Frontline Initiative Legislative Advocacy

When Debbie, my supervisor, first asked me to testify before the Human Services Sub-Committee of the State House of Representatives, I was pretty scared. I am not an outspoken person and that seemed like a really scary thing, going up in front of all of those people. But I just looked back at all the years I have been working and prepared a letter of how I felt about our profession and about the people I have worked with.

I guess I decided to do it because of all of those people. I don’t think anyone realizes that after working with people, they become a part of your life, like family. I decided that it is important for people to know my experiences so that people know what people with disabilities need. Before I got into this profession, I didn’t even realize there were this many people with disabilities living in the community. I also decided that it was important for legislators to know that I have worked for 15 years and get 10 bucks an hour. You can make 15 bucks an hour making donuts in my town. Other people need to know this. They have to know that this isn’t a nine-to-five job. It takes a lot of dedication to learn how to support the people I work with. And they have to know that the reason we do it isn’t because of money, but because it’s more than a job, the people I support are my family. So, when I decided to tell the story of who I have worked with, Debbie promised to help me through the experience. I wrote a letter about some of the needs of the people I support and I was ready to testify. 

I was scared all the way through the testimony. However, it was worth it. The legislators were cooperative and they really understood us when we told our stories. They seemed interested and asked us important questions like why we stay for such little money. This made it a good experience, definitely one that I will never forget. Here is the testimony that I gave to my state’s House of Representatives:

Testimony before Human Services Sub-Committee of the House Finance Committee Public Hearing on MR/DD Budget, March 8, 2001

Hello, my name is Mary Winchell. I want to thank you for putting more money in the MR/ DD budget. This and the proposed budget language will allow raises for direct care staff. I’ve worked for HAVAR, Inc. for 14 years. Working for and with people with disabilities is both a reward and a challenge. Some of the challenges are the long hours that I put in and the times I work over, just to accomplish consumer needs. Many times I give up personal time to help individuals accomplish goals when there is no other staff available to work.

When I work with people with mental retardation in their homes, I need to make sure their needs are met, problems are solved, lend an ear when someone needs to talk, and try to explain things so they understand the choices and explain the consequences of decisions.

I want to tell you about my work with a woman I will call Dorothy, who is a 70-year old with mental retardation. I provide live-in supports for her. When I first started to work with Dorothy, about fourteen years ago, she wouldn’t wear clothing or go outside her bedroom. She had been kept locked in a closet and was afraid of leaving her home. She had had violent outbursts in her earlier life and people were afraid of her. Now, as a result of working with her daily and the care that she receives, she is a happy woman.

Dorothy needs help in every aspect of her life. I help Dorothy get up in the morning, toilet herself, take a shower, wash her hair, help select her clothing and get dressed and ready for the day. Since Dorothy can’t protect herself, I make sure the temperature of the water of her shower is safe before she gets into the shower. If she wants a meal cooked, I will cook it for her. I make sure, if she is doing something in the kitchen, that there are no accidents. I drive her where she needs to go, whether it is shopping or errands or visiting her sister.

Dorothy struggles to keep weight off, so what she eats is important. I research what foods are healthy for her to eat, and then suggest those for her meals. From these healthy foods, we have developed a special menu that includes healthy snack items. This way, Dorothy is not so hungry that she wants to snack on foods that aren’t good for her. We make up a menu together of what she would like to eat, and then we shop for groceries together. It is very hard to maintain her weight so this helps her stay healthy and maintain a healthy weight.

Another area of health concern for Dorothy is her balance. She often is thrown off balance and can fall easily. It is important that I watch and assist as she makes the transition from sitting to standing or when she gets into bed, that she does it safely. A staff person is always with Dorothy to make sure that she is safe from falls that could cause serious injury.

I make many late night calls just to reassure the people I work with that everything will be okay. Also, while in the home, especially when there is more than one person I provide services for, there is an extra need for attention. One may feel you are spending too much time with the other, and problems can arise. It’s really hard to split time between them, especially when one may have more needs. The other person is more independent, but she still longs for your attention.

There are also many rewards. The smiles and joy you see on the faces of people when something that they really want actually happens, or they accomplish a goal they have been working for. Also, the self-satisfaction of knowing you have had a part in helping and improving someone’s life for the better. It’s the little things that are rewarding-the thank you’s and the joys of the job.

Many people are leaving this profession due to the changing economy — the need for a higher wage to meet our own personal needs. I personally wish to stay in the profession, but if we don’t get an increase, I may have to take this route myself.

I have enjoyed my job for many years, but times are changing for me, and needs are changing. It’s not that I mind the extra work I do, but it’s hard to afford some of the extras for Dorothy when I pick up the tab. The long hours worked, the time given up from my family, to help in times of need — these must be compensated, so I appreciate your assistance in this budget so that I may continue to provide services to Dorothy. Dorothy, and the other people that I serve, also deserves to keep the staff people who are important to her. In closing, this raise is desperately needed and I thank you for keeping it in the budget.