National Disability Leadership Alliance

At least one other time, I have written on this blog about a network of national disability rights groups called The Justice For All Action Network. Leading up to the 2008 Presidential, a number of disability advocates met in Washington, D.C. to strategize over ways to leverage power within the Presidential administration about to be voted into office. The Justice For All Action Network, a coalition of national consumer-controlled grassroots disability groups, formed as a result of the original meeting. Little People of America was invited to be part of the group, which, over the past few years, has built up support in Washington, on Capitol Hill and in the White House. The coalition developed a policy agenda that pushes forward issues like employment, education and health care in the context of disability rights. The coalition was a great opportunity for LPA for two reasons. First, the strength of the coalition was able to give voice to an issue very important to people with dwarfism -- making it illegal to deny health coverage to people with pre-existing conditions. And second, participation in the coalition helped LPA raise awareness among other disability groups nationwide.

It is great that LPA has been a part of the coalition, but there has been one critical frustration. While LPA has raised awareness about the organization through participation in the coalition, I have not been very successful at raising awareness about the coalition within LPA. Over the past few years, only a few people within LPA knew about the coalition, even though JFAAN has been written about in email updates to the membership and in the organization's membership newsletter. I have struggled to secure real buy in within LPA, mostly because I haven't done a great job selling the coalition to the board and membership, or getting others involved. Eventually, this will cause a problem because if JFAAN is going to make a real impact on issues in the future, the coalition will need support from the membership of each partner organization.

This past Friday and Saturday, representatives from the JFAAN Steering Committee met in Washington, D.C. for a two-day retreat to develop a new policy agenda for 2011. The retreat was a good step forward for the coalition and was a breakthrough for Little People of America.
The two days were a breakthrough because two members of LPA attended and participated in the event. In addition to myself, LPA's National Employment Committee Chair, Allison Lourash, also attended. As the Employment Chair, and in her day-to-day job on a Medicaid Integration Grant in Wisconsin, Allison is in a perfect position to identify ways in which to make realistic connections between JFAAN's 2011 Employment Policy and the employment needs of people with dwarfism in LPA. In the past, beyond a strong connection to the pre-existing condition piece of health care reform, I have not been able to make the work of JFAAN relevant to the LPA community. With Allison's expertise and experience, she will be able to do that in the employment arena.

The bottom line is that LPA needs to get more people involved with JFAAN. Allison's participation in the retreat and her commitment to join the JFAAN Employment Workgroup is a great first step. Hopefully, this has created some momentum that will lead to involvement from other members as well.

Outside of the retreat's importance to LPA, the coalition also changed its name at the retreat. Jim Wiesman, who represents the United Spinal Association on the coalition said at the retreat, "a name should say who we are. Justice for All doesn't say who we are. It sounds like a place where the Superfriends meet." Jim also noted that he hates the name of his own organization because people often come to his office looking for a chiropractor and asking for an adjustment. A majority of groups agreed that the name should be changed and after a generous debate and discussion, the group changed the name to the National Disability Leadership Alliance.

Repellent

The first order of business for the new U.S. House of Representatives appears to be a repeal of the health care legislation passed in early 2010. Though I've worked in media and communications for nearly 10 years, I don't claim to be a messaging genius. But I am consistently frustrated by what appears to be the overwhelming superiority of Republicans when it comes to messaging. Not just with health care, but with other issues as well, Republicans often strip an issue to a core idea that resonates with large numbers of people. With health care and other issues, President Obama has been criticized for a tendency to over explain a message. Once one explains something too much, the message is often lost. Health care in particular seems to be a perfect opportunity for democrats, or anyone in support of the current health care law passed last year to focus in on a core idea -- everyone has a right to access health care -- in order to build support.

For myself, and hundreds of other people with dwarfism, one simple idea within the current health care legislation was enough to win support of the package. Prior to passage of the law in 2010, people with dwarfism had no recourse if we were denied coverage by an insurance company. Because dwarfism is identified as a pre-existing condition, insurance companies were within the realm of the law if they denied us coverage. I heard many stories of individuals and families who couldn't find health coverage. One tragic example resulted in the death of the brother of a friend and colleague of mine. My friend's brother had a relatively health issue, but couldn't find private coverage and he didn't qualify for Medicaid.

The 2010 Health Care Legislation finally gave people with dwarfism and with other pre-existing conditions a legal tool. The legislation makes it illegal to deny coverage based upon pre-existing conditions. Now, with the turnover in Congress, health care is vulnerable to repeal. The media reports that the House may vote on repeal this coming Wednesday. Fortunately, again according to media reports, the Senate will most likely vote against a repeal. But considering that the Republican majority in the House is much greater than the Democratic majority in the Senate, Health Care appears to be at risk.

I am happy that the President's Administration is mounting a strong defense of the legislation, speaking out on the benefits of the law and the importance of the law. Here is an opinion piece published earlier this week in the Chicago Tribune by Health and Human Services Secretary Kathleen Sebelius.

As the debate around repeal grows louder this coming week, my hope is that people with dwarfism, people with pre-existing conditions, and all people who value the idea of access to services to remain healthy will come forward with a simple message -- health care is a human right; I won't let you take that away.