Health Care Reform for Adults with Developmental Disabilities: an update – San Francisco Chronicle (blog)
“I recently saw for the first time an 18 year old woman with several severe developmental issues. I am happy to see her, but I have no training in any of the problems that she has, and she has no problems in which I am trained. I am worried that the care she would get from me would not be the highest. None of my colleagues have any more expertise than I do, which is a weakness of our clinical program.”
This is the kind of complaint that Dr. Clarissa Kripke,Director, Developmental Primary Care, Department of Family and Community Medicine at UCSF hears all too often, and why The Arc San Francisco, The Golden Gate Regional Center, The Health Plan of San Mateo and the faculty of UCSF have developed a pilot program, The CART MODEL that will provide care and health care coordination for youth and adults with developmental disabilities.
In case you wondered:
Clinical services in University and community settings
Advocay to influence policy
Research programs in health services and education to rigorously study the cost effectiveness of clinical and training innovations
Training and technical assistance for medical professionals and caregivers
The plan will include yearly health assessments conducted by experienced developmental disability nurse practitioners to ensure that the needs of individuals with developmental disabilities and their caregivers do not go unrecognized.
The plan will also provide training for family and professional caregivers in how to recognize when medical attention is needed.
This past weekend, a summit on health care and developmental disabilities convened at UCSF to share the progress made by the CART Collaborative and to identify ways to move forward. Dr. Lucy Crain, co-director of the Developmental Disabilities Medical Update Conference at UCSF (Register now-it fills up!) opened the meeting with an eloquent talk that made the case for improving healthcare for people with developmental disabilities.
Updates from the CART Collaborative were followed by actual stories from the field:
- Josh Bamberger, MD, San Francisco Department of Health on Health and Housing
- Molly Kennedy, a Consumer’s perspecitive
- Lynne O’Hara, RN from the Special Hope Foundation on funding issues and trends
- Paul Glassman, DDS on Home Dental Care
The progress that has been made by the CART Collaborative is inspiring. Dr. Mary Giamonna of the Health Plan of San Mateo shared the great strides that have been made in the development of the Esperanza Clinic, a pilot program that will pave the way for other clinics. She is actively recruiting MD’s and staff, and patients with developmental disabilities are anxious for the clinic to open.
Jennifer Dresen talked about the ways in which The Arc San Francisco is building a structure for Health Advocacy. Dr. Megumi Okurmura of UCSF explained the need for research to help her team understand the needs of the DD community, so that effective healthcare and community programs can be created with the goal of improving the lives of the developmentally disabled. Research is also needed to inform and guide policy makers (more about this later).
Dr. Clarissa Kripke talked about training (who needs it? Not just physicians. Patients, family,caregivers,case coordinator and many, many more…) See the online toolkit developed by the Office of Developmental Primary Care HERE.
Wow, with all this great momentum, lets just sit back and wait for things to happen, right?
If you have a family member of someone with a developmental disability, or if you have a developmental disability and advocate for your own health needs, policy makers need to hear from you. Contact advocacy organizations (ASAN, Autism Speaks, TASH,Arc, AAIDD, AUCD, and People First are some examples) and tell them your stories. Tell them that you want to help make health care for the disabled a priority.
Got autism questions? Need resources? Email me here firstname.lastname@example.org and I will do my very best to help.
Read the first three chapters of A REGULAR GUY: GROWING UP WITH AUTISM here.