Vol. 2 Issue 2

Consumers from Minority Backgrounds Lead the Way
in Advocating for Culturally Competent Services

Consumers say that overcoming stigma and finding culturally competent services for themselves and their families is close to impossible if you happen to be from an ethnic minority in New Jersey. While our population is one of the most diverse in the nation, our mental health service system is not.

To develop a solution, in 2002, MHANJ formed a Multicultural Task Force, with help from the federal Center for Mental Health Services, made up of various stakeholders, most notably consumers from various cultural backgrounds.

“Here at MHANJ, we value, above all else, the energy and input that consumers naturally bring to the table,” says Carolyn Beauchamp, Executive Director. “What better source to learn how and why services can become more responsive to the needs of consumers who are from ethnic minorities than the consumers themselves?”

For several months, the task force grew in number and commitment of its members, which included providers and family members who also share our vision that consumers can and should lead the way.

But first, MHANJ acknowledged that consumers, especially those from minority cultures, needed to learn skills in leadership, collective organizing, and systems advocacy.

As a step in that direction, MHANJ held its first Multicultural Leadership Academy in July 2003, where consumers began to learn about and practice the skills they’ll need to participate in local, state, and federal efforts to improve services for them.

The training curriculum is based on the Leadership Academy, developed by CONTAC, a national consumer technical assistance center in West Virginia.

“MHANJ’s Multicultural Leadership Academy gives me hope that I can make a difference in improving services for people like me, a consumer who’s trying to access services from providers who don’t seem to understand my background (African-American),” says Shalet Richardson, from Hudson County.

"In my culture, you can be a lot of things, but you better not be mentally ill!”

Lydia Gonzalez, from Passaic County, explains, “Consumers who don’t speak English are too scared to speak up. They feel lost and vulnerable and don’t know how to express their issues and concerns in English or with any confidence that anyone will listen.”

Shalet and Lydia are like thousands of consumers in New Jersey who want to help spread the word that mental illness is real and that it’s treatable. They count themselves among the lucky ones, who found out that the symptoms they experienced weren’t signs of demonic possession, flawed character, or deliberate attempts to upset family authority structures. What those symptoms were, of course, were changes in behavior that are often associated with psychiatric illness.

But for their family members, friends, and clergy, the symptoms were unfamiliar and unknown. As a result, when a person from African-, Latino-, or Asian-American cultures begins to exhibit these symptoms, their “support” people inadvertently make recommendations that deny their loved ones the necessary treatment they’ll need to recover.

“In my culture [Asian-American],” says Grace Yang, a consumer from the Southern Region, “it’s not only a foreign language that gets in the way of people getting help. It’s also the tendency to hide the illness from others in the community, as though it’s a family embarrassment. When I decided to get help from traditional mental health service providers, I was actually defying my parents’ wishes.”

“Without support from family,” says Josephine Harvin, a consumer from the Central Region, mental illness is a lonely illness. When I learned about the Multicultural Leadership Academy, I met other consumers who I could identify with and who understood my background [African-American].”

But when a person finally acknowledges mental illness, where can he or she go to receive services that take into account their cultural background? Here in New Jersey, and all over most of the United States, culturally competent services are hard to find.

In fact, in 2001, David Satcher, M.D., Ph.D., the then Surgeon General of the United States, wrote a supplement to his 1999 Mental Health Report acknowledging this critical gap in the system, which he discovered while researching his original report.

“The cultures from which people hail affect all aspects of mental health and illness, including the types of stressors they confront, whether they seek help, what types of help they seek, what symptoms and concerns they bring to clinical attention, and what types of coping styles and social supports they possess…. It is essential that our Nation continues on the road toward eliminating racial and ethnic disparities in the accessibility, availability, and quality of mental health services.”

MHANJ’s goal is that consumers themselves lead the way down this road of ever increasing attempts to close the gap between the needs of minority cultures and availability of the mental health services that truly respect them and their backgrounds.

“ I enjoyed learning the history of the mental health consumer movement,” says Josephine, “and about how far we’ve come. I didn’t know how to brainstorm an issue [before taking the training], and even though it’s complex, I have a better understanding of how to do it now. It’s fulfilling to be part of the Multicultural Leadership Academy and to know that consumers will become leaders in a multicultural environment.”

Quinita Good, a consumer from the North, feels that the training she received gives her a way to go “beyond complaining.” She said the training helped her see the critical need for consumers from minority cultures to organize.

"The session, with its focus on true leadership skills, clarified that we need to organize first on the local level, in small groups, before we try to make change at higher levels.”

For Shalet, the training gave her “a language to raise issues the right way. I always knew that I wanted to express cultural issues and concerns, but I didn’t know how.”

And for Madeline Bell, a member of the Hudson County Self-Help Center, the training showed her “how to bring issues down to the level of her fellow members, so that those people understand why respecting cultural differences is important for all of us as a group.”

As MHANJ continues to establish a Multicultural Leadership Academy in New Jersey, we’ll be actively searching for consumers who have demonstrated readiness for collective advocacy and continuing to help them find opportunities to get involved in advocacy.

To maximize the training, MHANJ has partnered with the International Institute of New Jersey in Jersey City to provide training in specific issues related to mental illnesses for minority cultures and for immigrants to the United States.

To learn more about the project, please call Marie Verna at the State Consumer Advocacy Office in Trenton.
 

Consumers Partner to Voice Budget Concerns in Trenton

During the last quarter, consumers were instrumental in successful advocacy for specific results in the New Jersey State Budget, such as continued funding for Redirection II and the Partnership for Children. From all three regions, all 21 counties, and all 40 legislative districts, consumers advocated loudly and clearly for these programs, as well as against proposed cuts to Medicaid. In the end, most observers say that the success in the mental health budget this year was due, in large part, to strong, organized, consistent consumer presence.

From February to June, the Consumer Advocacy Partnership organized and participated in many collective advocacy strategies:

Consumer Budget Forum on March 13, 2003 in Trenton

Close to 200 mental health consumers attended 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.

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).

Governor’s Challenge: “Don’t Let a Week Go by That You Don’t Advocate!”

New Jersey’s consumers kept the momentum going and accepted the Governor’s Challenge to “advocate every day” by gathering over 2500 letters to Governor James E. McGreevey about his proposed budget for fiscal year 2004. With “captains” in every county, consumers organized the letter-writing campaign by fanning out to partial care programs, self-help centers, residential programs, consumer trainings, and hospitals.

All along the way, advocates sent letters to the Partnership’s office in Trenton, with the number growing daily. By early June, consumers learned that the Governor’s office would accept the letters at a press conference, which was held on June 2 at the State House in Trenton.

Close to 100 consumers packed the room, where MHANJ Executive Director, Carolyn Beauchamp, and Director of Consumer Advocacy, Marie Verna, presented information to the press about the importance of mental health funding while consumers wheeled in the letters in a wheelbarrow overflowing with letters.

Consumers, Annette Wright and Joe Cinko, presented the consumer position on the key budget issues, while family members explained the dire necessity of funding mental health services for children.

Legislative and Congressional Visits

Throughout the “budget season,” MHANJ Legislative Advocate Cathy Chin visited with leaders in the State Senate and Assembly to re-iterate the organization’s concerns about the impending budget vote. In all cases, Cathy brought with her consumers who lived in each representative’s district, so that legislators would see how their decisions would affect their constituents firsthand. On the federal level, MHANJ led a group of mental health advocates to Washington, D.C. to voice consumer concerns about national parity, efforts to reform Medicaid, and the federal mental health budget.

Housing Rally on June 12

Hundreds of consumer advocates shouted, shook keys, and sang at the memorable Housing Rally in front of the State House in Trenton to stop efforts to remove $25 million from the budget of the Housing Mortgage Finance Agency. Advocates created a “key ring” made from over 1,000 keys to demonstrate the number of affordable units that would be lost if the cut were not stopped.

State Mental Health Rally on June 16

The Consumer Advocacy Partnership was one of over 20 mental health advocacy organizations in the state that came together to rally on the State House steps to remind the Governor and legislators once again to “Count Us In!” in this year’s budget process. Thousands of advocates and consumers, family members, professionals and advocates demonstrated against the proposed reduction in Medicaid coverage for dental treatment and implementation of co-payments for mental health services.

Consumers Wayne Vivian, Patrick Martin, Marie Verna, Steve Jakubowicz, Karen Burke, and Jeannie Metzger rallied advocates to demand continued funding of Redirection II and the Partnership for Children.

Phone Blitz to Legislators on June 19

Just to ensure that our elected officials remembered mental health in the impending budget vote, consumers blitzed the phone lines and email boxes of their legislators and the Governor’s office to repeat the consumer budget platform: “Keep the additional $10 million for Redirection II, Keep the additional $3 million for the Partnership for Children, and Oppose Medicaid cuts!”

Last-minute Senate Budget Hearings

With days to go, MHANJ’s Government Affairs Department learned of last-minute hearings and rallies in Trenton, where mental health advocates would have one last chance to voice our concerns. Once again, consumers joined in with a united voice.

On June 30, 2003 our legislature voted on, and Governor McGreevey signed, a budget bill for the state fiscal year beginning on July 1 and extending to June 30, 2004 that not only “counted us in” but also protected every program at the precise dollar amounts we requested:

• Redirection II

• Partnership for Children

• Medicaid: Prevention of co-payments and preferred drug lists

• Medicaid: Restoration of dental coverage

• Family Care

• Housing Mortgage Finance Agency

MHANJ’s Government Affairs Department is already learning where our advocacy will be necessary in next year’s budget fight. To get involved join the Legislative Network by filling out the application on our website.