AUCD Emerging Leaders Map

The AUCD Emerging Leaders Map highlights the contributions of diverse trainees across AUCD's network. The theme of this year’s map is Supporting Resiliency and Self-Determination for All. The Map provides an opportunity for you to explore and learn more about each emering leader.

Our hope for this year’s map is to showcase the many diverse ways that emerging leaders are working to enhance access for people with disabilities and facilitate dialogue and collaboration between centers. The Emerging Leaders Map is a great way to explore ongoing activities in the network, to brainstorm ideas for your program or center, and to use as a networking resource for future opportunities!

VIEW the 2022 AUCD Emerging Leaders MapQuestions about the AUCD Emerging Leaders Map should be directed to AUCD's Maureen Johnson.

 
 
 
 

Maria A. Del Rosario

Discipline: Family Discipline
Center for Human Development UCEDD/LEND

I am a Filipino woman who migrated to Anchorage, Alaska for more than a decade now. I earned a medical degree from the Philippines. I am currently a Health Program Manager at Senior and Disabilities Services, State of Alaska. I love reading, appreciate art, love travelling and cooking. 

Image Description: I have brown skin with short cropped hair and wearing a pair of black eyeglasses.  I am wearing a plain olive greet short sleeve T-shirt and smiling against a purple and silver backdrop.

 

1. What does resiliency mean to you?

It means gathering inner strength and having self-assurance, courage and determination to move past the obstacle while Being solution oriented, flexible, practical , logical

2. What does self-determination mean to you? 

Being able to size up yourself truthfully and having goals, making decisions that fits your size.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Sharing with them their positive attributes, being encouraging and supportive that meets their needs and validating their circumstances.

4What are you doing within your center/program to support resiliency and self determination? 

I am genuine with my feedback and at the same time, when asked , provide ideas and encouragement and possibilities within the state and resources. 

 

 

 

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Caitlyn Francis

Discipline: Psychology
The University of Arizona LEND

Caitlyn was born and raised in Roseville, California. She graduated from the Barrett Honors College at Arizona State University with a double major in Psychology and Family and Human Development (while competing on the NCAA Division 1 Women's Volleyball team). She then earned her M.A. in School Psychology from the University of Arizona, where she is also completing her Ph.D. She graduated as an ArizonaLEND fellow in 2020 and currently works at the Anxiety Clinic at Banner Medical Center in South Tucson. She will begin her APA pre-doctoral internship at the Help Group in Sherman Oaks, California, in August, where she looks forward to continuing to serve patients with autism in the school and community mental health setting. She likes to spend time with her husband and two kids during her free time, watch movies, hike, go to the beach, and play volleyball.

Caitlyn, a white woman with long brown hair and brown eyes, is standing outside on a sunny day. She wears a blue collared shirt and a black blazer. She is smiling at the camera.

 1. What does resiliency mean to you?

Resiliency means being able to persevere through difficult situations, while also learning and growing from the circumstances. As my clients grow resiliency I can see their confidence and self-esteem grow. They learn how much they can handle and the growth that can come out of difficulties.

2. What does self-determination mean to you? 

Self-determination is when a client is able to figure out who they are and what they want out of life, and then work towards their goals to find happiness. This can be a process and may require clients to work towards self-realization and self-acceptance. It is very satisfying to watch a client take the steps to understand themselves and then make the choices in their life to reach their potential.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can help them build the coping skills to handle difficult life circumstances, and the mental capacity to view their trials as learning opportunities. We can guide them to learn what their needs and desires are and teach them the skills to plan for the future to reach their goals. We can also connect them with available resources to build their network.

4What are you doing within your center/program to support resiliency and self determination? 

We can help them build the coping skills to handle difficult life circumstances, and the mental capacity to view their trials as learning opportunities. We can guide them to learn what their needs and desires are and teach them the skills to plan for the future to reach their goals. We can also connect them with available resources to build their network.

Social Media

@CaitNoelle14

 

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Claire Adams

Discipline: Self-advocacy
The University of Arizona LEND

Claire Adams is an Autistic adult and advocate. She is very passionate about disability rights and takes pride in her Autism as an inherent part of her identity. She works with Diverse Ability Incorporated as a peer navigator for disabled teens and young adults. She is currently studying Voice Performance at her local community college. Her hobbies are singing and going to concerts and festivals.

Image description: Claire, an olive-skinned woman with long straight dark brown hair with bangs, outside on a sunny day. She wears red glasses and has brown eyes. She also wears a purple blouse with pink and blue flowers on it.

1. What does resiliency mean to you?

Being faced with hardships and taking the initiative to try to eliminate barriers that come with it.

2. What does self-determination mean to you? 

Taking control of your own life.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

I think people should be aware of their cultural backgrounds and other aspects of their identity and how that impacts the way they live, and very importantly, they need to know what they want or do not want. From there, they should find their own voice that will work to steer their lives in the direction they want.

4What are you doing within your center/program to support resiliency and self determination? 

I speak on issues within the Autism or greater disability community and what I would like to see done about them. I work on various projects such as modules for health professionals and presentations relating to such topics.

Social Media

Claire Adams

schmaire_bear

@AmericanEDMGirl

 

 

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Megan Trout Momeyer

Discipline: Speech language pathology
The University of Arizona LEND

Megan Momeyer grew up in Phoenix, AZ and lives in Flagstaff, AZ. She has a MS in Clinical Speech-Language Pathology (with distinction) and a BS in Accountancy (magna cum laude) from Northern Arizona University. She is a Speech-Language Pathologist (SLP) and Certified Public Accountant (CPA). Megan's many hobbies and interests include yoga, meditation, and outdoor activities like biking, kayaking, hiking, and camping.

Image Description:Headshot of a pale-skinned woman with long, wavy, light brown hair and green eyes tilting her head to the side and slightly smiling. She is wearing a pink collared top and metal earrings.

 1. What does resiliency mean to you?

My gut response was that resiliency means never giving up despite challenges. After reflecting, I think resiliency means pushing ourselves to overcome challenges while still remaining mindful of the impact of those challenges and our limits. Sometimes, this might mean being mentally strong enough to accept the things we cannot overcome. Resiliency means changing our viewpoint from "If I don't do it, I'm giving up and I fail" to "I accept my limits and I try my best." Resiliency means avoiding blame for our life circumstances and accepting and embracing all parts of the human experience.

2. What does self-determination mean to you? 

Self-determination means making our own life choices rather than others making them for us.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can support people in our lives to help them be resilient and promote self-determination by encouraging and actively listening to them with compassion. We can work to avoid judgement, blame, and speaking for others. We can promote understanding and freedom for people in our lives to make choices and speak for themselves.

4What are you doing within your center/program to support resiliency and self determination? 

I offer support by being a living example of resiliency and self-determination and encouraging others to do the same. I helped NAU's Institute for Human Development successfully apply for a scholarship program to start a self-advocacy group for AAC device users and their families.

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Toni Saia

Discipline: Rehabilitation Counseling
The University of Arizona LEND

Dr. Saia is an Assistant Professor at San Diego State University within the Department of Administration, Rehabilitation, and Postsecondary Education. She is a disabled woman with a deep commitment to social justice, inclusion, and equity for all. Her professional work history has involved advocating for a progressive understanding of disability within the applied fields. A shift from diagnosis to disability as a culture and identity. In her free time, she loves traveling and riding roller coasters.

Image Description: white woman , wheelchair user with short straight blonde hair, pink-clear framed glasses wearing black pants and black shirt with tan stripes and a black sweater. My hands are gripping the rims of wheelchair.  

 1. What does resiliency mean to you?

Resiliency to me means chasing your goals and navigating barriers in a world that is not made for us as disabled people.

2. What does self-determination mean to you? 

Self-determination to me means that I am in the driver's seat of my goals and dreams.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can promote self-determination and resiliency by inviting people to the table, letting them lead discussions, sharing ideas, and providing information to make informed choices. We can serve as role models and mentors to help people gain the tools they need to increase their resiliency and self-determination. Most importantly, we can collectively engage in advocacy to reduce barriers to self-determination.

4What are you doing within your center/program to support resiliency and self determination? 

All that I do is linked to my vision of a just world … where disabled people have equal opportunity to participate fully in all aspects of life… where communities are barrier-free, and access is universal… where discrimination is unthinkable. I actively engage with the new LEND cohorts and share my experiences as a trainee/early-career professional. I lead discussions on disability culture and the lived experience of disability. I encourage people to share their ideas as we collaboratively identify solutions to increase self-determination within our fields.

Social Media

@Toni Saia

@thewheellifeofdrsaia

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Fiona Buchanan

Discipline: Genetic researchy
Northern California LEND at the MIND Institute

Fiona Buchanan grew up outside Chicago to Canadian-British parents. As an undergraduate at Michigan State University, Fiona studied the relationship between bacterial genetics and sporulation with Dr. Lee Kross and protein expression in insulin exocytosis with Dr. Hani Al-Hasadi, earning a B.S. in Genetics and Molecular Genomics and a B.A. in English with a Creative Writing Focus, both from the Honors College. Fiona currently researches epigenetic interventions for rare and severe X-linked neurological disorders with Dr. Kyle Fink at U.C. Davis. In her free time, Fiona likes to get outside, talk with friends, watch video essays, go hiking or dancing, and order Thai food.

Image Description: A white woman with wavy blonde hair is smiling at the camera. She is wearing a lab coat with markers in the breast pocket and a black face mask. Laboratory shelves are behind her.

  1. What does resiliency mean to you?

Resiliency is the emotional efficiency enabled by a shared mindset of compassion. Resilient individuals cultivate reasonable expectations for themselves and employ self-compassion to weather failures and setbacks, which makes it easier and faster to determine their next best course of action. Their capacity for emotional regulation is kept high because they are able to access lifestyles in which there is adequate time for rest and recreation. At the same time, individuals must empower resilience on a community scale. When a certain standard of living and proficiency in self-compassion are prerequisites for resilience, and resilience itself is directly related to progress, they must actively demonstrate both compassion for themselves and others, especially in regards to their basic needs.

2. What does self-determination mean to you? 

Self-determination is the freedom to make one's own choices, including with regard to one's identity within societal contexts, and to thereby influence the course of one's life. A person's self-determination is enabled not only by the absence of external pressures but also some anterior access to accurate information. For their choices to be powerful enough to influence the direction of their lives, individuals must be somewhat aware of the options available to them and the short- and long-term consequences associated with each. To be clear, a person can make choices without complete context, but in doing so they inherently acknowledge the weakened relationship between that choice and the outcome they associate with it. In self-determination, the choice and outcome are strongly linked ("I studied hard and passed the test") or completely united ("I am a Muslim").

3. How can we support people in our lives to help them be resilient and promote self-determination? 

To cultivate and promote resilience and self-determination in those around us, we can demonstrate compassion for ourselves and others; respect the healthy quality of life that enables resiliency; support the advancement of public education; advocate for free and open access to information; combat misinformation and manipulation; accept others' sovereignty over their bodies and identities; and empower those who cannot currently access self-determination.

4What are you doing within your center/program to support resiliency and self determination? 

As a volunteer and as an elected officer (Outreach and Community Coordinator, Recruitment Officer, and Student Executive Chair), I have collaborated with students, faculty, and staff in my graduate group to improve student engagement, financial transparency, accessibility and retention of institutional knowledge, and the importance of diversity, equity, and inclusion for current and future students. Recently, we succeeded in launching the first course in the program to interrogate genetics within a historical and sociopolitical context. As a trainee in the national network of IDDRCs, my goal is to work collaboratively with other trainees to identify methods by which we can better support all early-career researchers in our centers, and hopefully thereby increase resiliency and self-determination at scale. Off campus, I love leading interactive educational activities and demonstrations in the greater area, whether it's introducing neuroscience modules to an elementary school class, a crowd at a fair, or adult patrons at a museum. Ultimately, I do my best to embody resilience and a commitment to self-determination in my own life.

Social Media

https://www.instagram.com/fiona.k.b.buchanan/

linkedin.com/in/fiona-buchanan-008457164

 

 

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Safiya Neal

Discipline: Advocacy/Family member
Northern California LEND at the MIND Institute

Safiya currently lives in Sacramento CA. She is a native of Oakland CA. Safiya has a Diploma from MTI college for Business Administration and attended the Art Institute of Las Vegas. Currently, she is caring for a child who is on the spectrum and is a UC Davis Long-Term Lend Trainee representing the family member cohort. She loves art and lives in an artist community with the hopes of creating a program that marries art + autism.

Image Description: Safiya is Outdoors on a Sunny Day with lush trees in the background, wearing an orange blue and green head wrap army fatigue jacket. She has brown skin, has white nail polish and is smiling also has square shaped earrings on.

1. What does resiliency mean to you?

It means to move on quickly and not stay stuck in a problem and be solution oriented with a malleable attitude.

2. What does self-determination mean to you? 

To determine how and what you want to do in life and have confidence and have a sense of security in one's choices for self.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Give opportunities to gather with other people and have confidence that you have provided some adequate tools and step back and allow for self-expression and self-guided navigation.

4What are you doing within your center/program to support resiliency and self determination? 

Giving choices, allowing opportunities and taking a step back.

Social Media

 

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Viviana Barnwell

Discipline: Education & Family
University of California LEND

BA in linguistics, Cum Laudem Law Degree, LLM, with broad experience in education , both as a classroom teacher and as an instructional coach, teacher trainer, and PD and curriculum developer supporting English learners in the ELD area. Mom of a 9 y.o boy with multiple developmental disabilities. Advocate and educator of Spanish speaking families with individuals with disabilities. Member of the CA State Council of Developmental Disabilities, Legislative and Public Policy Committee. Director of Diversity and inclusion of an international Non-Profit based in Europe that empowers Latinx women around the world.

Image Description: Viviana is a hispanic woman in her 40's. She is white. She has long, reddish light brown hair. Her pronouns are she/hers/ella.

1. What does resiliency mean to you?

To me, resiliency is the ability to understand that life happens and to adapt to all changes and events. Also, to understand that there are highs and lows. And that even at the lowest of the lows, we can still be optimistic, persevering, and, most importantly, that we can learn lessons that will make us stronger and more empathetic to others who might face the same obstacles in the future. I see my son, a person with multiple disabilities, everyday being an example to me of what resiliency really means when he doesn't give up, keeps on trying, and applies what he learns from his challenges into future situations.

2. What does self-determination mean to you? 

Self-determination means being able to make decisions on our own. When thinking about people with disabilities, particularly in California, self-determination is the process where individuals, with certain supports are able to make their own goals and to decide not only what it's important for them, but, most importantly, what is important to them. Self-determination, regardless of the context, means freedom of choice, independence, and the ability to follow one's dreams.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

The best way to support people in our lives be resilient and to promote self-determination is by talking about every situation that happens, discussing what its value is, how the same situation can be perceived in a different way by someone in a different context (different culture, race, ability, etc.). Having conversations where people are able to express their point of view, certainly helps them have the sense of autonomy and independence embedded in self-determination and discussing the effects, the consequences, the lessons learned supports emotional resilience. Also, one thing that has particularly worked with my own son besides the previously mentioned is to have a sense that the journey is more important than the result. That way, when he struggles doing something, he perseveres and enjoy the tries and attempts as part of the process.

4What are you doing within your center/program to support resiliency and self determination? 

I have been co-leading the diversity efforts for the LEND program and not only during the discussions and meetings, but during the classes I had to coteach, I made sure to embed in them a component of DEI, so it could be discussed and any sort of lesson or new learning / awareness could be extracted from it. Having those discussions helped everyone develop that perspective that makes us understand that we all go through different journeys and have different life experiences and that adds value to what we do. In that way, when we work with the families we support we have a clearer understanding of how to better support their own paths towards independence and self-determination.

Social Media

https://www.linkedin.com/in/viviana-barnwell-a3b9b85/

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Yue Yu

Discipline: Clinical Psychology
Northern California LEND at the MIND Institute

Yue Yu completed her Ph.D. in Clinical Psychology from IUPUI and her predoctoral internship at the Medical University of South Carolina. She is a former LEND trainee and a current postdoctoral fellow at UC Davis MIND Institute.

Image Description: Yue is an Asian woman with black short hair parted to the right. She smiles at the camera and wears a dark blue collared shirt.

 1. What does resiliency mean to you?

Resiliency is resistant to setbacks. It is being able to or having the strength to bounce back when things are challenging.

2. What does self-determination mean to you? 

Self-determination means setting goals for oneself, getting involved in decision making, and working towards the goals. In addition to behaviors, self-determination is also the beliefs that one has the autonomy and ability to carry out the actions.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can help people in our lives to be resilient and promote self-determination by helping them understand their own strengths and their existing resources, social support system, and existing adaptive coping strategies. We can support them by providing them tools to overcome barriers and tools to develop skills to access resources, to problem solve, to advocate, and to ask for support when needed. We can also help promote self-determination by providing opportunities for the individuals to set goals, make decisions, practice problem solving, and ask for help.

4What are you doing within your center/program to support resiliency and self determination? 

As a clinician and researcher, I encourage families to understand their own strengths and involve families in goal setting and decision making process. For example, one of the research projects that I am actively involved in examines a program that provides education and support about disabilities, service navigation, and other relevant topics to caregivers of children with disabilities. Through this program, caregivers develop long term and short term goals (e.g., navigate the services system). They are involved in decision making and provided with tools, resources, and social support to achieve those goals.

Social Media

 

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Lindsey Rosenbloom

Discipline: Public Health
Mailman Center for Child Development

Lindsey is from Baltimore, Maryland. She recently received her Bachelor of Science in Public Health with a second major in psychology at the University of Miami. Next year, she will be joining the Teach for America corps to teach special education in Boston. Her other interests include any outdoor activities, like hiking or biking, as well as exploring new cities!

Image Description: Lindsey, a white woman with brown hair and blue eyes, smiles at the camera. She wears a coral dress while standing in front of a scenic lake with desert mountains behind her.

1. What does resiliency mean to you?

To me, resiliency means that you always try to bounce back from any challenge. That doesn't mean that the bounce-back has to be immediate; rather it is an individual's journey to overcome adversity as they see fit for themselves. I think that experiences breed resiliency; you don't necessarily know that you have the skill fine-tuned until you need to use it in real-time.

2. What does self-determination mean to you? 

To me, self-determination means taking action and creating goals to create a life that you deem meaningful. Self-determination is a motivator that inspires individuals to find their own paths consciously to manage their own life choices. Sometimes those decisions can be difficult, or against the trends of others; that is when self-determination becomes all the more challenging, but also all the more meaningful.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can support people in our lives to help them be resilient by standing by them through hardships to help them respond to adversity in a resilient way with strength and optimism. We can also demonstrate our own resiliency as role models, so others can pursue it themselves. We can help promote self-determination by providing them the opportunities to have choices - whether that be by helping them develop the skills or providing them different choices to choose their own paths and goals. Just having honest conversations about what an individual wants and needs helps promote resiliency and self-determination.

4What are you doing within your center/program to support resiliency and self determination? 

As a LEND trainee, I have developed an intervention for early childhood delays and disabilities to promote kindergarten readiness and prevent missed developmental milestones by creating an initiative that supports parent and provider education and resource distribution. These resources encourage self-determination for parents in their children's developmental journeys, as well as promote resiliency in the face of developmental delays or disabilities. Moreover, I have assisted with SELP, a high school program for emerging leaders, that focuses on honing leadership skills and disability education for inclusion and change. This program provides opportunities for high schoolers to engage in self-determination, as well as teaches them how to support resiliency in the community of disabilities. My other engagements have allowed me to help others find resiliency and reach their goals despite obstacles.

Social Media

www.linkedin.com/in/lindsey-rosenbloom

 

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Maria Lucia Barbeyto

Discipline: Family
Florida Center for Inclusive Communities

Born and raised in Spain, Maria Lucia has been living in Miami since 1999. She graduated with honors from Keiser University, obtaining a Bachelor's degree in Business Administration. She also obtained a Master’s degree in Project Management from Instituto Europeo de Postgrado (IEP) in Spain. For more than a decade, Lucía has held several leadership positions. Her most recent role has been as Director of a preschool for children 0 to 5 yrs. old. Lucía is the mother of a son diagnosed with severe autism and epilepsy. She became a Certified Advocate and is also a former Board Member of the Florida State Advisory Committee for the Education of Exceptional Students (SAC) at the Florida Department of Education (FDOE). For the last 15 years, she has been helping families find their way through the world of Autism by providing free consultations and resources. Lucia’s greater passions are music and genealogy.

Image Description: Maria Lucia is a white woman with long blond hair and green eyes. She smiles at the camera. She wears a green blouse that keeps one of her shoulders exposed. She also wears a long silver thin necklace.

 1. What does resiliency mean to you?

Resilence to me means never losing faith. Having a son with severe autism and epilepsy changed my life forever in innumerable ways but I always remain positive and courageous to keep fighting for a better future for him.

2. What does self-determination mean to you? 

Self-determination to me means to be keeping the focus on what I want. Working hard and being persistent. No matter how long or hard it is what you want When there is a will, there is a way.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

In my opinion, we can support people by providing them with our own testimony. Demonstrating to them that we are stronger than we think and that with faith and courage we can achieve anything in life. Also, be always willing to help others if they ask for help.

4What are you doing within your center/program to support resiliency and self determination? 

I do not have any center/program yet, but for the last 15 years, I have devoted my life to learning and being involved in all things related to people with special needs. I have been also helping other families to find their way through the world of autism by providing free consultation and resources.

Social Media

@luciabarbeyto

https://www.linkedin.com/in/m-luc%C3%ADa-barbeyto-153591167

 

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Alexis Johnson

Discipline: Speech Pathology
Center for Leadership in Disability at Georgia State University

Alexis is a recent graduate of the Communication Sciences and Disorders program at Georgia State University. She is passionate about working with pediatrics in the hospital setting. She hopes to use her academic and LEND training to support patients and their families whom she serves. During grad school, she worked as a research assistant for the Urban Child Study Center and assisted with Aphasia research at the Atlanta VA Medical Center. In her free time, she enjoys playing volleyball, singing and playing piano.

Image Description: Alexis, a black woman with medium-length, black and brown locs, is standing against a light grey background. She smiles at the camera while wearing a grey suit jacket and black shirt.

1. What does resiliency mean to you?

Resiliency is the ability to recuperate from life’s setbacks and persevere despite adversity. I believe a key part to resiliency is being able to acknowledge struggles that occur and adjust one’s plans to attain his or her goals. Acknowledgment of these struggles is an important step to being able to overcome difficulties when they arise.

2. What does self-determination mean to you? 

Self-determination is setting a goal and carrying out the tasks to achieve it regardless of challenging circumstances. It requires a tenacious attitude that is based on internal rather than external factors. Intrinsic motivation is the driving force that propels an individual to accomplish his or her goals.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Supporting others in resilience and self-determination requires listening to their personal challenges and providing the support that they need to achieve their goals and vision. In doing this, we allow individuals to have autonomy over their lives as we support them. We empower people by helping them create realistic objectives and develop plans to achieve their goals. In addition, we provide support by encouraging individuals to push through difficult circumstances.

4What are you doing within your center/program to support resiliency and self determination? 

In the GaLEND program, I worked with Adult Disability Medical Healthcare to facilitate their Get Fit & Be Healthy program. As part of this project, we helped teach individuals with disabilities about diet and exercising habits to help them live healthier lives. As a small group leader, I encouraged members of my group by meeting with them on a weekly basis to discuss progress. Although some had tried the program before, I supported resiliency and self-determination by helping them set manageable goals and incorporate healthy practices into their current lifestyles.

Social Media

https://www.linkedin.com/in/alexis-johnson-a79bb0210/

 

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Ellie Potts

Discipline: Counselor education and supervision
Institute on Human Development and Disability

Ellie is a PhD student at the University of Georgia where she studies Counselor Education and Supervision. She works on multiple projects within the Institute for Human Development and Disability, including the Children's Freedom Initiative and other research and advocacy projects. She is currently an Emerging Leaders intern for AUCD. Previously, Ellie graduated with an MS in Clinical Rehabilitation Counseling from Georgia State University, where she was a part of GaLEND (2019-2020).

Image Description: A young woman in a wheelchair wearing a striped shirt and smiling.

 1. What does resiliency mean to you?

Resiliency means being able to persevere through difficult times and to pivot when situations require it.

2. What does self-determination mean to you? 

Self-determination means being able to make your own choices in life. It's important to everyone that we choose to do the things that matter to us, not just what we are told by others.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

I think one way to support others is by sharing our experience and lessons with them. I would not be where I am today without the experience and wisdom of people who have taken the time to teach and encourage me.

4What are you doing within your center/program to support resiliency and self determination? 

I am a graduate research assistant for the Institute of Human Development and Disability, where I am currently working on the Children's Freedom Intiative, which is a project focused on keeping children and adults with developmental disabilities out of nursing homes and placing them in community living settings.

Social Media

 

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Patricia R. Lawrence

Discipline: Nursing
Center for Leadership in Disability at Georgia State University

Patricia lives on a small farm in Newnan Georgia with her husband and family. She recently obtained her PhD from Georgia State University. Up until then, she has been a practicing pediatric nurse practitioner in Boston and Atlanta, specializing in pediatric cardiology and pulmonary hypertension for infants and children. She loves to read, paint, bake, and ride her horse, Dragonheart.

Image Description: Patricia is a white, middle-aged woman with a big smile and brown, shoulder length hair. She is wearing a pink checkered shirt and a blue cardigan sweater.

 1. What does resiliency mean to you?

Resilient individuals find the good in situations, strive to learn from the lesson the situation, and will then use these situations to inform how they cope and create change in their lives.

2. What does self-determination mean to you? 

Self-determination allows us to choose what is right for us based on our personal goals, hopes, dreams and desires. When individuals have self-determination, they are more likely to succeed in their endeavors, and are more likely to be confident in their ability to achieve their goals.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can help people in our lives to be resilient by using humble inquiry and pointing out the hidden lessons that are sometimes overlooked when unfortunate events occur. How we choose to react and learn from all life experiences is what has the potential to build resiliency. We can promote self-determination by allowing those around us to make choices for themselves, even when we are fearful about the choices they make. Being ready to support the people in our lives, regardless of the decisions they make to attain their goals, is critical to promoting self-determination.

4What are you doing within your center/program to support resiliency and self determination? 

In the last few months, I gave a talk to the IDEAL students at Georgia State on "Health Literacy" using universal designs of learning concepts. After an interactive educational session, we took a field trip to a local pharmacy to operationalize what they had learned. I plan to continue with workshops like these for programs within the Center for Leadership in Disability at Georgia State. Promoting and educating students so that they can have self-determination is very important to me as an educator and researcher.

Social Media

Patricia-Lawrence-55389344

 

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Ramiro Gumucio

Discipline: Family advocacy
Illinois LEND

He always wanted to be a father . He was a Medical doctor specializing in Anesthesiology. He gave up clinical medicine to help his son on his journey . Being present was the best decision he ever made .

Image Description: Man with black hair , brown eyes smiling while wearing Grey jacket and blue dress shirt .

1. What does resiliency mean to you?

Perseverance throughout any challenge faced in a life span . Once you realize that a challenge is a gift that helps you grow as a human being ; then I believe resiliency is learned.

2. What does self-determination mean to you? 

It means not taking no for an answer . Becoming an advocate has brought great joy in my life because it will help bring change for future families. If every person was self determined to have a positive impact on a stranger ; then the world would be a better place .

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Acceptance and inclusion helps support everyone in our lives . Every human being has challenges he or she faces and no one should judge or make a false assumption on any individual . Every human being deserves to be accepted for his or her abilities .

4What are you doing within your center/program to support resiliency and self determination? 

I am opening a non profit autism affiliate in the chicagoland area .

Social Media

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Veronica Kang

Discipline: Special Education
Illinois LEND

Veronica (she/her) is originally from South Korea and is passionate about collaborating with diverse families who participate in early intervention or early childhood education in under-resourced communities. Veronica completed her LEND Pre-doctoral fellowship at the University of Illinois Chicago (UIC) in 2020-2021. Veronica obtained a PhD in special education at UIC and is transitioning to an assistant professor position in the Department of Counseling, Higher Education, and Special Education at the University of Maryland College Park. Veronica hopes to continue her partnership with and advocacy for culturally/linguistically diverse, immigrant, refugee, and other underrepresented families in Maryland and nearby regions. Veronica enjoys running, practicing yoga, drinking tea, and walking at the park with her dogs.

Image Description: Veronica, an Asian woman with long dark brown hair, is smiling and looking at the camera in front of a silver/gray colored backdrop. She is wearing a black long-sleeve shirt and a pair of very small gold-colored hoop earrings.

 1. What does resiliency mean to you?

Resiliency means to trust and have hope in our own as well as our surrounding community's strength to bring positive influences including joy, empathy, and kindness to one another.

2. What does self-determination mean to you? 

Self-determination means having respect for the uniqueness and diversity of our own self as well as others so that together, we feel confident and proud and have the ownership to express and live our life based on our values, beliefs, hopes, and dreams to one another.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can support people in our lives by trusting and respecting them and starting off with the belief that we are all in this together, and that each individual and their voices and lived experiences are crucial in transforming and improving the system and the lives of the future generation.

4What are you doing within your center/program to support resiliency and self determination? 

After completing the LEND fellowship 2020-2021, I completed my dissertation by collaborating with young autistic individuals and their siblings so that they could engage in a meaningful and enjoyable social interaction (i.e., play) in their primary language in their natural setting with materials they enjoy playing with.

Social Media

https://www.instagram.com/koreanautismus/

https://twitter.com/VeronicaYKang

https://www.linkedin.com/in/veronica-kang-0b5b30186/

 

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Cindy Hill

Discipline: Nursing
Illinois LEND

Dr. Cindy Hill lives in Brownsburg Indiana and is a clinical assistant professor at IU School of Nursing. She is a pediatric nurse that has worked in various community settings including school health. She earned her DNP from the University of Alabama and is certified in pediatrics and nursing education. She loves spending time with family, hiking and traveling.

Image Description: Maria A. Del Rosario, a white woman with long blonde hair and green eyes is wearing a floral sleeveless top and smiling at the camera.

 1. What does resiliency mean to you?

Resiliency is to keep going even when the path I take is hard such as nursing in the Covid crisis. To be resilient is to keep doing the work you have done with the same strong ethic even when faced with adversity.

2. What does self-determination mean to you? 

Self-determination is to purposely plan how I want my path or goals. It is a focused, thoughtful process of planning my future.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Support is needed as not everyone has the same background or foundation to promote these concepts. Coming alongside and supporting others through education, motivation and awareness is key to helping others.

4What are you doing within your center/program to support resiliency and self determination? 

I currently am working on a team that is promoting and writing curriculum that focuses on nurses being resilient in advocation for those with disabiliites. I am also co-authoring a call to action manuscript that promotes resiliency in nursing and determination for nursing goals. I also promote the LEND fellowship to nurses I know and work alongside.

Social Media

www.linkedin.com/in/lucinda-hill-5b70ab117

 

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Sydney Walls

Discipline: Public Health
Center for Child Health and Development (Kansas LEND)

Sydney Walls is not only a Master of Public health student at the University of Kansas Medical Center, she is the older sibling to her autistic brother, Zach. Sydney has been a part of the Kansas LEND program for 2 years and she has dedicated most of that time to expanding public health knowledge on intellectual and developmental disabilities, as many public health practitioners do not know about IDD. Her current interests are in IDD sexual health and the expansion of developmental medicine in medical education. If you were to know her outside of the office and classroom, you would learn that Sydney does her Animal Crossing chores everyday, constantly watches youtube essays on movies (both good and bad), and calls her dogs her children.

Image Description: Sydney, a smiling mixed-race Asian & White woman with medium-length dark brown hair, is standing outside in front of a wall covered with green ivy. She is wearing a bright green dress with a red stole around her neck.

 1. What does resiliency mean to you?

I think many people justify their unethical actions against disenfranchised people by saying that 'they're resilient, and therefore they'll get over it'. For example, whenever a child is mistreated or has experienced trauma, many will sweep the consequences of this under the rug by saying that children are resilient and will continue to prosper despite their trauma. Resilience, to me, is a trait that all humans have regardless of age, ability, race, creed etc. It is our inherent ability to thrive in adversity; however, being resilient does not make anyone undeserving or not needing of care, empathy, and patience.

2. What does self-determination mean to you? 

Self-determination is our ability to make goals and pursue them. We all need supports and guidance, and self-determination is not only establishing our own agency and what we want in life, but also recognizing where we need support to achieve our goals.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

As a sibling to a disabled person with high support needs, my personal take is to balance expectations and motivation. With my brother, it is easy to assume that his 'weaknesses' will prevent him from doing things he wants to do. But, with having high expectations for my brother to be able to use and grow his strengths and being able to motivate him to achieve his goals urges him to be more resilient and self-determined.

4What are you doing within your center/program to support resiliency and self determination? 

Right now, my public health and LEND research/work is focused on provider knowledge on IDD and sexual healthcare. I am currently working with the University of Kansas' Family Medicine program to organize a panel of IDD self-advocates, family members, and healthcare providers to share their experiences and answer the questions of family medicine residents. This will not only give residents an opportunity to have community insight to healthcare, but also give IDD community members an opportunity to leverage their insights and adverse healthcare experience to improve medical education on IDD.

Social Media

 

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Konstance Causey

Discipline: Family
Louisiana LEND

Konstance Causey is a native of Monroe, LA and mom of two beautiful girls, Kaidence (6yo, a former micropreemie born at 24 weeks weighing 1 lb 3oz) and Kailee Grace (2yo). She is a graduate of the University of North Carolina at Chapel Hill with a B.A. in African American Studies, and of the University of Louisiana at Monroe with a Masters in Public Health Administration. Ms. Causey works as Deputy Director of Families Helping Families of Northeast Louisiana, a family-directed resource center supporting families in the disability community. She also serves as the Regional Advocacy Leader over twelve parishes in Northeast LA for the Louisiana Council's Advocacy Network, a statewide grassroots advocacy group of the Louisiana Developmental Disabilities Council. Ms. Causey serves on several advocacy committees, including: as Vice-Chair of the State Advisory Committee for the Office for Citizens with Developmental Disabilities, the Regional Advisory Committee, and as parent representative for the Geaux Far Louisiana early childhood taskforce. In her sparetime, she enjoys spending time with her husband, Jasma, and two daughters on vacation.

Image Description: A black woman with black hair in a wavy bob is smiling. She is wearing a royal blue dress with a rainbow colored brooch.

 1. What does resiliency mean to you?

From an early age I learned that life is not always fair, but that life can be the best of what I make of it. I find resiliency to be the ability to adjust, adapt, and recover from whatever setbacks, curveballs, or disasters life brings one's way. It's the inner ability to persevere through every valley until you reach the mountaintop; and then to do it all over again.

2. What does self-determination mean to you? 

Self-determination is being able to be in control of my own destiny in fulfillment of the right to life, liberty, and pursuit of happiness. In this way, I am able to make choices and to learn and grow through life facing the outcomes of the decisions that I ihave made.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Supporting self-determination in others first involves recognizing that person for their unique strengths and abilities, and valuing what they bring to community. We then encourage them to be self-aware, and free to express their creativity and personality witout reservation and without presumed expectations. We support and strengthen their ability to set personal goals, to problem solve, and to speak up and out for themselves.

4What are you doing within your center/program to support resiliency and self determination? 

Professtional, I work with an agency that in strengthening the capacity of parents, family members, self-advocates, professionals, and others in our community to be resilient and promote self-determination rights for all through workshops & trainings, peer support groups, and grassroots advocacy efforts. As a member of the family discipline with LEND, I have been able to offer my own personal insights and experiences about what self-determination means to my family members, and have hopefully built their capacity to support their clients as they move forward in their careers.

Social Media 

www.linkedin.com/in/konstance-causey-mpa-1193123b

 

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Meredith Braza

Discipline: Audiology
Institute for Community Inclusion/ Boston Children's Hospital

Raised in New Berlin, Wisconsin, Meredith is a Doctor of Audiology candidate at The University of North Carolina at Chapel Hill. She currently serves as a Pediatric Audiology Extern at Boston Children’s Hospital where she is completing a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Fellowship. Meredith also holds the AUCD LEND Audiology Technical Assistance and Engagement Intern position through which she has created webinars, professional development opportunities, and resources for LEND audiology trainees across the country. Following her graduation in May 2022, Meredith will work as an Audiologist at Mass Eye and Ear, providing diagnostic audiology services to patients across the lifespan with complex medical conditions. In her free time, Meredith enjoys reading, visiting America’s National Parks, and playing with her cat Eve.

Image Description:Meredith, a white woman with shoulder-length blonde hair and blue eyes, stands in front of a white brick wall. She wears a royal blue V-neck shirt and is smiling.

 

 1. What does resiliency mean to you?

Resiliency means not only facing and recovering from challenges, but also improving as a result of these challenges. It means adapting to change, knowing where to find appropriate resources when needed, and tapping into a growth mindset in the face of obstacles.

2. What does self-determination mean to you? 

Self-determination means setting goals, making choices, and advocating on behalf of one’s own destiny.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Resiliency and self-determination begin with self-care and self-awareness, skills which allow one to replenish energy, restore balance, find joy, and regulate emotions. Checking in on one’s own self is critical in understanding how to overcome obstacles.

4What are you doing within your center/program to support resiliency and self determination? 

In each clinical interaction at Boston Children’s Hospital, I make it a priority to understand each patient and family’s values and priorities. This trusted partnership allows for not only open communication from all parties, but also the creation of a plan based on the patient and family’s self-identified strengths and needs. It is my goal that each patient have stake in his/her/their own healthcare.

Social Media 

linkedin.com/in/meredith-braza

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Shilo Goodhue

Discipline: Early Intervention & Special Education
Center for Community Inclusion

Shilo Goodhue is an early intervention program supervisor and specializes in working with toddlers with autism. She has over 20 years experience in early childhood settings and is passionate about diversity, equity and inclusion. A lifelong learner, she has earned a Master's degree in early intervention and special education, a graduate certificate in autism spectrum disorders and is a recent LEND fellowship graduate.

Image Description: Photo of Shilo, a white woman with long dark and gray hair, wearing a blue patterned top.

 1. What does resiliency mean to you?

Resiliency, to me, is moving onward and upward despite adverse experiences in life. A resilient person uses challenges as opportunities to learn and grow. A resilient person may get temporarily slowed down when faced with a challenge, but does not get stuck there.

2. What does self-determination mean to you? 

A way to help others be resilient and promote self-determination is to listen to their story, understand and empathize with them while asking reflective questions to turn challenges into learning opportunities. We can help people turn their frustration, anger, hurt and feelings of defeat into a plan of action to educate and advocate for change.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

The lived experiences of individuals with developmental disabilities and their families is heard and valued. Families are connected with supports and services in the area and their input is central to goal development.

4What are you doing within your center/program to support resiliency and self determination? 

In each clinical interaction at Boston Children’s Hospital, I make it a priority to understand each patient and family’s values and priorities. This trusted partnership allows for not only open communication from all parties, but also the creation of a plan based on the patient and family’s self-identified strengths and needs. It is my goal that each patient have stake in his/her/their own healthcare.

Social Media 

 

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Angela Khater

Discipline: Family/BCBA
Michigan LEND

Angela Khater was born and raised in Dearborn Michigan. Angela has a 10 year old son with autism. She is currently working as a Board Certified Behavior Analyst (BCBA). She provides behavior analytic services and advocacy support to families with children, adolescents, and adults with developmental disabilities. Angela graduated from Western Michigan University with her masters in behavior analysis.

Image Description: Angela is an olive skin toned woman with dark brown long hair and dark brown eyes. She is wearing a navy suit jacket with a white shirt. Her arms are crossed in the portrait. Angela is smiling slightly.

1. What does resiliency mean to you?

Being able to face a problem or challenge and coming back stronger. It means never giving up.

2. What does self-determination mean to you? 

Making your own decisions without interference from others.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

By supporting them with positive feedback and constantly encouraging them to do what they want without worrying about what others think.

4What are you doing within your center/program to support resiliency and self determination? 

Promoting independence, constantly encouraging individuals to do whatever their heart desires. Pushing individuals to reach their goals.

Social Media

 Angela Khater

angela_khater

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Aimée Folker

Discipline: Self-advocacy
Munroe-Meyer Institute for Genetics & Rehabilitation at the University of Nebraska Medical Center (Nebraska UCEDD)

Aimée Folker achieved her BA in English and Creative Writing with a research speciality in Trauma Theory from Creighton University. She is pursuing her Masters in Organizational Leadership with an emphasis in Health and Wellness as well as completing a second year as a LEND trainee at Munroe-Meyer Institute of Genetics & Rehabilitation in Omaha Nebraska. She adores kitties, drinking tea, dancing in rainstorms in her mind and writes poetry to keep the shifting swirls of the world manageable. She is focused on the creations of narrative in how we define ourselves and create our existence and place in the world, particularly in the area of trauma. She uses storytelling, journaling, and other expressions of creativity, to help build self-awareness, resiliency, and healing.

Image Description: Image of a white woman with raspberry hair up in a bun. She is wearing a green sweater with a white Peter-Pan collar and has dark pink glasses on.

 1. What does resiliency mean to you?

Though the word resilience comes from resile, which means to spring back or rebound, resiliency as a concept is not just about recovering from a setback, or maintaining against adversity. It is indeed, a knowledge of one's self and what is required to withstand the storms of struggle. It is an understanding of the powerful light inside that gives birth to dreams and ambitions. For me it is the set of skills I have honed after years of wondering in the wilderness combined with the love and compassion I have learned to bless myself with.

2. What does self-determination mean to you? 

If resiliency be my light in the darkening ether, then self-determination is my fire, my naphtha, that sparking electricity within that illuminates my path. It is my breath warm from my body speaking of my own existence, my yens and desires, injustice and hurt. It is my assertion of my own mind and body for the universe to delight in.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

It is crucial that one’ sense of self be acknowledged first always. This demands cultural competency as well as humility. It means that we are supportive, not determinative in our helping, be it setting goals and benchmarks. Understanding the uniqueness of each person we encounter, prepares us to see beyond a condition or symptom and remember the entirety of the patient. Person Centered Planning, Whole Health modalities and other programs directed towards re-framing our outdated medical models and systems of care, are the key to promoting autonomy, competence and relatedness.

4What are you doing within your center/program to support resiliency and self determination? 

I have begun working on a handbook directed specifically for the self advocate at my LEND program focusing on Improving Metacognitive Awareness and Emotional Self-Regulation through reflection and social role valorization in order to build self-reliance and confidence in the hopes of achieving a more equitable program. In my second year, I plan to focus on a Disability Visibility project but looking at collecting submissions and helping those with lived experience look at how they can empower themselves through the stories they tell themselves and the world.

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Hailey Humphrey

Discipline: Public Health
Munroe-Meyer Institute for Genetics & Rehabilitation at the University of Nebraska Medical Center (Nebraska UCEDD)

Hailey is a Public Health LEND trainee born and raised in Omaha, NE. She received her Bachelor of Science degree from Creighton University where she graduated cum laude, will be granted her Master of Public Health degree from the University of Nebraska Medical Center in August 2022, is on track to get a certificate in Maternal and Child Health from UNMC in December 2022, and then hopes to attend medical school. She has been working and volunteering at the Munroe-Meyer Institute since 2018 where she discovered and cultivated a passion for collaborating with communities of people with disabilities. She feels so grateful to the Munroe-Meyer Institute and LEND program for supporting and believing in her from day 1 and the role they have played in her growth since 2018. Outside of school and work, Hailey enjoys spending time with her partner, sisters, niece, nephew, and friends and taking her 2-year-old German Shepherd to get pup cups from coffee chains.

Image Description: Hailey, a young Native American woman with long, straight, brown hair, stands in front of a plain white background, smiling at the camera. She wears large square-shaped black glasses and a black t-shirt. She has a black nose ring and a flower tattoo on her arm. Her arms are crossed over her stomach.

1. What does resiliency mean to you?

Resiliency has defined most of my life. I was raised by a single mom with a substance use disorder and experienced abuse and neglect up until I was 19 and started living on my own, but wasn't aware that the things I went through weren't okay until I was 23. This left me with a lot of trauma and mental health issues that made many aspects of my life really difficult. To me, resilience is the fact that I have not only done the extremely hard work of overcoming the consequences of things that were never my fault, but also that I have managed to use the things I've been through to fuel my drive to accomplish my goals. Resilience is about learning from your experiences, giving yourself room to heal, and continuing to work towards your goals.

2. What does self-determination mean to you? 

Self-determination is an ever-expanding process that you have to consistently put effort into throughout your life. It is taking the time to self-reflect and determine your values and goals and make active decisions, both hard and easy, to grow and progress. It is also about allowing yourself room to make mistakes, practice grace for yourself, and continue on your path even when it's difficult. It is about doing these things and finding that spark inside yourself that centers and grounds you, reminds you of the "why" behind your journey, and gives you the courage to never give up on your dreams and goals.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

I believe being a constant friend and resource is one of the most powerful things we can do to help people be resilient and promote self-determination. Having a close connection with someone can make all the difference in the world when you feel down, bad about yourself, or incapable. We can support people by being there to listen when they need it, and to step in, in whatever capacity they may be comfortable with, whether that means just listening, helping problem solve, connecting them to mental health or other resources, etc. Being open about our love and support of the people in our lives gives them the opportunity to see themselves in that light and start to gain the confidence and skills of resiliency and self-determination.

4What are you doing within your center/program to support resiliency and self determination? 

There are 2 main things I do in my program to support resiliency and self-determination. The first is active listening. I practice empathetic listening to other's stories and experiences by trying to form connections with them, thanking them for their willingness to share, and reassuring them that they are safe, I will never judge, and I will always support them. The second thing I do is share my own stories of resiliency and self-determination. Having the strength to tell stories that may be hard to tell opens up room for discussion, growth, empathy, and understanding, and normalizes the telling of these stories, allowing the strength and self-determination to spread.

Social Media

https://www.facebook.com/hailey.humphrey3

https://www.linkedin.com/in/hailey-humphrey-59a874237

 

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Melanie Davis

Discipline: Self-advocacy
Munroe-Meyer Institute for Genetics & Rehabilitation at the University of Nebraska Medical Center (Nebraska UCEDD)

Melanie is a senior in the Political Science program, and placed on the Dean's list for her academic performance. She has been a UCEDD Trainee for 2 years. Outside of her time at the UCEDD she spends time with friends and family at various events and activities.

Image Description: White woman with brown/blonde hair wearing glasses, and in a gray sweater

 1. What does resiliency mean to you?

Resiliency for me is about how an individual is able to recover from difficult situations. For me that does not always mean that you have to move on from a difficult situation, but more what are you able to do to make it better for those that follow in your footsteps. It is in our best interest to use our negative situations to make a better life for others.

2. What does self-determination mean to you? 

Self-determination for me is the assertion that I can make my own choices, even those that others may not agree with. It is the ability to take on my own dignity of risk.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Resiliency is best supported by ensuring that people always have someone positive in their life to rely on when things are not going well. It is important that individual also has positive activities that they can go to for stress relief, this puts your mind at ease to rebuild from negative situations. Self-determination is really about allowing individuals the same choices that you have been afforded throughout your life.

4What are you doing within your center/program to support resiliency and self determination? 

As a self-advocate I believe that my best way to support resiliency and self-determination is to demonstrate in my actions. I have been very intentional in my activities and roles in particular groups in order to best demonstrate my abilities in resiliency as well as self-determination.

Social Media

 

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Colby Dudal

Discipline: Self-Advocate
Institute on Disability UCEDD

Colby is from Atkinson, NH. He is a 2022 graduate from the New Hampshire Leadership Series and is the Digital Marketing Assistant at Community Crossroads (an area agency in NH). He graduated from Keene State College in 2019. Colby enjoys writing, being social, and going to concerts.

Image Description: I am wearing a light blue shirt, I am wearing sunglasses, and I am standing outside.

1. What does resiliency mean to you?

To me - resiliency means getting through difficult times with positivity, advocacy, and determination. During the NH Leadership Series, my Action Group focused on advocating for preventative oral healthcare for people who are on Medicaid. As someone who has had multiple surgeries on my mouth - I know how important oral healthcare is to everyone in America! Resiliency is advocating for this and other important bills.

2. What does self-determination mean to you? 

To me, self-determination is focusing on the tasks at hand and understanding what the end goal is. I have been determined throughout my life to advocate for myself and others with disabilities. I am determined to make change through my writing, social media posts, and public speaking.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

I think the best way to support people in our lives to help them be resilient and promote self-determination is to focus on strengths and what someone is good at. By doing so - we can all become advocates and use our strengths to make change.

4What are you doing within your center/program to support resiliency and self determination? 

One way I promoted resiliency and self-determination in my Action Group is by focusing on the strengths of each individual. By doing this - each member felt included and determined to make change. I think it is important to give people the information so they can make change and that is what I did throughout Leadership.

Social Media

Facebook.com/cdudal

Instagram.com/colbydudal

LinkedIn.com/in/colby-dudal

 

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Kimberly Fortin

Discipline: Behavioral Health
Institute on Disability UCEDD

Kimberly Fortin currently resides in Weare, New Hampshire. She is enrolled in the bachelor’s program at Granite State College for Psychology specializing in Addiction Studies. She has also earned her license as a Certified Recovery Support Worker and is continuing to become a Licensed Alcohol and Drug Counselor. During Kim’s free time she is a very avid painter and likes to spend time with her family.

Image Description: Kim is wearing a gray t-shirt with a necklace. She has brown hair and brown eyes.

 

1. What does resiliency mean to you?

Resiliency to me means no matter what happens you never give up. You grow from the troubles you experience in live to recover a stronger better person than before.

2. What does self-determination mean to you?

When I think about self-determination, I think about making decisions for myself that will benefit me directly without others interfering in the process. I am making the decision to become a Licensed Alcohol and Drug Counselor because I want to help others that have a story like mine.

3. How can we support people in our lives to help them be resilient and promote self-determination?

I can support others in my live by helping them overcome troubles or obstacles to promote resiliency. I can help by not interfering and letting the people in my life make their own decisions for themselves to benefit themselves.

4. What are you doing within your center/program to support resiliency and self-determination?

I try to lead by example showing that I can make it through tough times by having the strength to be resilient and learning to trust myself to make my own decisions for the benefit of the center/program

Social Media

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Audrey Gerkin

Discipline: Special Education/Family
New Hampshire-Maine LEND

Audrey Gerkin holds a Master’s in Educational Disabilities. She worked as a High School Special Education Teacher, in a variety of settings and as a Legislative Liaison advocating for families within the developmental disability community. She currently works as a Council Administrator for the NH Council for Youths with Chronic Conditions, a parent driven council that works to inform and educate policy makers and stakeholders. She has lived all over the United States with most of her time spent in the Washington DC area and New England. New Hampshire is her favorite spot where she lives with her husband, and three daughters; the oldest of which has Cornelia de Lange Syndrome.

Image Description: Audrey is a white woman, smiling, with light brown and gray wavy hair. She is wearing a flower top and glasses.

1. What does resiliency mean to you?

Resiliency means keeping my family strong and together despite the adversity we've been through. By building strong families, we build strong local communities, which builds strong towns, cities and states. Home and Community Based Service policies for people with disabilities allows for this resiliency to spread and support all families and therefore communities as a whole.

2. What does self-determination mean to you? 

You never know where life will take you. Self-determination means to me, setting your values, figuring out what is important to you, and working hard to strengthen your skillset. By being prepared when the windows of opportunity open, you are ready to take the lead. The Kentucky Derby race won by Rich Strike, was a perfect metaphor for this definition.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

I think of the question, what is upstream causing our culture to struggle? In this day and age, I land on pushing for more kindness and empathy. I learned last week, a NH bill was passed mandating kindness decades ago in relation to mental health services. I think by implementing kindness and empathy as leaders and role models it will create a ripple effect to support people to be more resilient and promote self-determinization.

4What are you doing within your center/program to support resiliency and self determination? 

This past year in LEND I stayed open minded to the information and support provided to me by the faculty and fellow students. I took what was valuable to me and used it to shape how I could become the best leader and role model. I think by becoming the best person I can be, in turn allows me to support others. I am able to provide myself as an example for others to find their best path forward in times of adversity, all while pushing forward with grace through tough times myself this past year.

Social Media 

@AudGerkin

 

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Laura Sarchet

Discipline: Education
Strong Center for Developmental Disabilities, University of Rochester

Laura N. Sarchet is a Ph.D. student at the University of Rochester Warner School and an adjunct faculty at Niagara University. She taught in middle school special education settings for 6 years prior to beginning her Ph.D. Laura is an autistic self-advocate, so she has the experience as a person with a disability as both a student and an educator. She is a consultant in working with students on the autism spectrum and adapting Self-Advocacy teaching materials for P-12 and the college level. Laura does speaking engagements, trainings, and workshops related to autism, disability, and inclusive supports. Her research interests include teacher education and teacher preparation programs, self-advocacy, developmental disabilities and autism, and neurodiversity of teachers.

Image Description: Image of Laura Sarchet, white young woman with long dark hair, dark eyes, glasses, and black blouse.

 1. What does resiliency mean to you?

Resiliency means being vulnerable in the face of difficulties. We must realize our weakness in order to be strong. We learn from accepting the support of others and persevering while embracing life in all its twists and turns.

2. What does self-determination mean to you? 

Self-determination means being a self-advocate. We make our own decisions. We have awareness of and communicate our own strengths, needs, interests, and preferences in order to forge our own path with what we value most.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

LISTEN! Center the voices of those with disabilities and respect their choices, even if you do not share the same dreams as them.

4What are you doing within your center/program to support resiliency and self determination? 

As an autistic self-advocate, I have spoken on panels about autism and inclusion, as well as led a session on autism spectrum disorders. SAA (Self-Advocacy in Action) is a curriculum I developed to help teach self-determination skills to individuals with disabilities.

Social Media 

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Discipline: Psychology
Boling Center on Developmental Disabilities at UTHSC

Ameena was born and raised in Las Vegas, Nevada, but has spent time training in Cincinnati, Ohio, and Memphis, Tennessee! She will soon be wrapping up her doctorate in clinical psychology at Xavier University, and starting a postdoctoral fellowship position at Johns Hopkins. She is very passionate about working with children and families impacted by developmental disabilities and medical conditions. Outside of her professional life, she loves spending time with her cat, going for walks, reading, and watching TV!

Image Description:Ameena, a biracial woman with long brown hair, is smiling at the camera. She wears a white blouse with a black blazer.

 

1. What does resiliency mean to you?

Resiliency is supported by both internal and external factors; it is the internal ability to adapt and respond to difficult life circumstances. However, resilience is also fostered with external sources, including supportive environments (family, friends, society at large).

2. What does self-determination mean to you? 

Self-determination is the ability to choose and set goals (e.g., have a voice in one's own life), make decisions, and advocate for themselves if/when needed.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can educate ourselves on the issues people are facing (e.g., judgment, inequity, racism, ableism); we can identify and risk and protective factors for resiliency; we can advocate on behalf of, but also with people; we can make sure everyone has a voice and a "seat at the table" when making decisions.

4What are you doing within your center/program to support resiliency and self determination? 

A big piece for me relates to the phrase, "nothing about us without us." When making decisions, whether on a broader scale within my program or even to the smallest decisions with clients and their care, I try and make sure to include all who will be impacted by the decision that is being made. I think this allows people to have a voice, and feel supported and truly cared about, which fosters both resiliency and self-determination.

Social Media

https://www.linkedin.com/in/ameena-ahmed-psychology/

@drameenaahmed

 

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Ashlee Yates Flanagan

Discipline: Psychology
Boling Center on Developmental Disabilities at UTHSC

Mrs. Yates Flanagan is a Memphis native and a doctoral candidate in school psychology at Tulane University. She received her masters in Counseling from New York University (NYU) and a second masters in school psychology from Tulane University. In New York, she practiced as a clinical psychotherapist treating predominantly women and young mothers dealing with stress, anxiety, and depression. As a doctoral candidate, she has spent the last 6 years: (1) working in New Orleans charter schools evaluating children and adolescents with academic and behavior challenges, and (2) providing therapy and psychodiagnostic evaluations to families in need in outpatient settings in New Orleans and Memphis. Clinically, she is currently completing her predoctoral internship with the University of Tennessee. Her areas of expertise include the assessment of children with developmental and neurodevelopmental disorders, offering empowerment workshops and psycho-education for parents and caregivers, providing clinical services for families with children with autism, administering culturally sensitive comprehensive assessment, and conducting qualitative research at the intersection racial identity development, socialization, and development. She enjoys cooking, writing children's books, and spending time with her family and friends.

Image Description: A picture of Ashlee outside smiling at the camera, on a sunny day.

 1. What does resiliency mean to you?

I view it as a factor associated with overcoming obstacles and closely aligned with strength. To me, resilience is an intangible trait, that in some ways seems mystical. I believe patients all hold strengths, and their use of their strengths during challenges (or a less than ideal situation) shows resiliency.

2. What does self-determination mean to you? 

Intrinsically harnessing motivation toward a goal.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

From a psychological perspective, I believe resiliency can be promoted through praising resilient efforts (no matter how small), in order to increase resilient behaviors. In other word acknowledging others’ strengths and efforts, and showing them that they are seen and appreciated for what they do. Additionally, I believe self-determination can be promoted by first understanding one's motivation and goal, followed by serving as an accountability partner in the goal.

4What are you doing within your center/program to support resiliency and self determination? 

In my appointments (psychological evaluations) with patients I aim to share with families the strengths I observe while working with them. For example, highlighting parents making the effort to show up to their appointment or praising them for advocating for their child's needs or validating their efforts with working in flawed medical systems. I hope by praising their strengths and showing them their efforts are not unnoticed, they are encouraged to continue their resilient path. I also serve as a resource, that is available for questions and to help with making connections, even after our appointment.

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Marissa Gray

Discipline: Nursing
Boling Center on Developmental Disabilities at UTHSC

Marissa is from Memphis, TN where she completed the DNP PMHNP program at UTHSC. Marissa previously served in the Family Resilience program at LeBonheur Children's Hospital and hopes to work in the community as a pediatric psychiatric mental health nurse practitioner.

Image Description:I am a woman with dark brown hair, brown eyes, and a big smile wearing a blue shirt.

 1. What does resiliency mean to you?

Resiliency is a life-long skill that is continually developed and evolving. Ideally, we teach our children resiliency methods early in life, however, adults require positive adaptive tools as well. Resiliency is not an ability to "bounce back" or "be tough", but rather a practiced listening and awareness of how to care for the self.

2. What does self-determination mean to you? 

Self-determination requires knowing oneself and listening to the emotional and physiological cues of the body to determine how to create a meaningful and purpose-filled path in life. Self-determination requires attunement with one's inner joy.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

In order to support people in our lives, we must first listen. Listening requires we protect spaces for people to have full representation of their lived experiences. Then, once we have helped shoulder their platform to use their voices, can we help others with resilience and self-determination.

4What are you doing within your center/program to support resiliency and self determination? 

I am learning more about story telling. I am integrating story telling into my professional and academic circles and practices as a way to engage with others and the community.

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Taylor Napier

Discipline: Clinical psychology
Boling Center on Developmental Disabilities at UTHSC

Taylor Napier is from Carlisle, PA and received her masters of general psychology degree from the University of Memphis in 2019. She is currently a doctoral candidate in the clinical psychology program at the University of Memphis and is interested in studying early childhood interventions aimed to mitigate the effects of intergenerational adversity. In her free time, Taylor enjoys walking at local parks, spending time with her siblings, and exploring Memphis with her partner.

Image Description: Taylor has curly brown hair and is wearing a white top, black pants, and a grey sweater. She is posed underneath a tree in front of a brick building.

 

1. What does resiliency mean to you?

Resiliency is one's ability to access and utilize resources within their environment to process, grow, and heal following adversity.

2. What does self-determination mean to you? 

Self-determination is one's ability to identify, work for, and achieve their goals. It also suggests that individuals hold themselves accountable for their progress and keep going even when things are challenging.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can increase access to supportive resources (e.g., therapy, affordable housing), provide opportunities for individuals so learn new skills, promote exposure to diverse career paths, and advocate at a community, state, and national level for policy change.

4What are you doing within your center/program to support resiliency and self determination? 

Personally, I have taken opportunities to foster relationships outside of the psychology discipline, and held interdisciplinary meeting to encourage communication across areas of expertise. Within my own area of work, I have prioritized learning available resources with in the community to assist families in accessing services, attended various community events with individuals with neurodevelopmental disabilities, and attended several conferences aimed at unifying and growing the field. Finally, I believe that centering strengths within underrepresented groups is essential in promoting health and wellbeing for all. Thus, my facilitated discussion focused on resiliency in individuals with co-occurring trauma and developmental disabilities to help shift the narrative from a deficits framework to manifest resilience in this population.

Social Media

tay_rae_napes

 

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Dana Sayre

Discipline: Self-Advocacy
Utah Regional LEND

Dana N Sayre is an artist, activist, and community organizer in Austin, TX. They have a Master's degree in Performance Studies and are a Registered Drama Therapist. Dana currently operates a small private practice, as well as contracting with local organizations to provide programming to support the LGBTQIA+ and Disability communities. In their spare time, Dana enjoys gardening, cooking and baking, role playing games, arts and crafts, and spending time with their cat Angel.

Image Description: Dana is looking at the camera, smiling with lips closed. They have salt and pepper hair that is short on the sides with a poof at the top of their head. They are wearing a beige shirt and a black vest. They are wearing pink eyeshadow, light blush, and a neutral pink lip color.

 1. What does resiliency mean to you?

Resiliency means having the courage, determination, and perseverance to keep moving forward, despite obstacles in one's path. From a trauma-informed lens, resiliency is also the ability to consciously regulate the nervous system in times of stress.

2. What does self-determination mean to you? 

Self-determination is one's ability to identify, work for, and achieve their goals. It also suggests that individuals hold themselves accountable for their progress and keep going even when things are challenging.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can increase access to supportive resources (e.g., therapy, affordable housing), provide opportunities for individuals so learn new skills, promote exposure to diverse career paths, and advocate at a community, state, and national level for policy change.

4What are you doing within your center/program to support resiliency and self determination? 

Personally, I have taken opportunities to foster relationships outside of the psychology discipline, and held interdisciplinary meeting to encourage communication across areas of expertise. Within my own area of work, I have prioritized learning available resources with in the community to assist families in accessing services, attended various community events with individuals with neurodevelopmental disabilities, and attended several conferences aimed at unifying and growing the field. Finally, I believe that centering strengths within underrepresented groups is essential in promoting health and wellbeing for all. Thus, my facilitated discussion focused on resiliency in individuals with co-occurring trauma and developmental disabilities to help shift the narrative from a deficits framework to manifest resilience in this population.

Social Media

https://www.facebook.com/DanaNSayre/

https://www.instagram.com/dana_n_sayre/

https://twitter.com/DanaNSayre

 

 

 

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Tatiana Perilla

Discipline: Social Work
Utah Regional LEND

Tatiana Perilla grew up in Florida and moved to Utah to pursue her Master's of Social Work. After graduating she began to work as a project coordinator at Utah's UCEDD and became a LEND trainee to learn more about disability as she felt it was lacking in her education. Her professional interests and work revolve around the intersection of disability with mental health and abuse. Outside of work she likes to spend time with her daughter and cuddle with her cat, Rex.

Image Description: Tatiana, a light skinned Hispanic/Latinx young woman, sitting on a bench outside with her hands crossed while smiling. She is wearing a sleeveless dark blue and orange floral patterned dress with a belt around her waist. She has long dark brown hair past her shoulders and behind her is an outdoor courtyard with surrounding glass panes from a building nearby.

1. What does resiliency mean to you?

Resiliency means being patient and forgiving with yourself. I have had to start showing myself self-compassion and accept support from others to be able to overcome difficult situations. You can force yourself to do things alone and not practice self-care but this is not a sustainable way of living. Also, the quality of your work can suffer. I love working in the disability field and think my projects and community deserve my best effort- which comes from healthy resilience.

2. What does self-determination mean to you? 

Self-determination is advocating for myself and my values. By staying true to what is important to me, I can make decisions that are more likely to lead to fulfillment. Practicing self-determination means there will be times that I have to speak up when people in power do not want to hear my needs. It takes self-determination to be the best version of yourself.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Asking people for thoughts, listening, and not talking over them is a way to support people working on their self-determination and resilience. It should not feel like an uphill battle to simply be heard. By not putting others down and valuing their voices, you can take away some of the battles they face that require resilience and help strengthen self-determination.

4What are you doing within your center/program to support resiliency and self determination? 

I learned about integrative assessment teams in my LEND program. It helped me have a better understanding of how crucial it is to hear perspectives from as many angles as possible. I am passionate about improving training, services, and work in the field of dual diagnosis (mental health and disabilities) and am working towards doing this better. I am involved on training projects having to do with dual diagnosis and am choosing to do some more direct work with individuals with dual diagnosis. By supporting the mental health of people with disabilities in a direct and macro way, I believe this can support their resilience and self-determination as this is an area where people are often minimized. I would not be seeking out more direct work if it were not for my LEND program.

Social Media

https://www.linkedin.com/in/tatiana-perilla-73767a152

 

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Amanda Forry-Fino

Discipline: Self-Advocacy
Va-LEND

Amanda Forry/Fino is a certified disability advocate, CP gal, and author of her autobiography, Eternal Sunshine of the CP Gal’s Mind. She is a disability rights advocate, active Alumni of the Virginia Board for People with Disabilities. She has also joined the leadership team and presents for the Virginia Board for People with Disabilities, Training Alumni Association (TAA), is a Va-LEND graduate, and Public Speaker. In her free time, Amanda enjoys reading and writing books and walking. Born in Las Vegas Nevada Amanda lives with her family in Williamsburg, Virginia.

Image Description: This picture shows Amamda, a white woman with medium-length brown hair. Amanda is wearing a white top and a hairband. She is smiling and looking into the camera. There is a white and green background.

1. What does resiliency mean to you?

The word resilience means to be definable, to never stop going, even at the bottom of the abyss. I wear it as a badge of courage, for if I do not tell the truth about life with cerebral palsy, autism, or any other disability, who will? During my childhood, I suffered abuse of all kinds, and was fighting with my own demons. I turned my life around the moment I realized that I could love my cerebral palsy, and was born-again Christian.

2. What does self-determination mean to you? 

The word resilience means to be definable, to never stop going, even at the bottom of the abyss. I wear it as a badge of courage, for if I do not tell the truth about life with cerebral palsy, autism, or any other disability, who will? During my childhood, I suffered abuse of all kinds, and was fighting with my own demons. I turned my life around the moment I realized that I could love my cerebral palsy, and was born-again Christian.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

IF we are going to make a change, we can never give up on our dreams. It is my passion to be a good role model by displaying my self-determination and by never giving up on myself in life. I never gave up on my book. I hope to empower people by encouraging them to speak up if they have encountered similar situations by writing my book. I also wanted people to understand that people with disabilities feel the same emotions as any other human: I love, I feel sadness, and I experience joy, and I am even overcome with anger in certain situations. There is no reason to treat people with disabilities like children; we are not lesser than any other adults in the room. I do not need pity; I can tell when you are being over nice and treating me like a child. I do not need tokenism.

4What are you doing within your center/program to support resiliency and self determination? 

I hope to bring Christian churches, children with disabilities, and their families together by teaching and helping since having a church family is important and beneficial at any age. I aim to guide several churches into being more disability-friendly, including people with disabilities and including them with the respect we deserve. As part of my Va LEND Leadership project, I have created a flyer on "How to welcome a Disabled Adult in Chuch." I am praying to pave the way of including people with disabilities in every church in America.

Social Media

https://www.facebook.com/cpgalsworld

@therealcpgal

https://www.linkedin.com/in/amanda-fino-cpgal-6a0bb192/

 

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Christina Harkins

Discipline: Clinical and school psychology
Va-LEND

Christina Harkins is from Atlanta, Georgia and is a doctoral candidate in Clinical and School Psychology at the University of Virginia. Prior to graduate school, Christina worked as an undergraduate researcher at the University of South Carolina and attained a Masters degree in Applied Behavioral Analysis from the University of Cincinnati. She worked in the Behavioral and Developmental Neuropsychiatry team at Cincinnati Children's Hospital and conducted research on neurodevelopmental disorders, including genetic syndromes and autism. Christina is currently completing her pre-doctoral clinical internship at Vanderbilt University Medical Center, where she works with older children, adolescents, and adults with autism. In her free time, Christina enjoys listening to audiobooks, hula-hooping, and mountain biking.

Image Description: Christina is a woman with blonde hair. She is wearing a black dress with red flowers on it. She is standing outside by a brick wall on a sunny day.

 1. What does resiliency mean to you?

Resiliency means using your strengths, supports, and courage to adapt and cope with change in efforts to achieve your goals.

2. What does self-determination mean to you? 

Self-determination means being the director of your goals and pursuits with a growth-mindset.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can collaborate with individuals to identify and further develop their strengths and supports to set realistic, attainable goals that fulfill their needs across areas of functioning.

4What are you doing within your center/program to support resiliency and self determination? 

Individual and family therapy; developing comprehensive plans for next steps following diagnostic assessment.

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Emma Willis

Discipline: Speech Language Pathology
Blue Ridge LEND

Emma is in her final semesters of her speech language pathology graduate program. She is passionate about helping others and showing them their capabilities in resiliency and choosing what they want out of life. Her experience as a Blue Ridge LEND trainee has equipped her with the knowledge to be a better provider and client & family advocate.

Image Description: Emma, a white-passing woman with long blonde hair, is outside on a bright day. She wears a blue and white striped dress with a simple silver necklace and smiles into the camera.

 1. What does resiliency mean to you?

Resiliency means the ability of an individual to persevere through their life journey despite challenging conditions, events, or other barriers.

2. What does self-determination mean to you? 

Self-determination means having the ability to have autonomy over your path through life.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can support people in their resiliency and self-determination by advocating and providing education to the best of our ability. Additionally, we can assist in navigating the network of providers and services. It can be a significant barrier not knowing what professionals or organizations to talk to next.

4What are you doing within your center/program to support resiliency and self determination? 

I am working to understand the different resources throughout my area to help families and clients navigate what organizations or professionals to seek out. Knowing what goals different organizations cater to is so important in helping our clients reach optimal outcomes. It fast-tracks their ability to self-determine and supports continued resilience by reducing barriers.

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GailAnn Guy-Cupida

Discipline: Social Work and Public Health
Vermont LEND

Charlotte Amalie, St. Thomas United States Virgin Island BSW, MSW, MSA and Dr.Ph Asst. Professor at the University of the Virgin Islands Singing, reading and writing

Image Description: African American with Short blond hair smiling broad with sunglasses on(red lipstick in my shade of beauty) wearing a blue dress with a black scarf

 1. What does resiliency mean to you?

resiliency means despite of my many challenges, with a support system and will power that I am able to live my best life

2. What does self-determination mean to you? 

Self-determination mean to me No is not an option, that I can do all things through my higher power who gives me strength and where I am able to be supported by my friends, family and colleagues

3. How can we support people in our lives to help them be resilient and promote self-determination? 

allowing individual to be a part of the process, encouraging them to use their own voices in advocating for their needs. to promote culture competent care.

4What are you doing within your center/program to support resiliency and self determination? 

educating myself, being informed and also education others about the endless possibilities in promoting resiliency and self determination

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Benjamin Moore

Discipline: Self-Advocate
University of Washington LEND

Benjamin Moore graduated from the University of Washington’s LEND program of the Self-Advocate position in June 2021. They have been a Classroom Assistant at Seattle Children’s Alyssa Burnett Adult Life Center since January 2022, helping adults 18+ with developmental disabilities to live their lives to the fullest. Benjamin has previously spoken about their experiences as a neurodivergent individual on many occasions, and has been helping assist others with disabilities since high school.

Image Description: A young person, with short brown hair and black glasses, smiling, wearing a black t-shirt with a grey logo centered on it.

1. What does resiliency mean to you?

It means overcoming adversity and hardships. It means doing so while not giving up on your dreams. It means keeping at it, no matter what happens.

2. What does self-determination mean to you? 

It means believing in myself and my capabilities to achieve. It means thinking outside the box,

3. How can we support people in our lives to help them be resilient and promote self-determination? 

We can presume competence. We can talk directly to people with disabilities instead of someone else and not pretending like they aren’t in the same room. We can give them the tools as much as possible to help them achieve their dreams.

4What are you doing within your center/program to support resiliency and self determination? 

I am working with adults with developmental disabilities to help them to improve resilience and giving them the strength to believe in themselves.

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Whitney Stohr

Discipline: Family
University of Washington LEND

Whitney Stohr (she/her) is a Family Discipline Trainee in the LEND Program at the University of Washington in Seattle. She is the Leadership & Independent Living Program Manager at The Arc of Snohomish County in Everett, Washington, and is a full-time, family caregiver for her medically-complex, four-year-old son. She is the Founder and President of WA Kids Rise Fund, a Washington based, nonprofit organization promoting community inclusion and support for children with disabilities and their families. Ms. Stohr holds a bachelor's degree from the University of Montana (Missoula), a law degree from Gonzaga University (Spokane, WA), and master's degrees from the University of Florida (Gainesville) and The George Washington University School of Law (Washington, DC). In her free time, she sits on various community boards and committees, advocates for policy changes to better support children and families in her state, and spends time with her husband Jason, son Malachi and their dogs, Neptune and Marmalade.

Image Description: Whitney Stohr is a white woman in her mid-30s with dark brown eyes, short brown hair, and a diamond stud piercing on the right side of her nose. She is wearing a red shirt, with a thin-chained, gold necklace and gold, hoop earrings. She is smiling broadly at the camera.

 1. What does resiliency mean to you?

Resiliency is an internal sense of resolve to continue moving forward when faced with adversity. It is the strength of character and determination to survive through even the harshest of conditions, sometimes by sheer stubbornness and willpower alone. It is adaptability through changing circumstances, perseverance in the aftermath of trauma, and pragmatism in challenging situations. It is tenacity and grit, existing alongside faith in oneself and an unwavering hope for the dreams of tomorrow. And moreover, resiliency is the unrelenting, dogged persistence in pursuit of those dreams, of that tomorrow.

2. What does self-determination mean to you? 

Self-determination is the personally held right and freedom to choose one's life path. It is the ability to establish one's own belief system, values and priorities. It is the liberty to pursue one's goals and passions and proclaim to the world one's own identity. It is also the latitude one holds to make mistakes, to experience the consequence of choice, and the chance to learn from personal blunders. Self-determination is a cornerstone of what it means to experience being human, fully in scope -- both the joy and the despair, times of personal growth and achievement, and experiences of failure and shortcomings -- the good and the bad, altogether, but nonetheless, bound to the pillar of choice.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

On a personal level, to help the people in our lives grow in their resiliency and self-determination, we can build them up, encourage them in the pursuit of their goals, and celebrate the unique talents and attributes they bring to the world. We can offer words of encouragement and, if it is within our power, we can provide tangible supports in times of crisis or periods of personal growth. On a broader level, we can recognize that some of the people in our lives experience crises and circumstances of adversity more frequently than others due to systemic conditions that are beyond their control. And yet, such conditions continuously demand a heightened level of resiliency from those individuals if they wish to continue in their pursuit of self-determination. We can acknowledge that reality, and we can support those individuals in our lives through activism and allyship and by continuously working to address societal inequities.

4What are you doing within your center/program to support resiliency and self determination? 

In my role as a family caregiver of a child with disabilities, I gained valuable insight into how the systems, services, policies and programs designed to support individuals with disabilities and their families, actually operate in practice. My experience in resiliency as a caregiver and my goal to promote self-determination for my own son, along with my background in law and public policy, informs my work and my advocacy alongside other parents, families and self-advocates. Through my work, I engage in legislative advocacy and join with coalition groups working to drive real and lasting change. I support parents and families of children with disabilities by connecting them with the supports, services and resources they need to thrive, so that they can continue to build the resiliency of their family and, ultimately, their child's right to self-determination. I get to combine my experience and my work with that of my colleagues from across my state, and across the United States, to support policy development and call for much needed change at every level.

Social Media

https://www.facebook.com/WAKidsRise

https://www.instagram.com/rollin.w.spinabifida

https://www.linkedin.com/in/whitneystohr/

 

 

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Danielle Gerber

Discipline: Family
Waisman Center (WI LEND)

Danielle Gerber is a writer and a mom of three, one of whom is medically complex. She believes stories and lived experience hold power to evoke change. She is committed to sharing her family's story and working collaboratively in interdisciplinary groups in order to improve the systems of care for children and families with disabilities. Danielle is an advanced family discipline graduate of the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI LEND) program, based at the Waisman Center in Madison, WI.

Image Description: Danielle is a white female with long brown hair, smiling while wearing a black blazer and standing against a wood panel wall.

1. What does resiliency mean to you?

As a person with a severe hearing loss, I understand on a small scale just how much effort it takes to advocate for your own needs all day, every day. When I became a mother to a child with severe disabilities and complex medical needs, it became an even bigger task to advocate for him and his needs. I think self-advocates and caregivers both exemplify what it means to be resilient - you just keep going, no matter what.

2. What does self-determination mean to you? 

When I think about self-determination, I think of all of the different ways that people helped me see that my son could actively make some of the choices about his life even though he was nonverbal and very developmentally delayed. I believe that everyone should have goals and play a part in determining what goals are important to them, while actively working to achieve them in whatever way is best for the individual.

3. How can we support people in our lives to help them be resilient and promote self-determination? 

Providing families with education is a solid way to help promote resiliency and self-determination. Education about tools, services, skills, supports, etc all help families do better with what they already have and help them become even better advocates.

4What are you doing within your center/program to support resiliency and self determination? 

Helping to provide education for future professionals through LEND by sharing my story and my family's story, sharing the perspectives of other more marginalized voices and working with others to help tell their story and encourage advocacy.

Social Media

 

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Damon Casseday

Discipline: Family
West Virginia University Center for Excellence in Disabilities

Damon Niles Casseday from Greensboro, PA. Bachelor of Arts West Virginia University Minor Recreation and Parks West Virginia University Master Agriculture, Natural Resource and Design, WVU. Damon is currently a third-year PhD Student at West Virginia University and a previous LEND Trainee at West Virginia University. Interests include finding ways to improve the natural and built environments for individuals with Autism to promote better navigation and access while in these areas. hobbies include bowling, music, camping, and amusement parks.

Image Description: When I first arrived back to WVU in 2019, I was given a shirt as an incoming graduate student that reads "Find Your Purpose." I took the shirt to heart and it is a driving factor that keeps me moving forward with my work. The "Macho Man" Randy Savage is my favorite all time professional wrestler. Dustin(my son who has Autism) and i were in Walmart and in typical Dad fashion I saw these hats and made Dustin laugh with my ooooooh yeahhhhh Macho man impression. No matter what life throws at you keep a smile.

1. What does resiliency mean to you?

As a parent of a child with Autism Spectrum Disorder, I believe resiliency reflects not only accepting a heart-breaking diagnosis but fostering ways to improve the world for individuals regardless of abilities. The smallest changes can make the largest differences to everyone.

2. What does self-determination mean to you? 

A parent must remain vigilant to a child with Autism. Self-determination means never give up and always place others before yourself. One must be willing to sacrifice and put in the hard work to truly become successful and have a sense of self-efficacy

3. How can we support people in our lives to help them be resilient and promote self-determination? 

The first thing we can do is provide meaningful support in many facets including information, instruction, and tangible means such as hands-on opportunities and materials to implement these ideas such as videos and equipment. The second is to foster a network of support for both families of individuals with disabilities as well as a collaborative group of many different backgrounds and education to provide a well-rounded experience and outcomes. Finally, a simple email or phone call to just check in on someone can make a day go from bad to good. 4What are you doing within your center/program to support resiliency and self determination? 

I am no longer involved with the LEND program at West Virginia University. However, I have shared my research and projects works with them to further more studies or implementation. As a PhD student, i feel it is my obligation to ensure recreation areas and parks and playgrounds are accessible and inclusive with meaningful implementation with ideas such as universal design.

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