Frontline Initiative: Making Direct Support a Career

I was asked by a colleague if Direct Support Professionals (DSPs) are respectful of me and my friends.  Well, before I can answer that question, I wanted to step back and first begin by answering some basic questions.

Who am I?

I live and work very independently in the community with my husband and our cat.  I work as an advocate for my friends and others five days a week. That might sound like I am very independent because I am married and can do a lot of things for myself.  However, I do need some support with some tasks. For example, I need some support with cooking and organizational skills. When I need to buy clothes or other items on the internet, I need support to understand money. The word “independent” is an interesting one, because I believe that there’s no one who is truly independent. Yet, our staff often tells my friends and me, “in order to live in the community, you must be able to live independently.” If that was true, I would never have gotten out of the institution.

What is a DSP?

With the support and help from our DSPs, my friends and I do live in the community very independently.  We all depend on our DSPs for different things. For example, some of my friends depend on their DSP to help them get dressed in the morning and at night so my friends can enjoy the community. Others might need to depend on their DSP to help them clean. If we didn’t have DSPs in our lives, I wonder if living in the community would even be possible for my friends and me? I think the difference of being independent and depending on others is knowing what kind of support or help you need to live independently. I believe no one should tell you what kind of support you need and want.

Why are DSP so important to my friends and me?  

Now that my parents are no longer here, I can appreciate DSPs even more. Yes I have wonderful sisters, but they have their own families to deal with. I am also very lucky, but some of my friends don’t have “good” and “reliable” family to depend on. So, DSPs are sometimes the only people that my friends can depend on.

If our DSPs respect my friends and me, then we’ll respect our DSP in return.

Some suggestions from me about respect:

The most important thing I can stress is that respect needs to go both ways. If our DSPs respect my friends and me, then we’ll respect our DSPs back. One time, my DSP came into my apartment and without even asking if I was hot, he just said, “I am hot” and turned on the air conditioner, like it was HIS apartment, not mine. In my opinion, DSPs need to realize that we have invited them to help and support us in our daily life. If they treat us with respect and dignity, then we will respect them back

I think the biggest issue is that DSPs are not often treated well by the provider where they work. Like most of us, our salary is one of the things that we think about when we consider if the organization respects us and the work that we do. Salaries for DSP are very low. I have heard that some DSPs are not paid very much. A DSP can make more at McDonalds than supporting people with disabilities. I believe that sometimes when DSPs do not treat us well, it is because they are not respected by the organization that they work for. DSPs work very hard.  When DSPs are paid less than what you can make at a fast food restaurant, in my opinion, that is saying to a DSP, “hey we don’t value or respect you.” Therefore, they don’t respect us.

Using respectful language:

• When a DSP says, these are “my” guys or “my” ladies that makes me feel uneasy. I am sorry, but no one owns me.  
• It bothers me when I hear a DSP use the word, “individuals.” It sounds to me like DSPs thinks of us as property. We are not their property. Again, no one owns me.
• The word “client” really bothers me. Actually, to me, it hurts my ears just like when the dentist drills into your month. I don’t pay my DSP, the organization pays the DSP. Most times my friends and I don’t even get the chance to choose our own DSPs. They are usually assigned to us based on what’s needed, and we are not even consulted. You are your lawyer’s client in their office. However,  when you see your lawyer at a social event or somewhere else, they will often say, “Hello, Jane.” However, when I see my DSP at other times, my DSP will often say, “there’s my client.” My friends and I can never get rid of that title.
• The provider that supports me uses the word, “residents.” The problem I see with that term is again the term sounds like you live at the agency. I just get support from the agency. There’s a difference in my eyes. The difference is that I get support from the agency and I live in my apartment. The apartment complex that I live at is called “residences.” Sometimes they say, “Liz, you are one of the residents.” The difference is because I live there.

I can’t think of a better name for DSPs to use when they talk about me than using my name. My friends feel the same way. It’s the name that our parents gave to us.

I can’t think of a better name for DSPs to use when they talk about my friends and me than using our names. It’s the name that our parents gave to us, so why can’t DSPs use it? An argument for using words like “clients” or “residents” is about keeping people’s information confidential. I get that, and I appreciate that.  However, I believe there are ways that DSPs can be more respectful with the privacy of our information.

• What about using the term, “the person that I work with or for”?
• Writing my initials, for, example, if someone is writing about me, they can use “LW” for Liz Weintraub.  

Some final reminders about respect:

• Nothing about US Without US! That phase is a phase that people with disabilities takes very seriously. We take it to heart.  Did anyone ask me if they can write about us? Or was it just in a DSP’s job description to write about us? If you didn’t ask me for my permission, then I think the DSP are being disrespectful to me.
• When I refer to my parents as “my” parents, I say that because my parents were my parents, or that is my book because I own that book.
• If a provider would like a DSP to be trained by a person without a disability that is okay, but a DSP must be trained by people with disabilities so that DSPs understand what people would like in their lives.
• Remember that respect needs to go both ways.
• The bottom line is, DSPs need to treat us the same way they would treat a friend, a family member or a colleague…it’s THAT simple.