1. University of Oklahoma Health Sciences Center
Oklahoma LEND’s Innovative Approach to Family-Professional Partnerships
Leadership Education in Neurodevelopmental and related Disabilities (OKLEND)
University of Oklahoma Health Sciences Center
Megan Peters, DSc; Wanda Felty; Mark J. Fisher, PhD; Mary Hudson, PhD; Sharyl K. Kinney, DrPH; Katerina Ntourou, PhD; Mark Wolraich, MD
Purpose
This presentation describes the educational methods used in OKLEND to impart the value of family-professional partnerships and the impact this process has had on OKLEND trainees.
OKLEND Structured Experiences with Family Mentors in Family Life and Advocacy
Family mentors are intentionally assigned to provide a Family Life experience or Advocacy experience
Family Mentors are paid for their time and expertise through a partnership with the Center for Learning and Leadership/UCEDD
Impact of Family Members as Trainees, Mentors, and Faculty on Long-term Trainees (2015, 2016)
Background
Family-Professional partnerships are vital to effective health, education, and community services1,3
Partnerships develop out of mutual respect for the unique strength, culture, and expertise of families and professionals2
OKLEND has developed an innovative approach to building family-professional partnerships through evolving program components
Impact: Family Members as Trainees
Family Mentor biographies are presented in a publication
Trainees write reflections on the two experiences
Family Mentors participate in a de-briefing on the process and offer recommendations to assure the growth of the Trainees in developing parent/family-professional partnerships
Impact: Family Members as Mentors
Family Involvement Expanded in OKLEND
Family as Faculty: Faculty guiding Trainees’ discovery process
Family as Trainees: Side-by-side learning, shared expertise, partnerships
Family as Mentors: 1) Provide unique experiences to Trainees focused on Family Life
2) Family Advocacy focused on Parent-Professional Partnerships
Impact: Family Members as Faculty
Data Based on Responses to LEND Surveys from 2015 and 2016
Next Steps
Explore methods of family involvement across LEND programs
Examine the impact of involving self-advocates on OKLEND Trainees
Investigate the influence of OKLEND training on leadership and advocacy in Trainee Graduates from Parent/Family and Self-advocate disciplines
Reflections from OKLEND Trainee Graduates
Family members provided a strong and unique perspective that I feel contributed to the quality learning we experienced in this course.
This helped me understand what it looks like to be really family centered. It will have a huge impact on how I include families in my future services.
It helped me learn how to better serve families and to make them equal partners in their care.
Having a LEND trainee representing family issues on our team was greatly influential in shifting the way the entire team viewed the role of the family.
I will always have our Family Mentor's voice in the back of my mind when talking to the individual with the disability and their family. I don’t think there is a way to have person-centered, family-centered practices without having that voice in the conversation.
References
MCH Leadership Competencies at
Association of University Centers on Disabilities (AUCD) at
Goldfarb F, Devine K, Yingling J, Hill A, Moss J, Ogburn E, Roberts R, Smith M, & Pariseau C. (2010). Partnering with Professionals: Family-Centered Care From the Parent Perspective, Journal of Family Social Work, 13:2,
Maternal and Child Health Bureau (MCHB) Family Involvement
1998
MCHB adds Parent/ Family as LEND discipline
2004
First Family Faculty meeting at AUCD Annual Conference
2011
MCHB guidance includes individuals with developmental disabilities in Family Discipline
2016
MCHB guidance acknowledges Individuals with disabilities as potential Trainees
Oklahoma LEND
Maternal and Child Health Bureau Grant T73MC00033
Health Resources and Services Administration
U.S. Department of Health and Human Services