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.