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FCIC's New Health Advocacy Document Receives Excellent Reviews


Leaders of national organizations representing physicians and nurses in the field of intellectual and developmental disabilities shared these comments:

Successful patient care can often be hampered by having inadequate personal and health information between the individual with developmental disabilities, their family and caregivers, DSP's and other agency staff, and the healthcare provider. "My Health Passport" is a wonderful document that contains basic and essential health information as well as personal characterizations of the individual. I highly recommend it.

Seth Keller, MD. President - American Academy of Developmental Medicine and Dentistry

My Health Passport is an excellent tool that nurses can use to help ensure that individuals receive appropriate health care and services. It is simple to understand and includes information relevant to the individual's particular needs, which could make the difference between a successful hospital/clinic visit… or a difficult experience for both the individual and the healthcare team.

Mary Alice Willis, RN, MSN, Executive Director of Developmental Disabilities Nurses Association

Florida Center for Inclusive Communities is excited to announce the dissemination of My Health Passport, authored by Dr. Elizabeth Perkins, Research Assistant Professor and Health Coordinator. My Health Passport is designed to support individuals with intellectual and developmental disabilities (IDD) to share critical health information that might be needed for inpatient hospital/clinic visits.  During these circumstances, an individual will interact with several health care professionals who might not be very familiar with providing care to someone with IDD. My Health Passport is an effort to overcome such barriers to optimal care, by providing pertinent and easily accessible information regarding that individual’s unique support needs.

Response to the availability of My Health Passport has been enthusiastic. Nationwide,  faculty and health care professionals from such notable places including NYU’s Langone Medical Center, University of Pittsburg - Medical Center, University of Illinois at Chicago, and University of Rochester - Medical Center, have requested copies.  In Florida, several agencies have requested copies or are already downloading copies for immediate use, including United Cerebral Palsy of East Central Florida, Gulf Coast Down Syndrome Society, Hillsborough Achievement and Resource Centers, the Tampa Bay Region of Children’s Medical Services, and several nurse consultants for the Agency for Persons with Disabilities.

Dr. Perkins comments, “Although I knew that My Health Passport would be a useful tool, I am surprised by the immediate widespread and enthusiastic response!  Though other versions of health passports already exist, the aim was to make FCIC’s My Health Passport relevant to the specific needs of people with IDD, to make it user-friendly, and eye-catching. The fact that it has garnered so much attention so quickly is very gratifying. What is more surprising it appears to be a versatile tool - and also has other uses that I hadn’t anticipated, such as for persons who are Deaf or Hard of Hearing, and for disaster management/emergency preparedness! An agency that provides residential services is also going to use it to provide quick and readily accessible information for new and temporary staff. I’m just very glad that many have embraced it and I’m equally hopeful that many individuals’ health care experiences in hospitals will be improved from using it!”     

My Health Passport is available free of charge in both English and Spanish versions and can be downloaded at http://flfcic.fmhi.usf.edu/projects/health.htm   Dr. Perkins also has a limited quantity of hard copies available.

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