As we mark the 50th anniversary of President Kennedy’s signing of the landmark Community Mental Health Act of 1963, Patrick Kennedy, behavioral health’s great champion, has launched The Kennedy Forum to honor the legacy of his uncle and to create a national conversation that will advance the work President Kennedy began. I am privileged to serve on the planning committee for the inaugural Kennedy Forum in Boston on October 24, 2013. I’ll join national policy leaders to discuss the continued relevance of President Kennedy’s vision and to outline current policy issues as we rededicate ourselves to the principles of the Community Mental Health Act.

I had the pleasure of talking with Patrick Kennedy about JFK’s vision and the challenges that lie ahead and want to share some of his thoughts.

Linda: If President Kennedy was with us today, would he be happy with where we are in realizing his vision?

Patrick: He would’ve seen the great progress that we’ve made. But he might say we haven’t fully followed through with the vision that he put forth. While we’ve provided community and family-based treatment for many, we haven’t been able to make it a reality for all who need it.

My uncle had an ambitious vision, rooted in a belief in human dignity. And in providing people with care in a way that honored them as human beings — directly in contrast to the dehumanizing experience of his time, where people with mental illness and intellectual disabilities were simply locked up in warehouses and not treated.

Consider the tragedy of our jails and prison system — how some of the largest mental health facilities in this country are really county jails and state prisons. If JFK were to walk through the Cook County Jail in Chicago as I did two weeks ago, he’d have been distressed at the shackling of human beings whose only crime is that no one has treated them for their brain illnesses. He’d have pointed out that it is unbecoming for America to relegate its citizens to such demeaning and dehumanizing conditions. It’s a civil rights issue!

Linda: Why haven’t we more fully realized JFK’s vision?

Patrick: The intent and the energy behind the Community Mental Health Act of 1963 diminished in the years that followed JFK’s untimely death. The money didn’t follow patients from the institutions to the community, as he envisioned.

The kind of advocacy for mental health that my uncle envisioned and articulated did not happen consistently. While succeeding presidents have championed the issue, it never managed to really take hold with both the executive and legislative branches of federal government.

Linda: Yet, things are changing, right? We finally have parity and we are part of healthcare.

Patrick: Yes, I think JFK would’ve felt that we do have a chance now for great progress, largely because another young president has brought about the most transformational change in healthcare in over a generation. And he has given us the tools to realize the vision that President Kennedy articulated — to have a healthcare and not just a sick-care system.

We have new mandates that insurance companies can no longer discriminate against people with preexisting conditions. We have mandates that require preventive screenings including mental health screenings. We have new models of care where outcomes drive reimbursement. We have all of the reforms within the Affordable Care Act that enable us to make good on the promise of whole healthcare.

Linda: What are the challenges ahead?

Patrick: There are places that are achieving President Kennedy’s vision through creative and bold leadership in the community mental health movement, and they’ve found ways to integrate healthcare, social services, housing, supportive employment, pharmacy benefits, community outreach and care, and more. As George W. Bush said, we have “a thousand points of light.” Our challenge now is to bring to scale the best standards of care and the lessons learned so the quality of care is not dependent upon geography.

Parity makes very clear that the brain must be treated like the rest of the body, but we need to breathe life into that law. We need evidence of how parity is working. The ACA requires public and private insurance companies to disclose data, and this data will tell us how we’re doing, serving as a road map for where we need further advocacy.

All of us have a responsibility to be part of the change.

Linda: Speaking of the responsibility we all have, does Mental Health First Aid have the potential to help change the paradigm?

Patrick: What I love about Mental Health First Aid is that it gives us the nomenclature of overall health and makes mental healthcare seem routine. We’d all rush to provide first aid to someone who was bleeding; we’d take them to the doctor or hospital if they needed it. We’d know what to do. It’s part of our mindset, our culture.

Mental Health First Aid takes that mindset and seamlessly converts it to our cause. This is a powerful program because it will not only meet the real needs of those who are in distress from untreated illness, but it will also change our attitudes, and ensure that mental illnesses are perceived and treated as issues of chemistry, not issues of character.

Linda: What else should we as advocates focus on?

Patrick: We need faces and voices, people who are willing to step up. And we need an aligned agenda, ensuring we are organized stakeholders.

We need to be clear on what we expect from the federal government, from state governments, and from insurance companies in terms of transparency and public disclosure. All this requires a lot of stewardship and oversight from advocates, consumers, family members, and concerned citizens.

And we need research and a science-based approach, which will lead to a better mix of treatments and supports to help people with mental illness. Research, like practice, is siloed. We have depression researched here, addiction researched there, schizophrenia researched elsewhere…we’re not communicating and we’re missing opportunities to learn from each other. After all, the brain is the brain — we need to marry all the science.

Linda: And Patrick, can you talk about the intent of the Kennedy Forum?

Patrick: I feel like I’m like Lewis and Clark when they set out to survey the country. I see this from different perspectives — I’m a consumer, but I’m also a policymaker and an advocate. We need to come together and prioritize a common agenda. That’s what the Kennedy Forum is hoping to do.

We must figure out what will give us the biggest return on our investment of time and energy.

If our desired outcome is for people to live independently in their communities; if we want early intervention/prevention; if we want continuous care — we have to back up and think of what is going to deliver that for us. Then we can steer the outcomes with standards of care, protocols, best practices, and lessons learned. We’ll be able to marry that with a reimbursement process that funds better services.

Also read comments from Patrick and Linda in “Kennedy’s Vision for Mental Health Never Realized” on USA Today.

Download and share the “50th Anniversary of Community Mental Health Timeline” and “50 Years 50 Stories” magazine from the National Council.