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

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

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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

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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

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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

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...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...”

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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

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Recovery Goal...

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

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

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

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

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Recovery: To Most, An Outcome

RECOVERYtime

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Recovery: Actually, A Process

RECOVERYtime

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Recovery Process: 3 Components

RECOVERY Psychiatric Rehabilitation

Med

ical

Individual Empowermenttime

Medical

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Recovery: Empowerment Component

Individual EmpowermentPsychotherapy

time

Peer Groups & Services

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Recovery: Medical Component

RECOVERY Psychiatric Rehabilitation

Med

ical

Individual Empowermenttime

Medical

Hospitals

Doctors

Meds

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Recovery: Rehabilitation Component

RECOVERY Psychiatric Rehabilitation

Med

ical

Individual Empowerment

Supported EducationSupported Housing

Supported Employment

Illness Management & Recovery

Family PsychoeducationAssertive Community Treatment

time

Medical

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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

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Psych Rehab: “Jersey Strong” Expertise

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A Whole Recovery System

RECOVERY Psychiatric Rehabilitation

Med

ical

Individual EmpowermentPsychotherapy

Supported EducationSupported Housing

Supported Employment

Illness Management & Recovery

Family PsychoeducationAssertive Community Treatment

time

Medical

Hospitals

Doctors

Meds

Peer Groups & Services

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The Common Misperception of Relativity

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Exaggerated Emphasis, Wrong Focus

RECOVERY Psychiatric Rehabilitation

Med

ical

Individual EmpowermentPsychotherapy

Supported EducationSupported Housing

Supported Employment

Illness Management & Recovery

Family PsychoeducationAssertive Community Treatment

time

Medical

Hospitals

Doctors

Meds

Peer Groups & Services

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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

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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”...

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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.

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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

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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"

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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

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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

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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...

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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

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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

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Addendum

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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

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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)

𝑥=𝑴𝒆𝒅𝒊𝒄𝒂𝒊𝒅 𝑟𝑎𝑡𝑒𝑀𝑒𝑑𝑖𝑐𝑎𝑟𝑒𝑟𝑎𝑡𝑒

% doctors accepting

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