Rep. Tim Murphy (R-Pa.) recruited three heavy weights to plug his Helping Families in Mental Health Crisis Act legislation yesterday (June 16th) at a Capitol Hill congressional hearing.
In what easily was the most compelling written testimony submitted during the three hour hearing, Virginia State Senator Creigh Deeds wrote about his efforts to help his mentally disturbed son, Gus, before the youth ended his life:
HIPAA prevented me from accessing the information I needed to keep him safe and help him towards recovery. Even though I was the one who cared for him, fed him, housed him, transported him, insured him, I was not privy to any information that could clarify for me his behaviors, his treatment plan, and symptoms to be vigilant about.
I did not know his diagnosis, prescription changes, and necessary follow-up. I had sought to have him hospitalized earlier, so he was wary of my having any information. So I was in the dark as I tried to advocate for him in the best way I could with the best information I had…
While there is no panacea, there are things to be done to improve the lives of those with mental illness, promote better outcomes, and to help give some relief to families who are struggling every day. We can accomplish this without jeopardizing the civil liberties of those with mental illness.
Rep. Murphy also recruited former Rep. Patrick J. Kennedy and the past president of the American Psychiatric Association Dr. Jeffrey Liberman, to lobby for passage of his bill.
While Deeds criticized HIPAA, Kennedy assumed the role of a mental health Henry Kissinger by urging Republicans and Democrats to work together to get reforms in place. His plea was important because Democrats stymied Murphy’s bill last year. Dr. Liberman, meanwhile, testified in favor of specifics in Murphy’s legislation.
Witnesses who spoke against Murphy’s bill included: Steve Coe, executive director of Community Access; Mary Jean Billingsley, representing the National Disability Rights Network, and veteran consumer advocate, Harvey Rosenthal, executive director of the New York Association of Psychiatric Rehabilitation Services.
You can read all of the written testimony here.
The National Disability Rights Network was among the groups leading the campaign against Murphy’s bill last year so Billingsley’s testimony was not surprising. She talked poignantly about her son and how Protection and Advocacy officials (who Murphy has criticized and targeted) helped her family. While this was Harvey Rosenthal’s first time testifying before the Energy & Commerce Committee about the legislation, he worked behind the scenes last year to kill Murphy’s legislation. For context, if you consider Dr. E. Fuller Torrey, the psychiatrist who many credit as being the fundamental architect of Murphy’s original bill, as being on one end of the mental health spectrum, then veteran advocate Harvey Rosenthal would be on the opposite end.
What was most surprising to me was the appearance of another witness — the new executive director of Mental Health America. In his short written testimony, Paul Gionfriddo, wrote:
We recognize that the legislation in its current form is not a finished product and that it will be changed and amended as it moves through the legislative process. So long as it continues to emphasize prevention strategies, early identification and intervention, integration of health, behavioral health and other services, and lay the groundwork for recovery, we believe we and others will be able to support it fully.
MHA is the second largest mental health organization in the country (after the National Alliance on Mental Illness) and its former executive director not only testified against Murphy’s bill last year but tangled with the congressman during a heated and a memorable Q & A. Winning the guarded support of MHA is a major achievement for Murphy. MHA was founded by persons with mental illnesses and has historically been the leading voice of consumers on Capitol Hill. (NAMI has been viewed as a predominately parent organization. Ironically, Paul Gionfriddo and his wife, Pam, have a son with mental illness who is the subject of Paul’s book, Losing Tim: How Our Health and Educational Systems Failed My Son With Schizophrenia. When I met them at the MHA national convention a few weeks ago, both spoke openly to me about their frustration trying to get meaningful help for Tim.)
Winning guarded support from MHA, getting the backing of a prominent Democrat in Patrick Kennedy, and appealing to legislators’ heart-strings through state Sen. Creigh Deeds was an inspired trifecta by Murphy. NAMI is on record supporting Murphy’s bill, even though no one from NAMI testified at the hearing and some members are vocally opposing it. Linda Rosenberg, the CEO of the National Council for Behavioral Health, the largest organization representing mental health providers, was quoted in a Murphy-issued press release supporting his bill. Of course, the Treatment Advocacy Center, which is overseen by Dr. Torrey, is pushing for its passage.
But it still has critics, including the Bazelon Center for Mental Health Law and several advocacy groups that receive federal funds that most likely will be curtained if Murphy’s legislation becomes law, including the National Empowerment Center run by Dr. Daniel B. Fisher, who was a frequent target of Murphy’s in previous hearings.
Last year, the Democratic leadership introduced a poison bill to kill Murphy’s. While the Democrats haven’t taken that step yet, Rep. Doris Matsui (D-Ca.) introduced legislation called Including Families In Mental Health Recovery Act shortly after Murphy re-submitted his bill and called for major changes in HIPAA intended to give “caregivers” greater access to a loved one’s private medical records. Matsui’s Democratic alternative is designed to block language in Murphy’s. At the hearing yesterday, she argued that changing HIPAA:
“Won’t fix anything. The root problem is awareness of what is and isn’t allowed under the law.”
Her bill would require the federal government to do a better job educating hospitals and providers about what HIPAA requires rather than modifying the law.
I’ll end this blog by quoting Senator Deeds’ testimony:
Government was not envisioned to work quickly. And we are geared toward incremental policy changes.
And then he added:
But I am telling you, the time for action is now. Families are struggling. People are dying. Families are grieving.
Virginia State Senator Creigh Deeds
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