Vol. 2 Issue 1

Consumer Advocacy Partnership

Close to 200 mental health consumers echoed words similar to these at the Consumer Budget Forum held on March 13, 2003, at the Statehouse in Trenton. This event, the first of its kind in New Jersey, was hosted by the Consumer Advocacy Partnership, comprised of the strongest consumer advocacy organizations in the state and representing thousands of mental health consumers, from all areas of New Jersey.

Consumers gathered in Trenton expressly to respond to Governor James E. McGreevey’s Fiscal Year ‘04 budget proposal, which was released in February. Legislators will vote on the budget in June, so consumers used this opportunity to launch their advocacy efforts about those issues most vital to their lives.

The forum was chaired by Carolyn Beauchamp, Executive Director of the Mental Health Association in New Jersey (MHANJ), and organized by the association’s Director of Consumer Advocacy, Marie Verna.

In addition to MHANJ, the Consumer Advocacy Partnership includes Collaborative Support Programs of New Jersey (CSP-NJ), the Coalition of Mental Health Consumer Organizations (COMHCO), and the Consumer Provider Association in New Jersey (CPANJ). Representing those organizations were CSP-NJ’s Executive Director, Jack Bucher, COMHCO’s President, Wayne Vivian, and CPANJ’s President, Patrick Martin.

The consumers who spoke at the forum offered compelling, firsthand testimony to a panel of elected and appointed officials about what it’s like to live in New Jersey and manage mental illness as a part of everyday life.

Senator Peter Inverso (R-14), after hearing from consumers, commented, “I’ve heard a lot more common sense here today than I’ve heard in a long time in Trenton.” He was referring to consumers’ explanations of how specific items in the budget would end up actually costing the state money. As Robbin Unnold (Central Region), a consumer and provider, explained, “A day in the hospital costs far more than community mental health services.”

Other panelists who listened to testimony included Assemblyman Joseph Pennacchio (R-26); Assemblyman Reed Gusciora (D-15); Reggie Lewis, Special Assistant to Department of Human Services’ Commissioner Gwendolyn Harris; Jon Poag, Assistant Director Central Region, Division of Mental Health Services; Doug McGruther, Deputy Director of the Division of Medicaid and Health Services; and Julie Caliwan, Director of the Partnership for Children.

Although the Governor’s budget proposal is extremely complex and pertains to all departments, consumers provided testimony on the three issues deemed by them to be most critical: Redirection II, the Partnership for Children, and Medicaid coverage.

Support Redirection II

The Consumer Advocacy Partnership is absolutely in favor of retaining the proposed amount of $10 million for Redirection II and to resisting proposals that would apply those state funds elsewhere.

New Jersey’s mental health consumers fully support Governor McGreevey’s proposal to fund Redirection II in the Division of Mental Health Services. This program, one of the most innovative in the state’s history, has been the result of strong advocacy on our part for many years in efforts to reform the state mental health system from one in which consumers are institutionalized in state hospitals to one where less expensive services are present in the community. Our experience has been that in institutions, we rarely recover. However in the community, with the right supports, we thrive and recover with the help of family, friends, loved ones, and our peers.

This opinion was eloquently voiced by consumers who spoke of their own experiences in hospitals and their difficulties assimilating back into their communities because comprehensive services were not available. The Division of Mental Health Services’ Redirection II program has focused significant resources toward supportive housing and other community supports, which consumers need.

Derek Green (Southern Region) told the panel that he is able to live a productive life outside of hospitals because he has finally found “the right combination of support services and the right combination of people to assist me.”

Other consumers agreed with Mr. Green’s statement, and if Redirection II funds were decreased, many consumers would not lead the lives they are now living. These programs have helped hundreds of consumers leave the hospital and return to their communities, where they have been able to stabilize, socialize, return to work, recover, and reclaim their lives.

“Accessible, readily available, and good psychiatric services are essential to a successful transition from the hospital,” said Dennise Babin (Northern Region). Every consumer who testified concurred with Dennise’s statement, and the audience offered a round of applause.

Many of these same people have taken advantage of training programs offered by the Partnership’s member organizations that have prepared them to become mental health providers themselves. These consumer-providers have become integral members of treatment teams and case management teams, such as the Programs for Assertive Community Treatment (PACT) and Intensive Case Management Services (ICMS,) which Redirection II funds also support. Consumer-providers return to the mental health system with the unique, firsthand knowledge of what it means to manage a mental illness. As such, they provide compassionate, supportive care to other consumers who are attempting to recover in the community.

Such training programs benefit not only the service recipient, but the consumer provider also. Judy Banes (Northern Region), a licensed clinical social worker and a consumer, is pleased that “employment is finally being seen by some providers as essential to recovery and self-respect” and Judy agrees that Redirection II plans should be fully funded to ensure that consumers who can benefit from such services are able to get them.

Supportive housing is another important area funded with Redirection II dollars. Consumers who are capable of living in their communities sometimes stay in hospitals only because they have no other place to live. Regina Sessoms (Central Region) knows that it is imperative that consumers have access to safe, affordable housing; she recounted her experience of having to give up her home because her illness precluded her from working, therefore, she could not afford it. She now lives in supportive housing, and testified, “I am literally able to talk with you today” because of the interventions of the support team workers in her housing program: “They are a godsend.”

If Redirection II funding was cut, those workers would not be in the community to work with consumers living in supportive housing. Joe Cinko (Southern Region) told the panel, “We need to ensure a budget that pays mental health workers a decent, livable wage.” He knows that in other areas of healthcare, “the sickest clients get the most experienced, highest paid specialists, resulting in the highest quality of care.” This is not true in mental health services, where those with experience typically advance to administrative positions or leave the field altogether.

Mr. Cinko went on to tell the legislators and other officials “I urge you to consider the effect of this budget on people who have done nothing more in their lives than be affected by an illness.”

Support Partnership for Children

The Consumer Advocacy Partnership urged that the additional $3 million in the budget proposal for the Children’s Initiative (now called the Partnership for Children) be continued so that children who show signs of mental illnesses can receive early and appropriate interventions, and thereby avoid much of the suffering many in the audience have survived.

The Consumer Advocacy Partnership is grateful to know that Governor McGreevey’s proposed budget includes funding of an additional $3 million for the Partnership for Children. This initiative has been successfully implemented in about one-third of the state’s counties, where it has helped families with children exhibiting mental health symptoms to “wrap services around” their children, providing the necessary coordination of parents, providers, teachers, and case managers.

Other states view the Partnership for Children as an exemplary practice model of how to confront the reality of mental illness in children. The funding currently in Governor McGreevey’s budget proposal will allow the program to continue rolling out throughout the state, while also continuing to allow the state to pull down significant federal dollars. The next county to receive funding will be Hudson.

A parent whose family had the assistance of caregivers in her county expressed the success of the Partnership for Children. She described the symptoms of mental illness exhibited by her two children, one child’s suicide attempt, and the difficulty she had in getting the right services for them. Through the work of the Partnership for Children, her children received the right treatment and her family received the support they needed. This parent shared that she now hosts meetings of caregivers in her home, where her son sees and contributes to her work with other families.

Oppose Medicaid Cost-Cutting

Mental health consumers who have Medicaid coverage and who are attempting to recover in the community cannot afford the cuts being proposed as a way to lower Medicaid costs. While some of these cuts will go relatively unnoticed by some Medicaid recipients, we believe that for those with mental illness the cuts will create overwhelming financial burdens.

• Addition of $3.00 co-pay for outpatient hospital visits and certain meds

Mental health consumers in the community often exist on extremely tight budgets, with little money leftover after paying for housing, food, and clothing. A typical budget from Joe Cinko (Southern Region) who takes 12 different medications: “After I pay my rent, utilities, buy a bus pass to get to my part-time job, I have $35 a week for food, clothing, and toiletries. This co-pay would decrease that amount to $24, or $3.43 a day.”

We all know that our medications are an integral part of our treatment, but when forced to choose between expensive drugs and housing or food, many of us might be forced to make the decision to try to go without them. Invariably, this decision leads to decompensation, destabilization, and many times, re-hospitalization. Although we’re committed to our recovery, many times, the money isn’t there to cover everything we need.

Wayne Vivian (Northern Region), president of Partnership member COMHCO, explained to the panel, “Our population tends to be very poor, with no extra money for outpatient treatment. Having to stretch a very limited budget to pay for treatment and medication would be a hardship for most consumers, and would likely force people to make choices that no one should have to make.”

• Addition of $25 co-pay for non-emergency use of emergency rooms

Much of the testimony given at the Consumer Budget Forum described the need for services for mental health consumers in the community. That’s why Redirection II is so important. But mental illnesses are chronic, which means we sometimes need services that simply aren’t there.

When we first experience symptoms of insomnia, anxiety, depression, or mania, we can often manage those symptoms successfully with pharmacological treatment, talk therapy, support groups, self-help centers, physical exercise, diet, and other therapies. However, when those coping strategies don’t work and we have no other services to turn to, emergency rooms are often the only place to go.

During a psychiatric crisis, it may be difficult to ascertain whether we’re experiencing a true emergency, under Medicaid’s definition. We need to know that when no other services are available, we have somewhere to go.

• Elimination of dental coverage for adults

Dental coverage for mental health consumers is not simply a “nice-to-have.” The drugs we must take to manage our illnesses are extremely powerful and affect the body’s ability to maintain healthy teeth and gums. Annette Wright (Northern Region) addressed this issue when she told the panel, “Dental services are not a luxury that simply insure a pretty smile. Medications taken by mental health consumers often have serious side effects, and one very common side effect is dry mouth, leading to a lack of saliva.” Ms. Wright explained, “The lack of saliva leads to weakened enamel, tooth decay, periodontal disease, and tooth loss.” Periodontal disease allows bacteria to enter the body, sometimes causing injury or disease to the heart and other organs.

Although present coverage is limited, to eliminate it would cause increased suffering for those consumers who have no financial ability to pay for dental services.

• Preferred Drug Lists (PDLs)

We are aware that some states have attempted to cut costs by placing certain drugs on lists that the state prefers doctors to prescribe because they seem to offer a cost savings. We are strongly opposed to limiting a prescriber’s use of mental health drugs because what works for one person often doesn’t work for another person.

For many of us, it has taken years of trial, error, symptoms, and suffering to arrive at the right drug for our illness. Doctors and Advanced Practice Nurses, who also have the authority to write prescriptions for us, must have the widest possible range of options to choose from when helping us control symptoms, often by combining many drugs at once.

In his written testimony, Northern Region consumer Kevin Wilson acknowledged his fear that having a PDL would “prevent practitioners from using the full range of medication that is available.” Many other consumers shared their stories of trying many different medications and various combinations before finding those that worked best for them.

The Consumer Budget Forum held in Trenton on March 13, where people with mental illness provided succinct, relevant testimony about how these budget items will affect them in real-time, was the first such event in the history of New Jersey. Because of the stigma associated with mental illness, consumers have only recently begun to advocate loudly and clearly for themselves as citizens of the state.

Governor McGreevey’s budget proposal for Fiscal Year ‘04 will not save the state money unless our legislators hold the line for us—the state’s most vulnerable. The proposal will not save the state money unless our legislators retain funding for Redirection II and the Partnership for Children, and unless they oppose cuts to Medicaid.

The Governor’s current proposal will, instead, result in additional expense for New Jersey, in the form of increased hospital costs because we will not be able to manage our illnesses in the community unless our legislators and our Governor hear our voices.

During 2003, the Consumer Advocacy Partnership will hold a series of forums designed to solicit consumer opinion on the issues most critical to those in New Jersey attempting to recover from mental illness.

These forums will be sponsored by the partnership’s Consumer Public Policy Committee, made up of 12 consumers from all regions in the state who have firsthand experience as consumers and/or as consumer-providers serving other consumers.

Your opinions will be documented during the forums and shared with elected and appointed officials, planning boards, administrators, and providers so that they can plan for systems reform based on meaningful input from consumers.

To help us host meaningful forums that lead to consumer-centered systems reform, please put an X next to the issues about which you’d like the Partnership to host a forum.

• Lack of Housing

• Lack of Responsive Psychiatric and Psychopharmacological Treatment Services

• Lack of Substance Abuse Services

• Difficulty Accessing Safe, Effective Medication

• Lack of Services Leading to Permanent Employment

• Poverty

• Quality of Services Leading to Recovery and Wellness

• Children’s Services

• Culturally Competent Services

• Services in Rural Areas

• Forced Treatment (seclusion, restraints, outpatient commitment, forced medication)

• Insurance

• Lack of Services for Consumers Who Are Also Parents

• Getting Caught in the Criminal Justice System

• Lack of Education (formal and informal)

• Consumer Empowerment

• Other _______________________________________________________

After you’ve completed this survey, please send it to the partnership offices in Trenton via US mail or fax:

Consumer Advocacy Partnership
121 N. Broad Street, Second Floor
Trenton, NJ 08560
609-656-0110 (phone)
609-656-8078 (fax)