Jon Weil Jan Hodgson Louisa Di Pietro TAGC Montreal 2011

1. Fostering collaboration and advocacy between genetic counseling educational programs and professional organizations and the disability community Jon Weil Jan Hodgson Louisa Di Pietro TAGC Montreal 2011

2. The imperative for fostering collaboration Ethical imperative In order for counselees to make decisions that are appropriate to their needs and values, they must have relevant information concerning life with disability Practical basis Thus genetic counselors must have the knowledge and experience to provide that information and understand its potential meaning and value for counselees This is an ongoing issue for all of us The purpose of this workshop is to share experiences and, where possible, discuss cross cultural issues

3. Fostering collaboration • Tutorials and clinical placements • Active involvement with support groups/disability groups • Advocacy - individual and systemic

4. Clinical placements – Australian experience • 2 days a week for 8 weeks in 1st year • Nested within “genetic counseling and the community” tutorials • Support groups/community organisations/public health units • Observe professional practice and undertake relevant tasks • Supervised by experienced professionals • Assessment and reflective journal

5. Students reflections - benefits • Gave valuable insight into experiences of living with/parenting a child with a genetic condition • Left with an appreciation for community-based efforts made by families and organizations • Gained experience talking with families and health professionals and further development of counseling skills • Developed additional skills • Networking opportunities • Others gained insight into genetic counseling profession

6. Student reflections - challenges • Feeling able to “make a contribution” • Role unclear for students/consumers • Project component not well defined • Time management

7. Comments, your experiences?

8. Clinical placements are the most straightforward, relatively non-problematic means of collaboration • In addition program personnel and other genetic counselors can also have direct involvement with disability support and advocacy groups • However such activities may involve concerns about appropriateness and potential conflicts of interest

9. Working together

10. Louisa Di Pietro • Trained advocate with professional and personal experience in genetic health issues • Education and community development specialist, Thalassaemia Australia 2006 - 2010 • Current Director of the Genetic Support Network of Victoria (GSNV)

11. GSNV • Umbrella organisation incorporating over 150 support groups in Victoria and nationally • Vibrant and active network representing individuals/ families affected by genetic conditions • Co-located with clinical service (GHSV) at Royal Children’s Hospital, Melbourne

12. Our value • Non clinical side of genetic health service • Supports services • Adds value and builds capacity • Option for referral • Person/family focused • Adds perspective

13. How GSNV collaborates • Tutorials • Clinical placements • Joint participation in research • Professional genetic education Successful collaboration rests on • the ‘value’ placed on the contribution of support and consumer groups • the attitudes of health professionals

14. Major Challenges How to establish and maintain formal lines of mutual engagement in order to achieve agreed outcomes How to ensure this engagement is valued by genetic health services Context - an increasing demand on services due to advances in: • availability of genetic testing • understanding of implications of findings

15. Discussion 1. To what extent should genetic counseling training programs and individual health professionals • engage with disability and support group communities? • foster and support formal collaborations? 2. Good examples of how to do this?

16. Contact details Jon weilj@berkeley.edu Jan jan.hodgson@mcri.edu.au Louisa louisa.dipietro@gsnv.org.au