Comments on A.2685 from a NJ service user’s father

transcript

Testimony before the NJ Assembly Committee on Human Services Thomas H. Pyle (www.psychodyssey.net), Trenton, NJ, February 24, 2014

Consider...A segment of our fellow New Jerseyans...

.... dying 25 years earlier than the rest of us

... 85% unemployed

... ostracized, victimized, usurped, feared

... often forced against their wills

... often roughly served in a disjointed system

One New Jerseyan’s care experience... In a 10 month period in 2011...

Police encounters 5Arrests 1Calls to Crisis Center 3Hospitalizations 10Outpatient programs 3Court appearances 1Prescribing psychiatrists/APNs 14Diagnoses 3Meds changes over 10Outside Therapists 2Group sessions InnumerableInstitutional case managers 12Ambulance rides 6

Elements of that experience...

Insufficient meds availability

Excessive police action

Foiled efforts to get help

Failed transition to aftercare at discharge

Abrupt treatment

Differing diagnoses

Exposed to violence (in a state hospital)

Bureaucratism

...and now the Legislature proposes:

Expand IOC: “In any county [where it] has not been implemented, a court may assign a person determined to be in need of involuntary commitment to treatment to an outpatient treatment provider...”

Strengthen IOC: “...if the patient’s compliance with taking the medication is of concern to the physician prescribing the medication, the physician may order that the medication be administered by a periodic depot dosage...”

Who am I? 20 years in banking 10 years in non-profit 61 years a New Jerseyan

Raised here, schooled here, live here, work here

Father to a son 7 years navigating the maelstrom Helper of other families (see: www.psychodyssey.net)

A “lived-experience expert” ...schizophrenia ... New Jersey’s mental health system ... involuntary commitment

Recovery Goal...

Premorbid “normality”?... Symptom remission?...Off medications?... Reformulated self-concept?...

Community Integration.(to live, love, learn, work...

...as, where, and how one chooses)

...based on Recovery Principles(Substance Abuse and Mental Health Services Administration, 2004)

Recovery: To Most, An Outcome

RECOVERYtime

Recovery: Actually, A Process

RECOVERYtime

Recovery Process: 3 Components

RECOVERY Psychiatric Rehabilitation

Individual Empowermenttime

Medical

Recovery: Empowerment Component

Individual EmpowermentPsychotherapy

Peer Groups & Services

Recovery: Medical Component

Individual Empowermenttime

Medical

Hospitals

Doctors

Recovery: Rehabilitation Component

Individual Empowerment

Supported EducationSupported Housing

Supported Employment

Illness Management & Recovery

Family PsychoeducationAssertive Community Treatment

Medical

Psych Rehab: Evidence-Based Practices(Pratt, Gill, Barrett, & Roberts, 2007)

Illness Management and Recovery Integrated Dual Disorder Treatment Assertive Community Treatment Family Psychoeducation Supported Employment

Supported Education Supported Housing Other “promising” practices

Psychiatric Rehabilitation Recovery

Psych Rehab: “Jersey Strong” Expertise

So... A Whole Recovery System

Medical

Hospitals

Doctors

The Common Misperception of Relativity

Exaggerated Emphasis, Wrong Focus

Medical

Hospitals

Doctors

A.2685 could lead to... Denying a citizen’s freedom

Violating a citizen’s rights

Breaking therapeutic bonds

Violating recovery principles

Violating a citizen’s body

Forcing medication into a citizen

Further stigmatizing already marginalized citizens

Consider: “Forced depot dosage...” Which meds?

By what criteria?

For what periods?

In what amounts?

For how long?

After what consultation?

With whom?

Based on what history?

With (or without) what other treatment?Also, many service users don’t know “depot dosage”...

Violence: Gross misperception(Davidson, 2013; Federal Bureau of Investigation, 2013)

“Untreated mental illness too often leads to harmful or violent behavior. In recognition of that reality...”

What reality?

Mental illness Cause of violence? ~ 4%. Cause of gun violence? 2%. 14x more likely victimized than arrested.

cf: Gang violence: 50-90% of cause for violence, depending on jurisdiction.

Mental Illness Violence?(Torrey, 2008; Federal Bureau of Investigation, 2013; Elbogen & Johnson, 2009)

Only a very small association... ~1% of U.S. population has SMI (~4,000,000) ~1% of those with SMI considered “dangerous”

(~40,000)~ 0.01% of the total U.S. population

Untreated mental illness + substance abuse.+ other factors (i.e., homelessness)

cf: Gangs

1,400,000 members in 33,000 gangs Trenton: 5 gangs with > 100 members

Involuntary Outpatient Tx1: For(Cutler-Drill & Schilling, 2008)

Utilitarianism: Greatest good for greatest number Medical Ethics: If Tx would help, it should be provided Incapacity: Sometimes one can’t act in own self interest

Beneficence: Others should act in patient’s best interest Communitarianism: The common good should prevail. Social responsibility: The weak must be protected.

Psychiatry: Early intervention leads to better outcomes. Research: Less rigorous research shows Tx efficacy

1"Tx" = a medical abbreviation for "treatment"

Involuntary Outpatient Tx: Against(Cutler-Drill & Schilling, 2008)

Individual rights: Mandatory Tx violates privacy, rights. “Do no harm”: Some Tx is harmful (e.g. side effects). Autonomy: Personal autonomy is paramount.

Psychology: Mandatory Tx may discourage Tx seeking. System: Were the system better, mandatory tx not

needed. Patient-centered care: Mandatory tx violates this.

Stigma: Mandatory Tx further stigmatizes Research: More rigorous research (e.g., RCT2) is lacking.

2RCT: Randomized Controlled Trial, the "gold standard" of scientific research

Evidence Against (from 2 RCTs2)Kisely, S. R., Campbell, L. A., & Preston, N. J. (2005). Compulsory community and involuntary outpatient treatment for people with severe mental disorders. Cochrane Database of Systematic Reviews

“...no significant difference in service use, social functioning or quality of life compared with standard care.”

“...no evidence of cost effectiveness...”

“...difficult to conceive of another group in society that would be subject to measures that curtail the freedom of 85 people to avoid one admission to hospital or of 238 to avoid one arrest.”

2RCT: Randomized Controlled Trial, the "gold standard" of scientific research

Recommendations Legislate more completely for the problem

Slow down this particular bill Gather more evidence first Legislative a more strategic and comprehensive law

Receive more input from experts Rutgers Psych Rehab Dept., NJPRA Family members ESPECIALLY SERVICE USERS WITH LIVED EXPERIENCE

Attend to a much more immediate and consequential crisis: Medicaid rate-setting...

To conclude... Thank you for receiving this testimony.

Please prepare this legislation further. Keep relative proportions of the “components” in mind. Address the whole picture. Especially get the views of more “experts” (i.e., service users)

Please don’t feed prejudice and stigma. Keep the “risk” of violence in proper perspective. Avoid charged descriptors, e.g., “reality”, “mental illness” Legislate more care and less “control”...

Please also address Medicaid rate-setting If the outpatient system crashes, what good is IOC3?

3"IOC": Involuntary Outpatient Commitment

References

Cantor, J. C., Gaboda, D., Nova, J., & Lloyd, K. (2011). Health insurance status in New Jersey after implementation of the Affordable Care Act. New Brunswick, NJ: Rutgers Center for State Health Policy.

Castro, R. J. (2013, February 21, 2013). Benefits of Medicaid expansion won’t be achieved without sufficient resources, New Jersey Policy Perspective.

Cullen-Drill, M., & Schilling, K. (2008). The case for mandatory outpatient treatment. Journal of Psychosocial Nursing, 46(2), 33-41.

Davidson, L. (2013). Violence and mental illness: Testimony to Region II Regional Mental Health Board Legislative Breakfast. New Haven, CT.: Yale University School of Medicine.

Elbogen, E. B., & Johnson, S. C. (2009). The intricate link between violence and mental disorder: Results from the National Epidemiologic Survey on Alcohol and Related Conditions. Archives of General Psychiatry, 66(2), 152-161. doi: 10.1001/archgenpsychiatry.2008.537

Federal Bureau of Investigation. (2013). 2011 national gang threat assessment: Emerging trends. from http://www.fbi.gov/stats-services/publications/2011-national-gang-threat-assessment

Garfield, R. L. (2011). Mental health financing in the United States--A primer (pp. 46): Kaiser Commission on Medicaid and the Uninsured. Retrieved from http://www.kff.org/medicaid/upload/8182.pdf.

Kisely, S. R., Campbell, L. A., & Preston, N. J. (2005). Compulsory community and involuntary outpatient treatment for people with severe mental disorders. Cochrane Database of Systematic Reviews(3). doi: 10.1002/14651858.CD004408.pub2.

Pratt, C. W., Gill, K. J., Barrett, N. M., & Roberts, M. M. (2007). Psychiatric rehabilitation (2nd ed.). New York: Elsevier.

Substance Abuse and Mental Health Services Administration. (2004). National consensus statement on mental health recovery. Washington, DC. : U. S. Department of Health and Human Services. Retrieved from http://store.samhsa.gov/shin/content//SMA05-4129/SMA05-4129.pdf.

Torrey, E. F. (2008). The insanity offense. New York: W.W. Norton & Co., Inc.

Other resources available at: www.psychodyssey.net

Addendum 1

IOC: A sister wrote to me... (2/27/14)

“Thanks Tom. That is very informative. One of my family members was ordered into IOC for depot dosing and later on for mandatory ECT in [another state]. She hated it, it did keep her out of the hospital, it did create its own set of problems because it was so non-responsive to her side effects.

I would say that it should only be done if there is very close monitoring by an active case manager, who knows their client well and has the pull to effect changes if/when the plan should be modified. It did not appear to me that dispensing clinical staff ever played that monitoring role with my sister; they just dispensed the treatment and done.”

...So I wrote back... (2/28/14)

“A harrowing tale... May I ask, what was the level of family involvement of this loved one at the time? If the loved one and her family members were engaged, did the system engage the family members to their satisfaction? Or did the loved one go through this process alone, without his or her family involved? Tom”

And the sister responded... (2/28/14)

“Hi Tom: This sister lives in [ ] with no family near by. She has never approved the sharing of information much less involvement. The only time I experienced so called involvement was prior to one of her hospital discharges, when her psychiatrist make a show of involving me in a telephone conference call. During the call, it became apparent that over the 3 months of treating her, he had not even learned about her past history or court orders. It was dicey since I did not want to embarrass my sister; that being the greatest of all offenses.”

Addendum 2

NJ Medicaid Rate-Setting(Castro, 2013)

Medicaid funds ~2/3rds of all public mental health.

NJ’s Medicaid-funded mental health “managed care”

An “administrative services organization” to take charge

New NJ Medicaid eligibles: 234,000 ( = 23%)

My worries: Process not going well Not enough providers woefully underpaid Lots of “access”, but little “availability” No capital for necessary investment As agencies as squeezed, services will suffer NJ’s community mental health system could crash

US 0.72

WY 1.43AK 1.40DE 1.00PA 0.73CA 0.56NY 0.43

NJ 0.3750th

Critical Problem: Medicaid Rate Ratio... (Zuckerman et al., 2009)

Critical Problem: Provider shortage(Decker, 2013)

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% doctors accepting

Comments on A.2685 from a NJ service user’s father

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