Fighting Not to Lose Ground
October 20, 2017
October 20, 2017
Morning Zen Guest blogger ~ Lisa Lambert ~
I find myself in an odd position these days. A position I couldn’t imagine even a few years ago. Instead of fighting for change, for improvements to the children’s mental health system, I am fighting simply not to lose ground. I think we all are.
We all know what fighting for change and improvement looks, feels and sounds like in the mental health system. It’s slow, sometimes really slow, and progress is uneven. But you can see it if you take the panoramic view. Children in many states get their care closer to home and in their community than they used to. We acknowledge that parents and family are important to the well-being, even the outcomes, of children, youth, and young adults. Youth and young adults have changed the way we understand what works. Providers and funders (schools, therapists, state agencies, insurers) are more likely to talk to each other and understand better how they can collaborate. We can boast a little and pat ourselves on the back.
But lately, my efforts are going into shoring up, not building up.
I’ve been the executive director of a small family-run organization for 11 years. We consider ourselves an advocacy organization and maybe that’s more important than all the other things we do. We’ve been clear that advocacy is a key element of our reason-for-being and I have been fierce about that.
“If you change things for one family, you change things for one family,” I am fond of saying. We can do better than only individual change. We can make it better for many families, lots of families, if we work for systems change, legislative change and permanent change.
Those days seem to be in the recent past. Not long ago, I was working (as part of the Children’s Mental Health Network) to get something substantial about children in the 21st Century Cures bill. I was working in my own state on juvenile justice legislation, on insurance legislation and increasing funding for all things mental health. But my focus keeps shifting.
These days it’s as if we are dealing with own hurricanes, wildfires and other disasters. We are checking for damage, erosion of our infrastructure, and making sure everyone is okay. Congress didn’t renew the Children’s Health Insurance Program (CHIP), which usually has tons of bipartisan support. The essential benefits package in the Affordable Care Act includes mental health, and with each new run at replacing, repairing or obliterating health care, it’s not certain that will always be true. When talk of Medicaid block grants gains momentum, I shudder. Past experience has shown me that children do not do well when funding for their care is thrown into a bundle with everyone else’s. They get forgotten or become an afterthought.
Get families to call their legislators, people advise. We do send out alerts and make it as easy as possible for families to take action. But many families are dealing with today’s personal crisis and that takes most of their attention and resources. It should; that’s what parenting is. Some feel like the rest of us and don’t know what call or email to prioritize. Many don’t have the energy or wherewithal to call their legislators and sometimes feel guilty about it. They need us. They need us to be unrelenting, unabashed advocates for children’s mental health.
One of the best things we can do is collaborate, form coalitions and partnerships at the local, state and national level. No one can go it alone. There are a lot of tables out there and it’s important to be at as many as possible. We are often the children’s voice at the mental health policy table and the mental health voice at the children’s health care table.
While we are looking outward at what’s happened so far and what’s coming next, I am also looking into the faces of families managing today’s disaster for their child. Parents are looking at their child with the new diagnosis or tougher diagnosis and promising to fight for them. They are tracking down services that take too long to get into or health care professionals who have few openings. They are dealing with trauma, depression, psychosis, eating disorders and addiction. They are the front line for their families each day. It will be so much harder if they can’t count on what we’ve built so far.
The news of changes, proposed and real, comes fast and furious and there is too little attention paid to children, youth and families dealing with mental health challenges. We need to tell the stories, point out the impact and work with our partners. We’ve done it before. Mostly, it’s been effective. But all bets are off these days.
Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children’s Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.