Special Hope Foundation’s grantee educates and inspires the medical community
“When I was in med school,” says developmental-behavioral pediatrician Lucy Crain, “maybe a total of 4 hours was devoted to developmental disabilities, mostly cerebral palsy, epilepsy, mental retardation (before we began using the term ‘intellectual disability’) and Down Syndrome. Autism was once briefly mentioned as a differential diagnosis in a patient in clinic.”
She and Gerri Collins-Bride, RN, MS, ANP, FAAN are directors of the Continuing Medical Education Course Developmental Disabilities: Update for Medical Professionals presented by the UCSF School of Medicine and the UCSF School of Nursing. Their 13th Annual Conference took place March 6-7.
The two have had rare opportunity of providing coordinated care in UCSF “medical homes” across the lifespan for their patients with disabilities and special needs, Dr. Crain as a pediatrician and Collins-Bride as an adult nurse practitioner . They continue to be a team with the conference efforts, despite Dr. Crain’s retirement from clinical practice.
This years conference theme was the self-advocacy movement for individuals with developmental disabilities and covered topics across the lifespan on autism, ADHD, Tourette’s Syndrome, Genetics, Epigenetics, Cerebral Palsy, Health Insurance for children and adults with autism, adaptive transportation and more.
Highlights included:
- Clarissa Kripke, M.D.‘s talk about Ability Bias: the assumption that people with disabilities must adapt to an able bodied society. Dr. Kripke also spoke of the need for a solid infrastructure to support the services and supports of people with disabilities.
- Stacey Milbern, self-advocate and program manager of the Center for Independent Living, gave the Shriver Lecture, and did and excellent job of putting the audience in her shoes. “Who is not in the room today,” she asked, “who would want to be? Why not?” She gave an eye opening historical perspective of disability, spoke of progress made, and progress still needed.
- Susannah Kenley’s moving talk about the lessons her 29-year old sister, Laura, who has CHARGE Syndrome, has taught her,
- Several medical update talks by specialists in the field of disability, including a talk by pediatric orthopedist Hank Chambers about treatment options for motor disorders, and another by neurologist Tom Koch who talked about typical and atypical epilepsy and treatment options, showing lots of great illustrative videos.
The Special Hope Foundation has provided grants to make this conference possible for the last three years.
The mission of The Special Hope Foundation is to promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.
Thank you, UCSF School of Medicine and School of Nursing, for the work you are doing to build a world where people with disabilities are valued and cared for. We are looking forward to next year!
