Vol. 2 Issue 4

Consumers Envision a Mental Health System that
Leads Them Back to Wellness

Consumers in New Jersey want mental health services that help them recover, rebuild, and reclaim the lives that started disintegrating once they began exhibiting symptoms of mental illness.  So say almost 100 consumers from all areas of the state and all walks of life who testified at the Wellness and Recovery Forum hosted by the Consumer Advocacy Partnership on November 4, 2003 in South Brunswick.

Consumers want “a system that does not ask us to be dependent on the state in order to get the services we need, a system that does not require us to beg for the care we need, and a system that does not humiliate and dehumanize” the very people it serves, according to Cathleen Scott, a mental health consumer who’s been able to return to work and accesses services through private insurance.

According to Scott, New Jersey’s mental health system should lead people back to work and should then provide healthcare insurance that helps them stay employed.

Those consumers who attended the Wellness and Recovery Forum, some of whom are currently being held in the hospital only because of a lack of community supports, prepared their testimony by answering these questions:

• What is your vision of a wellness and recovery-oriented system?
• What steps do we need to realize it?
• What attitudes do we need to change?
• What are your hopes for the future?

Our Vision

Michael Kinehan explained that “recovery is not a one-shot deal.”  Most consumers agree that recovery is a very personal process of healing and regrouping, fraught with many setbacks.  But Kinehan believes that the system should be designed with these realities in mind.

New Jersey’s consumers agree that the system should include a comprehensive support system in the community that helps people find housing, navigate their insurance options, manage transitions to jobs, adhere to medication regimens while minimizing side effects, and deal with people in their lives who underestimate them.

These ideas were echoed by many of the consumers who testified at the forum, and many attendees had positive, constructive ideas about how to reform the system into a consumer-centered, recovery-oriented one.

Robin Weiss envisions a system of “intermediate residences” that accommodate consumers at varying degrees of recovery, and Sandra Hobson sees “step up” programs that provide gradually more  constructive programming as consumers progress.  According to Hobson, “You should have goals in day treatment programs.  You shouldn’t be allowed to just waste away or sleep all day.”

The Steps We Must Take

Meg Stenson and Jeannie Metzger, both active consumer advocates, testified that the system should  accommodate the human “need for healthy work” and should help consumers find a way to “fill a      purpose.” 

Attila Hetenyi stresses that “recovery is difficult and consumers need to ‘give back’ to other consumers who are experiencing setbacks.”  Hetenyi is only one of many consumers who admits that he wants what most people want:  a home with his own yard, his own transportation, and a job that helps him maintain those things. 

His testimony concurs with Dennise Babin’s:  “To get well, you need all the support you can get.”  But New Jersey’s mental health system can, and should be, reformed, to offer those supports, starting in the hospital.  Consumers see opportunities for education in the hospital to start preparing people for life “on the outside” and they agree unanimously that that training should be delivered by “peers” and “consumer-providers,” who have a distinct advantage in providing care because of their firsthand  experience with the illness.

Once out in the community, consumers should be served well by mental health agencies that provide and implement “best practices,” or those that have been demonstrated to help people reclaim their lives and their dignity.

David Betalldier told the Consumer Advocacy Partnership, “Consumers need better education because education equals success.”  Betalldier and the consumers who testified agree that mental health consumers are not “mentally handicapped,” but the system often leaves them “socially handicapped” because it  doesn’t respond to their deep desire to recover and get back to life.

Many consumers testified about the need for primary healthcare, as well as dental healthcare, especially because the drugs they’re forced to take for their illnesses have been found to cause extremely negative side effects, such as diabetes and obesity, without their prior knowledge or truly “informed consent.” In addition, the poverty that many consumers live in compromises their physical health, as they attempt to recover in substandard housing or worse, on the street.  Many programs in both the hospital and the community overlook physical healthcare risks, such as smoking, which exacerbates physical health and often counteracts the therapeutic effects of psychotropic medications.

Consumers who also manage recovery from substance abuse have very clear ideas about what works—and what doesn’t work—based on firsthand experience.  Bill Bradley, who works with MICA consumers (mental illness/chemical abuse), explained that mental health providers need to learn how to actually “listen” to ascertain best treatment practices for people battling both issues.  Mental health experts need to learn more about chemical addiction and chemical addictions experts need to learn more about mental health.  They need to do “more than medication monitoring.” 

In many parts of New Jersey, consumers testified that services need to be made culturally competent, meaning that providers must respect a person’s cultural background when engaging the consumer in rehabilitative care.  Gabriel Amores helped the Consumer Advocacy Partnership understand the gravity of his obstacles by explaining that mental illness is “suffocating” when he can’t understand what his doctors and social workers are saying and they don’t understand in return.

The Attitudes We Must Change

Steve Jakubowycz and Donna Nichols believe that all of us – consumers, system analysts, providers,    family members, friends, policymakers – have to stop thinking in terms of what consumers can’t do, but rather what they can do – with the right supports, services, programs, and people who believe that recovery is possible.

New Jersey’s consumers agree that treatment should be much more holistic than it currently is, and should integrate spiritual, emotional, mental, physical, intellectual, and social needs in order for a person to follow a path back to wellness.  Part of this path must include advocacy on their own behalf and  consumers must get involved and actively participate in advocacy to “help change the rules so that we’re not limited by our illness just because we’re afraid of losing benefits,” as Pat Gaffi says. 

Nerissa Jones wants to tell other consumers, “Do not be ashamed by your illness.  It is not a weakness, but a strength.  You are not sub-human.  Learn about your illness; learn what it’s all about.  Take responsibility for your recovery.  And gather strength from your peers.”

How Do the Forums Work?

The Consumer Advocacy Partnership is a coalition of the strongest consumer organizations in the state, whose mission is to work together to identify important system issues that impact the lives of mental health consumers and to create opportunities for consumers to effect systems change.  Those organizations include the Mental Health Association in New Jersey, Collaborative Support Programs in New Jersey, the Coalition of Mental Health Consumer Organizations, and the Consumer Provider Association of New Jersey.

The partnership actively builds consumer leadership by training consumers and preparing them to be  integrated into advocacy efforts statewide.  As part of this mission, the Partnership’s Consumer Public Policy Committee convenes forums several times a year to solicit the viewpoint and opinion of consumers firsthand.

The Consumer Public Policy Committee is 100% consumer-run and includes representation from all three geographic regions of the state.

Prior to attending a forum, consumers are asked to register and then receive background information about the issue at hand, as well as guidelines on how to prepare their testimony within an allotted amount of time.  The primary goal of each forum is to hear well organized opinions from as many consumers as possible, while giving fair and equal time to all.  Scribes are present at each forum to document the consumer views, as the information we learn at forums becomes the foundation for the Consumer Advocacy Partnership’s platform.  After each event, the     Consumer Public Policy Committee works to summarize consumers’ view into public policy positions, which guide all system advocacy efforts going forward.

To learn more about the Consumer Advocacy Partnership, contact any of the members of the Consumer Public Policy Committee or contact the Partnership’s Office in Trenton at 609-656-0110 or  mhatrenton@mhanj.org: 

What's Coming Up for Consumers?

CEPP

The Consumer Advocacy Partnership is working on learning more about the experiences of consumers who are currently, or ever were, on CEPP status (Conditional Extension Pending Placement).  In the early winter, we’ll be holding forums in various regions to hear from consumers on this issue.

BUDGET

Last year, the Consumer Advocacy Partnership led a victorious battle to maintain necessary funds for Redirection II and the Partnership for Children in the budget of the state Department of Human Services.  We also prevailed in efforts to cut services in Medicaid.  In February, Governor McGreevey will reveal his budget proposal for Fiscal Year 04-05.  The Consumer Advocacy Partnership will, once again, work to maximize funds for services in hospitals and in the community.