When you have a child with a disability, your life shifts dramatically. For some of us, it’s a steep learning curve. As our child grows and we learn more through experience, reading, and attending conferences. But many of us want more. We want the medical professionals in our lives to better understand disability. As our children become adults, they want to strengthen their knowledge and advocacy skills as well.
Enter LEND: Leadership Education in Neurodevelopmental Disabilities Program. LEND trains individuals with disabilities, their families, and healthcare professionals in a variety of ways to improve the health of infants and youth with disabilities.
There are 60 LEND programs across the United States and its territories. Each of those programs vary a little bit. So what about Virginia LEND?
Who better to talk about it than those who are directly involved? Virginia LEND leaders were thrilled to answer 3 questions:
1. What does LEND mean to you?
Angela West, MS; Multicultural Specialist, Center for Family Involvement: As a person with a disability, LEND is all about collaborating with professionals and family members. We all have something to give to an interdisciplinary team and it is just not belonging to a single role. When I roll up to the table to talk about disability, I’m not just a self advocate, I am a family member of a person with a disability, and I am also a professional that works in the disability field. Through the classes and other activities, I had that opportunity to meet different people from other disciplines and see how crucial other supports, that I may not ulitalize, are to my peers with disabilities. In the LEND experience, I hope all feel supported, embrace growth, and find their passion.
Matthew Bogenschutz, Ph.D. Director, Virginia LEND: For me, Va-LEND represents collaboration, leadership, and culturally competent family and person-centered care. People with disabilities rely on professionals to work well together, honor the preferences and needs of people with disabilities and their families, and to lead a process that gets results! That is what Va-LEND is designed to teach professionals. For self advocates and families, Va-LEND represents a way to learn how healthcare, education, and social service professionals think. Advocates and family members in LEND can also influence the way professionals see them.
Flip Grey, MSW Co-Director, Center for Family Involvement; Virginia LEND Family Faculty: As a parent of children with a range of disabilities, and some myself, I know the struggles of navigating disability systems, services, and policies while figuring out where you fit and how to balance work, life, and play. Whether to make decisions, inform or advocate, the voices of family members, and people with disabilities should be more than present; they should be front and center in leading change. LEND provides an environment that fosters exactly that through every aspect of the program! Through LEND classes and activities, family members and self-advocates learn and collaborate together with professionals to better the lives of people with disabilities, their families, and the community.
2. How has LEND changed your life?
Angela West, MS; Multicultural Specialist, Center for Family Involvement: My LEND experience confirmed my passion for teaching about how to best collaborate with people with disabilities and their families. It begins with the relationship within the interdisciplinary team. I was able to meet some amazing people during my class that really pushed me to think outside of the box. I could not just use my typical answers because many of them wanted to know more about a topic. It showed me that people are really committed to growing and learning. I really do believe that the best teachers are the people that are constantly learning.
Matthew Bogenschutz, Ph.D. Director, Virginia LEND: I was a LEND student when I was studying for my degree in social work and now I’m the director of Va-LEND. LEND changed my life by helping me see people with disabilities and their families as full partners in all that I do as a researcher, as a practitioner, and as a leader in my field.
Flip Grey, MSW Co-Director, Center for Family Involvement; Virginia LEND Family Faculty: LEND hasn’t just changed my life, it was the beginning of a path to change. It’s difficult to keep this short so here are a few ways that LEND has impacted me:
· First, the LEND experience is a pillar of learning and competency acquisition that never stops. Every year, I learn from the trainees, alum, family mentors, families and children referred to our clinic, and my colleagues in Va-LEND or through the many networks that LEND is a gateway to. Opening this door leads to endless growth and opportunities.
· It showed me how family members and self-advocates could realize a seat at the table as equitable and influential team members with lived wisdom alongside professionals from a variety of fields. Not just at IEP team meetings or medical consultations but in a variety of settings (as mentors, policy and systems influencers, program developers, etc.). The potential is there for LEND leaders to embed the value and practice of family and person-centered leadership into our communities. It’s all about what you do with it!
· It built my confidence and skills as a family leader to mentor others on their leadership path to seed our communities with strong role models and peers who are embedding change and leveraging expectations. Being involved in special interest groups and networks has provided avenues to share and build on ideas with the support of family and self-advocate leaders across the nation and U.S. territories.
· It gave me the opportunity to explore topics of interest, such as sexuality education and supported decision-making agreements from which I laid stepping stones to jump from to help my daughters and other families. Both of these topics have turned into class discussions that I lead, and this year, my eldest daughter co-presented with me.
3. How do you see LEND participants change during the experience?
Angela West, MS; Multicultural Specialist, Center for Family Involvement: I have had the privilege of several of my friends go through LEND. It has been a joy to watch them discover a new passion or a different approach to the topic of disability. I also appreciate how the LEND faculty give people the opportunity to ask hard questions about disability and provide time for tough conversation within a learning environment.
Matthew Bogenschutz, Ph.D. Director, Virginia LEND: It is so great to see self advocates and family members come away from Va-LEND with more confidence and more skills to advocate for what they need; in healthcare, in education, and in policy! It’s often a very powerful change. And I often see professionals leave Va-LEND with a much stronger understanding of the strengths of people with disabilities and their families and with real commitments and skills to partner fully with them in their practices.
Flip Grey, MSW Co-Director, Center for Family Involvement; Virginia LEND Family Faculty: Seeing LEND alum rise as leaders and the impact they have on our communities is probably one of the most fulfilling moments after watching their growth throughout the program. LEND alum are like an elite club where members remain connected, exchange information, and share accomplishments. New this year was the establishment of a Va-LEND newsletter to share stories from trainees, alum, family mentors, faculty, and staff. It’s a way to keep us all connected with information, opportunities, and celebrations. We are only in the second edition but have already highlighted disability policy education outreach, trainee leadership projects, alum success, program improvements, and impacts on family mentors. I can’t wait to see the positive impacts of Va-LEND published through this newsletter!
Want to learn more about LEND? Want to find out how to become a LEND trainee? Join Angela, Matthew, and Flip for a virtual live event on May 11th, 2022. They’ll share more about what LEND is and how to become a part of it. Just click here!