MN LEND 2020-2021 Fellows Completion Ceremony

My LEND project was the Learn the Signs Act Early (LTSAE) program. This program focuses on community outreach. I was able to connect with Help Me Grow and provide families with education materials on developmental milestones and ways to keep track of their child’s development. I utilized Help Me Grow materials at different settings and was able to connect parents with a service that provides early intervention.

I am so thankful for the experiences I had during LEND. I have learned so much about policy, neurodevelopmental disorders, and community. This past year has been challenging for everyone in many ways. Thank you for showing up and sharing. I want to thank my fellow cohort for sharing their perspectives and stories and the LEND faculty.

For my project I worked on the Family and Individual Needs for Disability Supports Survey (FINDS). My team reviewed the original FINDS survey, its results, and expectations for the upcoming survey revision with stakeholders. We recruited for and completed focus groups of caregivers of individuals with intellectual or developmental disabilities. We followed up with Qualitative Data Coding Analysis for Caregiver themes within the Needs for Disability Supports. The results will inform the updated FINDS study that will inform policy-makers of the needs of individuals, and caregivers within disability supports.

My time as a LEND Fellow has been amazing. It has increased my knowledge significantly in the areas of neurodevelopmental disability, policy, disability advocacy, and research. What I have learned has already been helpful in educating occupational therapy peers through state associations, universities, and rehabilitation centers on the integration of disability and policy in interprofessional diversity, equity, and inclusion initiatives.

My passion in special education and community advocacy grew out of my childhood need to protect my sister with Down syndrome, and later my nephew with Autism. My initial drive to protect and advocate for them stemmed from the traditional Cameroon society where we grew up that viewed disabilities with askance.  In fact, the ancestral religion that the population relied on to explain the unknown regarded disabilities as the devil’s handiwork, causing people with disabilities to be shunned and treated as outcasts.  

It is this background that forms the basis of my project, titled "ICI Community Outreach Education Project." This project seeks to include people with disabilities by building and nurturing community connections between the Institute on Community Integration (ICI) and community leaders, families, and stakeholders from diverse communities in Minnesota. Over a period of four months, my research partner, Sheyhan Gelle, and I met with members of action groups and leaders of cultural organizations drawn from the Somali, Nigerian, and Cameroonian communities. Our last activity was a group session that included family members, friends, and community leaders that deal with people with disabilities from the aforementioned communities. This was a highly engaging session that allowed the attendees to introduce and share their stories/backgrounds as it relates to disabilities. It also allowed us to present our project, receive feedback in a Q&A format, and discuss next steps. Our findings revealed an acute need for resources like education, information, and opportunities for partnership. We also learned that these communities are willing to explore partnering with ICI and MN LEND to advance disabilities-advocacy in their communities. This is, therefore, an ongoing project!

My experience in the LEND program was exceedingly fulfilling. I am forever grateful to Dr Charity Tatah Mentah, Rebecca Dosch Brown, and my mentor Dr Macdonald Metzger, for bolstering my resolve to stay the course and making my dream a reality.

I am a demographer by training and use large, quantitative datasets like censuses in my research. My LEND project is a research paper that identifies siblings of children with disabilities in international census data. As a sibling myself, this research was very personal and challenging as I read literature that both matched and contradicted my experiences.  With the support of my mentors Jen Hall-Lande and Sarah Hall, I wrote a paper analyzing educational enrollment for Tanzanian children who have siblings with disabilities. I am presenting this research in a few weeks at the Population Association of America annual conference in a session titled “Children and Youth with Disabilities and their Families.” My hope is that my future research will continue to explore how persons with disabilities and their families are included in statistical analysis and large datasets. 

Personally, I have learned so much from LEND. The presenters, mentors, and other fellows have enriched my life by opening my awareness to other aspects of the disability community.  I have also grown as a sister and feel much more confident in my ability and education needed to support my sister and my parents in person-centered ways.

In a strange year, LEND was both a space of comfort and camaraderie, and a place that continually pushed and challenged my thinking and worldview. Whether that was through coffee walk and talks with other fellows in the middle of winter, seeing the tools we discussed so often in theory applied in practice to my brother's person-centered planning meetings, or reading a journal article, book club book, or (as enriching) a discussion board thread late into a Wednesday evening (let's be real, it was always Wednesday evening!) before logging into a Thursday morning Zoom meeting from who knows where, LEND is doing incredibly important work in our world by putting people from divergent perspectives into thoughtful and civil conversation. At Cow Tipping Press, it helped carve out space for us to bring on our first program intern with intellectual/developmental disabilities. I'm sad for the year to end but excited for us all to keep putting what we've learned into practice!

My project involved the Transitioning Together group therapy program at Voyager Clinic which helps prepare families of adolescents with autism transition to adulthood. I helped facilitate the parent/caregiver group for the eight-week series. The final session focused on health/well-being transitions, so I presented a list of resources around the topics of self-care, health care system transition, mental health, and relationships/sexuality.

My experience as a LEND fellow has been both rewarding and challenging: rewarding to meet and participate with such a richly talented group; challenging to learn so much about the diversity of perspectives and experiences of individuals with neurodevelopmental disabilities and my role as physician and ally. I am grateful for the time and effort of leadership to put this experience together in the midst of trying times, and am especially grateful to Andy Barnes, Becky Hudock, and my fellow fellows.

LEND has allowed me to learn more about the world of NDD, as well as hear from experts and develop relationships.  As a mom of three children (soon to be four), two of whom have Autism, I have found this experience invaluable. As a professional, I have gained knowledge and resources that I already have been able to start sharing with other 4-H professionals.  

My project will help ensure that Minnesota 4-H is welcoming, accommodating and supportive of youth people with disabilities. In the past, we have hoped that these 4-H'ers would be successful, but have not systemically made efforts to ensure it. My project is part of a two-year DHS Innovations grant and a partnership with ICI. We will conduct needs assessments, develop trainings, put support practices in place, recruit youth with disabilities, and create career awareness in direct support professions. This is being piloted in McLeod and Anoka Counties.  What we learn will be taken statewide to better include this very underserved population in our program.

This year, I collaborated on two projects. I worked with the Center for Advanced Studies in Child Welfare (CASCW) to develop podcasts for child welfare workers to learn how disability is perceived and supported in Native communities as it relates to human services.  I worked with the Self Advocacy Online team to develop a training for people with disabilities to learn about the intersections of race and disability, and how we can foster a more equitable and inclusive community.  

I’ve learned about working with interdisciplinary and multicultural teams to achieve shared goals. I’ve developed skills to be more effective in my work in supporting Autistic people, people with other neurodevelopmental disabilities, and those who work to support disabled people.

For my LEND year, I worked on two projects: 1) Building an inclusive ministry: A faith-based community outreach and engagement and 2) Developing a podcast for The Center of Advanced Studies in Child Welfare (CASCW). We reached out to local faith-based centers and introduced the idea of an inclusive ministry. We’ve created a customized needs-based survey and shared it with the centers. On the masjid side, we have partnered with a national non-profit that is dedicated to creating inclusive masjids and continue to make progress on this project. The focus of my podcast is to highlight and discuss disability at the intersection of race, culture, and religion for the Somali community. My podcast guests will include a Somali elder, a young person, and a previous childcare worker.  

During my time as a LEND fellow, I have grown tremendously, both academically and ideologically. The exposure to a plethora of presenters representing numerous disciplines as well as a vast amount of data and research has helped refine my skills as an advocate and leader for immigrant families and children with neurodevelopmental disabilities.

I am very appreciative of the opportunity to be a LEND Fellow. This leadership training program has allowed me to understand what it is like to collaborate with other interdisciplinary teams, parents, policymakers, faculty, and see how everyone can collectively work together. I truly believe my time as a LEND fellow has provided me with skills and knowledge that will propel me to continue advocating for families like myself. As many of you know, towards the end of my tenure as a LEND Fellow, I lost my beloved baby sister, who was a champion and a fierce advocate for people with disabilities. As someone who had gone through her share of hospitals, procedures, and service requests to name a few, she knew what it was like to give her voice to help someone else. I am honored to be her sister, and will continue this legacy in her name as well. 

For our project, my partner, Irene Asong-Morfaw, and I worked on the “ICI Community Outreach Education Project.” This project spoke to me as I love the idea of bringing about change by collaborating with other individuals and organizations. This specific project allowed me to engage with various community members, which included members of the Cameroonian, Nigerian, Somali communities. Irene and I conducted outreach meetings with members from various education backgrounds, socioeconomic status levels, and varying understandings of what disability is and how it has shaped their lives. Irene and I are hoping to carry this project forward, as there was a highlighted need for more community engagement.

I wanted to extend a heartfelt "thank you" to all my colleagues, you have enriched me with so much knowledge, tenacity and drive. Thank you to my mentors, Rebecca Dosch Brown, Macdonald Metzger, Asli Ashkir, and the rest of the faculty and leadership team. You all have been instrumental in my learning. 

I am a second-year doctoral student in the Education Leadership program at the University of St. Thomas. Also, I am a community LEND fellow at the University of Minnesota. 

My time was an invaluable experience. I truly gained leadership skills and knowledge. I worked with several other fellows on a community project, Building an Inclusive Ministry: Faith-Based Community Outreach and Engagement. We reached out to local faith-based centers and introduced the idea of an inclusive ministry. We’ve created a customized needs-based survey and shared it with the centers. On the masjid side, we have partnered with a national nonprofit dedicated to creating inclusive masjids and continuing to make progress on this project.

I want to thank all of my mentors and project sponsors. Special thanks to Rebecca Dosch Brown, Dr. Macdonald Metzger, Dr. Rebecca Hudock, Dr. Robin Rumsey, and the ICI community.

For my project, I worked in the ICI Telehealth Lab in collaboration with Dr. Jessica Simacek and Dr. Adele Dimian to create a roadmap for providers, individuals, and families that differentiated between trauma symptoms and presentation from other neurodevelopmental and related disorders. I will present on my literature review and then collaborate with clinics and providers to utilize it in their practice. 

My time as a LEND fellow has been soul nourishing. I have enjoyed showing up each week to this space, contributing to discussions, reflective listening, active learning, and building community. I love the deep commitment and passion every trainee brings to the learning experience which allows for a training space to exist that is built on values of diversity, equity, and inclusion. The leadership has been incredibly supportive and just cares for me as an individual. As such, I would also like to thank my fellow cohort members for being especially supportive and willing to share and connect. This is a community I would like to stay connected with for a long time. Both of my mentors have been incredibly supportive and created a space for me to learn and grow. I want to particularly acknowledge all the hard work and support Rebecca Dosch Brown and Macdonald Metzger have done. They were amazing: problem-solving with me and helping me get access to spaces that were challenging to enter.

My LEND project was working to create evidence-based materials for an upcoming child language intervention study. The study will use novel stories to teach children different verb forms. My contribution was using a software program called Child Language Analysis (CLAN) to find the most frequently used verbs in our target age-group for each verb form the study will teach - many hours spent writing code! 

I’ll be starting my speech-language pathology clinical fellowship year this fall in St. Paul Public Schools, likely working with students who are in the transition age. Having spent a lot of time learning about transition services, person-centered practices, and advocacy this year, I hope to apply that knowledge and skill set as I begin my career, so that I can help my students live lives that are meaningful to them!

LEND impacted my personal and professional life. I learned how to advocate for issues that before this year I didn’t recognize as issues. I have a much richer perspective for providing culturally competent care and a deeper understanding of the intersection of race and disability that many of my patients experience. LEND provided a better context to understand my patients, and I have already applied this, recognizing areas for growth in my practice and the organization. As a result, I created handouts given after surgery to patients whose first language is not English, and I will present to my colleagues on culturally-sensitive outcome measures, with a focus on the impacts of culture on motor milestones. My LEND project focused on inclusive outdoor recreation for individuals with disabilities, especially among communities of color. In August, I never imagined the journey LEND would become; thank you all for being a part of it.

For my LEND project, I worked with Kimberly Anderson and Caroline Roberts under Dr. Lynda Lahti Anderson on the FINDS survey, which is a survey designed to better understand the experiences and outcomes of family members who provide support for those with IDD. My role in this project was to help update the language of the survey and facilitate focus groups. Through this project I not only learned how to do qualitative research, but also got a first-hand look at where supports are still lacking for family caregivers. LEND has opened my eyes to a whole new world. 

I think my key takeaways are that no issue exists in isolation; there is always intersectionality and that to tackle this intersectionality, we must work together. After LEND, I feel much more comfortable making referrals, recommending resources, and petitioning legislators. But overall, I cherished the amazing community LEND has cultivated.

This year I worked with Lisa Hilliard and Dr. Liza Finestack on a language intervention project for children with developmental language disorder. We developed materials that will be used to study how these children can be best supported through speech and language therapy. 

What I have taken away most from this year is a growing awareness of how our society’s flawed conception of disability affects my life and the lives of people I love. Though I likely won’t be working directly with policy makers or advocates in my professional life, I can keep discussing these issues with people in my personal life and challenge the preconceptions about disability that are so prevalent.

I am a third-year dental student at the University of Minnesota and a MNLEND Fellow. For my project with MNLEND I conducted a survey of currently-licensed and practicing general dentists regarding the number of individuals with disabilities they actively treat in their office. The survey’s aim was to inquire about the abilities (and/or inabilities) of Minnesota’s general dentists to treat individuals with neurodevelopmental and intellectual disabilities. The motivation behind my project was to bring attention to the lack of training general dentists receive on disability and how that translates to oral health providers being unable/unwilling to regularly serve and treat the IDD/NDD community. With the information I gathered from the survey, I plan to design and present a curriculum change to the University of Minnesota’s School of Dentistry Academic Deans with hopes of improving and increasing the education and training on disability that predoctoral dental students receive.

My time as a MNLEND Fellow was invaluable. As a sibling of a sister with Down syndrome, learning how to become the best possible advocate is a central goal of mine. Throughout the fellowship I was able to gain knowledge in advocacy, disability services, person centered practices and more alongside my interprofessional colleagues. I plan to continuously prioritize interprofessional collaboration as it relates to advocating and serving families and children with NDD/IDDs.

I would like to extend a special thank you to all of the MNLEND leadership, mentors and staff! You all have done an absolutely outstanding job this year under the most uncertain of circumstances. I appreciate you and all of your work!!

For my project I worked with the creators of a motor assessment that is used around the world. The Bruininks-Oseretsky Test of Motor Proficiency-2 (BOT-2) is a tool used to assess the motor skills of children and young adults. My role focused on identifying, securing, reviewing, summarizing, and organizing research related to the BOT-2 and the original version, the BOTMP, to help update the assessment. This assessment is one that is frequently used with NDD populations so within my work I categorized research that focused specifically on NDD.

My first LEND year catapulted my leadership journey down the avenue of policy and advocacy. LEND challenged me to get engaged in ways I never have before including advocating on Capitol Hill in Washington D.C (pre-COVID). As a second year fellow I have worked to improve and refine these skills. I set my efforts on being the most effective that I can be in advocacy and challenged myself to read and learn more about issues to broaden perspectives as I engage in this work.

For my project I worked with the Learn the Signs Act Early Program (LTSAE). A goal of LTSAE is connecting with community groups and organizations that touch the lives of young children, so I completed several outreach activities to share LTSAE promotional materials about developmental milestones with staff and families at several Women, Infants, and Children (WIC) clinics in the Twin Cities metro area as well as with Hennepin County Library.

My time as a fellow has been so enriching! Through interdisciplinary learning, LEND has enabled me to think more holistically about how I can support the health of young children and their families with or at risk of developmental disabilities. I am confident that the knowledge and connections I gained through LEND will extend well beyond this year. I truly feel that I will be a better public health professional because of LEND. A big "thank you" to Jen Hall-Lande, Katie Arlinghaus, and the entire MNLEND leadership team for their help and guidance this past year.

LEND has enhanced my skills to be a leader, advocate, and researcher in the disability field. For my LEND project, I explored current literature regarding the autistic community who also have LGBTQIA+ identities. This project was designed because there is a dearth of research regarding this specific community. Due to a lack of research, this community is at greater risk of adverse health outcomes, which can affect an individual’s ability to live a long and healthy life. To supplement this project, I also submitted a grant to the Autism Intervention Research Network on Physical Health (AIR-P) to conduct structured interviews with this community to inform future policy and practice decisions. This project in conjunction with LEND’s interdisciplinary cohort has taught me that leadership in the disability community is a team effort that should empower individuals with disabilities to live and be valued in their communities of choice.

For my project I worked on revising the national Family and Individual Needs for Disability Support Survey (FINDS). Our team conducted focus groups with family caregivers to make sure we were asking questions relevant to the lived experiences of caregivers. Through qualitative analysis, we’ve identified common themes such as burnout, dehumanization, and need for knowledge. I look forward to continuing with the survey so policymakers, researchers, and other stakeholders can better meet caregiver needs.

LEND has been such an enriching experience! I will miss having a built-in space to engage in critical discussions about the field with a group of experts and learners with diverse perspectives. I will carry forward this culture of open-mindness, respect for lived experience, critical thinking, and pursuit of equity. I’m so grateful for the LEND leadership team and all my fellow fellows and hope this community continues. In-person reunion anyone?

Participating in MN LEND has shaped me as a leader more than I could have anticipated.  The generosity of the LEND leadership team and fellows to share professional knowledge and lived experience has deepened my awareness of the many challenges families face while interacting with disability service providers and education systems. Grateful to all.  I will continue to share and receive from this expanding network of people committed to equity and inclusion as I move forward.  A special thanks to my mentor, Amy Hewitt, Beth Fondell and the ICI community for sharing their wisdom and more. 

My LEND project involved participating in shared leadership to develop the Minnesota Inclusive Higher Education Consortium, a learning community of collaborating stakeholders committed to expanding postsecondary opportunities for students with intellectual disability. We facilitated six webinars, held regular state interagency meetings to create a funding map, developed policy recommendations and surveyed college programs and state agencies to identify needs and barriers.

My project involved using qualitative coding techniques to analyze data from surveys sent to parents of ASD-diagnosed individuals who are minimally verbal, to assess the caregivers’ long-term goals for their children’s development, and I created a poster of our findings for presentation. In April, I led a session focused on genetics and their involvement in NDD/ID, creating a short educational video for the group and facilitating a group discussion on the topic in our weekly meeting.

LEND has opened up several worldviews and lived experiences that I hadn’t considered before, as a neuro-typical person whose professional background is through a medical lens. The openness with which my fellow members of the cohort shared not just their knowledge, but their lives, both the joy and pain, was humbling. I would like to express an extra special sense of gratitude toward Stacey Brandjord and Dr. Amy Esler, for their leadership and guidance in our research, and to the LEND and OLPD leaders who made this experience possible.

My MNLEND experience has given me the opportunity to advance inclusive policy, research, programs and advocacy with people with disabilities in the United States and in African countries.  My MN LEND research and training experiences focused on transition-age youth with Autism and mentoring interventions to support their success, to advocate for inclusive outdoor experiences, and to understand the extent to which Minnesota and other communities are truly integrated at every level, such as monitoring deinstitutionalization or access to employment.    

All of this would not be possible without the support of my mentors and project sponsors.  Special thanks to Rebecca Dosch Brown, Dr. Macdonald Metzger, Dr. Rebecca Hudock, Dr. Lindsey Weiler, Dr. Sheryl Larson, Dr. Lynda Lahti Anderson, and the ICI community.  MNLEND expanded my professional opportunities and network. I am forever changed, and am excited to take the powerful learning, relationships, and renewed intentions to bring about a more inclusive society. 

I was motivated to become an ASD advocate by my son. As a MNLEND Fellow, I met and gained knowledge directly from people with disabilities who shared their stories, scholars who shared their research, and cohort professionals. I collaborated on issues like education, antithetical accessibility disparities, and inclusive community participation policies that impact the disability community. I learned the value of assembly and organizational alignment to effect change for this underrepresented population.

My project emphasized community living access by illuminating intersectionality, a social barrier concept impacting people with disabilities. It encompassed building a mini online training course to inform self-advocates through the Self-Advocacy Online website about the intersections of racism, diversity, equity, and disability, representing language and practices encountered in the general population. It was proposed to ensure advocates' mental safety when confronted with such disparity practices and terminology. 

My heartfelt appreciation goes to Macdonald Metzger and John Smith for their instrumental mentorship in advancing my disability community and policy engagement competencies.

My project involved exploring and informing about the overlap and intersection of trauma and disability. I met with foster parents and community service providers about resources and services for people serving this community. With the interviews and information gathered I am creating a podcast for child welfare workers to help increase their knowledge in this area.

My experience as a LEND fellow has been wonderful and has connected me with people from so many backgrounds. It was rewarding to meet and participate with such a richly talented group. I am so honored to be part of this community.

For my project I worked with the MN Act Early Team which is about reaching out to families, communities, and organizations to promote early screening and early identification of potential developmental delays. I did outreach during the pandemic which included online luncheons, zoom meetings, and handing out Help Me Grow materials such as milestone books and brochures to parents. My partner Kristin Norderud ​and I will be doing outreach at Hennepin County WIC All Staff meetings as we will explain materials to WIC staff and co-developed a plan to get additional materials to families they serve. 

During my time as a LEND Fellow I feel that my knowledge on neurodevelopmental disabilities has increased immensely by working with multiple disciplines. These trainings helped me gain much more understanding which puts me in a better position to provide support and advocate for families and children with neurodevelopmental disabilities. LEND has helped me grow professionally and especially as a leader through policy, which I have learned is a very important way to make sure your voice is heard, and more importantly, for your voice to help create change.

My journey with the MNLEND program during these nine months has been rewarding. It has empowered me to understand some critical situations affecting persons living with disabilities.

My team worked on a project on inclusive faith-based centers. The project was focused on emerging issues that perpetuate inclusive gaps within faith-based centers/immigrant communities. Acknowledging that hope among the persons living with disabilities in immigrants’ communities is quickly diminishing. The project sought to foster joint action by churches/mosques in the Twin Cities areas in confronting barriers affecting inclusiveness. The project also aims to reduce despair mounting among persons living with disabilities, which complicates further inclusive situations. The critical role of churches/mosques and communication in disseminating information on inclusiveness became an impetus for a joint discourse between faith-based centers’ workers and communicators during the project. Inclusiveness was prioritized as the emerging issues, deemed to have a significant bearing on the plight of persons living with disabilities within the Twin Cities areas. Along with other fellows from the 2020/21 cohort, we distributed a survey to a diverse group of interfaith groups in Minnesota. The survey results allow us to understand the needs of interfaith groups and specific supports, including training needed to ensure that the leadership understands the importance of inclusion, access, and participation. Therefore, we promote a common understanding among interfaith groups that people with disabilities can be included within the worship life of their ministries.