Saturday, November 13, 2010

"Lived experience" is the buzz phrase for future mental health care

I am not a clinician.

But I am a parent of two children with mental health issues. As an adult who’s struggled with depression and takes wonder drugs for it, I am also considered a consumer of mental health services.

This “lived experience” may prove to be crucial in the future.

Change, you see, is on the horizon. I would say that the dark clouds of doom are looming, threatening to destroy us all, but that would depress me and I’d have to go lie down and read Kafka for the rest of the day.

The annual conference in Atlanta for the National Federation of Families for Children’s Mental Health began the day after Black Tuesday, Nov. 2. Many presentations were colored by that fact.

Andrea Barnes, policy wonk for the federation, said this on the opening day’s overview session: “What we know about the Republicans’ agenda is they want to roll back everything, especially prevention funds. The Affordable Health Care Act has some very important pieces regarding mental health. There is no guarantee that all the provisions will be enacted now that the Congress has changed.”

Much talk about change – the bad kind. Some gloom and doom.

But by the end of the conference, I felt hopeful that stressful times and creative thinking may bring about a new and more family- and community-centered way of taking care of our youth.

“We have to find alternative ways to do business,” said Gary M. Blau, Child, Adolescent and Family Branch, Substance Abuse and Mental Health Services Administration (SAMHSA). He urged us to embrace the reality of huge deficits and the changing face of Congress. He said that it was our “lived experience” that will make the difference.

This changing dynamic will not only need involvement from parents and youth and family members and the community. It will be crucial. “We need to implement things that work – things our young people have told us,” Blau said.

As I said earlier – I’m not a clinician. Nor am I part of a social services non-profit and treatment center. I am a lay person on a board for a UPLIFT, the federation affiliate in Wyoming. I do not know all the lingo and acronyms tossed around like confetti at these conferences. However, my wife and I have 20 years of experience helping our children with their mental health challenges.

Here’s a brief intro from Gary Blau as to how this world is changing.

He outlined five areas in substance abuse and mental health that SAMHSA and the federation would like to be included in benefit packages, such as those that are part of Medicaid and Medicare.

1. Respite care, so parents can get a break and even go back to work.
2. Therapeutic mentoring to extend services
3. Behavioral health consultation services. Monitor children in daycare and preschool and get help for those who need it. Can reduce the number of kids kicked out of daycare for aggressive behavior.
4. Use technology to deliver services. “Our kids come out treatment and don’t go to AA meetings. They do communicate via social network sites.” This can be used for e-therapy and peer counseling.
5. Parent and caregiver support services. He said that this is the number one issue for SAMHSA. “We need a cadre of parent support providers, and we’re working on a certification process.”

All of these acknowledge the fact that parents and youth are on the frontlines and know what’s needed. That’s a big change from 20 or even 10 years ago when parents often were blamed for their children’s failing – and therapy was something done to a teen and not with the teen.

These changes will be needed as budgets shrink and more Americans (32 million) enter the health care insurance system via the (mostly) Democratic Party’s reform package.

None of it can happen without advocacy. “If folks in this room don’t advocate, our very existence is threatened,” said Blau.

I consider this blog an advocacy tool. More to do, of course, both locally, statewide and in Congress.

For more info, go to the federation web site at or SAMHSA at For help in Wyoming, go to or call 307-778-8686.

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