Cuts Cutting Into the Possibility of Recovery 2004

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Cuts Cutting Into the Possibility of Recovery 2004 American Psychiatric Association Meeting New York, Cuts Cutting Into the Possibility of Recovery 2004 American Psychiatric Association Meeting New York, NY Symposium: Wither Go the States presented by Tom Lane May 4, 2004

The Goal of a Transformed System: Recovery • Science has shown that having hope The Goal of a Transformed System: Recovery • Science has shown that having hope plays an integral role in an individual’s recovery. The President’s New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental Health Care in America, Final Report, July 2003 2

Hope: Dictionary Definitions Verb: - hoped, hoping, hopes 1. To wish for something with Hope: Dictionary Definitions Verb: - hoped, hoping, hopes 1. To wish for something with expectation of its fulfillment. 2. Archaic. To have confidence; trust. Source- The American Heritage® Dictionary of the English Language, Fourth Edition Copyright © 2000 by Houghton Mifflin Company. 3

Hope: Dictionary Definitions Noun: - hope 1. A wish or desire accompanied by confident Hope: Dictionary Definitions Noun: - hope 1. A wish or desire accompanied by confident expectation of its fulfillment. 2. Something that is hoped for or desired: Success is our hope. Source- The American Heritage® Dictionary of the English Language, Fourth Edition Copyright © 2000 by Houghton Mifflin Company. 4

The Price of Hopelessness Does what we know sound like it promotes hope? 5 The Price of Hopelessness Does what we know sound like it promotes hope? 5

The costs of cuts Lost Productivity • The Surgeon General’s 1999 report, Mental Health; The costs of cuts Lost Productivity • The Surgeon General’s 1999 report, Mental Health; A Report of the Surgeon General, revealed that the cost to the U. S. economy due to lost productivity caused by mental illnesses was $63 billion! 6

The costs of cuts Reliance on public benefits In 2001, 36% of Supplemental Security The costs of cuts Reliance on public benefits In 2001, 36% of Supplemental Security Income (SSI) recipients nationally were diagnosed with mental illnesses. This is, by far, the largest category of disability within the SSI program. Source- Social Security Administration, SSI statistics for 2002 7

Homelessness • Approximately 40% (240, 000) of the 600, 000 people who are homeless Homelessness • Approximately 40% (240, 000) of the 600, 000 people who are homeless in America live with serious and persistent mental illnesses. Many of these individuals also live with co-occurring substance abuse disorders. Source – U. S. Conference of Mayors 8

Victimization • Preliminary results of a study of 1000 psychiatric aftercare patients in Chicago Victimization • Preliminary results of a study of 1000 psychiatric aftercare patients in Chicago show that a person with a serious mental illness is more than 7 times more likely to be the victim of any crime, including 9 times more likely to be the victim of violent crimes, and 24 times more likely to be the victim of rape. 1 9

Especially Women • Women face the risk of additional victimization along gender lines by Especially Women • Women face the risk of additional victimization along gender lines by service providers: they may be discredited as witnesses, blamed for complicity, or not taken seriously in their reporting of crimes perpetrated against them. 2 10

Suicide Five years ago, Tipper Gore and then Surgeon General David Satcher hosted a Suicide Five years ago, Tipper Gore and then Surgeon General David Satcher hosted a press conference at which the Surgeon General unveiled a blueprint to prevent suicide in the United States. 11

Yet • More people die from suicide than from homicide. In 2000, there were Yet • More people die from suicide than from homicide. In 2000, there were 1. 7 times as many suicides as homicides. • Overall, suicide is the 11 th leading cause of death for all Americans, and is the third leading cause of death for young people aged 15 -24. Source- Centers for Disease Control and Prevention. Web-based Injury Statistics Query and Reporting System (WISQARS) [Online]. (2002). 12

Trauma • A study conducted in an urban mental health center found that 94% Trauma • A study conducted in an urban mental health center found that 94% of clients had a history of trauma and 42% had PTSD. 3 13

Abuse and Neglect • As many as two-thirds of people in treatment for substance Abuse and Neglect • As many as two-thirds of people in treatment for substance abuse report experiencing childhood abuse or neglect. Source- Center for Substance Abuse Treatment publication Substance abuse treatment for persons with child abuse and neglect issues: TIP #36 DHHS. Pub. No. (SMA) 00 -3357 14

The Real Costs of Cuts • homelessness • unemployment • victimization • trauma and The Real Costs of Cuts • homelessness • unemployment • victimization • trauma and abuse • social isolation • discrimination and stigma • suicide 15

Transportation: It’s bad enough Accessible transportation is necessary for people with disabilities to go Transportation: It’s bad enough Accessible transportation is necessary for people with disabilities to go to work, get an education, receive medical care, and to have an active, inclusive role in society. • Barriers – a lack of available transportation options (due in large part to shortages of public transportation in rural and suburban areas) – lack of access to existing transportation services. 16

Cuts will make it worse • Proposed cuts in state Medicaid budgets • Restrictions Cuts will make it worse • Proposed cuts in state Medicaid budgets • Restrictions on access to and elimination of optional services • No trend to increase transportation budgets at local levels • Medicaid transportation vendors will be forced to transport for only “medically necessary services” 17

Housing: It’s already bad enough • Federal, state, and local public housing is a Housing: It’s already bad enough • Federal, state, and local public housing is a system just as complex and difficult to navigate as the public mental health system itself. • Policies enacted by Congress in 1992 and 1996 have allowed public and assisted-housing providers to designate housing as "elderly only, " resulting over the past decade in the loss of an estimated 273, 000 units of affordable housing for people with disabilities. 18

Housing: It’s already bad enough • The average rent for a modest, onebedroom apartment Housing: It’s already bad enough • The average rent for a modest, onebedroom apartment cost, on average, 105 percent of a person's monthly SSI check. Source- The 2002 Priced Out report produced by the Technical Assistance Collaborative and Consortium for Citizens with Disabilities 19

Cuts will make it worse • Housing shortages continue to be a primary barrier Cuts will make it worse • Housing shortages continue to be a primary barrier to recovery • Changes in HUD Section 811 vouchers will reduce renewals of expiring rental subsidies • Overall funding for the Section 8 voucher program is expected to be reduced by $1. 66 billion in FY 2005 20

Experiences in ‘Adult’ Housing • low personal needs allowance • lack of money for Experiences in ‘Adult’ Housing • low personal needs allowance • lack of money for clothing • inability to pay for air conditioning fees charged by some home administrators • lack of access to more independent housing • poor medical services • poor quality food • lack of telephone service 21

Hope against Hope Idiom: To hope with little reason or justification. Source- The American Hope against Hope Idiom: To hope with little reason or justification. Source- The American Heritage® Dictionary of the English Language, Fourth Edition Copyright © 2000 by Houghton Mifflin Company. 22

Transformation towards Recovery • Seeing people as whole persons beyond their labeled identity is Transformation towards Recovery • Seeing people as whole persons beyond their labeled identity is integral to recovery 4 • Attention must be paid to basic needs in safe and affordable housing, health care, income, employment, education and social integration 4 23

Transformation towards Recovery • A recovery orientation will require close attention to fundamental rights Transformation towards Recovery • A recovery orientation will require close attention to fundamental rights and needs. Re-orientation away from coercion requires alternative resources as well as training. 4 • Special attention is needed for people who have experienced trauma or who have substance abuse disorders. 4 24

Transformation towards Recovery • Adequate resources are needed to fund and support consumer voice Transformation towards Recovery • Adequate resources are needed to fund and support consumer voice and consumer leadership development. 4 • Hope and empowerment are critical and their relationship to recovery warrants further research attention. 4 25

Quality & Culture • Culture must be acknowledged in all quality systems from conception Quality & Culture • Culture must be acknowledged in all quality systems from conception through implementation and evaluation. • Quality services and supports must reflect the cultural needs of those accessing services. • Cultural needs include linguistic preferences; Linguistic Competence as well as Cultural Competence • There are many cultural communities 26

Quality & Satisfaction With What? Quality, when defined and described by an individual relevant Quality & Satisfaction With What? Quality, when defined and described by an individual relevant to what’s going on in their lives, is not always aligned with ‘systems’ definitions and descriptions Systems level measures and definitions don’t always reflect what individuals see in their day to day lives (e. g. - Housing vs. . a Home) Just as recovery is uniquely experienced by each person moving towards wellness, so too are experiences of quality and satisfaction. 27

Peer Supports: Surgeon General’s Reports Call To Action to Prevent Suicide, 1999 recommended the Peer Supports: Surgeon General’s Reports Call To Action to Prevent Suicide, 1999 recommended the development and implementation of peer supports and natural community helpers as resources. Mental Health: A Report of the Surgeon General 1999 recognized self-help as an important adjunct to traditional mental health services and concluded that self-help activities serve as powerful agents for change in service programs and policy. 28

Peer Supports: Broadly Acknowledged The Federal Taskforce on Homelessness and Severe Mental illness identified Peer Supports: Broadly Acknowledged The Federal Taskforce on Homelessness and Severe Mental illness identified Peer, Family, and other natural supports as cornerstones for services, in addition to: • Access, Empowerment, and Responsibility • Diversity and Flexibility • Local, State, and Federal participation Source- Federal Task Force on Homelessness and Severe Mental Illness. Outcasts on Main Street. Washington, DC: Interagency Council on the Homeless, 1992 29

States Use Peer Support States that have moved beyond the “service renaming” stage to States Use Peer Support States that have moved beyond the “service renaming” stage to implement and operationalize recovery in the mental health system have used support for consumer operated services as a successful strategy. 5 30

Medicaid & Peer Supports • Georgia’s very successful peer specialists project uses Medicaid funds Medicaid & Peer Supports • Georgia’s very successful peer specialists project uses Medicaid funds to provide consumers with peer support • Limitations on ‘optional’ services will severely restrict innovations like the Georgia Peer Specialist model 31

We Know Self-Help Works • Borkman, T. (1975). “Experiential Knowledge: A New Concept for We Know Self-Help Works • Borkman, T. (1975). “Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups. ” Social Service Review, 50 (3): 445 -456. • Campbell, J. , & Schraiber, R. (1989). The well-being project: Mental health clients speak for themselves. Sacramento, CA: California Department of Mental Health • Carpinello, S. E. , Knight, E. L. , & Jatulis, L. L. (1992). A study of the meaning of self-help, self-helpl group processes, and outcome. Proceeding of the Third Annual Conference on State Mental Health Services Research and Program Evaluation. Alexandria, VA: NASMHPD, Inc. 32

We Know Self-Help Works • Deegan, P. E. (1996). Recovery as a journey of We Know Self-Help Works • Deegan, P. E. (1996). Recovery as a journey of the heart. Psychiatric Rehabilitation Journal, 19(3), 91 -97 • Dornan, D. H. , Felton, C. , & Carpinello, S. (2000, Nov. 14) Mental health recovery from the perspective of consumer/survivors. Presentation at the American Public Health Association Annual Meeting, Boston, MA. • Young, S. L. , & Ensing, D. S. (1999). Exploring recovery from the perspective of people with psychiatric disabilities. Psychiatric Rehabilitation Journal, 22(3), 219 -231 33

Self-Help, Budgets, and Hope Inclusion of consumer-operated/peer support services within the continuum of community Self-Help, Budgets, and Hope Inclusion of consumer-operated/peer support services within the continuum of community care is expanding the capacity of the mental health service delivery system and promoting recovery in cost-effective ways. 34

Self-Help, Budgets, and Hope Peer-run support services holds promise for improved outcomes for a Self-Help, Budgets, and Hope Peer-run support services holds promise for improved outcomes for a public mental health system that is: • under-funded • fails to reach the majority of those with mental illnesses • often delivers services that are ineffective 35

Self-Help, Budgets, and Hope The hope instilled in people recovering from mental illnesses through Self-Help, Budgets, and Hope The hope instilled in people recovering from mental illnesses through the dynamic exchange of peer support has the potential to foster hope and change for the mental health system. Source- Emerging New Practices in Organized Peer Support, a report from NTAC’s National Experts Meeting on Emerging New Practices in Organized Peer Support, March 17 -18, 2003 Prepared by Jean Campbell, Ph. D. & Judy Leaver, M. A. 36

Self-Help, Budgets, and Hope Supporting hope should not be a question of how much Self-Help, Budgets, and Hope Supporting hope should not be a question of how much it costs to do so, but rather of the human cost of not doing so. While hope may never be a billable service, it will always remain as foundational to the very essence of recovery and wellness. 37

For your consideration Another definition of hope Noun 1. A small bay; an inlet; For your consideration Another definition of hope Noun 1. A small bay; an inlet; a haven…. . . Source- Webster's Revised Unabridged Dictionary, © 1996, 1998 MICRA, Inc. 38

Hope is Priceless Hope is the thing with feathers-- That perches in the soul-- Hope is Priceless Hope is the thing with feathers-- That perches in the soul-- And sings the tune without the words-And never stops--at all-Emily Dickenson 39

References 1 -Linda Teplin. References 1 -Linda Teplin. "Criminal Victimization of the Mentally Ill, " Workshop on Crime Victims with Developmental Disabilities, National Research Council's Committee on Law and Justice, National Academy of Sciences, Irvine, CA, October 28 -30, 1999. 2 - Susan Salasin and Robert Rich. "Mental Health Policy for Victims of Violence: The Case Against Women. " International Handbook of Traumatic Stress Syndromes, ed. John P. Wilson and Beverley Raphael. New York: Plenum Press, 1993. 3 - Switzer, G. E. , Dew, M. A. , Thompson, K. , Goycoolea, J. M. , Derricott, T. & Mullins, S. D. (1999). Postraumatic stress disorder and service utilization among urban mental health center clients. Journal of Traumatic Stress, 12(1), 25 -39. 4 - Onken, S. J. , Dumont, J. M. , Ridgway, P. , Dornan, D. H. , & Ralph, R. O. “Mental Health Recovery: What Helps and What Hinders” October 2002 5 - Jacobson, N. , & Curtis, L. (2000). Recovery as a policy in mental health services: Strategies emerging from the states. Psychiatric Rehabilitation Journal, 23(4), 333 -341 40

Contact Information Tom Lane, Director Office of Consumer Affairs NAMI tlane@nami. org 703 -516 Contact Information Tom Lane, Director Office of Consumer Affairs NAMI [email protected] org 703 -516 -7996 41




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