Prepared for delivery by
DJ Jaffe
Executive Director, Mental Illness Policy Org
for a briefing by
Energy and Commerce Oversight and Investigations Subcommittee Majority Staff
Subcommittee’s Investigation of Federal Programs Addressing Severe Mental Illness
Thursday May 29, 2014

(PDF Version with attachments and footnotes)

My name is DJ Jaffe and in early 1980s my wife and I become guardian for my sister-in-law who has perhaps the most serious mental illness: schizophrenia. Trying to get care for her led me to see how horrible the mental health system is and led to 30 years of pro-bono service to organizations trying to improve carel .

Our position is consistent with the majority report. It differs from some in the SAMHSA funded mental health industry. The reason is, we are not mental health advocates or advocates for the highest functioning. We are advocates for the most seriously mentally ill, the ones most likely to become headlines. Not all mental illness is serious. Twenty percent of adults over 18 have a diagnosable mental illness. But only 4% have a serious mental illness including the 1.1% with schizophrenia and the 2.2% with severe bipolar disorder.

We have to stop ignoring these most seriously ill. Until the early 1960s virtually all mental health expenditures were spent on the most seriously ill in state psychiatric hospitals. Today federal dollars are instead spent improving the mental health of all citizens including people without any mental illness. As a result, 164,000 are homeless and over 300,000 incarcerated , . A disproportionate number are people of color. , Parents who beg for treatment for adult children known to have serious mental illness can not get it. Meanwhile the system funds everything else.

We know how to help the most seriously ill. We have to prioritize federal spending. Send the seriously ill to the head of the line rather than jails shelters prisons and morgues. Replace mission creep with mission control. Reform HIPAA so parents can get the information about seriously mentally ill loved ones they need to help them. Create more hospital beds for the few who can not survive safely in the community, require SAMHSA to focus on serious mental illness and PAIMI to stop working to prevent that .
We have to recognize that some seriously mentally ill are so sick, they don’t know they are sick and therefore will not accept treatment that is offered to them. It’s called anosognosia . Perhaps most importantly, we need to expand the use of Assisted Outpatient Treatment. AOT is only used after voluntary treatment has failed.
AOT has been extensively studied and proven to work on the hardest to treat. It is only for a tiny subset who have accumulated multiple episodes of homelessness, hospitalization, arrest, incarceration or violence associated with going off treatment. After full due process including the right to an attorney, it allows judges to order them into six months of mandated and monitored community treatment. AOT reduces serious violence 66%. It reduced homelessness, arrest, hospitalization, and incarceration over 74% each . Neither peer support nor Trauma informed care have been proven to do that. Consistent with the spirit of Olmstead AOT prevents the use of restrictive and inhumane inpatient commitment and incarceration. It saves taxpayers 50% of the cost of care.
It is perhaps the most humane thing we can do. It provides an off-ramp before incarceration…a fence by the edge of a cliff, rather than an ambulance at the bottom.
The committee heard from police chiefs, sheriffs, judges, homeless advocates, parents and children of the most seriously ill in support of AOT. The only opposition comes from vocal SAMHSA funded groups who raise objections not based on the facts. AOT does not take away everyone’s rights; allow force treatment or drive people from care. 80% of those enrolled said AOT helped them get well and stay well. It does not cause stigma. Those who received AOT felt less stigma than those who didn’t.
We have to stop ignoring the seriously ill. Police Chief Biasotti said it best when he told the committee :

“We have two mental health systems today, serving two mutually exclusive populations: Community programs serve those who seek and accept treatment. Those who refuse, or are too sick to seek treatment voluntarily, become a law enforcement responsibility. …(M)ental health officials seem unwilling to recognize or take responsibility for this second more symptomatic group. Ignoring them puts patients, the public and police at risk”

I thank the committee and Representative Murphy who introduced the Helping Families in Mental Health Crisis Act and especially my fellow Democrats who supported this bill. We Dems have too often and for too long been unwilling to admit unpleasant truths like not everyone recovers, sometimes hospitals are needed; and left untreated a small subset of the most seriously ill do become violent.
Pass HR 3717 so we can start moving from a system that requires tragedy, to one that prevents it.
I’ve attached to my statement a comparison of HR 3717 with HR 4574 and other fact sheets

Comparison of provisions related to serious mental illness in adults in the Helping Families in Mental Health Crisis Act (HR 3717) and in the Strengthening Mental Illness in our Communities Act (HR 4574)

Kendra’s Law Research