UCSF’s 14th Annual Developmental Disabilities: Update for Medical Professionals took place this March 5-6 and it was one of the most inspiring ever, but first…
Did you know that people with developmental disabilities are 4 to 6 times more likely to die from a preventable disease than the regular population? More about that later.
What I loved about the conference this years is that most of the presenters, many of them our own grantees, painted a vivid picture of what it is like to seek medical care with a disability (not pretty), and then showed examples of what they were doing to change things, including:
- Dr. Alicia Bazzano of the Achievable Clinic in Culver City, CA., a Patient-Centered Medical Home (PCMH) for thousands of individuals with developmental disabilities in Los Angeles County. The health center utilizes a multidisciplinary approach in which practitioners work together to assess and care for patients in a comprehensive, collaborative manner.
- Dr. Matthew Holder of the Lee Specialty Clinic in Louisville, KY.,where the overwhelming majority of clinicians and staff have dedicated their entire professional lives to the care of patients with IDD. Some are also parents of children with IDD.
Other highlights of the conference included:
- A discussion about new options for community living in California, during which out esteemed grantee, Dr. Clarissa Kripke, the director of UCSF’s Office of Developmental Primary Care talked about the CART Model, a new and holistic approach to improving quality of life for people with developmental disabilities that includes primary care services designed to meet patients complex needs, health advocacy services and yearly health assessments.
- A description of the Special Olympics Healthy Athletes Program (More about that here)
- Eye opening talks by leaders in the self-advocacy movement, including Alice Wong of the Disability Visibility Project, Ari Ne’eman of the Autistic Self Advocacy Network and Bruce Oka on the history of the Americans with Disabilities Act (ADA) of 1990.
Dr. Lucy Crain and Geraldine Collins-Bride, RN, MS, FAAN, co-chairs of the conference and pictured above, gave this years Shriver Award to Mary Lou Breslin, MA, of the Disability Rights Education and Defense Fund (DREDF). Mary Lou gave a moving talk that put the 25th Anniversary of the American’s with Disabilities Act in historical context. Thanks to the tireless work and advocacy of individuals like Mary Lou, Bruce, Alice and Ari, the world is becoming a more accessible place for people with disabilities.
But still, said Mary Lou, in a review of 256 specialty medical practices:
- 56 reported they could not accommodate a patient (with a disability)
- 9 reported that the building was inaccessible
- 47 reported the inability to transfer a patient from a wheelchair to an examination table
- Only 22 reported the use of height-ajustable tables of a lift for transfer
- 44% of gynecological practices were inaccessible.
Could this be why people with developmental disabilities are 4 to 6 times more likely to die from a preventable disease than the regular population?
We are proud to support the work of our grantees who are dedicated to the future of health care access for people with disabilities. Thank you!