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

1. 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

2. 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

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

4. 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

5. ...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...”

6. 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

7. Recovery Goal... Premorbid “normality”?... Symptom remission?... Off medications?... Reformulated self-concept?... Community Integration. (to live, love, learn, work... ...as, where, and how one chooses)

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

9. Recovery: To Most, An Outcome RECOVERY time

10. Recovery: Actually, A Process RECOVERY time

11. Recovery Process: 3 Components Psychiatric Rehabilitation Medical Medical RECOVERY Individual Empowerment time

12. Recovery: Empowerment Component Individual Empowerment Psychotherapy Peer Groups & Services time

13. Recovery: Medical Component Psychiatric Rehabilitation Hospitals Doctors Medical Medical RECOVERY Meds Individual Empowerment time

14. Recovery: Rehabilitation Component Psychiatric Rehabilitation Illness Management & Recovery Supported Housing Supported Education Medical Medical RECOVERY Supported Employment Assertive Community Treatment Family Psychoeducation Individual Empowerment time

15. 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

16. Psych Rehab: “Jersey Strong” Expertise

17. So... AWhole Recovery System Psychiatric Rehabilitation Illness Management & Recovery Supported Housing Hospitals Supported Education Doctors Medical Medical RECOVERY Supported Employment Meds Assertive Community Treatment Family Psychoeducation Individual Empowerment Psychotherapy Peer Groups & Services time

18. The Common Misperception of Relativity

19. Exaggerated Emphasis, Wrong Focus Psychiatric Rehabilitation Illness Management & Recovery Supported Housing Hospitals Supported Education Doctors Medical Medical RECOVERY Supported Employment Meds Assertive Community Treatment Family Psychoeducation Individual Empowerment Psychotherapy Peer Groups & Services time

20. 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

21. 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”...

22. 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.

23. 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

24. 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"

25. 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

26. 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

27. 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...

28. 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

29. Other resources available at: www.psychodyssey.net

30. Addendum 1

31. 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 dosingand 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.”

32. ...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”

33. 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.”

34. Addendum 2

35. 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

36. Critical Problem: Medicaid Rate Ratio... (Zuckerman et al., 2009) US 0.72 WY 1.43 AK 1.40 DE 1.00 PA 0.73 CA 0.56 NY 0.43 NJ 0.37 50th!

37. Critical Problem: Provider shortage(Decker, 2013) % doctors accepting