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 two of the interview. Read part one where the Congressman discusses the barriers to full inclusion.
– Ephraim Gopin
The Health Care Affordability Act is a transformational opportunity for us- but not a guarantee. We need to do as we have always done (as my father called it: The March for Progress): we need to continue to push advocacy and to show up when the decisions on implementation are being made by the different states so this law will become a reality in practice.
We’ve had great early success with the reforms that have been implemented thus far; for example, young people having health coverage until age 26. Overall health care reform gives us a chance to change the sick care system to a health care system.
So even if a federal law is passed, it will still come down to the individual states and their implementation?
I liken it to civil rights- President Kennedy said that “the proposition we weren’t being treated equally was essentially a moral issue” and then they delivered the Civil Rights Act which said we need to be treated equally. But civil rights needed follow-up legislation: fair housing legislation, voting rights act, fair employment. It needed all of these implementing practices to give life to the principle that we should be treated equally. The world didn’t just change because we agreed on civil rights- it had to be defined.
I think that metaphor applies very well to this battle. We won a great victory when we passed healthcare reform and before that the passing of the Mental Health Parity and Addiction Equity Act (MHPA). It was very fortuitous that it was signed into law two years before healthcare reform. I wonder whether it would have survived the negotiations on the reform if it had not already been the law of the land.
I read that there are class action lawsuits being filed in California and New York alleging violations of the Mental Health Parity Act. Some advocates charge that federal rules have not been drawn up to enforce the legislation. What still needs to be done?
The beauty in MHPA is in its simplicity and its name- parity. It’s about equality. It’s about guaranteeing the same coverage for the brain as we’d provide any other organ in the body if it were in need of medical attention. It’s not about mental health, it’s about equality. (Of course it is about mental health which doesn’t get equal treatment, payment, the whole litany.)
I can’t emphasize enough how important it is to be clear on the messaging. If we’re perceived as asking for something new which will come of this- new treatment, reimbursements, therapies, research and discoveries- people will say they’re too new and we can’t afford them. But we already know that yes, the brain is part of the body; yes- it needs to be treated the same and yes- that means it needs to be paid for in the very same way we would pay for leukemia, AIDS, diabetes, asthma, cancer or other illnesses. It’s about guaranteeing equal coverage. If that is the road we go on, these things by necessity will happen.
The class action lawsuits are like civil rights (NAACP lawsuits) which will help form the law. It’ll provide the case law that will define what parity means, similar to needing case law to define civil law. Because there’s a big vacuum defining what parity means, the administration will need to finally release their decision on how to define parity.
Coming back to advocacy, public disclosure requirements by insurance companies and public entities that pay for health care is essential because if you care about the end result (better treatment), you need to know if you’re achieving progress or not. You need to have measurements. You need to have a way of verifying whether people are getting similar treatment or are being discriminated against. This does not mean only collecting anecdotal stories. A public reporting guarantee advocates the ability to discern whether they’re getting equal treatment or being discriminated against.
If discrimination is occurring, then we’ll know if a class action lawsuit is required. The only way for the Department of Labor of a given State to intervene is when you have no recourse. That requires evidence but if people refuse to talk, there’s no evidence. That’s exactly what the insurance companies are counting on. To have a picture whether this is happening in the micro or macro, we need to discern if there are patterns of discrimination.
Finally, as a former member of Congress, what are your thoughts about the possibility of real policy reform by this Congress that will enable persons with disabilities to have flexible work incentives?
We need to understand that a lot of decisions won’t be made in Congress. People will think we took care of the issue and want to take care of other things.
The question is: Do we pay for non-medical support services- such as housing, employment, support of living services- and if we pay for those, can we measure their dividends in reduction of medical costs, custodial services, social services, a reduction in a whole array of other publicly funded budgets.
That is at the heart of healthcare reform- if it’s about treating the whole person and in the least restrictive environment, if it’s about doing what works, then we of course should pay for stable supportive housing, vocational rehab, support of employment, transportation and living services support.
In this environment we need to demonstrate the obvious. We need to prove what our guts tell us to be the truth. These services are going to require less of the other kinds of costs and services that not only are more costly but do less to honor the dignity of the human person. In the end, we want to keep people independent, not dependent.