Alone, I travel fast. Together, we travel far. – African proverb
In my twenty years on the front line as a support worker for people with intellectual disabilities, there is one lesson that I keep re-learning: This work is not something that can be done alone. I have learned that the strength of the “community of support” directly influences the health of the person and all who support that person.
A few years ago I was invited to participate in a think tank for local people/workers and families who support people with special needs. It was initiated by a young family who had a son, dually diagnosed with autism and depression. The young family had trouble understanding the diagnosis, as there were few references at the time pertaining to Dual Diagnosis. Accordingly they had initiated the think tank in order to pull together experienced professionals in hopes of collecting some resources for Dual Diagnosis.
The meeting was late getting started as most of the 25 participants where talking amongst themselves. Some had met many times in their professional and personal lives; others, like myself, were new to the area and did not recognize anyone.
The gathering started with a brief explanation as to why we were invited and broke off into small group sessions of prescribed questions. We then gathered and shared how we had answered these questions. In the end I recall a chart of “next steps” being put together. I did not hear of any follow up meeting, however what did inspire me was a conversation that took place after the meeting.
The entire group stayed after the meeting and talked amongst ourselves about techniques, politics and new endeavours in supporting people with needs in our communities. We got lost in the conversations and ended up staying past the time we could be in the meeting room. The conversations moved to the parking lot as the building was being locked for the night. Somewhere in the midst of walking to the parking lot, someone mentioned that they really appreciated the teachings they received from the clients they worked with. Someone asked for them to explain and they said:
“People with special needs force individuals to work as a community. No other group of people I know can do that. I have learned more about working with others from my clients then any book, course or school.”
This has stuck with me for the rest of my career.
As a front line worker, I am often have more direct and prolonged contact with the person being supported, Unfortunately, I have been repeatedly disappointed that that my voice and experiences do not always hold weight in decision making when plans and changes are being formed by the support team. Because of this, I have found my frustration at times has mounted and contributed to my “burn out”. Obviously this is not something I have found to be helpful to the people I support in any way. In fact I believe it worsens any situation. As a result I started to do just what my teachers have taught me, build a community.
It has become essential to my practice that I learn how to communicate effectively, advocate and detach from my insecurities. I become not only a community builder, but a community leader. I make sure that what I have to say is in the best interest of the person I am advocating for and I also make sure that it is said in a way that can best be heard by the people with whom I need to communicate.
I make a point of remembering that there is a community that is being nurtured. Every situation is unique and requires many tools as well as creativity. The most effective tool I have learned and keep learning in my role as a front line support worker is to let go of my need to be right and open to whatever it takes to provide the best support for the person we are supporting.
This can be a challenging task. It is something that I learn more about everyday, every shift, every time I think I have something figured out. For it is certain, that the greatest teachers I have met in my life are the very people who need my support. They are my master teachers. I have witnessed them challenge the most educated people, the most experienced workers and everyone from the top to the bottom of any hierarchy.
Support work requires everyone to use as many resources as possible. With limited funding and time, the strength of the team or community is by far the greatest and most cost effective resource available. In my experience one of the most wasted resources I have seen is the missed pieces of knowledge and intuitions from the front line workers. Most of the time valuable information is kept amongst ourselves and not passed on to therapists, doctors, managers and parents.
There are a few practices that I have adopted that have helped me in supporting and building a strong community of support. Firstly, I have learned is to listen. I listen to the needs of the person I am supporting. I also listen to the people involved in their lives. By listening, without judging or pursuing my own opinions, I have found that healthy plans are more likely to take form.
Secondly, I have learned that choosing one specific item to bring to peoples attention yields a stronger response. I have found that if I bring too much information at one time it can get lost in the communication chain. If I share one thing, advocate one issue or present one problem and a possible solution, then the results are far greater.
I let go of expectations when I present information to others. If I am with a person I am supporting and I think I have a solution to an issue or if I think I have a piece of the greater puzzle, I take responsibility to communicate this information to everyone who needs to know. I then let go of the results. If the resulting response is not what I want it to be, I ask questions and get more information. I work on not complaining, as it serves no one. Instead I work on understanding.
A few years ago I was supporting a person with a dual diagnosis. He was a very angry young man with limited verbal skills. He often would get upset around TV shows he would watch. People had taken the TV away from him but that seemed to increase the aggression. He really enjoyed his TV watching. I remember watching him interact with the TV and noticed that his anger seemed to be associated with people getting angry on the shows he watched. When people were hurt or upset on the TV, he would mimic their behaviour and was not able to regain control, which would then escalate and he would become aggressive.
I took this information to the management and to the behaviour therapist. I was a weekend relief staff and did not know the team that supported this person very well. Over the next month, I witnessed similar aggressive patterns, yet nothing had changed in his support plan to help him in his emotional distress.
In the past I might get angry, complain and maybe complain. Instead, I decided to practice patience and understanding. I asked for a meeting with the manager and asked why nothing had been done with the information I had provided. The manager had said that he gave the information to the behaviour therapist and that he was waiting for a response.
I then went to the behaviour therapist and asked him if there was anything I could do to help expedite a plan, as the aggression was increasing and I was worried about the well being of the person we were supporting and the staff around him. The BT mentioned that he did not have enough data to make up a plan. He explained to me that in order for him to follow the expectations of his profession, he needed to have justifiable data to implement a new behavioural plan.
I worked with the BT over the next few weeks coming up with a data collection system. We collected information that corroborated my initial insight and put together a plan that almost instantly supported a healthier understanding to help the person we were supporting detachment of the TV characters.
I can recall now all the time and energy it took to get it all done. I also remember the determination I needed to get it accomplished. I worked on one project at a time. I did not get angry when it was not going my way. I asked questions and took time to understand other people’s positions and needs.
The most important part of this lesson was that I did not take it personally. Communicating and understanding was part of my role in this community of support. The person we were supporting needed help and the process of change was not clear, but it rarely is. It is not the responsibility of one person to change the system; nor is it the responsibility of one person to wait for it to be changed. We are all part of the community that will bring health and balance into the people's lives we support. When something falls through the cracks, the worst thing is to blame others. It is in the solutions, the understanding and the determination that real effective support can take place.
I have a great community in my life, and I believe I owe a debt of gratitude to the master teachers I have met over the last 20 years. As a front line worker I continue to learn how to build community, work as a team and support change. I continue to let go of complaining, move to a system of change and build a healthier world for those who need our support.