Frontline Initiative: DSPs Using the NADSP Code of Ethics
Ethical Practice is about Learning Side-By-Side with the Person Supported
Michelle visited the Van Gogh Immersive exhibit in Albany, New York, with Annie Galmore, a woman she supported. Annie loved art and was a painter. Michelle shares these in loving memory of Annie, who passed away shortly after these photos were taken.
FI: Tell me about your past and current work in direct support and in training direct support professionals.
I've been a direct support professional primarily in group homes for close to 18 years. Residential has kind of been my niche. I left the field for a little while to work in the business world, but came back because I really missed connecting with people in a way that was more meaningful to me.
I've worked overnight shifts. I've worked day shifts. I worked my share of overtime and weekends. I’ve worked holidays. My favorite position has been working as a DSP with medical support duties in a house. What I enjoyed most about that was the one-on-one time that I got with the people I supported.
I obtained the DSP C-1 credential with the NADSP portfolio model before it became the E-Badge Academy. This opportunity was truly empowering for me as a DSP, in that the detailed work in person-centered supports led to more comprehensive practice in informed decision-making, which, in turn, empowered people I supported. This program has had a definite positive impact on my personal and professional development, leading me into my current position as a staff development specialist with The Arc. I continue to work on-call hours in direct support, which helps me to continuously connect, relate, and walk the walk. I train certification classes such as CPR, First Aid & AED, and Strategies for Crisis Intervention and Prevention (SCIP-Revised). It has been exciting to be the local administrator for the E-Badge Academy. This type of certification program and educational opportunity helps professionalize the field.
In addition, I am a close family member of a person who receives support from DSPs at another provider organization in a neighboring county.
When you’re new in working with a person, you could say, “I'm new here. Can you show me how to do this the right way?” Because guess what? They know how to do your job. They know what they need. They know what you're supposed to do.
FI: Tell us about training DSPs about the Code of Ethics and why this training is important for DSPs.
At the center of the Code of Ethics is learning side-by-side with the individuals we support. If you’re working ethically, you're working mindfully: You assist the people you support to be as independent as possible. If I'm supporting a person in that way and get promoted next week, the individual still has the skills they learned while working with me. When you’re new in working with a person, you could say, “I'm new here. Can you show me how to do this the right way?” Because guess what? They know how to do your job. They know what they need. They know what you're supposed to do. They'll know what they've taught you, and you're also gauging how much they can do for themselves. Just ask the person to show you. Listen to this individual’s means of communication and interact with that person in a way they prefer. See the forest for the trees.
FI: Talk about an instance where the Code of Ethics came into play in how you carried out your work.
I worked with an older woman of color and she consistently identified herself as a “colored person.” To me, this is outdated and oppressive terminology to use when identifying oneself. I wanted to have a conversation with her to understand how she felt about it, and if she realized there were other ways to self-identify. Did she know how other people might feel when she referred to herself like that?
Our language for how we identify ourselves can change over time as we develop self-image and gain experience. For some people, that means different pronouns, realizing gender identity, or recognizing sexual orientation. As a competent and mindful DSP, I wanted to take the time and have a respectful conversation with this wonderful person I supported about cultural competency. Just in case she had baggage around the words, I wondered if it could help her to build her self-image. For my own part, I also think there is something to be said for the ethical aspect of privilege: She may have thought, “Who is this woman to tell me how to identify myself as a person of color?” That's where I got stuck. I felt it was important for us to just open up the conversation. I couldn’t tell her how to identify herself. Nobody can.
My intention was to make sure she knew there was another way that many people identify themselves that may not trigger such negative, historically-oppressive feelings. I also didn’t want her to be caught off-guard if a community member had an aggressive or assertive reaction with her. I wanted to get ahead of it and make sure she knew what resistance she might meet, but also to make sure she had choices in front of her.
FI: How familiar were you with the Code of Ethics when you had this conversation with the person you supported?
At that point, I had already received my DSP C-1 certification which focuses on learning the Code of Ethics, and I had been a DSP for about 15 years. The concentrated DSP certification training empowered me to have this conversation and others that I had avoided before. When I was a new DSP, in my first five years or so, I did not feel the confidence or ability to have a conversation of this nature. I’m not sure I felt like I had a say. I was just there doing the assigned work as best as I could. In many cases, I was guided by the "do for" mentality and tried to make life easier for the people I worked with. Earning my credential certainly made me feel confident. It was like somebody said to me, “Your job is important.” Approaching this topic and conversation, I had developed knowledge in my role, and discovered it was part of my job to have conversations that were not easy, as they could improve the quality of life of the people I supported. I had also built a good, trusting relationship with the person at that point. I respected her, and I felt that she trusted I didn’t intend to lead her in the wrong direction.
FI: What advice do you have for DSPs to help people make choices in their lives that might conflict with other people's expectations for them?
It's tricky territory because a parent who's also a guardian may feel confident that this person cannot make all decisions on their own. As a DSP, and as the older sister of someone receiving direct support, I'm thinking, “Let's give the person the tools they need to make certain decisions on their own.” I think that's ethical. Maybe some of us can't make all the best critical decisions in all areas, but maybe I can make good decisions in the clothes that I wear, choosing social supports, the color and style of my hair, how I identify in certain ways. Maybe I can't balance my checkbook, and I need assistance with making major purchases, or making major health decisions. My advice is to help the person identify what they can make good decisions about, all on their own. We shouldn’t discount people just because they can't make decisions in all areas of their lives, independently.
DSPs already help people advocate for themselves in some areas. But some people have always heard, “You can't make this choice on your own.” The person comes to really believe it. This assumption may be drawn from stigma and not based on their actual assessed capacity. Consider a person receiving support who has been in a long-term relationship and dated someone for years, but has always been told, “You can't get married. You can't live alone. You can't have a child.” Maybe the person just assumes these aren’t options for them because they don’t see others around them doing it. But in their heart, they do want to do all of those things.
When a DSP says that these are viable options, they (and sometimes the DSP) are not sure how to advocate for that. My advice is to bring the interest to the individual’s team for support with planning. Then help navigate going against the tide, consider what supports can be put in place, and help the individual advocate effectively for the life they truly want.
I've found people supported who just don't quite find the voice to say, "This is what I want to do." I give an example in orientation for new DSPs about a group of people who went on group outings to an ice cream place every Friday. And they loved it. They looked forward to it. The staff were wonderful. They made sure that they got there consistently. They weren't doing much wrong, you know? But everybody got the same flavor ice cream: two scoops of mint chocolate chip in a cup. Everybody’s cool. “Here's your ice cream. We're having a great time, right?” I don't know how many of those people paid for themselves or talked to the people behind the counter. I was thinking, “Have you tried the other flavors?” Like when you get the tiny spoon to have a taste test.
The question just needed to be posed, but the experience of the person supported guided them to avoid making waves. That’s learned behavior for the DSPs and the person supported.
A DSP can plan to take some extra time. Maybe don't go in a large group every time. But it was something the group came to look forward to, and the group outing can be fun and something they were used to. When I talked to one of the individuals going for ice cream, I asked, “Do you like mint chocolate chip ice cream?” She said she didn’t, but didn't want to cause any trouble. Knowing these compassionate DSPs, I did not expect backlash for asking for a different flavor. I'm sure the staff would've just said, “Oh my gosh, okay, you want butter pecan? Yeah, let's try it or, let's get it.” The question just needed to be posed, but the experience of the person supported guided them to avoid making waves. That’s learned behavior for the DSPs and the person supported.
As an ethical DSP, I advise to ask the question, “What's your favorite ice cream flavor? Have you tried the black cherry? 'Cause it's amazing. Look, there’s a new flavor. Let's get a tiny spoon and try it.” And that's just ice cream.
Conversations about more important things, like healthcare, jobs, relationships, and identity should be commonplace. It can get really tricky in some areas where we're educating people to develop natural networks by meeting people on the internet safely. We have to first ask, “What kind of relationships are you looking for? How much are you willing to pay to travel to meet a person? Or, you know, what kinds of conversations are you looking to have?” Which ones are safe? And how do you decide, and how do you find out if this person is able to consent for themselves in different areas?
You asked me earlier when I decided I had to have this conversation with the woman about how she identifies herself. It was when we had built a solid foundation of respect and trust. I felt empowered as a professional to speak up and support the person’s choices, and that my work would have a positive impact on the person. That foundation was developed over time.
FI: What were the differences in your own perspectives that came into play when you talked with her about it?
Right. She was born at the end of the 1950s and grew up in the ‘60s—experiences that she rarely discussed in her own words. I drew the conclusion that she experienced intersectional oppression throughout her life from what little she did share. I had to check my own feelings when I heard her call herself a colored person. I had an uncomfortable internal emotional reaction and thought, “Oh no. How can we do better?” That was a reaction of a 40-year-old, cis, white woman, which was uncomfortable as well. I chose to have the conversation just to gauge how she genuinely felt about the words, rather than assigning my own feelings. I asked questions like, “What does it mean to you?” and “Do you feel comfortable telling me how it makes you feel to identify yourself with those words?” I wondered if she would change her mind or stick to what she had always known. If she changed the way she identified herself, did that mean it changed the way she felt about words or experiences? Or would she change the words to appease me or others, just to “be compliant”?
I felt the need to open up the conversation to ensure that we navigated the implications. She had the conversation with me, listening and responding thoughtfully. This helped me to ensure she had skills and confidence to speak up for herself, established an expectation for other people to respect her and decide how to respect others. Also, to have prior knowledge and prevent needing to defend herself, just in case she ended up in a situation where someone had something not-so-nice to say. I believe we're living in a world now that's much more conscious of different abilities and treating others with kindness, but it's not always guaranteed.