#WorthyWednesday meets the Carpenters
An Activist Power Couple
For many activists, a single experience provides the catalyst that gives them the fire to fight for what they believe. For parents, having children together provides a shared set of experiences that can alter their belief systems, values, and priorities. In the case of Scott and Leslie Carpenter, the shared experience of having a child with mental illness motivated them to drive change in Iowa. The support and love they have for one another has empowered them to keep fighting when others may have given up.
Scott and Leslie’s story began when they were in 5th grade in Upstate New York. Scott’s parents collected antiques, and their antique dealer happened to be Leslie’s physical education teacher. This mutual acquaintance would tease the two children about the other for many years, but Leslie and Scott would not officially meet until junior high. They started dating during their sophomore year of high school — almost 40 years ago. They married in 1985 and have two children, Patrick and Emily.
Throughout their marriage, Scott and Leslie have faced many challenges but have always overcome them together. “Having a child with a serious mental illness” and “being a consumer of Iowa’s badly broken mental health care system” for more than 10 years inspired Scott and Leslie to fight to improve mental healthcare in Iowa. After 33 years of marriage, the two continue to work together to improve the lives of Iowa families in similar situations. Sitting on the sidelines isn’t an option for Scott and Leslie. Having “first hand knowledge of mental health care enables you speak to elected officials and seek changes,” Scott told us.
The Future of Mental Health in Iowa
According to the Carpenters, “Iowa is in a mental health crisis.” In Iowa today:
“[There are] far too few psychiatric beds available, far too few community services, and a privatized Medicaid system that refuses to reimburse providers appropriately. This means that the number of mental health care professionals in Iowa is dangerously low. This also means that when people experience a mental health crisis or emergency, there is often no safe place to go. Emergency rooms are often full… (many people) don’t receive treatment and end up in jail or are homeless. Some commit suicide. One result of patients being untreated is that jails often become the largest provider of mental health care... Over 50% of Iowa’s prison population has some form of mental illness. The system is badly broken.”
I asked Scott and Leslie: If you could change one law right now, what would it be and why? Their answer: universal healthcare, with mental and physical health treated equally. Scott and Leslie believe that “getting elected officials to genuinely care about the well being of their constituents would be revolutionary.” To them, universal healthcare would be one way for our representatives to demonstrate an earnest desire to better the lives of average Americans.
The Fight for Mental Healthcare
Today, Scott and Leslie are working with the National Alliance on Mental Illness (NAMI) to fix our broken healthcare system. NAMI is the largest grassroots mental health organization in the United States today. It has hundreds of local affiliates, state organizations, and volunteers in communities across the country who are working to improve education about and access to mental health resources. NAMI provides educational programs with information for families and employers. The organization also lobbies for increased research and funding.
As an aside, Leslie Carpenter has recently been chosen as President-elect of the NAMI Johnson County Board of Directors in Iowa. Congratulations, Leslie!
In the fight for mental healthcare, the Carpenters believe one of the most effective strategies is to focus on drafting and lobbying for legislation as a means for creating change. Scott told me:
“To effectively advocate for the mentally ill, it’s important that legislators and the public understand what mental illness is and how it impacts the lives of patients and their families. For most people, their knowledge of mental illness is tangential at best. Far fewer understand the world of serious mental illness. Unfortunately, laws dictate how the mentally ill are provided treatment. This is where a great deal of effort is currently focused.”
To that end, the Carpenters have recently proposed two pieces of legislation designed to improve mental health care in Iowa. The first bill focuses on enhancing Assisted Outpatient Treatment and would “allow judges to mandate treatment for those with serious mental illness should they have multiple hospitalizations and/or arrests.” This bill, submitted via Iowa City State Senator Joe Bolkcom, is similar to Kendra’s Law in New York.
The second bill proposed by the Carpenters (via State Senator Bob Dvorsky) would require mental health facilities to notify family members and the police within 30 minutes if a patient leaves the facility without permission. If the patient leaves, or elopes, the bill also states that law enforcement can request the location of their cellular device without a court order. The goal of this bill is to help ensure the safety of both patients and their families.
I asked Leslie and Scott what they feel is the most important resource they need to make change in the future:
“Healthcare providers and insurance companies in the United States fail to treat mental illnesses like physical illnesses. The lack of parity is a major obstacle in treating illnesses of the brain. When the federal government cuts funding for Medicaid and Medicare, this directly and negatively impacts the support of the mentally ill. When Iowa privatizes its Medicaid System, health insurance for the mentally ill is degraded. Social Security and Social Security Disability are key support mechanisms for citizens with serious mental illness. While these payments provide some financial means of support, social security disability is required to receive Medicaid. Modifications of these programs impact the citizens who need this support the most. Unfortunately, these Americans are not able to lobby their elected officials...This is one reason why they need advocates.”
Scott and Leslie intend to be those advocates for as long as they can. But they can’t do it all on their own: they need your help.
The History of A Generation
Leslie and Scott are full of wonderful advice for current and future activists. Their most important message: everything you do, no matter how small, will make a difference in the long run. Regardless of your age or experience, you too can make a difference.
“Each post to social media, each email to an elected official, each letter to the editor, each rally attended makes a difference — even if these acts only serve to support one person in need. Educate yourself and then educate others. Don’t be afraid to start.”
Throughout their many years of activism, Scott and Leslie have learned a lot. They continue to be inspired by this 1966 quote from Robert F Kennedy:
“Let no one be discouraged by the belief there is nothing one person can do against the enormous array of the world’s ills, misery, ignorance, and violence. Few will have the greatness to bend history, but each of us can work to change a small portion of events. And in the total of all those acts will be written the history of a generation.”
Are you an activist doing amazing work in Iowa? We want to show it off! Email me at firstname.lastname@example.org if you’d like to be profiled on ActWorthy’s social media. #WorthyWednesday