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Family Teams Of Young Adults With Disabilities And Their Parents And Siblings As Trainers For Medical Students

People First Language Handout (147KB) [download]
Disability Stigma Fact Sheet (151KB) [download]
Program Description-Family Teams Training Medical Students on Caring for Patients with Disabilties (1).doc (267KB) [download]

Briefly describe the activity and its purpose.

As part of a medical school course, Foundations of Clinical Medicine 1 at New York Medical College, students attend a half day activity focused on family and person-centered care. They first receive a didactic session on the topic and then attend small group breakouts each facilitated by a "family team" who share their journey and perspective on family centered care. Family Teams are comprised of an older teen/adult with disabilities and their parent and/or adult sibling. A few groups have parent-only presenters who share the experiences of individuals with more complex medical and developmental issues. During the medical student didactic, the family teams have the opportunity to gather, network and review the objectives of the interactive break out groups.


What are the expected learning outcomes for trainees?

By the end of these small group sessions with families, students will be able to:
1. Describe health care needs of patients with disabilities
2. Describe the effect of the disability on the patient/family health and wellness
3. List key factors in optimizing the care for patients with disabilities
4. Describe the challenges for people with disabilities in accessing health-related services
5. Apply "person-centered" and "family-centered" approaches to working with people with disabilities.

Briefly describe the positive impacts this activity has had on trainees.

Through an evaluation and thank you notes, the program has confidence that trainees have increased understanding of family perspectives and satisfaction with the course in that they would recommend the course to others. "You taught us in a straight-forward, moving manner that we must approach each person with respect and be willing to listen. We now have a better understanding of the importance of a health care team that includes patients and families as equal members, if not leaders, who have a major role in decision-making". The course directors and faculty facilitators similarly rate the program highly in post event evaluations.



Briefly describe any lessons learned or challenges associated with implementing this activity.

This is a required session for all first year medical students with approximately 230 students currently attending. Older teens and adults with intellectual and developmental disabilities and their parents and/or adult siblings are eager to speak with future doctors in order to share their personal health experiences and suggestions about how health professional can provide quality medical care. Happily, the program is finding that it is becoming more difficult to identify self-advocates to participate because many are now either attending post-secondary programs or are employed in the community. However, the network of potential participants has increased over the years, many arranging schedules to return as presenters, year-after year, because they value this opportunity. Additionally, because of importance of including a diverse array of people with disabilities, "parent-only" presenters have represented the voice of individuals with more complex medical and developmental issues who may be unable to verbally communicate their own medical and health care experiences.

One of the successes of this training has been the support of medical school faculty- facilitators whom meet with presenters informally immediately prior to the break-out groups, sit in during the sessions, and are available to offer a debriefing for the medical students immediately after.

Finally, in an effort to effectively train parents and self-advocates about how to tell their personal stories in a way that translates well to an educational format, the program (a collaboration among LEND and Medical College faculty) has developed guidance for families on how to cover the objectives but it leaves the presentation style or format up to the families.



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