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.

Opportunities

On June 3, I flew from Chicago to Washington D.C. to represent Little People of America in a meeting between Kareem Dale, the Special Assistant to the President on Disability Policy; Jeff Crowley, the Director of the Office of National Aids Policy and Senior Advisor on Disability issues; and representatives of the Justice For All Action Network (JFAAN). The Justice For All Action Network is a coalition of disability led organizations that came together following the Presidential Election in 2008. The idea of the group is to voice disability concerns and interests in Washington DC as the new Presidential Administration develops policy. As a national membership organization, LPA was invited to join the group back in November or December of 2008. When JFAAN secured a meeting with Dale and Crowley, LPA was one of about 12 groups representing JFAAN.

The goal of the June 3 meeting was similar to the original goal of the coalition, influence the President on policy issues such as long term services, housing, education, employment, technology and transportation. Though the other organizations representating the disability network are much more schooled on issues like housing, technology and employment than I am, I thought the trip to Washington was a great opportunity for myself and for Little People of America. The meeting, and the JFAAN Network in general, gives LPA the chance to participate in a broad disability coalition. While it is great that we are participating in the coalition, the trip to Washington reminded that if LPA wants to pursue interests outside the sphere of our organization, we need to do more on a policy level.

The groups representing JFAAN at the meeting (groups like ADAPT, National Council of the Blind, the Hearing Loss Association, Self Advocates Becoming Empowered) all have specific legislative agendas that support the respective organizations. Furthermore, most of the groups could indentify specific legislation in Washington that supports their agenda. For example, ADAPT supports the Federal Community Choice Act, legislation that would help people with disabilities live in their own homes instead of institutions. The National Council of the Blind supports legislation that would require electric cars to implement some kind of auditory signal. LPA has interests that overlap with other organizations and disability specific legislation (for example a health care reform package that makes it illegal to deny coverage based upon pre-existing conditions), but we do not have a specific legislative agenda agreed upon by the organization. It'd be one thing if we didn't need an agenda, but there are specific pieces of policy that would support people with dwarfism:

1. Implementation of the most recent ADAAG (Americans with Disabilities Act Accessibility Guidelines) Regulations which would enforce a 48 inch reach on things like ATMs.
2. The implementation of the Kennedy-Brownback Bill which would provide accurate informaiton to parents of infants diagnosed with disabilities such as dwarfism.
3. Echoing what was said above, health care legislation that makes it illegal to deny coverage based upon pre-existing condition.

Sitting in the meeting on June 3, I thought about the importance of developing a specific policy agenda organization, so that in the future, if members of LPA travel to Washington, we can be heard, and not just seen.