up on the emotional vibes of their staff. At times, they need help tuning their emotions to the appropriate level. When you are a DSP, you are constantly riding the waves of another person’s emotions, sometimes from a lifetime of baggage.

People go to school for years and years for this, but somehow DSPs are expected to manage the day to day aspect of providing support and at the same time meet and assess the emotional needs of the people they support.

A key part of a DSP’s role can be responding to behaviors. Just like people, behaviors come in all shapes and sizes. Being a good DSP requires learning what makes the people you support ‘tick,’ what sets them off, and how to get them back on the right path. When you are DSP, you learn a lot about behavior and the reasons people have them:

• Health issues: Sometimes, behaviors are health-related – something is physically wrong with that person and they have no other way of expressing it than ‘having a behavior.’
• Communication problems: Sometimes, a person is trying to communicate something and it is mistaken as a ‘behavior.’ Ultimately, the person providing the care is missing the signals!
• Caregiver induced: Sometimes, even though we have the best of intentions, we can do things
• Years of abuse, trauma, oppression, marginalization and in some cases institutionalization: Sometimes, people develop mannerisms and flight responses after years of being cared for by an impersonal service system that only looks out for their health and safety.

A large portion of the adult population currently getting assistance from DSPs receive residential supports do so through the Medicaid funded Home and Community Based Services long term care system, and unfortunately, this is often their sole source of support. Sometimes (and sometimes is being nice) it happens that when a person is supported solely by people who are paid to be in their lives, these aspects of their life don’t get the same level of attention.

To counteract this isolation, DSPs are responsible for facilitating inclusion of the people they support by accompanying them to places and activities outside the home, other wise known as “Community Integration.”

Community integration (or “outings”)

The things I learned while helping the people I supported in the community still help me today. The key lessons I learned from Community Integration were:

1. Help people belong: When supporting people in the community, DSPs have an essential role: facilitating inclusion. They are the bridge between the person they support and the world outside of their front door. DSPs have to be creative and innovative helping the individuals feel like they are members of their community and that they belong there.
2. Be prepared: When I was Calvin’s DSP, I had to be able to predict calamity. I would pack snacks and medicine if I thought we’d be out longer than expected. Since Calvin had limited communication, we didn’t always catch his signals that he had to use the restroom, so we quickly learned to pack a backpack with an extra change of clothes (or two!). Since he didn’t know a whole lot about what was happening around him, Calvin had a hard time waiting. We had to make sure to always bring plenty of diversions with us to help with the waiting.
3. Have a plan: Where are we going? Will it be accessible to the person you are taking? Where will we park? Is there a lot of walking involved? How much does it cost? These are all things I had to think of when preparing for ‘an outing.’
4. Get a Thick(er) Skin: People can be nasty out of their ignorance. Even though 1 in 5 people have a disability, a lot of people aren’t used to being around them. I used to think I was pretty tough. When I took the people I supported out into the community, people would look at us crazy and sometimes say some really mean things. I had to learn to let it roll off my shoulder and not turn it into a reason to deprive them of the opportunity to be part of the world.
5. Take advantage of teaching moments: When people are rude to the person you are supporting or do something to offend, use that as an opportunity to educate them. Often, people are willing to be helpful or friendly, they just need to know how. Sometimes, we were able to help people understand what it was like to live with a disability in today’s world, which was an awesome experience.

Choice and Self-determination

The most important things I learned from being a DSP relate to honoring personhood. We all deserve dignity and respect, and we all have the right to make choices about our lives. Unfortunately, for people who rely on others for support, they often lose the opportunity to make even the simplest choices. Providing support to someone does not mean that you get to make all of their decisions for them. It is important to have a partnership with the person and let them make their own choices, and support them if they need it.

Being a DSP teaches you a lot about the world. One of the most invaluable virtues direct support teaches you is empathy. Life is tough. For many individuals who need assistance, the everyday struggle is compounded by multiple impairments, chronic health issues, and trauma. This struggle includes a daily battle for the basic civil and human rights that most of us enjoy already. When you open your eyes to the oppression that people with disabilities face, both on a day to day basis and a systemic level, you not only see things differently, you begin behaving and responding to others in a new way as well.

Direct support often includes a fundamental internal change in behavior and beliefs, which can be emotionally and spiritually overwhelming. Many times people are exposed to ideas that challenge deeply held societal beliefs about people with disabilities. Any time you’re forced to reconsider and change your world view, it can be tough.

Over the years, I have been a DSP for many different people, all with unique personalities and gifts. Working as a direct support professional taught me many invaluable skills I still use today in my own personal life, as well as in my role taking care of my grandma. My career as a DSP prepared me to be a top notch caregiver to my grandma. I am better equipped than most family caregivers because I not only have mastered helping someone through the everyday activities we all take for granted, I was also fortunate enough to get some of the emotional and behavioral reprogramming needed to provide quality support.

Sources:

1. Bookman, A., Harrington, M., Pass, L., & Reisner, E. (2007).Family caregiver handbook: Finding elder care resources in Massachusetts. Cambridge, MA: Massachusetts Institute of Technology.
2. The Supply of Direct Support Professionals Serving Individuals with Intellectual Disabilities and Other Developmental Disabilities: Report to Congress. U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. January 2006. hhttps://aspe.hhs.gov/basic-report/supply-direct-support-professionals-serving-individuals-intellectual-disabilities-and-other-developmental-disabilities-report-congress#changin