Tuesday, June 23, 2009


The most difficult part of my position as Vice President of Public Relations for Little People of America are calls and emails about which I can do very little. Often times, the calls and emails are from people whose health care application has been denied because of a pre-existing condition. The first time I received such a note it was from a father who is a little person and has two children who are also short statured. He had recently switched jobs and was denied coverage when he tried to sign up for a new plan. When I heard about it, I thought surely the insurance company was breaking the law. But after asking around, I soon learned that denying coverage because of a pre-existing condition is legal and that being denied coverage is not uncommon in the dwarfism community.

More recently, an email came in from a family with a one-year old who has dwarfism. They also recently switched coverage. Soon after switching coverage, the family was pre-approved for a neurological check-out. After they received pre-approval, the insurance company contacted the family, explaining that the original application was under investigation. Clearly, when the insurance company learned of the one-year-old's dwarfism, it began looking for reasons to drop coverage.

I am not in the health care or insurance industry, but I seen enough documentaries about health care and have read enough about the health care to know that companies look for ways to deny coverage in order to avoid what the companies believe to be the high costs of covering people with pre-existing conditions. What I don't understand is how a health care industry can be established around the goal of low costs and profits rather than support for people and families who need it, i.e. -- everyone. Obviously, that's naive of me. Most every industry and business in this country and else where is founded on the principle of profit. What's difficult to understand though is profit at the expense of infant children, inviduals and families who need coverage. Again, that's naive me. Even so, it's hard to know what to say to people who are perfectly healthy but, like everyone else, need health care. Unfortunately, just because they are not like everyone else in terms of stature, they are denied. There are options for people who are denied -- petition the state insurance board, apply for public health assistance, try to use current law (genetic non-discrimination act - from what I've heard this is difficult to do). Not everyone has time to be an adovocate though, and not all advocacy efforts are successful.

President Obama campaigned on the pledge to make it illegal to deny health coverage based upon pre-existing conditions. Hopefully, that pledge will become a reality soon. Until then, things might get worse for people at risk of losing or not getting health care because of pre-existing conditions. A recent congressional inquiry investigated the practice of insurance companies rescinding coverage. According to the story, congressional inquiry or not, the companies plan to continue the practice.

Monday, June 8, 2009


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.