Family and Professional Perspectives

I stood back recently as the experiences from a lifetime came back to me. 

This quote came next and allowed me to sit with moments that I’ve lived with in more than one setting. 

Perspective is what allows us to step back and see the entire forest instead of just the same old tree we keep running into again and again- Bill Crawford 

This writing is what came next as I stepped into the room with other parents. 

Even when I was asked if I would be taking off my parent hat. Exactly now that I’m in my 3rd act of life and I’ve learned more about how to answer the questions that come when I stand back. 

The answer then, and now, was that my parent hat is always on. Yes, even when our son passed away and I was not living in the role of a parent right now. 

Step into this with me as we look at the perspective along with the discussion about silos, advocacy, Human Service agency work and work in the disability field. 

Let’s see if there are more blooming moments to come. 

New perspective from those I work with each day.

I have had many opportunities to volunteer with parent-to-parent organizations and to work in the disability field for over twenty years. I have been able to continue to learn new ways to support people with disabilities. I have been able to talk with people from across the United States and Canada, and I have found new perspectives from those I work with each day. 

We all come from different backgrounds and different regions, and the people with disabilities in our lives have different diagnoses. And yet, many times there is a word that comes up again and again. Silos. Silos between agencies. Silos between professionals and family. 

A word that held our collective attention with friends.

Not a very exciting word and yet one that has held our collective attention at conferences, meetings, and dinner with friends. 

There have been times when the talk of working to build bridges between agencies starts, 

and then the reality of different funding streams, 

agency directors who may have different views on how services should be delivered, legislative oversight, 

restrictions about which people with which diagnosis can access services, and 

suddenly the best intentions of a group can be derailed. 

The power comes when each of these concerns and realities is discussed with input from families and professionals. 

Recently, I have been involved with meetings in our state to talk about ways that our Human Services and Mental Health state agencies can work together to provide needed services to children and youth with intellectual/developmental disabilities and mental health needs, also known as having a dual diagnosis. 

Silos between professionals and families.

This group of focused and dedicated families and professionals is working to create a training curriculum and a system to support individuals with a dual diagnosis in urban and rural areas.

This is an exciting and hopeful development as conversations continue with families and professionals as we work together to find solutions to current needs for people with disabilities, including those with a dual diagnosis. Silos between professionals and families. 

There is a feeling or a thought that I have been watching develop for over ten years. It takes place in almost every meeting or conference or event where parents of children or adults with intellectual and/or developmental disabilities are in attendance with professionals in the disability field. 

The start of most of these events includes a registration table, a sign in sheet, or introductions where the following choices are requested: Name, Contact information, the Organization you are with, and then a box to check if you are 1) Parent 2) Professional 3) Student 4) Person with a disability 5) Other. What I have seen is that each of us check the box for the area that we most identify with at that time of our lives. 

An underlying feeling from both the family perspective and the professional perspective.

And yet many attendees could check more than one box. The question that comes to me is: why is only one box checked? 

Many times, we have family members who are professionals and professionals who are family members in attendance. There is an underlying feeling from both the family perspective and the professional perspective that has had an impact on many of us.

It often happens that a professional in the disability field is also a parent or family member of a person with a dual diagnosis. 

I have been in meetings where the discussion includes topics that are important to all in the room. 

If we go back to the sign in, the roles we sign is as is how we contribute in that setting. I have been in meetings where I find myself wanting to put on both ‘hats.’ 

I have ‘changed hats’ to talk about both perspectives.

Sometimes I, and others, have ‘changed hats’ to talk about both perspectives. 

Other times, I have come out of a meeting and been met by someone who did not feel they were able to do the same.

When I have had an opportunity to talk with them, this is what I have been told. 

There have been times when putting on the family perspective ‘hat’ has been met with constraints on future conversations as a professional. 

I was told that wearing both ‘hats’ would somehow reduce their knowledge and legitimacy in their work. 

This is something that I did not understand completely until recently. 

A few years ago, I changed jobs from being with a group who knew my son and his multiple disabilities to working at an agency where only one or two of my co-workers know that I had been a parent to a young adult with changing medical and mental health needs. 

I then found myself saying less with my family hat on.

I would be in meetings and conferences where both hats were on, but no one knew it. I then found myself saying less with my family hat on and saying more with my agency hat on.

It took a few months to realize that my perspectives as both a family member and a professional were welcome, and I also found that many at the agency were open to talking about both perspectives as we created plans to support people with disabilities. 

The experiences of life with our son have led me to learn about and work with many good people in volunteer organizations and state agencies in different silos. 

The realization that has come is that silos may be in place in some areas of our work, but we can create new ways to work with any and all interested family members, parents, and professionals to find the best next steps for the people with disabilities and mental health needs that we love and serve each day.

Our collective experiences and perspectives are the power we have to start where we are, use what we have, and do what we can. 

Previously printed in the NADD Bulletin in the Family Corner is an ongoing column in The NADD Bulletin and is published under the auspices of the NADD Family Issues Committee March/April 2017 Volume 20 Number 2