I had the pleasure of interviewing Congressman Patrick Kennedy (D- RI) recently about inclusion of people with disabilities and the issue of mental health. Congressman Kennedy, after representing Rhode Island for 16 years, founded One Mind for Research which is dedicated to dramatic enhancements in funding and collaboration in research across all brain disorders.
Below is part one of the interview. Part two will appear soon on our blog.
– Ephraim Gopin
Yesterday’s ADVANCE Conference was designed to impress on funders the importance of full inclusion and make them aware how their funding can be more inclusive. What do you believe are the biggest barriers to the full inclusion of people with disabilities in all aspects of our society?
Attitudinal barriers obviously affect everything. It’s attitudes that still get in the way of full inclusion and the empowerment of people facing various challenges.
It goes back to the most elemental moral issue that President Kennedy spoke about in the National Address on Civil Rights: “Who among us would be content with the counsels of patience & delay?” Would you be willing to trade places with someone who has a different station in life & be content? It’s the oldest rule in the book, the golden rule- it’s really that simple. It’s about treating others as we ourselves want to be treated.
Everyone becomes nervous because it means they have a moral commitment to do what they know is the right thing. Will you do what’s right or compromise your values for expediency?
If this was your son or daughter, brother or sister, mother or father, would you tolerate the status quo? I hope everyone says no, because we can do much better. We have an opportunity to investigate what works in helping people live the most fulfilled, independent lives they can and to restructure the current pay mix for health care today.
We should ask the consumer, NOT their provider, what they require. Forget what’s paid for now, what’s reimbursed, what the current criteria say. Find out what people want- let’s understand that first and then see how we can make that reality.
We’re in a historically terrific environment to create lasting change. It’s a disruptive environment in healthcare and the challenge is to take money out of the institutions (high cost, low value) and redirect those dollars to offer more benefits and better value. Let’s utilize resources wisely for individual achievement and empowerment so they can live full, independent productive lives given what they’re faced with.
What do you believe are the most effective ways to remove those barriers?
We have often siloed ourselves in the disability advocacy movement by a particular diagnosis. Instead of looking at our common ground and our common struggle, which allows for larger representation for what unites us, we have become a fragmented representation of many different advocacy organizations.
In the disability movement, we’re not always a movement but a collection of many individual enterprises that in total represent a movement but organically don’t really represent a coordinated common endeavor. United we stand, divided we fall contains an essential element of truth.
This October 23-24 is the 50th anniversary of President Kennedy signing the Community Mental Health Services Act (CMHA). We are going to host an event looking back on his historic speech to congress on February 5, 1963. In that address, President Kennedy outlined a process. He talked about prevention, way back in 1963! Prevention and early intervention is now readily available in allowing people to live full and productive lives.
He talked about standardization, discussed using evidence so when we know something works, we make it available to everybody.
He talked about continuity of care, coordinating community support services. We’re at a point now where we can actually realize this through health care reform and have it covered, which we of course have neglected to do until now.
We have become distinct groups- the intellectual disability community, the developmental disability community, the severe mental illness community. There are so many commonalities in what we all need, the notion that we won’t get in the same room with one another because our agendas are different is just self-defeating. That’s why I co-founded One Mind for Research because we’ve divided this one organ by disease. We need to understand the complexity of this organ called the brain and how we can unite together to create lasting change.
This is an important anniversary and is the catalyst for why we’re bringing all the stakeholders together. The conference is not a one and done. It’s the beginning of an effort to make the most of healthcare reform and all the changes we are seeing take place.
At this anniversary event we’re going to discuss what we got wrong, what we got right & how the new laws of parity and health care reform can be used to fulfill the original vision of President Kennedy as articulated in his address to Congress. I hope we will be successful.