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Massachusetts parent voice goes to Washington

Today’s post is by Michelle Brennan, our guest blogger.  Michelle is a parent from Massachusetts who recently went to Washington to advocate for children’s mental health.****

I recently had the opportunity to go to Washington DC to lobby for better children’s mental health services. I was there as the Massachusetts parent voice and to partner with child psychiatrists to make the case that continued support and funding for children’s mental health is crucial.  It was truly an honor and an experience I will not soon forget.  I learned many things but the most important was:  we as parents have the power to enact change for our children.

The American Academy of Child and Adolescent Psychiatry (AACAP) has an annual lobbying day.  They bring together psychiatrists, medical students, advocates and parents to work in teams to lobby the congressional delegation from individual states.  I had the privilege of working with two great psychiatrists, John Sargent, director of Tufts Medical Center’s  Child and Adolescent Psychiatry division and Anthony Jackson who works with the state mental health system and is in private practice.  The AACAP gave us training and information which made me and parents from other states feel at ease as we visited the offices of our senators and congressman.  Our team met with representatives from  the offices of Senators John Kerry and Scott Brown as well as Congressmen John Olver, Stephen Lynch and Ed Markey.  Since these staffers can meet with as many as 40 groups per week, it was important  they remember us and our message.

Here is where the power of the parent voice comes in.  My husband and I have three sons with various degrees of mental illness.  When speaking with the legislative aides, I was able to tell them our personal story and show them a picture of our sons.  The picture is one of the boys with great smiles in front of the trees during the ice storm in central Massachusetts last year.  As I spoke of each boy, I would point to whom I was referring.  Being a parent from PPAL without ties to a professional organization, I could then ask them if they have had any experience with mental illness in their lives.  Most had been touched by this experience whether it was a family member, friend, college roommate or someone else.  Once they would share, I could follow-up at the end of the meeting. 

When I returned home I sent each person I met with a hand-written thank you note featuring a painting of the Boston Common and a picture of my boys.  In the note, again because I am a parent, I could thank them for sharing their story.  I believe this helped them remember us.

Another way that we as parents have the power to enact change is through collaboration with others. Until I went to Washington, I did not understand the value of working with psychiatrists and therapists on the imperative changes needed from our insurance companies.  I have spent the past five years fighting insurance companies to get the services our family so desperately needed.  I have learned billing and diagnostic codes, appeals processes and have fought for out of network approval for the ever dwindling pool of providers left in Massachusetts.  While the psychiatrists with me cited the sobering statistic that 50% of child psychiatrists are planning to leave Massachusetts in the next five years, I was able to talk about how this impacted my family.

I learned that we can work together to create change. Whenever you are asked to contact your elected official regarding a vote or creation of a bill, do so.  The offices keep track of every phone call, email and letter regarding an issue.  Your voice DOES count.  Remember, we are stronger together and we could ever be by ourselves.

Finally, change takes time.  Do not be discouraged.  Just like with our children, we cannot make change overnight.  Our efforts will all be worth it because of our children.

What do families mean by single point of entry ?

The term “single point of entry” has surfaced again with a vengeance.  There is a proposal on the table to create a single state agency to serve children instead of the multiple ones that exist now.  Part of the thinking is that parents have asked for a single point of entry for years, so this is a way to grant that wish.  But do parents mean the same thing as the designers do?

Families have long been frustrated by going to one door after another, only to find their child has too high an IQ, too vague a diagnosis or they just don’t meet the requirements.  It’s like walking down a mall full of stores and being told that we’re out of this or go try our competitor over there.  Lots of doors to go through, but you can’t get what you need. But often a Walmart isn’t much help either.  You can go through a single door, but the shelves might need restocking or you just can’t locate the item you need.  What parents really want is the right door the first time. 

Finding the right door is not achieved by creating a single door.  Finding the right door requires knowledge, the answers to a skilled set of questions and some strategic thinking about what would be the best place to start.  Many parents who are looking for services are in the midst of a growing crisis, still learning the jargon and trying to find someone who knows what to do.  They usually need a savvy guide, not a Walmart greeter. 

A number of states besides Massachusetts have worked to create a single point of entry.  While hoping that families will be able to access services with fewer steps, the new design also benefits the state.  It can provide a single structure where information about the child and family can be shared, encourage a single assessment and make contracting with multiple providers more streamlined.  These measures can make the children’s system more efficient and reduce duplication.  But does this also benefit children, youth and families? Data sharing about children and their families often means changing privacy standards and a single assessment can trade off a detailed evaluation for a broader set of standard questions.

Most children and families are complicated and likely to remain so.  Children and youth with mental health needs take that complexity to another level.  Finding a single point of entry can be the entrance to a place that welcomes families or a single place to screen families out.  For many years, a Massachusetts initiative called the Collaborative Assessment Program worked with families whose children were at risk of going to the hospital or a residential program, creating clear profile of the child’s needs and a plan of action.  At the end of the program, CAP referred families to the Department of Mental Health or the Department of Social Services (now DCF).  Some families disagreed and opted out of services, saying they wished they had applied separately to the agency that matched their needs.  For them, the single point of entry ignored family voice and choice.

When my son was 9, his school told me they were going to refer us to DCF (then DSS) because he needed more services than insurance and school alone could provide.  I went that same day to their local office, told them of my conversation with the school and painted the best picture I could of my son’s behaviors, phobias and mood swings.  The worker doing intake listened to my entire story, put down her pen and said, “We are not the agency you need.”  She explained what DMH had to offer and walked me to their office. 

What that worker did is what every parent wants.  Someone to listen carefully, help you understand the options and make sure you find the right door.  She carefully listened for my son’s needs and tried to figure out how to match those needs, not exclude him from services.  What I needed, as most parents do, was a knowledgeable and skilled guide to find the right door when I went looking for it.