NAMI Dane County Celebrates 40 Years

By: Brett Wilfrid, Board President

At the October Board meeting, directors reflected on the significance of what NAMI has achieved over the last 40 years. It's impossible to determine, exactly, the scope of the influence of the work done by so many people over so many years, started by about a dozen families who advocated for changes to Dane County systems to support their children, but here are some ideas.

40 years ago, mothers were frequently blamed when a child had schizophrenia or other mental illness. The "refrigerator mother theory" was strong, and I know mothers who were told that their child's mental illness was the mother's fault.  

Mental illness was often seen as an untreatable aberration, and many people were excluded from schools and communities and not allowed opportunities to lead successful lives.  

Now, though there is much more work to be done, mental illness is recognized as a part of the human condition - not an aberration. NAMI-National's citing of "1 in 5 Americans will experience a mental health condition" opens the doors beyond "illness" to things like episodic depression, but helps to humanize the experience by putting us all on a spectrum of experience rather than drawing a binary line between those who have mental illness and those who do not.

Further, mental illness is recognized as a medical condition. Though rates of reimbursement remain a topic of debate, the fact that there are doctors, areas of research with therapies and drug treatments, further humanizes the condition, and many people are able to access the medical services they need to lead and maintain healthy, successful lives.  

In 1996, the Governor established the Blue Ribbon Commission on Mental Health Care. Robert Beilman, NAMI-Dane County Board President at the time, was appointed to the Commission. The final report was published in 1997 and embraced the concept of recovery as the guiding vision for Wisconsin’s mental health system. This has led to a shift in beliefs about what consumers can achieve in life, the development of hope, a change in relationships between consumers and treatment providers, and the development of services based on consumer goals and preferences.

Additionally, treatment options have become increasingly localized. What once was often dealt with by 'locking a person up' and/or 'sending them away' is now much more pro-family, pro-community, collectivist, humane, and progressive.

NAMI-Dane County advocacy efforts around Community Support Providers (CSPs) resulted in: WI being the 1st state in the country to mandate counties to provide CSP services across the state. Additionally, our efforts led to a promulgation of standards in the WI administrative code that CSPs have to follow in order to be certified. Further, we were the 1st state in the nation to get CSPs covered under Medicaid. CSPs are evidence-based programs and research has shown they result in a dramatic reduction in hospitalizations. People from all over the world have come to our community to learn from the Madison Model.

Later, Community Treatment Alternatives (CTA), another CSP, was started under the direction of the Mental Health Center of Dane County, now Journey Mental Health. It became state certified in 1992 as a specialized jail diversion program, joining the three other certified CSPs in the county.  NAMI-Dane County worked hard at the county funding level to get this nationally recognized CTA program started and we have since been successful in getting additional funding for more slots over the years.

Our significant work around de-stigmatizing mental illness is ongoing. From famous artists and performers sharing their experiences to public information messaging on mass media to awareness campaigns in colleges, schools, and communities, we are much better at talking about mental illness than we once were.  One part of stigma is the personal acceptance of a mental illness, but another part is the degree to which a community welcomes or ostracizes a person with a mental illness.  There is more work to be done, but we have come a long way!

As many of you readers know, NAMI-Dane County was the founding chapter of the National Alliance on Mental Illness. Early work focused on advocacy efforts, especially within Dane County. Over time, as the organization grew across states and - eventually - the nation, a heavy focus on providing free, peer-led programs emerged.

NAMI-Dane County developed the first peer-led family education program in the nation. NAMI Family-to-Family is now a designated evidenced-based program through SAMHSA. Research shows that the program significantly improves the coping and problem-solving abilities of the people closest to an individual living with a mental illness.

And NAMI-Dane County's advocacy work affects more than health policy. Our advocacy also led to the 1990 passage of fair housing laws in Madison and Dane County that included protections for 10 additional classes - including mental illness - that went beyond federal and state law. NAMI-Dane County created the Alliance Building Corporation in 1994 for the purpose of developing quality housing for low income, disabled people with mental illness, and in 1997, the first property - the Northport Building - was acquired and units were rented to people with serious mental illness.

It is natural for humans to focus on what's not working, what is wrong in the world and in ourselves, and to - at times - lose sight of the progress we've made. NAMI-Dane County was founded during what we now refer to as the "Civil Rights Era," and - as I reflect on the progress made in our society to support people who are experiencing mental illness and their families, I'm reminded of a quote made famous by Dr. Martin Luther King, Jr.: "The moral arc of the universe is long, but bends towards justice."

Here's hoping for another 40 years of advocacy, education, outreach, and support!