The underreported pediatric stories of last year

Children_With_DisabilitiesChildren’s Judith Palfrey, MD, FAAP, president of the American Academy of Pediatrics writes about the most urgent children’s health stories that were neglected by the media last year:

This past year, the newspapers and blogs were full of stories about H1N1, obesity, autism and health care reform. These are all important and newsworthy topics, but there are other stories that are perhaps less flashy, but nonetheless have worth on their own merit.

As far as I am concerned, one of the biggest of these is the story of our adolescents and young adults with chronic conditions and disabilities. Quietly and without fanfare, as a result of the great innovations of medicine and surgery, the numbers of adolescents and young adults with significant health problems has been rising in the United States. Young people with cardiac disease, cystic fibrosis, sickle cell anemia, Down Syndrome, congenital anomalies, HIV and neurodisabilities are living longer and fuller lives than youngsters with these conditions ever did in the past. That’s the good news and certainly a big part of the story.

But the bad part, the part of the story filled with complexity, drama and nuance, is the fact that society has not woken up to recognize the change that has occurred. As a result, there are challenges all around for these young people and their families. There aren’t enough programs to help young people with chronic illness and disability finish high school, prepare for college and careers. There are too few physicians and nurses trained to deal with their unique needs. And, when there are services and programs, they are in limited supply.

Young people from traditionally under-served communities experience the double whammy of having a disability and then having nowhere to turn for health care, mental health services, vocational and career planning and recreation. There are major disparities in health care and health outcomes for young people with chronic conditions. Two striking examples are that black boys with asthma have four times the mortality rate as white boys and that whites with Down Syndrome live on average twice as long as blacks (age 50 versus age 28).

Over the past three and a half years, my colleagues at the Institute on Community Inclusion and I have been working on a large project entitled Opening Doors for Children and Youth with Disabilities and Chronic Health Conditions. We’re partnering with community based organizations in Boston to learn how to improve access to community services for children with disabilities from under-served communities.

Opening Doors has three embedded research projects. Project Solutions is a study of early screening for disabilities. For a long time, we’ve been aware that many children from minority and poverty communities have later identification of their disabilities….by as much as a year or two.  This puts these children at a huge disadvantage since they are late getting started with the health and developmental interventions that we know can be so meaningful. Project Solutions has already been able to document that we can integrate early screening into primary care practice for our patients who face many financial, cultural and linguistic challenges. We’re currently designing a multi-lingual brochure to encourage parents to seek help if they are concerned that their child is very ‘different’ from other children. This brochure has now been translated into five languages.

Project Adventure pairs students 8 to 12 years old who have disabilities and/or chronic illness with a mentor who goes with them on a weekly basis to the YMCA to participate in inclusionary recreation. This program has multiple goals, including enhancing the disability services at local area Ys, improving awareness of the developmental benefits of regular exercise, and establishing a corps of community mentors with the hope that some of these mentors will choose a career in working with children with disabilities. If you are interested in learning more about Project Adventure please contact Kelly.Horan@childrens.harvard.edu.

Opt4College is our research project geared most directly to transition-age students from traditionally under-served communities. We’re studying whether a computer-based training program can engage youth with disabilities and chronic illnesses from traditionally under-served communities and provide them with the knowledge and skills they need to apply to and enter college. We’ve recruited many students from the Boston public schools for the program and are eager to involve students who attend Children’s clinics. Anyone interested in learning more about Opt4College should contact Morgan.Crossman@childrens.harvard.edu.