What is Advocacy?

As some of you may know, I am deeply involved in the Children's Mental Health system in Arizona. I was at the Board of Directors meeting for the Family Involvement Center tonight, which really was not interesting to the average person. We discussed many things, a lot of them I obviously cannot blog about. What I can talk about, however, is a discussion we had about roles parents take in the system and what it means to be an advocate. This used to be a word synonymous with red tape cutting, busting through the system type of activity. An advocate was there to get what was needed and wanted any way they could. That is no longer the case. As a word,though, there is still a lot of stigma attached. We are into Parent/Professional partnership. We want to partner with the system, and mutually guide each other into the places we need to go to be successful. The system reaches out, meets the parent where they are at, and brings them forward to where they want to be. One of the goals, according to the state, is to have parents facilitate their own Child and Family Teams. In layman's terms, it means to run and coordinate their own planning meetings. The discussion today centered around that expectation. If a child is doing fairly well, and there are quarterly meetings just to evaluate and tweak things, that is a reasonable goal. But, if they are not doing well, we enter a whole new dynamic. I will use myself as an example to explain this point. I have a lot of training and I am a certified facilitator in the systems of care process (a lot of vocabulary that sounds important, eh?). A Child and Family Team in Arizona is a component of wraparound services:

Wraparound is not a program or a type of service. It is a community process. The Process is a way to improve the lives of children and families who have complex needs. It is used to assist children and families and communities in developing individualized plans of care to assist and support children/families in their community. Planning, services and supports, cuts across traditional agency boundaries by multi-agency involvement, funding and informal resources.

Still more jargon, I know, but it can be hard to explain. So here I am, a professional in the same system I am being served by. The expectation then, is that I can run my own meetings, as I have for so many other people.

The expectation is wrong, and that is where the advocacy piece comes in. If I am facilitating a meeting, I am in a completely different head space than if I am a family member with a personal stake in the outcome of the meeting. I am concerned about reaching consensus, everyone being heard, and making sure that things go smoothly procedurally, so work can get done. As a parent, however, I am concerned about one thing: making sure my child is getting the care that he needs in my view.

I cannot, and will not, be in the best place to then facilitate. I am in a crisis situation, or we wouldn't be here. I am tired, burned out and emotional. I am frustrated. And I am not ready to be fair and impartial.

This is where advocacy comes in. An advocate, in the way we are now using the word, is a change agent. It is a person to come in and hold my hand and create change in my life for the better. It is a person to see the situation from the outside, help me label the needs of the situation, and identify the strengths that will help overcome it.

A friend who is high up in the system, and quite able to advocate for herself, was describing a situation with her daughter. I was listening to her describe the difficulties, and was able to synthesize the point she was trying to make. She looked at me and said "Maybe, next time, you can come with me and help me tell them."

That is the point. The most intelligent people I know can be at a loss for words to describe an emotional situation, especially when the situation is ongoing and they are still in the middle of it.

An advocate doesn't have to be a professional, and it doesn't have to be a friend or family member. It is someone who can come in, evaluate the situation, and help access the needed supports when you are too flippin tired/hurting/overwhelmed/just plain burned out to.

But that is not all. It needs to be someone who understands the situation intuitively. When you are in that place in which you need help, you cannot always articulate the issues. So an advocate needs to have been there themselves, or be one of those people with natural empathy that can stand in your shoes for a moment.

This is the business I am in. Our slogan is Parents Supporting Parents for a reason. Our organization is in the business of doing advocacy in all shapes and sizes. But only now are we daring to call it that.

And, I am a parent advocate. I am proud of that and will say it loudly. Now, who will be my advocate?