Position Paper on Integrated Community Living for Mental Health Consumers

Liberty means basic respect for the right of a person with a disability to exercise control over his or her own life. Our society has gone some way toward realizing this right. Both the community in general and the agencies serving persons with disabilities are recognizing the basic value of freedom and independence. Certain unalienable Rights April 1987, The Final Report of the Governor's Task Force on services for Disabled Persons.

Mental health consumers/survivor/ex-patients have expressed their right and desire to live in communities of their choice, and to participate in the full range of community resources available to all citizens. This position paper represents the firm beliefs and expressed desires of the consumer movement in New Jersey, represented by the Board of Trustees and staff of Collaborative Support Programs of New Jersey, Inc. and Butterfly Property Management, Inc.

[Overview][Position Statements]

Why do well-intentioned policy makers and providers still hold onto notions that mental health consumers need to live in restrictive setting for long periods of time? A brief historical analysis may be helpful.
At one time, a long-term care model that isolated individuals (for their own good) was once the only and best treatment milieu available. Asylums were closed systems that separated patients from society. At that time there were very few social support networks, entitlement programs or medications, and consumers at least had a place that provided minimal care in an institution. To the degree that the mental health system continues to emulate this model with large psychiatric hospitals keeping patients for unjustifiably long periods of time it ignores recent developments in the field. Advances in psychopharmacology, consumer education about mental illness, and social and community support services have changed the picture considerably. A paradigm shift has occurred in which treatment has been steadily moving from institutions to community settings. Many parts of the mental health system, however, continue to be based on the confinements of the medical model and vestiges of the asylum. Despite the demonstrated effectiveness of community supports, a significant number of providers and funders still retain an institutional mentality.
This institutional mentality is based on the two guiding principles of (a) large-scale efficiencies of mass housing, and (b) a medical model of care. While the first principle retains little credibility in modern thinking, the medical model is still seen as a cornerstone of treatment and often with good results. However, the medical model is limited in its ability to provide long-term supports and opportunities for mental health consumers because of it's narrowly focused clinical perspective. While this may be an appropriate model in some acute care settings, it is a poor model for long-term treatment and support. When person experiences a psychiatric episode, a medical model of care, which includes assessment, clinical intervention and medication, might help restore a person's stability and help him or her move forward with their life.
However, this treatment comes with significant costs. The mentality supported by it reinforces a level of dependency that leads to a loss of people's skills that is detrimental to their well being, growth, and recovery. When people enter an institutional setting they lose at least 200 basic skills and the longer they remain in the setting the harder it is regain these skills upon discharge.
The focus of mental health services based on a medical model is on the treatment of illness rather than the identification of goals, preferences, interests and strengths of the individual. The system supports the dependent patient role and does not provide opportunities for persons to assume valued social roles necessary to achieve a decent quality of life.
"Disabled" individuals just like everyone else have deeply felt personal needs for dignity, for pleasures, for friendship, for hope for the future, and for a useful place within the community. When these needs to give are denied, their lives become sad and empty. That is exactly what happens when disabled people are taken out of their communities and placed instead in social service institutions where they are even further isolated. Institutionalization of this kind, though benign in its intention, creates problems that stand directly in the way of the process of dynamic community building." Kretzmann & McNight.p.69

[Top][Position Statements]

1. CSP-NJ and BPM fully endorse the Supreme Court's decision in Olmstead vs. L.C., which reinforces the rights of persons with disabilities under the Americans with Disabilities Act.
The ADA regulations say: "A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." 28 C.F.R. 130(d)
"Most integrated setting" means "a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible." 28 C.F.R. pt. 35, App. A, p.450.
In Olmstead v. L.C., the Supreme Court said:
"Unjustified isolation"is properly regarded as discrimination based on disability."
        (1) "Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life."
        (2) "Confinement in an institution severely diminishes the everyday life activities of individuals, including: family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment".

2. CSP-NJ and BPM support the State's decision to close Greystone Park Psychiatric Hospital and initiate the Redirection II Plan for community supports, housing and programs. This decision is consistent with state mental health policy to provide services in the least restrictive setting. Further, we believe that all existing large state psychiatric hospitals should be scheduled for planned closures with the development of more appropriate community based treatment and supportive services.
New Jersey has a good track record for reducing the number of people in state psychiatric hospitals and creating new community and housing services over the past ten years. These efforts are to be commended and strengthened as they have empowered many individuals to live self determined lives in the community. Long-term use of state psychiatric hospitals is not an appropriate or effective means for assisting mental health consumers with recovery. The Marlboro State Hospital Redirection Plan allowed for the creation of new and innovative community programs and opportunities for over 324 consumers to maintain community tenure with a continuum of support. The closure of Greystone Park Psychiatric Hospital and the implementation of Redirection II should be a planned step towards the closure of all New Jersey's large institutional state psychiatric hospitals, including Trenton State Hospital and Ancora State Hospital. We believe that quality care can not be provided in large institutional settings.

3. CSP-NJ and BPM believe that the CEPP (Conditionally Extended Pending Placement) status of current State Psychiatric Hospitals Patients must be addressed.
We are deeply troubled by the situation in New Jersey in which 40 to 50% of the patients in our State and County Hospitals are on CEPP status. There are currently over 1,000 patients on CEPP status who have had a hearing before a judge who has determined that they do not meet the criteria for commitment and should not be in a mental hospital. The only legal reason for keeping a person in a mental hospital against his/her will when he/she is on CEPP status is that there is no appropriate housing for the person to live in.
We believe that opportunities should be created, in compliance with the Olmstead vs. L.C. decision, for decent affordable, safe housing for all people on CEPP status in our state and county hospitals. It is harmful to keep a person in a restrictive mental hospital when they could be living in the community assuming roles and responsibilities of citizenship. In addition, to be a violation of individual rights, keeping people on CEPP status in our state and county hospitals is also a huge and improper expense for the State of New Jersey. It costs more than $100,000 per year on average to keep a person in a state psychiatric hospital, whereas it costs on average less than $70,000 for a group home, and approximately $25,000 for supportive housing which includes housing and services.

4. CSP-NJ and BPM support the development of new program models in local communities that promote self-help, and wellness and recovery for consumers and ex-patients.
The "old" mental health service delivery system is predicated excessively on the biomedical model, which focuses on symptom reduction, rapid stabilization and interventions that are focused on deficiencies and incapacity. In this deficit-based approach individuals are seen in terms of their illness and what is often overlooked are people's interests, skills, abilities and potential to achieve personal goals. This narrow focus on limitations often exacerbates the illness rather than supporting recovery. CSP-NJ promotes services that incorporate consumer Self-Help and Wellness and Recovery Models.
We know that self-help works, it provides consumers and ex-patients with opportunities to grow and express themselves as individuals. Self-help is a win/win model. Consumers win through empowerment and the plethora of activities that they can avail themselves of that provide structure, a sense of participation in society, a chance to (re)gain control of their lives, friendship, and love and patience. Society wins, as each member of the community becomes stronger.
Wellness and Recovery models are examples of a new technology that offers a holistic framework in which to view the person as a whole being (spiritual, emotional, physical, occupational, intellectual, social potentials). The wellness and recovery model provides a framework for consumers to take control of their lives capitalizing on strengths, abilities and personal aspirations. Examples of these models include PACE, Personal Assistance in Community Existence (Fisher & Ahern, 2000), Wellness model (Swarbrick, 1997), Self sufficiency models (Sherradan, 1997).

5. CSP-NJ and BPM support the development and implementation of Redirection II designed to create new housing and support service opportunities in the community for persons currently in State Psychiatric Hospitals.
Services to be strengthened and developed include:
          ::Supportive Housing Model (Corporation for Supportive Housing)
          ::Self help resources (self help groups, clearinghouses, Self help centers, Independent living models
          ::Wellness and Recovery program model(s)
          ::PACT Teams · PACE Program Model (Fisher & Ahern, 2000)
          ::Recovery and Wellness program models where consumers, consumer providers and professionals collaboratively plan implement and monitor consumer driven & responsive supports
          ::Employment opportunities, training and education, entrepreneur development, consumer run business enterprises, financial literacy, education about predatory lending, and hiring consumers as supportive service providers.

6. The State of New Jersey should provide funding and technical support for mental health services, but should not operate community-based programs or hospital services.
The multiple pressures placed upon the state service providers casts considerable doubt on the efficacy of the state to efficiently operate community based mental health programs. They are in a much better position to objectively develop, fund, monitor and provide technical assistance.

7. CSP-NJ and BPM recognize that there are major issues that affect the lives of mental health consumers in community settings that need to be addressed.
They include:
          ::Poverty
          ::Lack of accessible affordable, safe and decent housing.
          ::Barriers to self-sufficiency created by entitlement programs.
          ::The inappropriate placement of consumers in the criminal justice system.
          ::Aging out youth
          ::Access to adequate health care services for all
          ::Increased prevalence of substance abuse and addictive lifestyle habits in society and the mental health consumer community.
          ::The stigmatization and rejection of mental health consumers by society and the media portrayal of people labeled mentally ill as violent and dangerous.
Many of these issues exist because the mental health system was created in the context of a treatment model focused on the theory that the illness was progressive and that there was no potential for recovery. We now know that people can recover and can fully participate in their communities of their choice.