The LEND Self-Advocacy Discipline Competencies is a product of the LEND Self-Advocacy Discipline Network (LSDN), formerly known as the Purposeful Inclusion of People with Disabilities (PWD) Workgroup. Leadership Education in Neurodevelopmental and Related Disabilities (LEND) training programs must include individuals with disabilities as Self-Advocate trainees as a distinct discipline alongside graduate students, family members, and community trainees. Self-Advocates offer an invaluable perspective in the scope of the training: the lived experience of disability.

The PacWest LEND Regional Consortium created a series of learning modules on cultural crossroads in disabilities. Each learning module has an accessible PDF, video description, and discussion questions/reflections with facilitator talking points. 

Every Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is unique and offers different academic, clinical, leadership, and community opportunities. This also includes different approaches to family-professional partnerships and training on family-centered care.  Family mentorship of future providers, where families share their lived experience with trainees from professional disciplines, is one approach that several LEND programs across the network have implemented. While not required, many find that family mentorship of professional trainees is an excellent model to promote effective, caring family-professional collaboration and has long-term benefits for the workforce serving individuals with developmental disabilities and autism. A mentor provides guidance to help grow knowledge and experiences to help the mentee grow into the best version of themselves; in LEND, that mentor is a leader in the disability community who has lived experience.

At the 2014 EHDI Annual Meeting (Jacksonville, Fla.), LEND audiology trainees from multiple programs participated in a problem-based workshop that focused on the intersection of Autism Spectrum Disorder and hearing loss.  

Many LEND programs include a Family Mentorship component in which trainees are paired with families of children with disabilities or teen self-advocates and join them in everyday activities.  This document describes several versions of the mentorship pairing, requirements of different programs/trainees/families, and things to consider when creating or redesigning a family mentorship component of the LEND experience.

The Prepared4ALL training aims to mobilize disability organizations and their networks to foster connections with emergency and public health professionals to build trust, create sustainable relationships, and get a seat at the emergency planning table. The training offers an innovative approach for building relationships between local disability organizations and preparedness planners while learning about disability inclusion and the emergency management system.

We know this training takes a while to complete and are thinking about how we can shorten the training while maintaining efficacy.

The RITA-T is a Level 2 screening test: it is to be administered on young children identified as at risk for ASD or who scored positive on a Level 1 screening test or providers are worried about. Examples of a Level 1 or universal include the MCHAT-R (Modified Checklist for Autism in Toddlers- Revised) that may or may not have been administered before the RITA-T.

We conduct quarterly solution focused learning (SFL) sessions, which are an application of problem-based learning, with a local family with a child or teen with a disability. Through these class sessions, trainees research most of the content areas required or recommended by the Maternal and Child Health Bureau. The additional content areas are addressed through lectures or service-learning experiences. This educational method allows faculty to observe trainees from a range of disciplines over the course of the year. Through SFL, which requires active engagement, we have found trainee motivation for the classroom component of LEND to greatly increase. Trainees rate this as the most significant part of their LEND experience each year. Trainees interview each family two times, select learning issues to research and present to their peers, and collaborate in interdisciplinary teams to find solutions to challenges the family and child may be encountering. The third meeting with each family culminates in trainees presenting their findings. This mutually beneficial exchange is enhanced through telecommunication. Our trainees in Hattiesburg (MS) and two other cities in Arkansas outside of Little Rock participate through video conferencing with the family.

The Utah Regional LEND, or URLEND, covers five states including Utah, Idaho, Montana, Wyoming, and North Dakota. The URLEND learning approach includes a year-long series of didactic seminars, a collaborative leadership project assignment, and a broad array of clinical services. URLEND uses multiple distance technologies to synchronously connect groups of trainees, family mentors, and faculty across our partner states at multiple sites to reach defined learning objectives. For example, the four-hour didactic seminars are held each Friday and hosted by faculty at different sites. The seminar is broadcast through an Interactive Video Conferencing system to other sites in the network and streamed in real-time on Canvas, the online course management system used in the URLEND program. The Video Conferencing system is interactive, meaning that the presenter can view and respond to audience members at different sites in real-time. A live visual feed of the presenter and their presentation, as well as the room of participants of each distance site is displayed on a screen at each of the distance sites. Participants can ask or respond to questions by toggling on personal mics, and addressing the larger group. This simulates the environment and experience in a live seminar setting, but allows trainees from multiple sites to work and learn together. Trainees are encouraged to contribute to group discussions, just as would be expected in a traditional face-to-face setting.

Distance technology is also used to facilitate smaller collaborative and group work in the leadership projects. In these projects small groups of trainees work on a substantial project, designed to culminate in a meaningful outcome. The learning objective of the leadership projects is to provide trainees with a rich multidisciplinary experience that will lead to the development of multiple leadership competencies throughout the eight months that they work on these projects. Trainees are purposely assigned to groups where members span not only different disciplines, but are also from different sites, often including multiple states, so as to foster the development of communication skills that by necessity must include distance technologies. Leadership groups decide on appropriate technologies for their individual group, but include meeting synchronously using such tools as Google hangout, Skype, and Adobe Connect, which in our case is integrated into Canvas, our online course management system. These tools allow groups to communicate in real time, and in the case of Google hangout and Adobe Connect, provide a means to record meeting minutes and share documents and computer screens as the meeting is taking place. Using distance technology team members are able to build relationships and collaborate on a regular basis, usually weekly, even though they may live hundreds of miles apart from one another.

As part of the Collaborative Quality Improvement Planning in LEND and DBP Programs*, project trainees and faculty completed StrengthsFinder as part of a year-long leadership development exercise. Dominant talents were identified, and the potential to develop strengths was discussed individually and as a LEND cohort, working together on varied teams during the year. A Team Report was provided to each of the 12 Leadership project small teams and the 4 interdisciplinary clinical training teams. Faculty were taught how to utilize StrengthsFinders to facilitate MCH Leadership Competencies such as self-awareness, team building, and leadership strategies during their work with trainees.

"Words have power. Self-advocates with intellectual disabilities have clearly stated that negative language leads to harmful action, discrimination, abuse, negative stereotypes, disenfranchisement, and violence...words and labels can cause others to think that people with intellectual disabilities are not able to achieve the things that others can achieve."