Family Trainees in LEND Barriers, Strategies and Successes

1. Family Trainees in LENDBarriers, Strategies and Successes Fran D. Goldfarb USC UCEDD, CA Terri Abrams, Rochester Center, NY Anne Bradford Harris, Waisman Center, WI Ruth Roberts, Boling Center, TN

2. Fran Goldfarb, USC, CA, Chair Becky Adelmann, OHSU Darla Cohen, IN Sheryl Feuer, OH Audrey Koertvelyessy, HRSA Paula Lalinde,FL Barbara Levitz, Westchester, NY Jan Moss, OK Elaine Ogburn, VA Crystal Pariseau, AUCD Madhavi Reddy, HRSA Ruth Roberts, TN Laurel Ryan, TN Mark Smith, NE Denise Sofka, HRSA Barbara Wagner, WI Mark Wolraich, OK Jackie Yingling, Rochester, NY LEND Family Discipline Workgroup Wow!

3. Agenda • Introduction • Common Thread for Success: A LEND Family Trainee’s Perspective on a Clinical Mentorship • Family Trainees in LEND Overview • Panel Comments • Fran Goldfarb • Anne Bradford Harris • Ruth Roberts • LEND from the Trainees Perspective • Teri Abrams

4. Common Thread for Success: A LEND Family Trainee’s Perspective on a Clinical Mentorship Terri Abrams, LEND Family Trainee Jackie Yingling, LEND Family Discipline Coordinator Liz Baltus-Hebert, Occupational Therapy Discipline Coordinator SCDD LEND, Rochester, NY

5. Typical Mentoring Experience Trainee in a professional discipline is linked with a family to shadow over a period of time, with the intent of identifying strengths, and to gain an increased understanding and appreciation of how families cope, access supports, and share resources

6. What happens when a Family Trainee is looking for a different kind of experience? Family Trainee and Family Discipline Coordinator design a new kind of mentoring experience utilizing the same objectives, format, and resulting formal class presentation

7. The Process Family Trainee linked with a professional discipline coordinator from the SCDD/LEND program • Family Trainee researched different professional disciplines and chose Occupational Therapy as a discipline she would like to know more about • Occupational Therapy Discipline Coordinator is open to the experience

8. From the perspective of the clinical supervisor • Why OT??? • Designed an ITP to meet Terri’s interests, skills and needs • No specific skills to teach or knowledge to transfer as with an OT trainee

9. I offered opportunities so that her experiences would be as diverse as possible • Widened Terri’s perspective on what constitutes a family: foster family, inner city family, single parent • Their needs were as diverse as the families themselves

10. What did I give to the experience? • Thoughts about what might be most beneficial for Terri to experience • Examination of my schedule, caseload to identify opportunities for those experiences • Notify Terri of the opportunities, allow her to choose which she would like to observe • Ask families’ permission

11. What did I gain from the experience? • Observations from the perspective of a parent of a child with special needs • A second set of eyes and ears and hands • A sounding board for problem solving • Affirmation that my intervention was worthwhile

12. LEND Clinical Presentation Terri Abrams 2007

13. Early Intervention • The system through which children from Birth to age 3 with developmental disabilities receive supports and services. • Established by the IDEA. • In NY funded and administered through the county health department.

14. Occupational Therapy • Occupational therapy is the art and science of directing an individual's participation in selected tasks to restore, reinforce, and enhance performance; facilitate learning of those skills and functions essential for adaptation and productivity; diminish or correct pathology; and promote and maintain health. • Its fundamental concern is the development and maintenance of the capacity throughout the life span to perform with satisfaction to self and others those tasks and roles essential to productive living and to the mastery of self and the environment. • Since the primary focus of occupational therapy is the development of adaptive skills and performance capacity, its concern is with factors that promote, influence, or enhance performance as well as those that serve as barriers or impediments to the individuals ability to function.

15. Occupational Therapy • Occupational therapy provides service to those individuals whose abilities to cope with tasks of living are threatened or impaired by developmental deficits, the aging process, poverty and cultural differences, physical injury or illness, or psychological and social disability. • Occupational therapy serves a diverse population in a variety of settings such as hospitals and clinics, rehabilitation facilities, long-term care facilities, extended care facilities, sheltered workshops, schools and camps, private homes, and community agencies. Occupational therapists both receive from and make referrals to appropriate health, educational, or medical specialists. Delivery of occupational therapy services involves several levels of personnel including the certified therapist, the certified occupational therapy assistant, and aides. • Definition from: www.sunyjcc.edu/college-wide/ota/index.

16. “We need to support each child and family where they are…use our knowledge and resources to support them and their priorities.” Liz Baltus Hebert

17. Visits

18. Variety Different strengths and hopes Fun to watch the children learn and grow. The system When kids lose because people can’t get what they need When personal values conflict with a family’s. Joys and Frustrations

19. So what is the common thread?(And the formula for success?)

20. Disability(Family) + Support = Increased Resilience

21. Disability(Family) • Each family and individual is unique. • Each has gifts and needs of their own. • Culture, SES, etc. all play a role. • Disability is a variable and even varying factor.

22. Support • Must be individualized. • Contributes: skills, information, strategies, or help. • Often must be interdisciplinary. • Must be respectful.

23. Appropriate support is like new sneakers: “Now I can run faster and jump higher!”

24. Increased Resilience • Improved situation. • New skills or strategies. • A sense of being understood or validated. • Additional resources. • An enhanced sense of security or confidence.

25. “Families are sometimes overwhelmed but they can do so many things—incredible things!” Liz

26. "The world breaks everyone and afterward many are stronger at the broken places." --  Ernest Hemingway

27. Family Trainees in LENDBarriers, Strategies and Successes

28. Family Trainees in LEND • N=28 programs • Yes- 18 (64%) • No- 8 (29%) • Uncertain- 2 (7%) • Number of Years • 1-2 years – 9 (50%) • 3-4 years – 6 (33%) • Over 4years – 3 (range from 5-11 years) (17%) • Number of Family Trainees per year • 1 trainee = 7 • 1-2 trainees =3 • 2–3 trainees = 3

29. Barriers to Establishing • None/Very Few = 7 • Funding • Enrollment in University • Minimum Educational Requirements • Curriculum • Supervision • Class Schedule • Recruitment Materials

30. Strategies for Establishing • Develop program and budget funds • Program out of a hospital – not subject to University requirements • Funding from same stipend pool as other disciplines • Trainees in other disciplines who are also parents • Clear trainee qualifications and requirements

31. Strategies for Establishing • Trainee Recruitment • Work with advocacy groups to publicize program • Cast a wide net • Have former trainees help • Look for trainees already involved in the field • Recruit year round • Allow two year fellowships • Collaboration with Parent-to-Parent and local Children's Services Council

32. Strategies for Establishment Flexibility on Everyone’s Part

33. Barriers for Maintaining • No/Very Few – 7 • Family Crises • Trainee Recruitment • Balancing LEND and Family (and Work) • English as a second language • Academic Support • Dropping Out

34. Strategies for Maintaining • Application included questions regarding barriers to participation and need for accommodation • Support/Partnering from other fellows • Allow two year fellowships • LEND activities that focus on leadership and advocacy • Support from Employer • Accommodations on assignments and due dates

35. Strategies for Establishment Flexibility on Everyone’s Part

36. Successes • Trainees have taken positions with other family support agencies • Identified by People Magazine as a Local Hero • Became Parent Faculty • Increased networking with other national disability leaders and professionals

37. Successes Graduated just like everyone else

38. Panel Presentation

39. WI MCH LEND, Waisman Center, UW-Madison LEND Co-Director – Anne Bradford Harris UCEDD Director- Daniel BierFamily Faculty – Barbara Wagner Family Trainees since 2005/06 (3 years)

40. UT Boling Center for Developmental Disabilities • Family Faculty: • UCEDD/LEND Director Fred Palmer • Training Director – Ruth Roberts • Family Faculty – Laurel Ryan Tennessee Knoxville Memphis

41. USC UCEDD at Childrens Hospital Los Angeles Training Director: Patrice Yasuda LEND Director: Marion Taylor Baer Family Faculty: Fran Goldfarb Family Trainees since 1995/96 (12 years)

42. Strong Center for Developmental Disabilities University of RochesterGolisano Children's Hospital at Strong Training/LEND Director: Stephen Sulkes Family Faculty: Jackie Yingling Family Trainees since 2006/07 (2 years)