How LEND/UCEDD Programs are Driving Change by Training and Supporting a New Generation of Family Advocates and Disability Leaders The LEND Family Discipline Network

Presenters Laurene Cichon, MA IL LEND (Trainee) Wanda Felty, Oklahoma LEND/UCEDD Sheryl Feuer, CPSP Cincinnati LEND/UCEDD Fran Goldfarb, MA, MCHES, CPSP California LEND/UCEDD Barbara Levitz, MS Ed WIHD NY LEND/UCEDD Rylin Rodgers, BA Indiana LEND/UCEDD Zipporah Levi-Shackleford, M.Ed. VA-LEND/AUCD Board Trainee Phyllis Shingle, LMSW NM LEND/UCEDD Mark Smith, MS Nebraska LEND/UCEDD

Introduction How do you recruit your trainees… 2015 survey of training programs across the country conducted by the AUCD/LEND Family Discipline Network o Definition o Qualifications o Recruitment Strategies o LEND Involvement

Definition of a Family Discipline Trainee No universal definition 3 common factors o Parent/family member of a person with a disability o Lived experience o Advocacy/Leadership experience

Session Overview Sheryl Feuer

Growth in Number of LENDs with Family Discipline Trainees *Plan to have family trainees in future

2015 Survey Number of Years with Family Discipline Trainees

Identifying, Recruiting and Accepting Candidates For Training Sheryl Feuer Fran Goldfarb

Eligibility

Recruitment Methods * Word of mouth, organizations

Advocacy organizations (Family Voices, Partners in Policymaking, etc.) DD Councils Parent support groups Advisory councils Other Title V programs UCEDDs Disability Agencies/Organizations: Primary Sources

Resource fairs Conferences Clinics Fellow LEND faculty Parent/family listservs Primary Sources Other:

Application Process Formal Interviews * Only if requested by applicant

Selection Criteria

Stipends *Other: unsure of amount

Barriers to Stipend * Citizenship, impact on public benefits, university requirements

Recruitment Tools

Actively Developing Trainees as Family Advocates and Disability Leaders Laurene Cichon Barbara Levitz

Actively Developing Trainees as Family Advocates and Disability Leaders: Actively Developing Trainees as Family Advocates and Disability Leaders: A Family Faculty Perspective Barbara Levitz, MS Ed

The Crosswalk Between the MCH Leadership Competencies and the Family Discipline Competencies Most LEND programs report that family discipline trainees follow the same curriculum and have similar expectations as trainees from the other disciplines.,. In 2005, a Family Discipline Network workgroup developed, and AUCD published Family Discipline Competencies, common curriculum goals and competencies for the family trainees within the LEND interdisciplinary training structure. Suggested Learning Activities/Indicators directly link to the MCH Leadership Competencies while being specifically designed for family trainees.

The Family Discipline Competencies related to developing trainees as family advocates and disability leaders: history of the disability movementbest practice #1: Demonstrate an understanding of the history of the disability movement in the United States and what constitutes best practice in the field today. # 2: Demonstrate an understanding of, and ability to practice advocacy at individual, parent, group and systems levels. # 5: Demonstrate a working knowledge of family systems of support, both formal and informal, at a local, state and national level.

The Family Discipline Competencies related to developing trainees as family advocates and disability leaders: #6: Demonstrate the ability to support other health care providers in their understanding of the family perspective and its importance in effectively serving families. #7: Demonstrate the ability to be an effective partner and demonstrate leadership on the interdisciplinary team. (Handout: Family Discipline Trainees Pre-Post Self-Assessment of Competencies)

LEND Faculty Provide Curriculum that Trains Families as Advocates and Disability Leaders MCH Leadership Competency 12: Policy & Advocacy LEND programs across the network include specific curriculum on Policy & Advocacy Example Strategies-ITAC Toolbox: o Policy and Advocacy: Your Role as a Maternal and Child Health Leader- (Indiana) o Policy Team Learning Assignment and Trainee Report-Back on Assignment- (Cincinnati) National Disability Policy Seminar LENDs send trainees, including family trainees, to the National Disability Policy Seminar to learn how to educate policymakers. Families, self-advocates and professionals are partners for “Hill” visits while in Washington, D.C.

LEND Faculty Provide Curriculum that Trains Families as Advocates and Disability Leaders Family Discipline Competency# 2: Demonstrate an understanding of, and ability to practice advocacy at individual, parent, group and systems levels. Policy & Advocacy: A Framework for Tomorrow's Leaders- NY-Westchester Institute for Human Development The links trainees with local, state/territory or national disability leaders & advocates to conduct an interdisciplinary group guided interview. Curriculum Component Example: The Community Advocacy Leaders Interview links trainees with local, state/territory or national disability leaders & advocates to conduct an interdisciplinary group guided interview.

The Community Advocacy Leaders Interview: A Networking Opportunity LEND trainees are each assigned to a small interdisciplinary group that set ups and conducts a guided interview with a designated community advocacy leader; groups develop a presentation and participate in a share-back session. es The groups that include family trainees are specifically matched with community advocacy leaders who are also family members themselves. This offers family leadership networking opportunities. Ways that community leaders advocate: chairing councils/taskforces; building coalitions; grass root campaigns; capacity building and systems change through legislative actions; funding acquisition for services; reviewing compliance.

Family Discipline Competency #6: Demonstrate the ability to support other health care providers in their understanding of the family perspective and its importance in effectively serving families. Family Partnerships Module: Family Quality of Life, Advocacy and Life Course Perspective- NY LEND-WIHD Curriculum Component Example: The Impact of Disability on our Family’s Quality of Life and Advocacy 1. Following a faculty overview of this topic, each family trainee gives a presentation incorporating Family Quality of Life domains (daily family life, family interactions, advocacy, health, productivity, social & emotional well- being, and home environment) from the collective family unit perspective and as an individual, parent or sibling.

The Impact of Disability on our Family’s Quality of Life and Family Advocacy… 2. Each presentation concludes with key “take-away points” for professionals from other disciplines to consider when interacting with individuals with disabilities and their families. 3. After the presentations, faculty facilitates a summary discussion with all LEND trainees: What is something that you heard today that will impact on how you interact, partner and best support families and individuals with disabilities? or What is something that you might do differently in your practices?

The Impact of Disability on our Family’s Quality of Life and Family Advocacy… 4. As a component of the LEND Leadership curriculum, each family discipline trainee: receives background information on topic; develops a draft PowerPoint presentation; reviews progress with family faculty; and uploads and submits his/her Family’s Quality of Life and Advocacy presentation prior to the LEND session. 5. Following the presentation session, each family trainee completes an on-line self-assessment of his/her presentation. Family faculty review trainee’s self-assessment and add a faculty evaluation.

LEND Leadership Curriculum component: Individualized Training Plan (ITP) Trainees: 1. Self-assess knowledge & skills related to the MCH Leadership Competencies 2. Determine an area to increase competency 3. Meet with faculty to review self-identified goal that may be applied in real-life experiences 4. Report on mid-year progress, modifications and revisions; and end-of-year achievement Family Discipline Competencies Note: The Family Discipline Competencies may be an alternative option for a family trainee’s ITP

Actively Developing Trainees as Family Advocates and Disability Leaders: Actively Developing Trainees as Family Advocates and Disability Leaders: A Family Discipline Trainee’s Experience Laurene Cichon, MA

IL LEND Leadership Curriculum Component: Most Popular MCH Competency Goals: Individual Tailored Leadership Plan (ITLP) Most Popular MCH Competency Goals: 1. SELF: Knowledge Base Critical Thinking Leadership 2.OTHERS: Communication Cultural Competency 3.WIDER COMMUNITY: Policy and Advocacy Working with Communities and Systems The culmination of the ITLP was a Leadership Project which included a poster presentation and discussion at our LEND Open House.

IL LEND Curriculum on Leadership Development (Spread over both semesters – facilitated by LEND leadership faculty) 1. Strengths-Finder discussion of, and how to use, results 2. Discussion and role-play of how to lead with our strengths 3. “Feed Forward” role-play using constructive criticism 4. Skills for accessing our own leadership network 5. Leadership panel discussion – current community leaders discuss their roles, how they lead their organizations, and provide advice to trainees Similar LEND Leadership Modules (Strategies: ITAC Toolbox) Strengths finder-Ohio Nisonger Center Developmental Network Exercise in Career Development & Mentoring-Boston LEAH A Three Winged Approach to Leadership Training- Vermont

IL LEND Curriculum on Advocacy and Policy My starting point –Almost 0, but full of questions! 1. Full Didactic (Class session) A. Explanation of a policy brief, examples, and ideas for our briefs B. Overall process of a bill C. Steps to presenting a policy brief D. Tips and strategies from a Capitol Hill Insider 2. On Our Own: Research and define our argument, work 1-on-1 with the faculty advisor, prepare 1-page brief on our policy 3. Full Didactic: Individual 5-minute “elevator speech” policy presentation to the class Similar LEND Policy & Advocacy modules (Strategies-ITAC Toolbox): Child Advocacy Training Module for LEND Trainees- FL-Mailman Center Writing Effective Policy Briefs Workshop- Washington State

Growing in Leadership and Advocacy My Personal Growth: Helping Kaitlyn in High School Didactics (Classroom sessions) Self-advocacy and Family Post-Secondary Transition Special Education Implementation Cultural Awareness and Diversity Mental Health Disability Arts Clinicals ADOS ABA Tele-health conferences – ASD pediatrician specialist advised on challenging cases – Topics also included bullying, mental health, advocating

Growing in Leadership and Advocacy Allowing Me to Help Others: Clinicals/Visits/Experiences ASD screening – advocating for early intervention TEACCH – value of hands-on, visual schedules Assistive Technology visit – importance of universal access and design, especially in housing Medical Home visit Community Autism Screening Family Visit OT Treatment observation Interdisciplinary care visit Similar LEND Experiences (Strategies- ITAC Toolbox) Early Autism Detection: Screening and Referral-Illinois Medical Home Competencies for LEND Trainees- AAP & AUCD

LEND Training on Advocacy and Leadership Success Stories! High School Sensory Room Advocating and Increasing Awareness PMD AwarenessLatinos with Autism

The Faculty Role: To Inspire, Model and Create Opportunities for Current Trainees to be Family Advocates and Disability Leaders Phyllis Shingle

Faculty member is assigned to mentor, inspire, model and create opportunities. The faculty mentor can be a critical link for family advocates, self-advocates and disability leaders

Mentoring Time Regular times 1-on-1 More time Group mentoring o Issues that have come up o Need a bit of a tribe Modifications or accommodations Professional disciplines AND Family/Self-Advocate o Holding identity as family member AND as professional in their discipline o Additional support The Family Faculty was a big part of what made the LEND experience an extraordinary experience. The 1:1 mentoring greatly impacted my personal development and encouraged me in my growth as a leader. -- Family Trainee

85% Answered Yes. Most indicated they would provide accommodations and support for the family member as needed, just as they would for any other trainee. There were several instances in which the curriculum varied slightly, e.g. Not required to attend clinical rotations, alternate activities, relaxed research requirements, optional assignments, time extensions, etc. Do your family discipline trainees do the same LEND program as other disciplines?

Getting started… Interests and strengths o Diverse backgrounds, experiences and interests o What are you passionate about? o Where do you want to grow? o What can we build upon? Help trainees get: o Motivated o Inspired o Focused o Down to business Touchstone The mentoring was helpful in making me feel as if I really belonged in the group and had as much of a right to be there as all of the people in their graduate programs. -- Family Trainee

Participating from the Family Discipline Role LEND Trainees teach from their discipline. o What does that mean? o Feeling intimidated o What to contribute? Personal place, with personal experiences. Seeing beyond their own experience. Modeling equal place at the interdisciplinary table Not same disciplinary network of support as other trainees I hope I have made some impact. I admit that, as a self-advocate fellow, I often feel like I am the one who doesn't really have an area of expertise, and thus sometimes wonder if I have enough knowledge to be able to really give them something new. -- Self-Advocate Trainee

Communication When to share your story? How much of your story? How to tell your story? What is the message? Representing vs. Speaking for All o “This was my experience…” vs. “All families believe this…” o What is your responsibility? Interdisciplinary communication I feel that I was able to contribute my personal knowledge as someone living with a child with special needs. Living it gives you a whole different perspective than reading about it. -- Family Trainee

Processing the Experience Safe place to vent & process interactions A point where a trainee is upset o “Emotional bombs” o How did you respond? How do you want to respond? o What were you feeling? Why is your blood boiling about this? Empowerment & being on equal footing Self-reflection o Evaluating: What am I gaining from this experience? o Using this experience to make a difference The fellows represented different disciplines, which has made me to see other’s perceptive in a new way and be more skilled in participating in a team. -- Family Trainee

Making Connections and Leadership Opportunities Becoming leaders! Array of options for skill building Encouraging Connecting with opportunities Focusing, What is the goal? Opportunities? “What can I do next?” Faculty mentor’s personal connections I was mentored by [the Family Faculty], who helped me to take chances and encouraged me to see the “possible”. This experience was pivotal in my life to see the benefit of taking chances and opening the possibilities. It changed my approach to work and life. -- Family Trainee

Do You Involve Your Family Trainees in Your Own Advocacy and Leadership Activities

Mentoring Tools IDP plans that allow trainees to have their own unique experience Reflective Supervision o Go where the person leads o Helping them to recognize what they are feeling o Coach them through the process of finding the answer for themselves P.A.T.H. Plans o Planning Alternative Tomorrows with Hope o Often feel like the PATH was a particularly powerful experience o Dreams, goals and action plans o Many return even years later, expressing the great impact it had on their lives o PATH is often a launching place for families and persons with disabilities

I really enjoyed the Leadership project. Working with the Ed. Diag. program at UNM, and with parents, to help the Diag. students understand that the child they are testing is a real 3 dimensional person who is part of a family, a community, etc. -- Family Trainee I took the research project very seriously. I created a survey, with the help of [a statistician]. I sent the survey to fellow Family Specialists across the country. I compiled the data and presented the findings at a National Conference. -- Family Trainee I really enjoyed the PATH process; it helped me visualize my future and my goals. -- Family Trainee

Success! Graduation! Ready for “next step” New network of allies New connections & opportunities New goals for advocacy and system change Often mentees come back to you in different ways Family Faculty - o Will always be there for them! o Will always be rooting for them! o Honored to be their mentor! It was a wonderful experience. The combination of all aspects of LEND make it successful: multi-disciplinary team, various topics in class, in person experiences, mentoring and projects. It was a pivotal experience in my learning for life. -- Family Trainee

Continuing post-training support to promote and insure family advocacy and disability leadership Wanda Felty Rylin Rodgers

Post-Training Results

Post-Training Support to Promote Advocacy and Leadership Previous year LEND graduate mentors the current year LEND trainee LEND Family Leaders – Meet-up to connect the past year LEND Fellows to promote and connect all activities in Advocacy “Back Porch” gatherings in areas or regions of the state to connect LEND graduates with current Trainees Family Faculty keeps in contact with former LEND Trainees, formal or informal methods Social Media, List serve, Groups

Outcomes of Training Next Generation Family Advocacy and Disability Leaders to Promote Change Zipporah Levi-Shackleford Mark Smith

Outcomes of training: the next generation family advocates and leaders Survey examples: o Appointments to DD Services Advisory Committees along with other state level advisory committees o Director for a regional parent non-profit family support group o Interdisciplinary training coordinator for LEND program o Advocacy worker at Disability Rights state Protection and Advocacy Organization o President of their Fragile X State Association

Being a Family Trainee Changes Lives (A Personal Account) Since becoming a Family Trainee I have: o Presented at conferences o Made numerous valuable connections o Learned how to build interdisciplinary teams o Learned more about disability policy and advocacy

Being a Family Trainee Changes Lives (A Personal Account) Being a Family Trainee has me on track to accomplish many goals: o Publish articles o Conduct research o Advocate on a higher level o Change my community o Enrich other families

Outcomes of Training: Our Experience Nebraska Examples: o LEND Family Faculty and Chair of state DD Planning Council o United Way of the Midlands Coordinator of Disability Grants, CAC Member o UCEDD Project Coordinator, Direct Service provider, related disability work o UCEDD Project Coordinator, board memberships including the state PTI o Employment Coordinator for a Direct Service Provider Organization

Summary Discussion Sheryl Feuer Fran Goldfarb