(5-20-20) How important is it for us to tell our personal stories – to put a human face on mental illness?

Six years ago, Senators Bill Cassidy (R. La) and Chris Murphy (D. Conn.) got Congress to pass a major mental health bill, Now they want to improve their legislation by addressing concerns their first bill didn’t cover. In a recent interview on NPR, which consistently covers mental illness, they spoke about their agenda. They also mentioned how my book helped bring them together.

This is why I believe telling our stories is the only way we can make the public aware of how badly we treat individuals with serious mental illnesses and their families in our country. Speaking out can make a difference and you never know who might be influenced by your words.

Two Senators Are Working Across The Aisle To Address The Mental Health Crisis

8 minute listen

Transcript of NPR broadcast 5-19-20

AILSA CHANG, HOST:

Mental health care in the U.S. has long been riddled with the same problems – not enough funding, not enough programs, not enough providers. And the pandemic has only worsened this crisis. Rates of depression and other mental illness have soared.

BILL CASSIDY: Everybody has a personal experience with somebody who has had serious mental illness.

CHANG: That is Republican Senator Bill Cassidy of Louisiana. He and his Democratic colleague, Senator Chris Murphy of Connecticut, are working together to renew a mental health reform bill in Congress.

CHRIS MURPHY: So Bill and I kind of found each other six years ago and developed, you know, what, at the time, was really the most comprehensive piece of mental health reform legislation that Congress had seen in a decade.

CHANG: That bill, which was signed into law in 2016, is set to expire this year. Now the two senators are working across the aisle to get Congress to reauthorize what they say is an improved version of the legislation. And this increasingly rare bipartisan partnership, well, Senator Cassidy says it emerged from a well-worn book.

CASSIDY: I was reading a book by Pete Earley called “Crazy,” a journalist who had written about his son’s travails with mental illness and in the criminal justice system. And, Chris, let me turn the story over to you.

MURPHY: Well, so I was interested in working on mental health but needed a partner. And I ran into an advocate on a bus who told me that I should call Bill Cassidy because he saw Bill Cassidy walking into a hearing the other day with this worn out, dog-eared copy of “Crazy.” And that’s what I did. I read the book first. I reached out to him. He had just gotten to the Senate. We found out that there’s a lot of things that Bill and I disagree on.

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(5-3-22) On the final page of my book about my son and mental illness, I write: “Mental illness is a cruel disease. No one knows whom it might strike or why.”

I thought about these words this past weekend when I learned that Naomi Judd, the iconic country star and one-half of the mother-daughter duo The Judds, had ended her life at age 76.

Why?

She was striking, famous, talented, successful and well-loved. Perhaps the answer can be found in her own words. In 2018, she talked openly in a People magazine story about her struggles with depression .

“Nobody can understand it unless you’ve been there. Think of your very worst day of your whole life – someone passed away, you lost your job, you found out you were being betrayed, that your child had a rare disease – you can take all of those at once and put them together and that’s what depression feels like.”

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(4-27-22) I’ve often written about the power of a single individual to change our society and have quoted Margaret Meade who famously said: “Never doubt that a small group of thoughtful committed individuals can change the world. In fact, it’s the only thing that ever has.” Here is an inspiring story that confirms her quote.

When COVID hit, Karl Polzer found it difficult to keep in touch with a family member (name being withheld for privacy) who had been sent to Western State Hospital in Staunton, Virginia. The young adult had been arrested on misdemeanor charges in February 2020 during a major psychotic break and sent to the state hospital for competency restoration.

Within weeks, Karl and Jane Polzer were told that in-person hospital visits were being suspended because of COVID. Maintaining contact with a patient through telephone calls became problematic. When the Polzers telephoned the hospital, they had to depend on a patient within earshot of the ward’s phone answering it and locating the person being called.

In May 2020, the couple became concerned when they were told their family member was unable to come to the phone. No one would say why. They began calling the hospital’s staff and eventually arranged a call. They were stunned. Their loved one could barely speak and had become partially paralyzed. Polzer learned it was because of an adverse drug reaction.

“During this time, we had no way to communicate with our family member, Polzer later told members of the Virginia House of Delegates during a Health, Welfare and Institutions Committee hearing. “We could not visit in person. We could not talk to him. And we could not see him. We felt powerless to help him.”

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(4-25-22) Dr. E. Fuller Torrey responded to my blog last week about CEO salaries and revenues at major mental health nonprofits.

“I was not paid $27,844 by the Treatment Advocacy Center (as reported). I have never taken any salary or been paid in any way from TAC.”

Lisa Dailey, TAC’s Executive Director, also wrote in an email that although the nonprofit’s most recent Form 990 was not listed on Guidestar, the internet reporting service which I used to analyze income, TAC’s most recent IRS reports are on its website.  

The nonprofit’s 2020 IRS form showed that it took in $2.5 million in gross revenues (contributions/income). TAC does not accept money from Big Pharma. It relies solely on contributions. NAMI and MHA accept pharmaceutical funds. TAC listed its overall worth (net assets after taxes and expenses) at $1.5 million. (Figures are rounded up.) This was an increase from 2019, when it reported net assets of $1 million.

I omitted a peer run organization in my list last week.

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(4-19-22) Mental Health America saw its gross receipts jump by $3 million during 2020. In total, it received $8.2 million in gross receipts, according to its IRS Form 990, as reported by Guidestar. In 2019, it received $5.1 million.

I’ve already reported that the National Alliance on Mental Illness had a $5.6 million jump in its donations/receipts during 2020. Overall, it received an impressive $27.5 million.

Increases in donations to both are being credited to public awareness of mental illnesses during COVID.

NAMI and MHA are generally regarded as the nation’s two best-known grassroots, mental health nonprofits. NAMI began as a parent run organization largely focused on schizophrenia. It now brands itself as the nation’s voice for all mental disorders and those families and individuals who are living with mental illnesses. MHA was created by former mental hospital patients and continues to be the voice of those with lived experiences.

NAMI listed net assets of $25.7 million during 2020 after deducting expenses. MHA’s net worth as a nonprofit was considerably less – $9 million.

Despite its much smaller balance sheet, MHA paid its President/CEO a higher compensation package in 2020 than NAMI paid its leader. Outgoing MHA CEO Paul Gionfriddo received $271,089 in salary, collected a $10,000 bonus, and ended up with a total compensation package of $295,271. By comparison, NAMI’s CEO, Daniel Gillison received $265,046 – or roughly $30,000 less than Gionfriddo.

MHA also hired Mary Giliberti, after she abruptly left her job as NAMI CEO in 2019. MHA paid her a compensation package worth $244,178 – only a tad bit lower than the $257,392 compensation that she’d received when she was NAMI’s top executive.

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(4-15-22) Is the federal government’s Institutions for Mental Disease (IMD) Exclusion outdated and actually harming Americans with serious mental illnesses?

Leslie Carpenter, the co-founder of Iowa Mental Health Advocacy and a member of the National Shattering Silence Coalition, told a federal panel that advises Congress and the Substance Abuse and Mental Health Services Administration (SAMHSA) that it is.

She made her argument during the public comment session at Wednesday’s (4-13) Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC).

In her remarks – limited to three minutes – she explained.

“This policy was enacted in hopes of ending atrocities occurring at our large state psychiatric hospitals by prohibiting Federal Matching Medicaid funds from being used by any facility with more than sixteen beds for people with “Mental Diseases” who are aged 18 – 64. This well-intentioned policy has been a legal form of discrimination on this population of people who have brain illnesses, which are not their fault and no one chooses, and no one deserves.

“The IMD Exclusion didn’t end the atrocities, it both relocated them and worsened them. It has resulted in 169,000 people being left untreated and under-treated across our country on our streets and unsheltered…In addition, 383,000 people with serious brain illnesses are in our jails and prisons, where far too many are untreated and, in many cases, in solitary confinement.

“And many more are dying every single day. They are clearly not better off “in the community.

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