Frontline Initiative Changing Roles
He Allowed Me in His Life
Being employed directly by a person receiving supports is an important change that is occurring for many Direct Support Professionals (DSPs). Sally McGurn interviewed JoAnn, a DSP in Kansas who was hired directly by the person she supports, and heard an inspiring story.
Sally: How were you hired?
JoAnn: I worked with Nathan at a residential setting and got to know him well. Nathan and his mother were not happy with the services he was receiving at the time. His mother heard about an apartment that might work for Nathan and checked it out. Nathan and his mother decided that the apartment would work out and so Nathan moved. It just happened that I ended up supporting Nathan after he moved. I had been providing supports to Nathan for about a year and knew him so well that his parents hired me and I chose to work for him. I left the agency I was working for to provide supports for Nathan. Nathan likes me and he likes doing things with me. We have a good relationship. We were excited about working together! The move was a scary time for Nathan and it helped to have the security of someone he knew and of someone who knew him. It really helped with Nathan’s transition. People were coming in and out of his life and this was an opportunity for him to have someone he had known for a long time to continue to provide supports for him.
Sally: How do you work out conflicts with Nathan?
JoAnn: I deal with things in a positive way with Nathan. He is not able to verbally communicate his needs so we play 101 questions. I ask a lot of yes/no questions. Nathan is very adamant that you understand exactly what he is trying to communicate and he will not stop until you understand. He is not one to give up! It takes patience and really getting to know Nathan and his likes and dislikes. He likes things a certain way. For example, he likes the closet doors shut, his bed made, and the arm rests in the van up!
Sally: What are the benefits of being hired directly by Nathan?
JoAnn: I have a lot more say about providing Nathan’s supports. There are not as many people you have to consult with to make a decision. It makes more things happen in a more timely manner because you don’t have as many people to go through. There is direct communication and direct contact with people involved in his life. I feel strongly that I work for Nathan first and foremost — before anyone else.
Sally: What are the disadvantages of being hired directly by Nathan?
JoAnn: I work for Nathan, but there are boundaries. When you work so closely for a person as I do with Nathan and his parents, versus in a group home, it is important to establish boundaries. In a grouphome setting staff would never go over to the parent’s house. But relationships still need to stay on a professional level. I don’t need to be a part of Nathan’s family. I need to be something a little bit different — I am Nathan’s advocate. I need to be objective and do what is best for Nathan — what Nathan needs. My main points are that I am his advocate, not a family member, and that it is important to keep and set boundaries. Another disadvantage is that I do not receive benefits such as health insurance, leave pay, a retirement plan, etc. I pay for my own benefits. I do receive a small amount from Nathan’s parents that pays for some of my off time. I pay out of my pocket for any expenses when I am out and doing things with Nathan. I would like to see an organization that helps people who are private providers pay for health insurance.
Sally: How does working for Nathan differ from working in more traditional settings like a group home?
JoAnn: I worked in group home settings before where we supported six to eight people per home. You work with two to three individuals but really don’t have a whole lot of time to spend with them. Do you really get to know people? This is unique with Nathan because I am one to one with him. We really need to increase staffing for more one-to-one time so we can get to know the people we support.
The problem I saw in the group-home setting was high turnover. It is unfair to the men and women getting supports. I think we ask more of the individuals we support than we ask of ourselves. Security and a safe feeling is critical. In a group home setting I think it is important to talk more frequently with the direct support staff because they often have the answers rather than people in management positions who make decisions without knowing anything about the individuals we support. In group homes there are checklists and schedules, but with Nathan teaching is incidental and occurs naturally. Checklists being checked off is not natural.
Nathan has a lot of choices in his life now and developing relationships takes a long time. I have seen where people who hate each other are put together in living situations. I think a person has a right to chose where and with whom they live. I also think staff should never work with more than a couple of people.
Nathan looks to me for guidance and support and I honor that. People with disabilities know when you don’t show respect and lie. It is important to show up when you say you will and follow through on things you say you will do. When people get hired to support a person it has to about more than just a paycheck. Respect is important and you need to ask yourself, “What about now and what about today?” even if you plan to move on.
Sally: What attracted you to working directly for the person you support in the first place?
JoAnn: Nathan himself. He amazes me with the things he can do — in spite of his disability he is so amazing with what he can do; his sense of humor. We started out so well. He allowed me into his life and I wanted to be there. We had a mutual non-verbal agreement.
He continues to teach me a lot about life. I guess I am from the old school — commitment to a relationship. Nathan is a person I care about and love. He is an individual, a human being. I talk to him like his is a 27-year-old because he is 27 years old. He has his own soul.
Sally: Nathan’s mom spent a lot of time trying to get the best services for her son through out his life and she sure found them with JoAnn. I was amazed through out the interview with just how much JoAnn truly cares about Nathan and is committed to him. What a true gift they have in JoAnn.