This is a guest blog by Clarissa Kripke, MD, FAAFP, Clinical Professor Director, Office of Developmental Primary Care
Every year, the University of California San Francisco sponsors a conference for health care professionals on developmental disabilities. This year’s conference will focus on the self-advocacy movement. This generation of people with disabilities has grown up in the community. They want to live independently, with people of their choosing, or with family. They have friends. They want to be a part of the solution, to work, contribute, vote, direct their services, and have full access. They insist on, “Nothing About Us, Without Us.”
What are people with developmental disabilities telling us about their unmet health care needs? They have told us they need:
- clinicians with experience and expertise
- trained clinic staff
- health education
- support navigating the health care and insurance systems
- alternative formats for patient materials
- support for decision-making and communication
- flexible scheduling
- accessible medical equipment
- specialized transportation or home care
- coordination with other agencies and services
- collaboration with families and direct care professionals
People with disabilities need access to a full range of services which are not yet readily accessible such as hospital dentistry, custom wheelchair design, crisis and behavioral services, transition support, specialized mental health, and augmentative communication specialists. This is the community-based health care delivery system that we need to develop. The system needs to wrap around people with developmental disabilities who live in the community. It is a key piece of the solid infrastructure that supports successful community living.
The Office of Developmental Primary Care is a program in the Department of Family and Community Medicine at the University of California, San Francisco. Our mission is to build the capacity of the health care system to serve adults with developmental disabilities. We do this through clinical service, advocacy, research and training. By partnering with disability advocates, parents and professionals, we are working to develop the services that Californian’s need to sustain full and successful integration into all aspects of society. We need your engagement and support.
While the conference is primarily targeted to health professionals, community members are welcome to attend. For more information: Developmental Disabilities: An Update for Health Professionals Conference.
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