Hot off the desk from the new director of CDC, Dr. Tom Frieden, are his five priority areas for the next four to eight years under the Obama administration.  Each of Dr. Frieden’s priorities has an element of “Nothing About Us Without Us.”  Let’s take them one at a time.  

1. Improve Support to States and Localities.  We currently have only 16 out of 50 states that have a CDC-funded disability and health program. In any future initiative by CDC to get states and cities more appropriations for public health, let’s not forget that disability is a broad public health issue that needs representation in the remaining 34 states, who at the present time have little to no incentive to start new programs given the massive budget cuts and layoffs that most state health departments are experiencing.
2. Strengthen Surveillance and Epidemiology. This is another hot-button issue in the disability field. We need more comprehensive surveillance systems that provide a broader understanding of the ‘sub-layers’ of health needs among children and adults with disabilities. New funding streams are driven by data, and good data sets require strong surveillance systems and sound epidemiology.
3. Focus on Global Health. While we still have a long way to go in improving the health of our own nation’s citizens with disabilities, we have much longer trajectories in reaching the international community of people with disabilities. In many developing nations, people with disabilities are still marginalized and left to fend for themselves with little or no support from their government.  The social determinants of health – housing, employment, education, and health care – are all much worse among people with disabilities than virtually any other group in their society. 
4. Improve Policy Effectiveness.  Dr. Frieden is a ‘big picture’ leader.  As the former New York City health commissioner, he led the charge in banning smoking in restaurants and bars, banning trans-fats from restaurants, and requiring certain restaurants to post calorie information in prominent locations.  He is definitely interested in lowering the rate of smoking in this nation and reducing the obesity epidemic by encouraging more physical activity and better nutrition. Dr. Frieden needs to be informed that people with disabilities have much higher rates of both – smoking and obesity – and any campaign to reduce these health risks should include representation from key members of the disability community.
5. Support Health Care Reform.  Dr. Frieden will likely focus some, if not most, of his attention on ‘prevention’ as his front-line attack in the health care reform debate. When Congress returns from the summer break, we need to make sure that the interests and needs of people with disabilities are represented, including turnkey issues such as removal of barriers to health care access, supporting community-based living vs. institutional care, and ensuring that insurance companies do not discriminate against people with disabilities because of a ‘pre-existing’ condition, ie., disability.  Dr. Frieden should know that access to healthy foods, fitness centers, medical facilities and the environment is a continuing problem in the disability community and should be a major priority in his policy-setting initiatives. Without access to good health, there is no health.

This is the perfect time for our new CDC director to recognize that there is a community of citizens that has been marginalized and underrepresented in the public health arena for many decades. The “Nothing About Us Without Us” mantra that has transformed the disability community into a force in its own right needs greater representation in public health from the top down.