2018 Emerging Leader Profiles

 

AUCD Emerging Leaders Map

The AUCD Emerging Leaders Map highlights the contributions of diverse trainees across AUCD's network. Each person was selected for inclusion on the map based on their contributions to the network, how they have demonstrated leadership, and their values and commitment to diversity, inclusion, and respect for others. You can click the pins in each state to learn about the different programs and centers, as well as the activities that trainees are involved in. 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!

This project was created and developed by the 2016-17 AUCD Virtual Trainee, Elizabeth (Liz) Schmidt, and 2017 AUCD Assistant Virtual Trainee, Sheida Raley. We also want to thank the 2017-18 AUCD Virtual Trainee, LaKesha Pettigrew, and 2018 AUCD Assistant Virtual Trainee, Brett Enneking, for their time and efforts to implement the inaugural 2018 AUCD Emerging Leaders Map.

VIEW 2018 AUCD Emerging Leaders Map, Showcasing Trainee & Early Career Leaders within the AUCD network.

To be highlighted on the map for 2018-2019, please watch for the nomination survey in Fall 2018. Questions about the AUCD Emerging Leaders Map should be directed to AUCD's Christine Liao.

 
 

AK: Center for Human Development,
Greta Goto
MS: Partners for Inclusive Communities,
Alyssa Danielle Parks
AL: Civitan International Research Center and Sparks Clinics, Kathleen Wallace NC: Carolina Institute for Developmental Disabilities, Heather Alico Lauria
AZ: Sonoran UCEDD,
Claire Emmert
NE: Munroe-Meyer Institute for Genetics and Rehabilitation, Lauren Arceneaux
AZ: Sonoran UCEDD,
Sean Galbadon
NH: NH-LEND,
Jessie Poquerusse
CA: CA-LEND,
Diwata Macalino
NM: University of New Mexico,
Katherine (Kat) Isaacson Elwell
DE: Center for Disability Studies,
Angela Mitchell
NY: Strong Center for Developmental Disabilities,
Valerie Smith
FL: Florida Center for Inclusive Communities,
Gary Lam
OH: LEND Program at Cincinnati Children's Hospital and the University of Cincinnati, Emily Jones
FL: Mailman Center for Child Development,
Samantha (Sami) Kanterman
OH: Nisonger Center,
Dana Kamara
IL: University of Illinois LEND,
Angel Miles
PA: Institute on Disabilities,
K. Eva Weiss
IN: Riley Child Development Center,
Anna Merrill
TN: Vanderbilt Consortium LEND,
Nathan Fields
KS: Center for Child Health and Development,
Andrea D'Achiardi
TX: Center on Disability and Development,
Grace Brannon
KS: Center for Child Health and Development,
Allie Hicks
UT: Utah Regional LEND,
Caitlin Winters
LA: Human Development Center, 
Gregoria Rosa-DiStefano
UT: Utah Regional LEND,
Melissa Crist
MI: MI-LEND,
Emily Milligan Thompson
VA: VA-LEND,
Alexis Nichols
MI: MI-LEND,
Jae Han
WI: Waisman Center,
Catherine Kanter
MN: MN-LEND,
Pang Chaxiong (Paj Xyooj)
WV: Center for Excellence on Disabilities,
Devin Parsons

 
 

Greta Goto
Center for Human Development (AK)

Greta GotoGreta Goto is a life-long Alaskan, born in Fairbanks, raised in Dillingham and resides in Anchorage. Greta has 15+ years of professional experience in non-profit and business administration, community outreach, research and project development, strategic planning, board and committee work. Most recently, she served as executive director of the BBNC Education Foundation. Prior to that, she was program manager for the University of Alaska Statewide Workforce Programs. Greta is a founding member of the Prader-Willi Syndrome Alaska Parent Group and a member of Prader-Willi Syndrome Association USA. Greta has a bachelor's of science in Comparative and Regional Studies, School of Foreign Service at Georgetown University and an MBA from the University of Alaska Anchorage (UAA). She is currently enrolled in LEND Without Walls at UAA, Center for Human Development, Alaska's UCEDD. Her LEND leadership project is an environmental scan regarding integrated services for persons who experience rare disorders in Alaska.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Alaska LEND has provided the opportunity for Greta to see the provider and policy-maker perspective of working with people who experience neurodevelopmental and related disabilities. An eye-opening clinical experience for Greta has been the Anchorage FASD diagnostic clinic which I've attended twice. This clinic exemplifies the LEND interdisciplinary approach to intake, assessments, diagnosis, collaborative recommendations and shared learning that identifies holistic interventions. Greta has also participated in grand rounds via video and audio conference (Children with Chronic Medical Conditions, American Academy of Developmental Medicine and Dentistry); provider meetings like the Special Needs Parent Teacher Student Association, National Indian Child Welfare Annual meeting, 2016 and 2017 Compendium of Disability Statistics; observing practitioners in action, e.g. Alaska Center for Pediatrics. In March and April, Greta will be observing neurodevelopmental and genetic clinics. 

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Greta wrote a personal mission statement as part of her individual leadership training plan. It is: "To connect systems, break down barriers and produce cost savings that result in continuous improvement of health and related service delivery to people, families and communities over the life span." The Alaska LEND program has provided a space for Greta to dedicate time to my passion of finding innovative ways to provide services and supports across the lifespan for persons in Alaska who experience rare disorders. LEND has opened doors to access professionals, programs and policy makers that would have otherwise taken Greta years to even find!

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

When Greta applied to LEND last spring, her goal was to develop a Prader-Willi specific program that would help her daughter and others with PWS in Alaska. However, a couple of months into the LEND program and exposure to other viewpoints, Greta realized she would need to modify her goal. She saw a larger need for a flexible system of integrated services for the community of people in Alaska who experience rare or low incidence disorders. Greta believes that what matters is early diagnosis, positive and appropriate interventions, and holistic support across the life span. A particular need is more focus on transitions and aging. Greta's original goal has matured to incorporate this learning.  

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Greta is the parent of a young woman who has Prader-Willi Syndrome. Until her daughter was born, Greta had very limited experience with the world of disabilities. But for 25 years now, her family's world has revolved around advocacy on her daughter's behalf with the systems of primary health care, specialists, education, insurance, IDD waiver, political, legal, financial, and housing. LEND has given Greta a rare opportunity to view this world from a provider perspective. She believes this experience will undoubtedly make her a better advocate for not only her daughter, but also for other individuals who often are not at the decision-making table.

5. What advice do you have for individuals interested in joining a similar traineeship?

Greta's advises, "Don't be afraid of taking up the challenge." For Greta, interdisciplinary meant combining her business background with the many specialty health disciplines she was exposed to in LEND. Everything Greta is learning is making her a stronger advocate for her daughter. She also hopes it makes her a better help to other families who experience similar issues of access to this complex system of care. On a personal note, Greta appreciates the collective knowledge and experience her cohort of LEND Fellows bring to all their learning. She appreciates their LEND faculty who are genuinely concerned with them as individuals as well as Fellows. Greta is so grateful for the opportunity to participate in this unique leadership training program and be associated with a community of people who "get it, and do it."

 

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Kathleen Wallace
UAB Civitan-Sparks Clinics (AL)

Kathleen WallaceKatie Wallace is a 4th Year Audiology Extern and LEND Trainee at the UAB Civitan-Sparks Clinics, and will graduate in May with a Doctor of Audiology degree from the University of South Alabama.  She currently holds Bachelor's degrees in Psychology and Communicative Disorders.

As an audiology extern at Sparks, Katie participates in pediatric hearing assessments as well as intervention for those identified with hearing loss.  She has especially enjoyed working alongside a team of interdisciplinary professionals that collaborate to provide optimal care and recommendations for each individual child.  She is passionate about early identification and intervention of hearing loss in children and hopes to continue to provide this care in an interdisciplinary setting in the future.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience? 

The LEND trainees at Sparks have been working together with the Regional Autism Network (RAN) to develop a statewide database of resources and services available to children with autism in their families in Alabama.  Katie is also a mentor in the MCH HOPES program for a local high school student interested in healthcare.  She is there to help with goal-setting, college applications, resume, interview skills, and any other transitional skills needed.  Katie participated in the Arc of Central Alabama Fashion Show by acting as a "personal stylist" for a child with autism and her family.  She has also had the opportunity to observe at other clinics and facilities in the community that work with children with developmental disabilities. 

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Katie's passion has always been working with children and their families, and as an audiology trainee at Sparks she has had the opportunity to pursue that passion by developing the skills she needs to be excellent clinician.  Katie feels that her experiences as a LEND trainee have not only allowed for growth in her diagnostic abilities but further emphasized the importance of approaching families with empathy and kindness in what can be a particularly stressful time for them.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Katie has always known she wanted to work with children, but this experience has opened the door for her to work with children (and adults) of all developmental levels.  As mentioned above, Katie would love the opportunity to continue working in an interdisciplinary setting where she can be on a team and help a variety of patients.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Absolutely. Katie feels this experience has provided her the opportunity to see what families go through on a daily basis, and the perspective to see that every family is unique and has individual needs.  She tries to do her best to convey this understanding with every family she comes in contact with and hopes it translates into comfort and trust in her ability to do her job.

5. What advice do you have for individuals interested in joining a similar traineeship?

Katie's advice for interested individuals is to do it!  She feels it is such a unique experience in which you will gain skills in your own profession, learn a lot more about other professions, learn to collaborate with these other professions to benefit patients, as well as work with a diverse patient population. 

 

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Claire Emmert
Sonoran UCEDD (AZ)

Clare EmmertClaire Emmert is an undergraduate student at the University of Arizona working towards a dual degree in Family Studies and Human Development and Special Education and Rehabilitation with a Certificate in Developmental Disabilities. She works as a Peer Mentor at Project FOCUS, where she supports students with intellectual disabilities as they navigate academics, internships, and campus life. In the past, she has travelled to Fiji to work with children with disabilities as well as worked as a residential aide for individuals with spinal cord injuries in Stony Brook, New York. Her current research focuses on Person-centered Planning for foster youth with developmental disabilities, which she presented at the 2017 AUCD Conference. Her future goals include becoming an occupational therapist and continuing to support individuals with disabilities in leading meaningful lives through equal participation and full inclusion. 

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Since becoming a Sonoran UCEDD trainee, Claire has had the opportunity to conduct research on the Picture of a Life Program and evaluate the efficacy of Person-Centered Planning for foster youth with developmental disabilities. Through qualitative interviews, Claire's work explored how the planning process impacted quality of life from the perspective of youth and facilitators involved in the project. In addition, Claire has been given the opportunity to work with the Arizona Center for Disability Law, where she created a parent- friendly advocacy guide to support the acquisition of Assistive Technology in a school setting. Through her traineeship, Claire has also built a strong network of peers, professionals, and self-advocates who continue to inspire her by the work they do to improve the lives of people with disabilities.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Claire's passion lies in working to better the lives of people with disabilities through the improvement of the services, policies, and beliefs that impact them. Ultimately, she aspires to become an occupational therapist equipped with the education and advocacy skills necessary to seek change at a systemic level so that she may help others to not just accept disability, but celebrate it as a form of diversity. Before becoming a trainee with the Sonoran UCEDD, Claire felt as though her ability to make a change as an undergraduate student was out of reach. As she was connected to mentors at her center who challenged her and provided research and community opportunities otherwise unavailable, Claire has developed confidence in her ability to contribute towards a lived disability experience. This sense of empowerment is something Claire feels she will take with her as she pursues a career in occupational therapy and continues to grow into a strong advocate seeking systemic change.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Claire believes her traineeship has greatly enriched her academic experience at the University of Arizona and better prepared her for a career in occupational therapy. Through Claire's research, I have met several foster youth with developmental disabilities who have shared their experiences growing up and navigating through multiple systems, including the barriers they face and aspirations they hold. Claire believes these unique opportunities have complemented her academic career by placing personal stories at the forefront of her work. Furthermore, Claire believes it has taught her the importance and value of research as it impacts individual lives by informing policies and best-practices. While Claire has never considered a career in research before, she now looks forward to the ways in which she can remain involved in projects such as these in the future.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Claire believes that her traineeship has made her a better advocate for individuals with disabilities because she has been challenged to evaluate the ways in which she can improve my advocacy skills. Due to my involvement in the Picture of a Life evaluation, Claire was able to attend the 2017 AUCD Conference where she listened to lectures on effective advocacy strategies. In addition, through exposure to other strong advocates, Claire began to set goals for herself, such as attending the Disability Policy Seminar or participating in a hill visit. Ultimately, her traineeship has challenged and inspired her to continue growing as an advocate, which she believes is crucial to becoming an occupational therapist.

5. What advice do you have for individuals interested in joining a similar traineeship?

The top three pieces of advice that Claire has are as follows:

1. You get what you give. Take advantage of the experience, because a traineeship 
offers incredible opportunities to connect with your local community as well as build a larger network of colleagues. Furthermore, the AUCD website offers several resources to continue learning and growing, and as a student herself, Claire is thankful for these opportunities to attend webinars, stay updated on current policy and legislation, and find ways to attend AUCD events.

2. Attending the AUCD conference is a must! If there is any way to participate in this event, it is an invaluable and truly empowering experience and proves that once you have joined the AUCD network, you are in it for life!

3. There is never a wrong time. While the traineeship does require a considerable amount of your time, Claire believes the experience is valuable at any career stage because it can be tailored to your situation and goals.

 

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Sean Galbadón
Sonoran UCEDD (AZ)

Sean GalbadonSean is a Graduate Assistant at Northern Arizona University for the Institute for Human Development. He was born and raised in Phoenix, AZ, where he lived until he graduated high school and left for college. Sean earned his graduate and undergraduate degree at NAU and wanted to continue the work he was doing on campus. From the moment he stepped on NAU's campus, he wanted to help not only himself but other students as well. Sean always had a passion for LGBT+ rights and wanted to continue this fight when he went to college. He signed up for as many LGBT clubs as possible and even worked for the office of LGBT support while obtaining his degree. While fighting for these rights on campus, Sean was opened up to a word that helped change his entire perspective on activism... intersectionality. This word describes the many aspects that create a person and how each one of these elements creates a unique experience for this individual. It also brings lights to the unique struggles people face when they have multiple identities that are discriminated against. Sean began researching about current resources and research the university has for people with disabilities who identify as LGBT+. What he found is a gigantic gap for this subgroup, and he realized he needed to do something. When he began his degree program he was hired at Institute for Human Development to research this topic. So far, Sean and his partner have started the beginning stages of creating a resource website. This website is dedicated to people with physical and motor disabilities and covers sexual health for ages 12-18+. This is just one way he wants to be able to help people with disabilities have access to resources and have the opportunity to talk freely about subjects that are frequently ignored. Overall, Sean's college career has helped him define who he wants to help and why he wants to accomplish these goals. He is so thankful to have the opportunity to create resources for those in need.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Sean has worked on a variety of projects since beginning his program for the 2017-18 academic year. He has worked at an interdisciplinary clinic at Arizona's UCEDD, which aims to help low-income families receive resources and healthcare. The clinic involves over 5 different medical professionals helping to diagnose, treat, and recommend further resources. Another opportunity Sean has been involved in is the creation of a sexual health website/project to help people with physical and motor disabilities. This specific project was an opportunity he was able to choose personally and is his major project for the entire year. The goal of this project is to break stigma and prejudice around sexuality, race, and disability.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion

Sean's passion has always been to help people, especially those that come from disadvantaged backgrounds that do not have access to these resources. As a diversity fellow at his center, Sean is allowed to work on any project that will help him pursue his career goals. He was able to select his project even though it is considered more taboo, and others provided collaboration and resources. Sean's program is very supportive, and he thinks that the research aspect is what really allows the free-range given. He feels that if the program did not have these open choices it would have been extremely difficult to achieve these dreams.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Sean feels that his work has helped him define the path he would like to go on. The program has offered him a glimpse into the world of disability and the many subfields within it; it has shown him how his goals fit in within this world. Before Sean joined his program he felt that his research and career goals would not be allowed into this world or appreciated. Being in a place so supportive has given him a lot of hope for the future.

 4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Sean feels that it has helped him become a better advocate in every way. Being a trainee has shown him a lot of issues currently for those with disabilities, and those that caregivers/practitioners do not discuss. When Sean saw things such as the lack of resources for sexual health, sexuality, and gender, it pushed him to strive harder for those with disabilities who may not be able to advocate these issues.

 5. What advice do you have for individuals interested in joining a similar traineeship?

Interested individuals should research their program before joining and speak with the supervisors to see if that specific place is a good fit. Knowing your research goals and ambitions is important for wanting to join any trainee program. When applying you should know your research and the area that you want to go into as a career because this will help the program best form to you and provide the most resources. Having ambition is good as well because some programs are very competitive and being invested is something that many programs like to see in their trainees. 

 

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Diwata Macalino
CA-LEND (CA)

Diwata MacalinoAfter working about 5 years as a research associate at a San Diego biotech company, Diwata decided to pursue a career in nutrition as she became more aware of the integral effect it has on the human body. Now, she is concurrently a 2nd year nutrition fellow with the CA-LEND program and a 2nd year intern in the dietetic internship at Children's Hospital Los Angeles (CHLA). LEND and CHLA have provided experiences that have given her the confidence to provide person-centered care to families with individuals with special health care needs. Along with the validation of Diwata's career change, she has found tremendous value in her training at CHLA and LEND. She is eager to soon employ the skills she has acquired in serving as a registered dietitian in an interdisciplinary setting. 

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

The CA-LEND program is based out of the USC UCEDD, which offers a feeding development clinic. Diwata spent her first year as a part of the team that provides interdisciplinary services to children with developmental feeding difficulties and their families. This experience was vital to establishing and building her clinical skills in preparation to rotate through various other departments and clinics at CHLA. Additionally, LEND has provided her with a space to learn with and from trainees from 14 other disciplines. It has been an experience Diwata recognizes not many professionals receive. It has reframed her thought process in providing services and identifying her scope of practice.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

At some point about 7 years ago Diwata feels she began to be more intune with her body and what she used to fuel it. In making lifestyle changes to improve her overall health, Diwata became more aware of the epidemic of obesity in our country and the increased risk for comorbidities associated with it. In a job where she was trying to cure, she realized she wanted to prevent. Diwata's own lifestyle changes allowed her to feel and experience what health promoting habits can do for a person.

During Diwata's time at LEND and the UCEDD's Feeding Development Clinic she saw children at risk for failure to thrive as a result of a disability and she thought: "I've never seen, right in front of me, a need for proper nutrition like this before." It was at that point that Diwata's focus on nutrition expanded from preventing obesity to including malnutrition. Many children had disabilities that have led them to have feeding difficulties extreme enough to threaten their growth and development. Through Diwata's experiences with LEND and the UCEDD, she has had not only had a chance to pursue this passion, but also to refine it.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Prior to beginning her fellowship with CA-LEND, Diwata was unaware of the gap in trained professionals available to provide services to people with special health care needs and their families. In her 2-year training, she feels that she has now developed a place in her heart to close this gap. Diwata is currently unsure of what this looks like, but she does know that she will take her family-centered, culturally competent, and interdisciplinary approach where ever she goes in order to provide each person with individualized care.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Definitely.  Diwata believes that her training has made her a better advocate in general. Not just for people with disabilities, but for anyone in need of having their voice heard. While Diwata knows that she is not an expert in the systems of care in place, she now feels more familiar with them and has an increased comfort in directing individuals and families to resources that may be of service to them. Additionally, Diwata is more aware of the role she can play as a service provider, whether it is as a liaison or in the form of a referral.

5. What advice do you have for individuals interested in joining a similar traineeship?

Diwata's advice is that you may not know that you are interested in special health care needs and disabilities like she was when she began, but the experiences are invaluable. Diwata believes that the traineeship will undoubtedly encourage your growth on a professional and an individual level. As service providers, there is a commitment to life-long education and refinement to provide the most up-to-date, competent, and complete care for every individual encountered in professional practice. There is nothing to lose by adding the skills you will gain through a similar traineeship, but so many opportunities that can arise. 

 

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Angela Mitchell
Center for Disability Studies (DE)

Angela MitchellAngela Mitchell is a mother of 3. Her oldest, Jonathan has nonverbal Autism Spectrum Disorder. He has been the catalyst for her advocacy and has inspired her to become more involved in advocating for those with developmental disabilities.

Angela has a Bachelors degree in education and a Masters degree in counseling and student affairs from the University of Delaware; additionally, she has doctoral training from the University of Georgia in counseling psychology.

Angela is also a graduate of Partners in Policymaking - a leadership training program that focuses on community leadership around issues that affect individuals with disabilities.

Currently, she sits on the Autism Delaware Business Advisory Council, the board of directors of the Parent Information Center of Delaware, and is an appointed member of the Governor's Developmental Disability Council. Angela was recently elected to the Christina School District Board of Education. She is also a current LEND trainee.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Angela has been involved with community organizations and helping to create a Special Education Strategic Plan for her local school district. She has also attended the AUCD and LIFE conferences. Additionally, Angela has participated in the Delaware Developmental Disability Council.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

 Angela's passion is creating change at a systemic level. Policy and helping individuals with disabilities on a macro level is what Angela believes she would like to do in the long term. Angela feels LEND has afforded her the opportunity to explore this interest by providing funding to support her going to conferences to learn all that she can; Angela also has gotten a chance to learn from various professional areas in didactic sessions. Angela believes she has been able to explore systemic and policy hurdles and hear various perspectives that give a background and framework that is critical in understanding the complete picture in advocacy. LEND has also provided networking opportunities to other trainees, and community members, organizations and professionals that support individuals with developmental disabilities. 

 3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

This experience has helped Angela to clarify her goals. At the beginning of the program, she knew she wanted to go into advocacy. Since then, Angela has learned that advocacy takes many forms. It can range from working one on one with a individual or family to working to create systems change in government.

LEND also has given Angela access to like minded people who are on the same trajectory and who are working to support the population of individuals with disabilities.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Angela absolutely thinks the traineeship has made her a  better advocate.

Not only is it important to have a seat at the table, it is important to have the knowledge base to be effective in speaking with legislators, working with families and being good stewards in the seats that each of us have. At the last didactic session Angela learned a great deal about special education, laws, and collaboration with the medical field. She learned new terminology and learned about new Autism initiatives in her state. Angela believes that the more knowledge she has the better she can advocate. Knowledge is a powerful asset and can make a world of difference. She is learning that to be effective, she needs to learn to speak the language of the land; in other words, by having a foundational knowledge across disciplines, she has a more complete picture that allows her to be more effective.  At the heart of LEND is the concept of an interdisciplinary approach. Angela feels that appreciating and understanding these intersections will enable her to view advocacy differently, and in turn allow her to create better outcomes for initiatives that I undertake.

5. What advice do you have for individuals interested in joining a similar traineeship?

Immerse yourself in all of the experiences, and use this program to explore, cultivate and hone in on your interests and areas of weakness.

 

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Gary Lam
Florida Center for Inclusive Communities (FL)

Gary LamGary Yu Hin Lam is a doctoral candidate in School Psychology at the University of South Florida. He is currently completing his clinical internship at the Center for Mental Health Policy and Services Research at the University of Pennsylvania. Gary's research and practice interests include providing quality psychological services for youth and their families across educational, clinical, and community-based settings. His professional goal is to promote well-being among individuals with autism across the lifespan.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Gary Lam is from the University of South Florida UCEDD.  He conducted research and clinical services with individuals with autism at the Florida Center for Inclusive Communities (FCIC).  There, Gary provided mentoring for adults with autism and assisted with program evaluation for the Learning Academy, a post-school transition program for adults with autism.  Gary also worked with Center for Autism and Related Disabilities, a resource affiliated with the Learning Academy that advocates and provides information and connects families of individuals with autism to services.  Gary also worked at the Interdisciplinary Center for Evaluations and Interventions conducting evaluations and school-based consultation for students with autism.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Gary's passion is to promote the wellbeing of individuals with autism across the lifespan.  He is passionate about working with school-aged youth as well as young adults transitioning out of school.  The UCEDD at the University of South Florida provided interdisciplinary experiences and exposure to other scholars and professionals with different perspectives.  Altogether, this provided Gary with a well-rounded approach to supporting individuals with autism across different systems.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Gary's work at his UCEDD has provided great opportunities to learn more about transition from school to adulthood.  His work here has influenced his direction towards providing support across the lifespan- issues with aging, expanding support from school-age to adults with autism.  Gary's work with his UCEDD also exposed him to community-based participatory research (CBPR).  To Gary, it is crucial that research is informed by the needs of the autism community and that it enables meaningful participation. 

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Gary believes he has become a better advocate for individuals with disabilities through his traineeship.  He has learned to respect the views of individuals with disabilities, especially in the context of research.  During his first year, he was not sure how to acknowledge their voice; today, however, Gary's dissertation implements CBPR principles to work with adults with autism.  Today, Gary hesitates calling himself an advocate for people with disabilities.  Instead, he sees himself more comfortably as an advocate with people with disabilities.  

5. What advice do you have for individuals interested in joining a similar traineeship?

AUCD is a great network of resources. Don't hesitate to reach out to other trainers and trainees and share about your interests. More often than not, you will be able to find common grounds and connect your ideas with other people's work. Gary believes this is how we work together as a field to gain better knowledge on serving people with disabilities.

 

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Samantha (Sami) Kanterman
Mailman Center for Child Development (FL)

Samantha (Sami) KantermanSamantha Kanterman graduated from the University of Miami in May 2017 with a Bachelor of Science degree in psychology and minors in biology and chemistry. She is currently enrolled in the Masters of Public Health program in the Miller School of Medicine at the University of Miami. Sami is the public health LEND trainee liaison for the Mailman Center LEND program at the University of Miami. She aspires to be a physician that works with children with intellectual and developmental disabilities. She currently volunteers at the Center of Autism and Related Disabilities (CARD) and is involved in research in assuring healthcare for transitional age and adult individuals with intellectual disabilities.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Through Samantha's LEND experience, she is working with the Center for Autism and Related Disabilities (CARD) and is involved in research about getting adequate healthcare to individuals with intellectual disabilities. Through CARD Samantha is working to make sure that individuals with autism and related disabilities have access to the resources they need. In CARD, Samantha mostly focuses on individuals in the transitional age and adults, but she also does some work with younger children. In the future Samantha plans to shadow a developmental pediatrician and work with a mobile pediatric clinic through her program. 

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Samantha's passion is to ensure that everyone has access to adequate healthcare. Specifically that transitional age and adult individuals with disabilities have access to health professionals that specialize in treating patients of their age. Samantha feels her center has enabled her to pursue this passion by connecting her with organizations and professionals in her area that are actively working to ensure individuals with disabilities get adequate healthcare and resources. AUCD has enabled Samantha to pursue her passion through attending the AUCD Conference where she met other people through poster sessions with similar interests and was able to discuss and learn from their work.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Samantha's work has been impacted by her experience at her program because it has empowered her to be an advocate for people with disabilities. My previous goal was to be a physician that worked with children with neurological illness but now Samantha's focus has shifted to working with children and young adults with disabilities as a physician and an advocate. In addition Samantha's work at her program has taught her to think at a systems based level rather than just at an individual level. Samantha believes that thinking and acting at a systems based level will allow her to help the most people now and in her future career. 

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Samantha believes her traineeship has definitely made her a better advocate for individuals with disabilities. She has been empowered to be an advocate through learning from other advocates in her program and at the AUCD conference. Samantha has also learned the importance of advocacy and that it is not enough to just treat an individual. To be truly effective and impactful in people's lives you need to advocate at a systems level so your work helps as many people as possible. 

5. What advice do you have for individuals interested in joining a similar traineeship?

Samantha's advice for individuals interested in joining a similar traineeship would be to just do it. As a public health student Samantha believes her traineeship has allowed her to apply public health principles to working with individuals with disabilities and to become a better advocate. Also as someone who wants to become a physician in the future, Samantha believes her traineeship has taught her the importance of not just patient treatment, but also the importance of being an advocate for her patients and people with disabilities in general. Also she feels her program has shown her the importance of interdisciplinary work in the medical field.

 

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Angel Miles
University of Illinois LEND (IL)

Angel MilesDr. Angel Love Miles's research focuses on the intersections of race, class, gender and ability as they pertain to disparate social and economic outcomes for women and minorities with disabilities. She received her BA in English from Penn State University in 2003 and her PhD in Women's Studies from the University of Maryland College Park in 2016. Her dissertation entitled "Barriers and Facilitators to Homeownership for African American Women with Physical Disabilities" highlights how education, economics, architecture, and discrimination, combine with personal issues of identity and self-esteem to create barriers to homeownership for these women. She is currently working on multiple collaborative projects with her mentors at the University of Illinois at Chicago, Drs. Joy Hammel and Fabricio Balcazar, as a NIDILRR Postdoctoral Research Associate in the Department of Disability and Human Development and the Department of Occupational Therapy.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As an AUCD postdoctoral trainee Angel has benefitted from being mentored by leaders in the interdisciplinary field of disability research. Angel has collaborated with mentor Dr. Joy Hammel as a co-instructor for her course on community participatory action research. As a co-instructor she helped to facilitate a focus group and semester long research project on the barriers and facilitators to successful transition out of nursing homes and integration into the community for people with disabilities. Angel also constructed an assignment developed to strengthen student's awareness of their research biases and how they can impact their research process. This assignment introduced students to self-reflectivity and intersectionality as concepts that can help researchers identify their biases, analyze their data and construct their research more equitably. Angel has also grown from the constructive feedback she has received from mentor Dr. Fabricio Balcazar on her written submissions for article publications and future research funding.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Angel is passionate about building a career where she can merge her theoretical, pedagogical and research expertise, with her disability advocacy skills and personal insights as a black woman with a physical disability. Being an AUCD postdoc has enabled her to merge those interests by strengthening her knowledge about and opportunities to conduct community participatory action research. In addition, by providing an opportunity to audit a disability studies course on disability empowerment, Angel is learning multiple strategies and theoretical approaches to cultivating and enabling empowering relationships with the disability community. It also has helped her better identify the power and agency that she has as a researcher, an educator, and as a member of the disability and other marginalized communities.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Angel believes this postdoctoral position has better prepared her for a successful career as a teacher, researcher, and advocate for people with disabilities and other disempowered communities. It has helped her identify the areas she need sto improve upon as well as her strengths as an academic and research professional.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Yes. This postdoctoral position has provided opportunities for Angel to independently think, read and publish her work as well as opportunities to engage and collaborate with members of the disability community such as partnering on projects with the independent living center Access Living. Opportunities to advance her independent scholarship coupled with community engagement has strengthened her knowledge of the needs and desires of people with disabilities from diverse backgrounds, making her a more effective and authentic advocate, ally and member of the disability rights community.

5. What advice do you have for individuals interested in joining a similar traineeship?

Angel believes this opportunity is truly what you make of it. She advises individuals to network, ask questions, and take initiative to build a solid foundation that will shape the rest of their careers. She recommends being a critical thinker but also being willing to suggest solutions and identify ways that you can contribute to making your experience and your center better. She also emphasizes the importance of prioritizing self-care so that you can reach your goals.

 

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Anna Merrill
Riley Child Development Center (IN)

Anna MerrillAnna Merrill graduated from Indiana University in 2017 with a PhD in school psychology.  While in graduate school she worked as a graduate assistant at the Indiana Institute on Disability and Community, the Indiana UCEDD. She recently completed her clinical internship in intellectual and developmental disabilities at Nationwide Children's Hospital in Columbus, Ohio and is now a clinical psychology postdoctoral fellow and LEND trainee at the Riley Child Development Center at Riley Hospital for Children in Indianapolis, Indiana. As a LEND trainee she works to complete clinical evaluations for children suspected of having neurodevelopmental disabilities. In addition, Anna participates in research and intervention services to support outcomes and social skills development for adolescents with autism spectrum disorder.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

At the Riley Child Development Center LEND program Anna is involved in interdisciplinary clinical evaluations and intervention to support families from across the state of Indiana who have children with neurodevelopmental disabilities. In addition, she participates in didactics around leadership, policy, and research with a cohort of LEND trainees from across Indiana. As part of attending the AUCD conference Anna particularly enjoyed having the opportunity of meeting with representatives from the state of Indiana to talk about the importance of the Indiana LEND's work and how best to support children with special health care needs in her state.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Anna's passion is working to understand how professionals can improve outcomes for children and adolescents with autism spectrum disorder. In particular, Anna has a passion for working with adolescents and their families as they transition from public school into post-secondary education or employment. Working with my current LEND program has helped Anna to expand my ideas about how I can do this beyond just one on one clinical work. As a leader, advocate, and educator, Anna has found that she can use her passion to help support policies, communities, and systems to increase positive outcomes for young adults with ASD. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)? 

Anna believes that learning to work with individuals from different disciplines and participating in leadership trainings and research projects has opened her eyes to the importance of collaboration with others beyond my field of psychology. She feels it has shaped her career as a young professional and her desire to continue to build those relationships with professionals outside of my field. 

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Yes, Anna feels that she has learned from working with and listening to self-advocates, and she feels that these partnerships have greatly impacted her ability to advocate for individuals with disabilities. In addition, she enjoyed the opportunity to learn about political advocacy by meeting with representatives from my state on the hill during the AUCD conference. Anna feels that there are so many different levels in which individuals can advocate for better outcomes for individuals with disabilities!

5. What advice do you have for individuals interested in joining a similar traineeship?

Anna's advice to individuals is to take advantage of all of the opportunities that will be presented to you to learn from those that have different backgrounds, and ideas. She notes that as professionals become specialized in their careers, it is rare to be able to spend so much time learning from such a diverse group. She recommended asking questions, engaging in debate, and getting to know one another. She emphasizes that the relationships formed are what will last beyond the training year.

 

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Andrea D'Achiardi
Center for Child Health and Development (KS)

Andrea D'AchiardiAndrea D'Achiardi is a school nurse at Mize Elementary. She joined the LEND program at the University of Kansas Medical Center this year because she was in medical school; however, Andrea was unfortunately unable to continue through medical school due to her own disabilities and the lack of accommodations from the school. Therefore, she has decided to make it her mission to ensure that no other student would have to endure the discrimination and challenges she faced in her own education. She decided to become a school nurse and advocate for students with disabilities to ensure that all the resources were provided through their education. She partnered with KU Center for Child Health & Development and the DeSoto School District in Kansas to educate teachers, staff, parents, and students about disabilities and the available resources within the community to provide early diagnosis and intervention for a better future.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Andrea has been observing in the CARE clinic for autism and the OASIS clinic for behavioral management. She has been observing the administration of the ADOS and subsequent diagnostic process of a team of healthcare professionals at the CARE clinic. At the Behavioral Support Clinic, she has been observing parent behavioral training sessions facilitated by a psychologist implementing the PRIDE technique. She has attended training on implementing the ADOS diagnostic tool. The LEND program director coordinated a day in which she and her cohort visited multiple organizations and state agencies to understand the services available to those with disabilities in the system. Andrea also gave a presentation for the entire staff at the elementary school regarding global developmental delay and autism. She is currently working on providing training and classes for staff at the elementary school to help address behavioral challenges in the classroom, social skills, and integration of all children with developmental disabilities into classroom activities. Finally, she plans provide families with the support to help their children at home and resources within the community to get support throughout their child's life.

2. Tell us about your passion and how your program/center and AUCD has enabled you to pursue your passion. How has your work been impacted by your experience at your center?

Andrea's passion was originally to become a physician and help thousands of families as a family physician. Since this dream was not able to become a reality, Andrea has shifted her focus to ensure that every student's dreams are attainable with the support of their community and their family. The LEND program at KUMC CCHD enabled Andrea to be able to learn about developmental disabilities in children, which was not taught in the first two years of fundamentals of medicine. The LEND program also enabled Andrea to be able to become a school nurse to help the children, while providing her with the financial support to flower a new dream that would not have been possible otherwise. Now, every day Andrea enjoys helping children with special needs and being able to make a child smile or make a child feel comfortable and not scared when they are sick. 

3. Do you think your traineeship has made you a better advocate for individuals with disabilities?

Most definitely! Speaking as an individual with disabilities, Andrea feels the traineeship has brought her hope to know that there are good people in the world that care and truly do want others to succeed. She enjoys being equipped with a vast amount of knowledge and resources so that if she does not know the answer immediately, she knows where to find it immediately.

4. What advice do you have for individuals interested in joining a similar traineeship?

Andrea's advice to other individuals is that you are your best advocate and becoming informed is the way to success. Therefore, she thinks everyone should be held to those same standards and become educated through the LEND program and many other similar programs, especially if they are going into a healthcare field. Andrea feels that because we all face different challenges and we must be understanding of each other in order to help each other. 

 

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Allie Hicks
Center for Child Health and Development (KS)

Allie HicksAllie Hicks is an occupational therapy student and LEND trainee at the University of Kansas Medical Center. She has a background in applied behavioral analysis and currently works with children on the autism spectrum. Allie has a passion for working with children and families that she will carry with into her career. She has been a part of feeding team, diagnostic clinic, community outreach activities, and developing a community-based research project with a classmate during her traineeship so far. She looks forward to continued community and clinical experiences within her program and region, as well as pursuing her community research project.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Allie's LEND experience has included clinical, community, and research-based opportunities. She spent around six weeks in the CCHD's feeding clinic. This team is composed of a dietician, an occupational therapist, and a behavior psychologist. The team works with families to address feeding issues or concerns, such as "picky eaters," children on tube feeding, sensory issues related to feeding, and behavioral concerns related to meal time. It's been incredible getting to see how the three disciplines come together to assist the family in addressing their feeding needs.

Allie's program also provided her with an opportunity to attend a county tour. This consisted of visiting four sites in the area: Johnson County Developmental Services, Astra Day School, Kansas City Children's Campus, and KVC. It was incredible to see a variety of settings that support individuals and families across the lifespan and across abilities. In terms of research, she is collaborating with another occupational therapy student to build a project. Together, they are conducting a community based participatory research (CPBR) project in the Kansas City area and in the tribal communities. Their primary age group is families with a child between the ages of birth and three. Allie and her collaborators want to assess families and health care providers regarding the use and awareness of resources and supports in the area. She and her collaborators have noticed that many resources are underused because families and providers are unaware, so the project is first seeking out why this happens (via a needs assessment). They then plan to take this information to develop an intervention or response that supports what the community identifies as a need. They are still in the early stages of developing our project, but are excited to have the opportunity to be developing a project that will hopefully have a greater impact on the community. Soon, Allie will be starting in the CARE clinic, one of the autism diagnostic clinics. 

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Allie is passionate about providing supports for children and families of all abilities. She believes that all children have the right to engage in play that promotes their development. She also believes families should have the access to resources necessary to support their family, each other, and their child's development. Allie feels being a part of the AUCD network has opened her eyes to how many resources are available for families. She feels it has supported her in learning how to become a better advocate and is assisting her in building knowledge of policy. Allie loves getting to work with children of all abilities. From a young age she knew she wanted to work with kids, but it just wasn't until high school that she feels she really honed in on occupational therapy. She believes she has been able to find a career that supports my passion and builds on my skills. Allie feels that discovering LEND has made pursuing her passion so much better. She enjoys being surrounded by a cohort of students, professionals, and individuals from a variety of backgrounds and fields who are all here to help each other grow. With LEND and her center, Allie feels almost anything has seemed possible. They've provided her with opportunities to see what feeding and diagnostic clinics look like. She has been able to work in the community with families and with children. She has been able to start a research project that promotes community resources for families and providers. Allie believes all of this has supported her growth as a professional while providing her with opportunities not only to pursue my passion, but also to how share it and learn from it.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Allie believes her LEND traineeship has definitely helped in shaping her career goals. She has always known that she wants to work with families and children, but she has not always known what that might look like for her. Allie believes LEND will support her in further defining what she wants her career to look like. Allie feels that completing her Logic Model has been one of her biggest supports. It forced her to really consider what she might want to be doing as far as 10 years down the road. While Allie's goals are still changing, she is confident in her desire to work with families and children. However, she enjoys that LEND has allowed her to consider working in a clinic, working in community-based practice, participating on a diagnostic team, being a researcher, and even experiencing different cultures. As Allie's traineeship progresses, she has set goals to build foundational leadership skills. She would like to lead discussions, work with teams, and explore new options for learning (i.e. webinars, online classes, experiential learning). As a student, Allie feels that she is still figuring out the specifics of how she wants her life to look, but she enjoys that her traineeship has provided her with opportunity to shape her path in order to become the best occupational therapist she can be.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Allie believes her traineeship will make her a better advocate. After experiencing one of her center's clinics, she feels she has learned a lot about what it means to be an advocate. She has learned that advocacy is not always about advocating for the individual or group. She believes that advocacy is empowering the individual, family, or group to advocate for themselves. By providing them with the support and tools necessary, she believes she is allowing them to build the skills they need.

5. What advice do you have for individuals interested in joining a similar traineeship?

The AUCD network and LEND traineeship are valuable resources that provide life-long learning and collaboration. Even as someone who is new to the network, Allie can see the connections and learning extending beyond her traineeship. Her advice to other trainees is to take advantage of any and every opportunity that is presented. Nothing is impossible when you are part of this network. While the time commitment may seem daunting, the learning and experiences relate back to your own goals and learning. As a student, Allie enjoys get to apply her learning from LEND to her program, and from her program to LEND.

 

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Gregoria Rosa-DiStefano
Human Development Center (LA)

Gregoria Rosa-DiStefanoGregoria was born in southern Spain to a large and loving multicultural family. While her mother is from Sicily and her father is from Puerto Rico, these vastly different cultures share the value of family. A determined and ambitious young lady, Gregoria has always held herself to high expectations. After graduating from high school in 2010, she took the first step towards her professional career by attending James Madison University. In the spring of 2014 she graduated with honors with a bachelor's degree in Health Sciences, and a double minor in Spanish and Italian. Gregoria received acceptance and started her masters of occupational therapy program at the Louisiana State University Health Sciences Center in New Orleans in 2016, and is on track to graduate in May 2018. Upon graduation, Gregoria plans to pursue a fulfilling career in occupational therapy.

 

1. What kind of work/opportunities have you been involved in during you program/center experience?

Gregoria believes her program's weekly topics classes and monthly leadership seminars give her great insight into how to become a more competent health professional and a strong, understanding leader. Gregoria has had the opportunity to attend a genetics lab, be a critical part of a real autism diagnostic team, and experience a day at a NICU. Moreover, they frequently have guest lecturers who are top academics and professionals in their field. Gregoria enjoys these speakers for the wisdom they give to trainees on topics that may not be a prominent part of what trainees may hear or learn in their own respective programs. Two examples that rapidly come to Gregoria's mind are having the privilege of a congressmen coming to speak to our class during a leadership seminar. However, the speaker that resonated with Gregoria the most was Al Condoluci, who came and spoke to the class about his work on social capital and how significant it is to one's health and quality of life.

2. Tell us about your passion and how your program/center and AUCD has enabled you to pursue your passion.

Right before entering the LEND program Gregoria found herself questioning if she was still fervent about the passions she thought she had throughout her whole life. Certain experiences left Gregoria doubting something that seemed so absolute to her, and she feels it affected her mentality and perception of herself. Along with some meditation and personal reflection, Gregoria feels her LEND program exposed her to important topics and discussions that she had not previously been exposed to. However, more importantly, Gregoria found those topics interesting, and they awakened a newfound passion. At the AUCD conference, she met Susan Kahan, who inspired Gregoria to initiate a program in New Orleans dedicated to mental health in the disability population as she had done in Illinois. As an individual coming from a multi-cultural background, Gregoria found lectures on social determinants of health and how these affect life trajectory to be particularly meaningful. These concepts enlightened Gregoria to the social injustices that she has observed even with her own family. The ardent passion Gregoria once had began to return, and she felt that she had found a direction and purpose to strive towards. Learning these concepts gave new meaning to what Gregoria's ambitions and legacies would be. AUCD has given Gregoria the opportunity to engage with passionate professionals from around the nation in hopes of fostering similar goals. From participating in the Conference, Gregoria feels as though her batteries have been recharged in the fight for inclusion, equality, and justice for all.

3. How has your work been impacted by your experience at your program/center (i.e., has it shaped your career path and/or goals?)

Gregoria feels no doubt that her future career has been impacted by the LEND program. She hopes to incorporate all of the skills, resources, and networks she has gained into her professional practice. Gregoria often finds herself reporting what she has learned in her traineeship back to her colleagues in her master's program. Topics discussed in her LEND program such as social capital, life trajectory, adverse childhood experiences, and many others will be instrumental in the future of her clinical practice. Gregoria believes that many times programs perseverate on the specialties of their profession alone. However, the interdisciplinary classroom setting teaches concepts in a general sense, allowing individuals to internalize these important concepts and reflect on how they can be best utilized for their specific practice.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Gregoria believes that her traineeship has, without question, made her a better advocate for individuals with disabilities. First, she is constantly learning information about various topics regarding the disability realm in their weekly meetings. She believes the monthly leadership seminars allow her to better internalize what it takes to become a good leader to skillfully and effectively promote this information. She enjoys having self-advocates as a part of the class because they frequently discuss experiences and issues that are relevant to them. Gregoria feels this first-hand account provides perspective about what is important to them as her colleagues, and how that may be different from her perception as a health professional. Moreover, having experiences such as the AUCD conference allows ambitious leaders to connect and together bring their missions to the forefront.

5. What advice do you have for individuals interested in joining a similar traineeship?

For individuals interested in joining a similar traineeship, Gregoria would strongly encourage them to do so! Although the program requires a lot of time, effort, and work, the result that comes from the opportunities and knowledge afforded to trainees is invaluable. Through the LEND fellowship, Gregoria feels she has been able to kinesthetically learn skills through hands on training sessions, that many times are only discussed in master's programs. For example, in school they learn about different evaluations and the diagnostic process.  However, in the LEND program, Gregoria had the opportunity to join a physician, speech therapist, social worker, and residents in evaluating, discussing, diagnosing a thirteen year old girl with autism. The small program size promotes invigorating class discussions, which Gregoria feels enhances her perspective and causes her to challenge her own views and preconceptions. Besides urging people to take the courageous plunge and join a traineeship, Gregoria would also advise individuals interested in joining to take charge of their own experience and be present for all opportunities; be prepared, accept all opportunities presented to you, and participate reflectively.

 

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Emily Milligan-Thompson
MI-LEND (MI)

Emily Milligan-ThompsonEmily Milligan-Thompson earned her B.A. in Social Relations and Policy from Michigan State University in 2014. She completed her Masters in Educational Evaluations and Research at Wayne State University, where she also serves as the Dissemination and Data Coordinator for the Michigan Developmental Disabilities Institute. She is a trainee in the Michigan Leadership Education in Neurodevelopmental and Related Disabilities (MI-LEND) program. Emily plans to pursue a doctoral degree and eventually hopes to work as an interdisciplinary educational evaluator. Growing up, Emily spent a lot of times at her mother's occupational therapy business, which provided transitional living facilities to individuals with traumatic brain and spinal cord injuries and assisted individuals in regaining their abilities to walk independently. Her passions include utilizing quantitative data to improve educational outcomes for students with disabilities and exploring craft breweries around Michigan.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As a MI-LEND trainee, Emily is able to connect with other graduate level students and faculty members from 6 different universities within Michigan. Emily believes the MI-LEND program has given her numerous opportunities to learn more about how various health science disciplines evaluate patients and implement strategies for treatment. Emily was able to attend an Interprofessional Clinical Practice training for Autism Spectrum Disorders (ASD) through University Pediatricians Autism Center. She was also able to observe a multidisciplinary team evaluation. Emily's involvement in the program has given her the opportunity to participate in the observation of an Audiology evaluation at the University of Michigan's Audiology Clinic at Mott Children's hospital. In addition to the experiences Emily has had within clinical settings, she believes the MI-LEND program has provided her with several meaningful family and community experiences. Through MI-LEND's partnership with the Michigan Family Center, which is the statewide parent-directed center within Children's Special Health Care Services (CSHCS), Emily will be matched with a family from the center and will have the opportunity to accompany them during some of their day-to-day activities. Before the end of her time as a trainee, Emily also plans on volunteering to work with families and children that may have been affected by the recent water crisis at Hurley Medical Center in Flint, Michigan.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Emily has a variety of interests and passions that range from improving outcomes for individuals with disabilities through utilizing data analysis, to promoting access to inclusive swim programs and knowledge of water safety, to ensuring the rights of individuals with disabilities within the criminal justice system. Throughout Emily's time as a MI-LEND trainee, she has been encouraged by her mentor and faculty members to pursue all of her passions and to continually acquire new knowledge and skills. For Emily's MI-LEND Family Resource project she utilized her coding skills to create a mobile app which provides resources for students with disabilities transitioning to a college or university. Emily has also begun to work on her final trainee project, which is a collaboration with another MI-LEND trainee. Their final project will include creating and teaching inclusive swim lessons for children ages 6 and under. Lastly, during the remainder of Emily's time as a MI-LEND trainee, she plans on using another MI-LEND project to pursue my passion for re-configuring data in ways that reveal trends, raise issues, and identify opportunities. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

In her future career, Emily would like to utilize quantitative data analysis to increase access and improve outcomes for individuals with disabilities. Studies have shown that the most effective evaluations of programs and policy are done using interdisciplinary practices, and the experiences Emily has had within the MI-LEND program has given her a better understanding of how different disciplines evaluate and measure outcomes. Additionally, the knowledge and skills that she has learned from her fellow MI-LEND trainees has felt invaluable to her. Emily intends to maintain the connections that she has made with her cohort throughout her career. Emily is confident that the MI-LEND training program has enhanced her leadership skills and taught her strategies that she can use to more effectively implement interdisciplinary practices throughout her career.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Emily believes that her traineeship within the MI-LEND program has made her a better advocate for individuals with disabilities because it has taught her that when individuals are not enabled to make their unique contributions, the community suffers an irreversible loss. The MI-LEND program has exposed Emily to the challenges individuals with disabilities and their families face throughout urban and rural areas of the state. Emily believes it has also taught her that professionals from every discipline can play a critical role in promoting equity and advocating for more inclusive practices for these individuals. Emily's traineeship has increased her passion for helping to promote inclusive environments for individuals with disabilities and their families. 

5. What advice do you have for individuals interested in joining a similar traineeship?

The top five pieces of advice Emily would give to any individual interested in pursuing a LEND or UCEDD traineeship would be:

1)  Discover new ways to use your unique talents.
2)  Embrace the opportunities you are given to learn more about disciplines you are unfamiliar with.
3)  Remember that personal development will help you move toward your goals.
4)  Collaborate with and learn from your fellow trainees.
5)  Find ways to use the knowledge and skills that you've obtained during your program to pursue your passions.

 

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Jae Han
MI-LEND (MI)

Jae HanJae is a trainee of the Michigan LEND program and a third-year dental student at the University of Michigan. He was diagnosed with Tourette's Syndrome at the age of 6, and again at 25. As a person with a neurodevelopmental disorder (NDD), Jae knows the influence even a mild scale of NDD can have on an adolescent. He also understand the significance of roles that educators and care providers can play in the development of children with special needs. Through LEND, he has been building a knowledge base and training in patience to prevent mistakes and compassion fatigue in order to learn how best to care for children with NDD and families with delicate needs. The LEND program gives Jae the tools and resources for his growth as a clinician, and he is committed to making it his responsibility to do right by the children that deserve equal treatment and love.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As part of the LEND program, Jae has regular encounters with multidisciplinary cohort of trainees (neuroscience, audiology, speech and language, dietetics, rehab counseling, dentistry, nursing, audiology, education, medicine, evaluation research, psychology, occupational therapy, and more) and their mentors via virtual and physical meetings. Prior to each encounter, the trainees do our due diligence on the topic and objectives of the module by reading various literatures, watching lectures by content experts, and engaging in group activities with co-trainees. We then collectively learn from multidisciplinary input on any given topic of discussion regarding care for neurodevelopment disabilities.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Jae's passion in special needs care stems from deeply rooted personal and professional concerns. While Jae only has vague ideas about what he wants to resemble as a clinician, parent, husband, friend, and an individual, he has a very clear vision of the character that he does not wish to embody. This clarity has motivated Jae to go out of his comfort zone and acquire flexibility and skills necessary for addressing special needs not only as a seasoned clinician, but also as an individual who understands the perspectives of the child and family. One such avenue of education has been the LEND program and offerings from AUCD.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Having resources at their disposal helps clinicians to improve accessibility to care for any target population. Jae believes the biggest gain from being part of the LEND program has been that he has vastly expanded his knowledge of available resources on both local and national levels. By the virtue of knowing, LEND has motivated Jae to not only deepen his understanding and awareness of such resources, but also find ways to help them to more effectively reach the patients and families. For instance, families regularly seek informational resources from health professionals on issues related to parenting a child with developmental disabilities and other special health care needs, particularly when new concerns emerge. At MI-LEND, Jae had the opportunity to work with co-trainees and mentors on developing a family resource project where he explored, evaluated, and combined on- and off-line resources for use by families. Currently, Jae is working on making his project available for the general public.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Absolutely. In order to appropriately treat individuals with disabilities, conscious efforts must be made to be knowledgeable, remove biases, learn to anticipate and combat compassion fatigue, and more. Jae believes the LEND program has helped him to recognize his strengths and weaknesses, and as a result he feels more strongly about advocating for individuals with disabilities.

5. What advice do you have for individuals interested in joining a similar traineeship?

Jae's advice is that intentions can be misunderstood, compassion can be exhausted, and practical concerns can get in the way of caring for individuals with disabilities. However, he believes that education can remedy our imperfect human nature, ignorance, and any potential insensitivity. As you grow your interest in a training program, it is important to be completely honest about your motives for wanting to partake in special needs care and education, and be true to the level of commitment you want to show. This journey can be enjoyable for some, but taxing for others. While it is optional for some people, others never had a choice. As long as you choose to engage in your training, Jae recommends that you do so fully with an open mind and will to actively participate.

 

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Pang Chaxiong (Paj Xyooj)
MN-LEND (MN)

Pang Chaxiong (Paj Xyooj)As a sibling of a brother with autism from a Hmong immigrant family, Pang's research interest surrounds the intersection of culture and autism, particularly how culture influences autism diagnoses, treatment decisions, and access to resources. Pang has a passion for promoting early identification and intervention in families from culturally and linguistically diverse backgrounds.

As a LEND fellow, Pang is working with Minnesota Learn the Signs Act Early to promote early identification and intervention for individuals with autism spectrum disorder from diverse communities. Pang is especially interested in working alongside the Hmong and Somali communities in Minnesota.

Outside of LEND, Pang is conducting a survey to examine parent perceptions regarding causes and treatments of autism. She is also a graduate research assistant on a project looking at Hmong language development to develop a survey that can gauge the early literacy and language of Hmong preschool-aged children.

Pang received her BA in Psychology at the University of Wisconsin - Madison. Currently, she is a graduate student pursuing her Masters and Ph.D. in Special Education.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As a LEND fellow, Pang has received the great opportunity to do clinic rotations at their university's Autism and Neurodevelopmental Clinic.  She has also enjoyed receiving the inside scoop to attend talks or events related to autism and other neurodevelopmental disabilities.  Pang has also been able to begin her work on promoting early identification and intervention of autism by partnering with the Minnesota Act Early project.

2.  Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Pang's passion is to promote early identification and intervention in children with autism from culturally and linguistically diverse backgrounds.  LEND has provided Pang with the opportunity to begin pursuing this passion by pairing her with a mentor who is doing something similar.  Pang is partnering with her mentor's project, MN Act Early, to reach out to the Hmong and Somali communities. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Pang believes LEND has really expanded her understanding of autism and neurodevelopmental disabilities.  Learning about the topic from an interdisciplinary approach has been incredible.  The LEND staff are also supportive and resourceful.  Through LEND, Pang feels like she has been connected to a community of scholars and professionals and has received the inside scoop on cutting edge research in this field. 

4. What advice do you have for individuals interested in joining a similar traineeship?

Pang's advice is to be ready to learn and seize the opportunities that become available to you through your traineeship.  Specifically, she recommends exploring the resources, articles, events and research that are sent your way.  You may find an article that is especially relevant to your topic or another researcher who is doing work similar to yours.  Ask questions, and take advantage of the network that is available to you.

 

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Alyssa Danielle Parks
Partners for Inclusive Communities (MS)

Alyssa Danielle ParksAlyssa Danielle Parks, BSW, MSW Student, LEND Trainee currently serves as the Masters of Social Work LEND Trainee at the Institute for Disability Studies (IDS), a University Center for Excellence in Developmental Disabilities at The University of Southern Mississippi (USM).

Danielle is the first ever 2nd year LEND Trainee to represent IDS. Danielle received her bachelor's degree in Social Work from The University of Southern Mississippi and graduated with the honor of being part of the Social Work Honor Society Phi Alpha.  During her time at IDS, Danielle has gained opportunities to work closely with youth and young adults with disabilities; assist in a diversity grant initiative Project GOLD; be the Trainee Liaison; and assist with a proposal to develop the first postsecondary program for people with intellectual disabilities at USM. Danielle looks forward to using her experiences at IDS and in the MSW Program as a stepping stone of achieving her dreams to future work in the disability community with a focus on serving children with life threatening illnesses and their families.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

During Danielle's first year at the Institute for Disability Studies (IDS), she was balancing several different roles: Graduate Assistant, LEND Trainee, and Social Work Intern. As a Graduate Assistant, Danielle worked with people who were homeless by getting them short-term housing and then exploring long-term housing opportunities.  As a LEND Trainee and Social Work Intern, Danielle had the opportunity to mentor IDS' first LEND Self-Advocate Trainee and assist him with some of his projects; to write a mini-grant for a driving education program for young people with disabilities; to become part of their inclusive student organization, the STEP UP Council, and assist with the implementation of a diversity grant initiative titled Project GOLD to prepare young adults with and without disabilities for transition into adulthood; and to represent as the Trainee Liaison.

During Danielle's second year at IDS, she has been given the opportunity to gain a lot more clinical experience by assisting with a socialization group with The University of Southern Mississippi's (USM) Psychology Department. Also, she is still a member of the STEP UP Council and has been assisting several of the young leaders with disabilities with their video projects. She has taken on a new opportunity of helping develop a grant with my Supervisor Dr. Jerry R. Alliston and our Executive Director Dr. Rebekah Young to start a postsecondary program for people with intellectual disabilities at USM.   

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

When Danielle was in high school, her school helped grant the wishes for several children through the Make-A-Wish Foundation. Ever since then, Danielle's passion has been to help children with life threatening illnesses. Danielle's time at the Institute for Disability Studies has given her the opportunity to pursue that passion in a way I never realized. People with disabilities are often defined by the disability that they have. Her experiences have helped her to see that a disability does not define the person.  People can achieve anything that they put their mind to . . . whether it is taking college courses, getting a job, or making an impact in their community.  This does apply to children with life threatening illnesses as their illnesses do not define them.  I want to help these children discover their passion and purpose. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Ever since high school, Danielle has had a passion to work with children with life threatening illnesses and their families.  This work is certainly her future plan for a career in social work and she has learned that she needs her clinical license to obtain that dream job.  While she plans to pursue her clinical license, Danielle is now also considering other possibilities and passions.  Her LEND traineeship and other experiences at the Institute for Disability Studies have allowed Danielle to develop a new passion for working with young people with disabilities. It has been very rewarding to see these young people achieve their dreams and make a difference in their community. Danielle sees these experiences as stepping stones to future potential work in the disability community as she gains more social work experience on her journey to her dream job.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Danielle would like to be honest and admit that before she became a trainee at The Institute for Disability Studies, she never really interacted with people with disabilities. Danielle used to be uncomfortable to even approach people with disabilities. She feels that her time as a LEND trainee has completely changed my outlook on what it means to have a disability. She now looks at a disability as being an ability instead of something that prohibits people from doing certain tasks or achieving their dreams. She now wants to take the time to get to know people with disabilities just like if she wanted to get to know anybody else. This has allowed her to see that people with disabilities can achieve anything they set their minds to, whether it is attending college, getting a job, or making videos to share their passions in life.  All of her trainee experiences have taught her how be an advocate for people with disabilities.

5. What advice do you have for individuals interested in joining a similar traineeship?

Danielle would tell future trainees to not be afraid to step out of your comfort zone. Being a LEND trainee has given Danielle many opportunities that have pushed her outside of her comfort zone. She used to be afraid to even have a simple conversation with people with disabilities. Now, she cannot stop talking to them and developed so many friendships.  Danielle feels that she was pushed out of her comfort zone from the very beginning, and it has allowed her to grow into a better and stronger person.   

 

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Heather Alico Lauria
Carolina Institute for Developmental Disabilities (NC)

Heather Alico LauriaHeather Alico Lauria is a Registered Nurse (RN) and Doctorate in Nursing Practice (DNP) Family Nurse Practitioner student at the University of North Carolina-Chapel Hill.  She is a Leadership and Education in Neurodevelopmental Disabilities fellow at the Carolina Institute for Developmental Disabilities.  She received her previous degrees in Brain and Cognitive Sciences and Nursing from the University of Rochester. 

She has worked in a variety of settings with individuals with disabilities including a post-graduate classroom for individuals with special needs. In this classroom, she helped students to transition from high school to their community through job placements and continuing education.

As a RN, she works in Neurology and Neurosurgery, caring for individuals with a variety of neurological diagnoses such as traumatic brain injury and epilepsy.  For her DNP project, she is implementing a health promotion program for teenagers and young adults with Down Syndrome at her local Down Syndrome network.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As part of Heather's LEND fellowship, she has been able to grow as a leader through the Maternal Child Health leadership consortium.  Heather has spent time participating in interactive workshops to discuss cultural competency, difficult conversations and interdisciplinary relationships.  Additionally, Heather believes her knowledge of the DD community has developed greatly from bi-weekly lectures on parent perspectives, etiology of genetic disorders and special education decision-making.  Furthermore, Heather has had the ongoing opportunity to observe and interact in the clinical setting with children with DD for evaluations, intake appointments and medication management.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Heather has numerous passions within her career as a nurse working with individuals with DD.  She is passionate about nutrition and physical activity and how these factors can positively or negatively impact behavior.  Through her clinical experience at the Carolina Institute for Developmental Disabilities, Heather has been able to work with a provider who practices with both a medical and psychiatric approach to behavioral management of individuals with DD.  Heather also believes in a family-centered approach to care and interdisciplinary teamwork.  Her experience in the LEND fellowship has emphasized team based care by working and learning with school psychologists, occupational/physical therapists, parents and self-advocates.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Heather believes her experience with LEND has continued to help shape her career goals.  As a future Family Nurse Practitioner, she plans to work with children and adults to provide preventive health care.  Because of her experience in LEND, Heather wants to continue to work with individuals with DD in community settings to advocate and provide health promotion education.  Heather has been encouraged by her LEND faculty to work toward a nursing certificate in Developmental Disabilities which will further prepare her to work as a Nurse Practitioner with the DD population.  For Heather's Doctorate in Nursing Practice project, she is implementing a health promotion program for teenagers and young adults with Down syndrome.  The 6-week program will focus on nutrition, exercise and independent health choices for the participants.  Heather has recruited an interdisciplinary team to volunteer and assist with the program.  She feels the confidence and knowledge gained through her LEND experience has shaped the implementation of her DNP project.  Heather looks forward to sharing her project experience with her program/center.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Heather's traineeship has absolutely made her a better advocate for individuals with disabilities.  She has had the opportunity to shadow a DD public policy professional as well as receive funding to attend a disability policy seminar in D.C.   Overall, LEND has made Heather more passionate about advocacy, and it continues to show her the ways in which she can have a noticeable impact on DD public policy.

5. What advice do you have for individuals interested in joining a similar traineeship?

Heather's advice is that if you are interested in joining, JOIN!  There are so many wonderful opportunities to work with individuals of other disciplines and to become more well rounded in your own discipline.  She emphasizes that the AUCD network and associated traineeships are engaged in your learning and your growth.  According to Heather, best of all is getting to work with and learn from individuals with DD, which is fulfilling and unifying. 

 

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Lauren Arceneaux
Munroe-Meyer Institue for Genetics and Rehabilitation (NE)

Lauren ArceneauxLauren Arceneaux is a pediatric physical therapy resident at the Munroe-Meyer Institute and a post-doctoral fellow in the LEND program in Omaha, Nebraska. As a pediatric physical therapist, Lauren often has the opportunity to care for individuals with developmental disabilities and their families. As a child and young adult, Lauren's mother worked as a paraprofessional with students with special needs and she volunteered during various events with Special Olympics. Now, as a professional, learning more about how to serve families in the context of a leadership program challenges Lauren to identify her own biases and grow in her ability to provide family-centered care. 

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As a LEND trainee, Lauren participates in weekly seminars with an interprofessional cohort, where they learn about a variety of topics from experts in the field. Lauren frequently engages with parents of individuals with disabilities and learns about their experiences and how she can best provide care for other families as a PT.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Before Lauren entered physical therapy school, she knew that she wanted to work with children. As a resident and post-doctoral fellow in the LEND program, Lauren is able to pursue her dream. She feels she is building a foundation on which to launch the rest of her career.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

As a new pediatric physical therapist, Lauren feels that she can fall into the trap of focusing on the child's impairments. LEND helps Lauren escape that mindset and focus on the child and family's strengths.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Without the LEND program, Lauren likely would not have attended events like Disability Legislative Advocacy Day, or have had the opportunity to speak with a parent panel about how disability is viewed in different cultures. The knowledge of others' experiences has empowered Lauren to look beyond her own struggles and even the struggles of her patients to a wider community of individuals who need an advocate.

5. What advice do you have for individuals interested in joining a similar traineeship?

Through readings and discussions, Lauren learned more about where her own biases lie and how to approach her role as a physical therapist in a way that most appropriately serves the family. Her advice is that whatever role you play in your community, more people need to learn how to advocate and care for individuals with special needs and their families.

 

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Jessie Poquérusse
NH-LEND (NH)

Jessie PocquérusseJessie Poquérusse's academic background is in neuroscience, she is broadly interested in and dedicated to a wide range of fields related to developmental disabilities, including research, direct hands-on support programs, and policy work. Jessie has conducted research in developmental neurobiology, neurogenetics and psychology, all targeting various aspects of theoretical and goal-driven neuroscience, including how the brain develops, and how best to design and implement programs to improve the lives of individuals with disabilities. Out in Colorado and British Columbia, Jessie's experiences as a rock climbing instructor, skiing instructor and program manager at various centers/camps for individuals with autism has helped hone her ideas of what would be the most tractable research questions to pursue. Participating in the NH LEND program provided the third pillar to this triad, lighting the policy spark which Jessie sees as an effective item of long-term, sustainable change hopefully alongside the research and outdoors/athletic programs.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Jessie has been involved in various clinical rotations at the University of New Hampshire-affiliated disability center in Durham, NH. There, she worked with an interdisciplinary team (including speech & language pathologists, occupational therapists, physical therapists, physicians, social workers) to meet with families and deliver any relevant diagnoses and inter-disciplinary treatment plans, both in a clinical setting and at families' homes. In parallel, she completed a project at New Hampshire's Institute on Disability, working to develop a data-driven report on the current state of inequity at the intersection of disability and mental health. The final major - and most significant - opportunity was developing a policy brief with her team of co-trainees to present to NH congressional delegates in Washington, DC, alongside attending and learning from the Disability Policy Seminar there.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Jessie feels very strongly about the necessity of fully embracing neurodiversity and integrating all types of minds fully and seamlessly into the social fabric. She thinks the implications have the potential to be global.  The benefits are societal and financial, but also moral, because social neurodiversity will improve the lives of children and families.

At an intellectual level, Jessie is absolutely fascinated by how the interaction of biological differences at various scales - from the molecular (specific genetic mutations) to society and the global environment (chemical exposures) - can come together to produce the autistic phenotype. Jessie is also very interested in how, without immediate answers to these questions, we can keep developing and utilizing the most effective tools possible to help affected children. Jessie believes it is a two-way street, and she is also interested in ways to develop individualized programs in academic settings that would tailor education to the variety of different minds (including emotional education, capitalizing on systemizing and/or synesthetic patterns of thinking and perception, etc).

Jessie believes the LEND NH program helped her reflect on and make her lofty, theoretical ideas more actionable, not only by introducing her to the landscape of change (especially in the realm of policy work and advocacy, which was entirely new to her), but also in the realm of holistic clinical and non-clinical care, by equipping her with the concrete tools to incur the change. For example, Jessie now understands not only that it is possible to, but how she can take her research to delegates in DC. Another example is that Jessie now understands what  different types of inter-disciplinary therapists actually do, and she has a network of such individuals to reach out and ask questions to and collaborate with. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

The core nature of Jessie's work has not changed, but its breadth - and her conviction in it - has been impacted by her experience at the NH LEND program.

Before starting the program, Jessie believes she was a lot more idealistic and flexible in her visions, and while she retains that same sense of idealism, she likes to think it is more firmly rooted in realistic optimism. Jessie feels better equipped now, and is certainly a more vocal, deliberate advocate.

While Jessie is still pursuing research in autism - she is fascinated by how autism arises and hopeful to bring the findings of her research to help families - she feels better able to see the big picture and is constantly asking herself how she can best use her time to maximize the benefits of her work. In addition, Jessie believes the faces and stories of her fellow trainees who have a family member with a neurodevelopmental disability will remain at the forefront of her mind and motivation to pursue her career.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

While Jessie's traineeship confirmed her commitment to disability advocacy, it indeed went beyond that in definitely making her a more effective advocate for individuals with disabilities.

On a personal level, Jessie believes the traineeship gave her more confidence to speak up both in her daily life and in her career objectives (e.g. having the audacity to expect positive change). Jessie feels that knowing at a psychological level that she is part of a larger, real movement is very empowering, and having the LEND and AUCD network at her fingertips - including some fantastic friendships stemming from both - makes her feel more secure in her  advocacy work.

On a practical level, as previously mentioned, Jessie feels better versed in the actual tools that can help her achieve increasingly specific goals. For example, she now talks about her research in approachable terms, and she has clear ideas for how to incorporate its findings into actionable systems, such as increasing understanding among educators of the role of alexithymia and its complex relationship to emotions in autism, while hopefully collaborating on ways in which this can improve the effectiveness of their educational experience. 

5. What advice do you have for individuals interested in joining a similar traineeship?

Jessie's advice would be to do your best to abate your inhibitions and shift the focus 100% towards the children and families we are here together to serve. She thinks this is particularly important advice in a (Western) world so driven by egotism and personal achievement - even in altruistic pursuits such as disability advocacy, she sees this getting in the way on a regular basis.

Jessie's second piece of advice would be to refrain from engagement in all-or-none thinking (and this goes for life as well). Your plan for change doesn't have to be perfect - as long as you're helping one person, you've succeeded. Linked to this approach, Jessie would recommend remembering to constantly blend both systemic and immediate change into your endeavors, because that will make for the most powerful plan of attack.

 

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Katherine (Kat) Isaacson Elwell
University of New Mexico (NM)

Katherine (Kat) Isaacson ElwellKatherine (Kat) Isaacson Elwell is a licensed Apprentice Speech-Language Pathologist in New Mexico, and a graduate student pursuing her Master of Science degree in Speech-Language Pathology at the University of New Mexico (UNM). She holds a Bachelor of Arts degree in English from University of California, Davis. She works at the UNM Center for Development & Disability (CDD) with Partners for Employment (PFE), a statewide collaborative that increases competitive and integrated employment for individuals with intellectual and developmental disabilities. Her work with PFE includes assisting with training, technical assistance, and opportunities for networking and collaboration provided to state agencies, provider agencies, employers, educators, family members, and self-advocates. Kat recently completed New Mexico's LEND program and Partners in Policymaking program. She is a military spouse originally from California, a family advocate for her young daughter who is diagnosed with generalized Epilepsy, and an active member of their local Epilepsy support and education services group.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Kat works at the UNM Center for Development & Disability (an AUCD UCEDD) with Partners for Employment (PFE), a statewide collaborative that increases competitive and integrated employment for individuals with intellectual and developmental disabilities. This past year she co-facilitated PFE's Job Information Networking Group, a series of monthly workshops designed to share effective employment strategies and resources with young job seekers who are post-transition. She also received the opportunity to assist participants with personalized communication strategies for seeking employment based upon their specific diagnoses. Kat previously worked for the UNM CDD's Early Childhood Learning Network, during which time she designed and edited the New Mexico Guide for Inclusion: Birth-5, a public access document which provides early intervention inclusion strategies for parents, educators, schools, and agencies. As an employee with the UNM CDD, Kat recently completed the New Mexico LEND program, and the New Mexico Partners in Policymaking program.   

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Kat became passionate about working with persons with I/DD after becoming a military spouse in 2009. Kat and her family were stationed at Fort Drum, NY, 2009-2013, where the brigades have an intense deployment cycle. It was hugely impactful to experience their veterans returning from deployment with lifelong injuries, impairments, disabilities, and mental health challenges. During that time, Kat was directly and heavily involved with caring for families as a volunteer for Ft. Drum's USO and their unit's CARE team, a family readiness group leader, and an officer with the Ft. Drum's spouses' club. Kat was also a public school substitute teacher during that time, often working in special education classrooms, particularly with military children on the Autism spectrum. When Kat and her family moved to New Mexico in 2013, working at the UNM CDD seemed like a natural transition, providing her with broader exposure to the world of disability advocacy, particularly with I/DD, and allowing her to explore this passion further. Working with UNM CDD programs that span early childhood to adolescence led to Kat's interest in becoming an SLP, completing LEND and Partners in Policymaking, and eventually led to her intense interest in developing a communications-based curriculum for students with disabilities and promoting a leadership role for SLPs during school-to-work transition. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

When Kat entered her graduate program, she knew she wanted to work in the public schools but beyond that, she hadn't identified any specific interests. Working with PFE revealed a need for increased focus on communication and pragmatics skills that prepare high school students to transition to paid employment upon graduation and create long-term employment outcomes that lead to independent living, financial security, and relationship success. Kat recognized this gap could be filled by SLPs and provides a leadership role opportunity for them to lead the school-to-work transition process for students with I/DD. Working with PFE has also provided Kat with the opportunity to successfully pilot my curriculum and leadership role locally, with the goal of replicating the program in more locations. Kat's intention is that this work will allow her to complete a thesis for her graduate program. 

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

One of the most impactful ideas Kat walked away with after LEND was the understanding and commitment that she would spend the rest of her professional career learning from family members and self-advocates. Some of the most insightful and humbling moments as a trainee came during discussions where family members provided more depth and insight into issues than she could ever hope to gain professionally. LEND helped Kat realize that as a professional, she will promote self-determination and strive to empower her clients and their families to make their best, most informed choices possible. 

5. What advice do you have for individuals interested in joining a similar traineeship?

Kat feels that it is okay to enter a training program without a specific interest or passion, and without a specific idea of what you want to get out of it. She emphasizes that there will be so many unexpected impactful moments, and that it is best to remain open and absorb all experiences and information. She recommends that trainees identify capstone/research project topics and mentors early on, as soon as program acceptance is received. She feels that trainees should bring their perspective forward during discussion but be open to learning from others. She advises, "Be open, be thoughtful, be honest, and be ready to grow. Make as many connections as possible during training, and consciously think about how you can contribute a positive, lasting impact on your cohort."

 

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Valerie Smith
Strong Center for Developmental Disabilities (NY)

Valerie SmithValerie serves as a Health Project Coordinator at the Strong Center for Developmental Disabilities, UCEDD, at the University of Rochester Medical Center.

Valerie's responsibilities include the development and implementation of community education and technical assistance activities delivered through the Rochester Regional Center for Autism Spectrum Disorder (RRCASD). She also coordinates the UCEDD's involvement in the New York State Systemic Improvement Plan (SSIP) and previously coordinated the Child-Well Being Program aimed to ensure the use of person-centered planning in the foster care system throughout New York State.

Valerie earned a Master of Science degree in Human Development and Applied Behavior Analysis from the Warner School of Education, University of Rochester. She also holds a Bachelor of Science degree in Psychology with a minor in women and gender studies. Currently, Valerie is an education trainee in the Leadership Education in Neurodevelopmental Disabilities (LEND) Program and pursuing her Board Certification in Behavior Analysis.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Valerie's role at the UCEDD and within LEND allows her to pursue valuable relationships with individuals with disabilities, families, and various providers/ professionals. Throughout Valerie's involvement, she feels she has been provided ongoing opportunity for collaboration aimed to identify and troubleshoot needs in the community.

For example, Valerie has been able to develop and deliver various trainings surrounding behavioral supports in employment and community settings as well as to highlight the benefits of inclusive recreation and leisure in a video campaign. Additionally, Valerie has been able to pilot a Job Club that provides a network for social and technical support for individuals with ASD and promotes the development of skills necessary for finding and maintaining employment. Furthermore, as co-chair of a regional conference, Valerie is able to collaborate with self-advocates and community members to carry out an extensive event focused on inclusion and community connections.  

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Valerie feels AUCD has allowed her to work and live what she believes. It has enabled her to explore social justice and pair her training with her commitment to community relationships. Valerie believes AUCD has supported her in approaching her passion with humility and reflecting outside her comfort zone.

As an education LEND trainee, Valerie feels her program has allowed her to further her interdisciplinary training and expand her scope of practice, foster relationships with members of our community, and advance her role in disability policy at the local, state, and federal levels. The program has also served as a platform in understanding the many settings and populations in which behavioral interventions can be strategically implemented and capacity can be significantly strengthened.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Valerie's experience in LEND and the UCEDD has confirmed her passion for diversity and excites her to continue engaging in her community while working with multidisciplinary teams. It has shaped her career path by introducing her to new areas of advocacy, including health, employment, and educational contexts. Valerie has also had the opportunity to gain a better understanding of systems change and she feels excited to explore more about the intersectionality of disability.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Valerie's traineeship has allowed her to partner with individuals with disabilities, and it has also given her the opportunity to form long-term relationships with individuals across the community. These personal connections are what teach Valerie how to better advocate for civil rights and learn more everyday how to be a better change-maker. Valerie feels extremely grateful for her involvement in the AUCD network and its influence on her long-term personal and professional development.

5. What advice do you have for individuals interested in joining a similar traineeship?

Valerie has found extreme value in being part of the AUCD Network as a trainee and staff member. For individuals interested in becoming involved in LEND or a UCEDD, she would suggest to utilize the network as much as possible by asking questions, exploring opportunities for collaboration, or perhaps shadowing someone to learn more about their particular role. Since trainees have the opportunity to connect with all programs/centers across the nation, their experience is structured in a way that promotes sustainable networking and unique growth. 

 

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Emily Jones
LEND Program at Cincinnati Children's Hospital and the University of Cincinnati (OH)

Emily JonesEmily Jones earned her Masters of Science in Psychology at Lipscomb University and her Masters of Education in Child Studies from Vanderbilt University. She currently works as a certified child life specialist with the Adaptive Care Team (ACT) at Cincinnati Children's Hospital. Her role includes providing individualized education, preparation, procedural support, and therapeutic play to meet the psychosocial needs of patients with intellectual and developmental disabilities and their families in the healthcare setting. Emily is a LEND trainee at the University of Cincinnati Center for Excellence in Developmental Disabilities. Her trainee goals and experiences are focused on increasing her knowledge and skill in policy and advocacy, community support and inclusion, and life course perspective. She is putting her knowledge to work through involvement with the Disabled Parenting Project, Starting Our Adventure Right (SOAR), and "Learn the Signs. Act Early" campaign.  

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Emily has been amazed by the number of opportunities for learning and involvement she has had through her LEND program! Below are some of her favorites so far:

  • Learning about different aspects of disability from experts - policy from a policy analyst, autism from a lead developmental pediatrician specializing in autism spectrum disorders, family perspective from parents, behavioral support strategies from a clinical psychologist, etc.
  • Volunteering for the Starting Our Adventure Right (SOAR) program in Cincinnati with air travel and the arts
  • Spending time with a mentor family in their home and in the community to gain greater understanding and empathy for the experience of having a child with a developmental disability
  • Participating in an evidence-based practice project and policy work with the Disabled Parenting Project (DPP)
  • Providing developmental and behavioral education to local Head Start and daycare programs as part of the "Learn the signs. Act early" initiative

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Emily is passionate about making a positive difference in the lives of individuals with developmental disabilities and their families. She currently does this by working as a certified child life specialist (CCLS) supporting patients with developmental disabilities who have difficulty coping with health care during their outpatient clinic appointments. Emily believes LEND/AUCD has allowed her to broaden her scope of practice by participating in policy, community work, and research to make a positive difference in the lives of individuals with developmental disabilities and their families beyond the hospital clinic setting.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Emily believes LEND has tremendously shaped her career path and goals. First, she feels that she is a better clinician because of the things she has learned through LEND, particularly best practices in the developmental disabilities field related to accessible language, evidence-based supports, and core disability knowledge. In addition, participating in LEND has strengthened Emily's desire to further her education in order to learn more and make a great impact in the disabilities field. Emily plans to apply for Ph.D. programs next fall in order to broaden her knowledge and reach related to developmental disabilities.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Emily feels that her LEND traineeship, without a doubt, has made her a better advocate for individuals with disabilities. She admits that she previously had little political/government knowledge or interest. However, Emily believes she has learned a lot about the policy and advocacy side of things through her LEND program, has begun to receive weekly AUCD briefs (and read them!), and has participated in a number of action alerts by contacting her representatives on important disability issues.

5. What advice do you have for individuals interested in joining a similar traineeship?

Emily would echo the advice a former LEND trainee had given to her: say "yes" to as many opportunities as possible and take advantage of the amazing chances for learning and involvement. It can be quite a bit of work at times, but it is so worth it. Also, take time to get to know fellow trainees and make lasting connections with these amazing individuals who share a similar interest and passion to you.

 

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Dana Kamara
Nisonger Center (OH)

Dana KamaraDana is a fifth year doctoral student in Intellectual and Developmental Disability (IDD) and Clinical Psychology. She is originally from Seattle and first became interested in autism research during my time as an undergraduate at the University of Washington. After taking a few years to work as a research coordinator and live abroad, Dana moved to Columbus to begin my PhD. Some of the highlights from her time in graduate school include her rotation in pediatric psychology in the hospital, working in the interdisciplinary LEND clinics, and her work examining sleep problems in developmental disabilities. In addition to graduate school, Dana likes to volunteer at weekend camps and adaptive outdoor recreation events, read for fun, play volleyball, and learn to figure skate.

Dana is in her second year of LEND training and is the trainee liaison for her program. This means that, in addition to various LEND opportunities, Dana has the opportunity to teach lectures for our seminar course and assist their trainees throughout the year. Dana also receives clinical training in the interdisciplinary assessment clinics and with individual clients. Dana has been involved in a few research projects. I collaborated on a project that worked on developing a tool to evaluate (and hopefully improve) early intervention outcome statements called the IFSP-OAT. Together with the research team, Dana presented these findings in an hour-long seminar at the Division for Exceptional Children Division of Early Childhood conference. Dana also loved the opportunity to come to the AUCD conference and meet other trainees that share her passions and interests. Dana experienced her first Hill visits at this year's conference and is very excited to come back for Disability Policy Seminar. 

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

 Dana is in her second year of LEND training and is the trainee liaison for her program. This means that, in addition to various LEND opportunities, Dana has the opportunity to teach lectures for our seminar course and assist their trainees throughout the year. Dana also receives clinical training in the interdisciplinary assessment clinics and with individual clients. Dana has been involved in a few research projects. I collaborated on a project that worked on developing a tool to evaluate (and hopefully improve) early intervention outcome statements called the IFSP-OAT. Together with the research team, Dana presented these findings in an hour-long seminar at the Division for Exceptional Children Division of Early Childhood conference. Dana also loved the opportunity to come to the AUCD conference and meet other trainees that share her passions and interests. Dana experienced her first Hill visits at this year's conference and is very excited to come back for Disability Policy Seminar.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Dana is very passionate about creating better lives for children and families. Dana's goal is to become the best clinician that she can and to conduct meaningful research that improves outcomes and quality of life. In their clinics, Dana and other professionals are able to take such an extensive amount of time with each family and hear the perspectives of various disciplines each time they discuss a case. Dana feels that she is receiving outstanding clinical training from these opportunities. Their faculty also strongly emphasizes individualized learning and tailoring the experience to best meet their needs, so Dana feels very supported in her career growth. Finally, the fact that this is a funded position enables Dana to receive this training and continue in graduate school without accruing debt, which she is very grateful for.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Dana greatly enjoyed my first year of LEND training, but her second year has really cemented her commitment to LEND and made her feel that a continued career in this network (e.g. becoming faculty at a LEND program) would be very fulfilling for her. Dana loves the opportunity to have true interdisciplinary collaboration, and she greatly enjoys the blend of research, clinical work, and advocacy. Dana also greatly enjoys the focus on training and trainee development. As a second-year trainee, Dana feels able to reflect on the LEND program from the perspective of program development and facilitating a positive training experience. That has been her favorite part this year. Dana loves knowing that their trainees will take with them a well-rounded perspective into their future practice and careers.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Absolutely. Dana feels she has learned so much in this program - through clinical experiences and learning with trainees from various disciplines and perspectives in their didactic seminars. Dana feels that she is much more educated about disability and the issues facing the disability community. She has also learned a lot from the disability policy news in brief. Specifically, she has learned how public policy could affect our community. Meeting with the Ohio senators and their staffers to teach them about the LEND program was also a wonderful experience for Dana.

5. What advice do you have for individuals interested in joining a similar traineeship?

Dana's advice is that they should absolutely join! She recommends trying to talk with a current or former trainee in your discipline to learn more about the role and what prepared them to be successful in it. Other than that, she would say go for it J.  Also, once they become LEND trainees she recommends trying to pursue as many opportunities as possible. For example, her center had limited funding to send first-year trainees to DC for the AUCD conference - she thinks it was a great opportunity for those who took advantage of this resource.

 

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K. Eva Weiss
Institute on Disabitlites (PA)

K Eva WissK. Eva Weiss ran across the field of disability studies on a treadmill ten years ago. There, she met an international student with disabilities-facing labyrinthine policies, discrimination, and life course disruption-who compelled her to change the course of her life. Eva is currently a PhD Candidate in anthropology at Temple University.

As a research assistant at the Institute on Disabilities at Temple University (IOD), UCEDD, Eva has contributed to local, state and national projects, examining secondary transition, service provision, supported decision-making, sibling supports, the school-to-prison pipeline, and deinstitutionalization, through which she has developed a strong foundation in the history of disability rights and mixed methods research. She is presently the IOD's AUCD Trainee Liaison and has presented original research twice at the AUCD Conference.

Eva earned her MA in Anthropology from Temple University and a BA in English Literature with a minor in Spanish from University of Michigan.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As a research assistant at the Institute on Disabilities, Eva has gained invaluable hands-on experience through national projects, such as collaborations with the National Council on Disability and Sibling Leadership Network, state projects with the Office of Vocational Rehabilitation and the PA Developmental Disabilities Council, and local interventions and ethnographic explorations.  

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Eva's traineeship has allowed her to realize her passion for social justice through genuine experiences learning from individuals about accessibility, intersectionality, and inclusion in an effort to address institutional and systemic inequality.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

The experiences I've gained through my traineeship at the IOD were fundamental in preparing Eva to conduct her dissertation fieldwork. These experiences have also transformed her anticipated post-doctorate career. Upon completion of her PhD, she looks forward to pursuing a full-time position at the IOD and magnifying my involvement in the AUCD network.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Through the experiences and mentorship Eva has received at the IOD, she feels she has become a stronger advocate for people with disabilities. The IOD's "nothing about us without us" approach drives her to listen more intently, ask better questions, design more inclusive research, and ultimately collect more meaningful data.

5. What advice do you have for individuals interested in joining a similar traineeship?

Eva's IOD family has been an immeasurable support in helping her achieve my academic and professional goals. Graduate school is immensely time consuming and intellectually and emotionally taxing, but she has no doubt that joining the AUCD network will support and strengthen your work. Eva welcomes any questions interested individuals may have!

 

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Nathan Fields
Vanderbilt Consortium LEND (TN)

Nathan FieldsNathan Fields is a LEND and UCEDD trainee from Vanderbilt University. He is currently in the process of earning his Masters in Special Education. He developed a strong desire to grow more in understanding children from hard places from his time living overseas for 5 years where he worked as a support staff alongside caregivers, teachers, and therapists who were working with children in an institutionalized setting. Working with children and youth who have experienced trauma and who also experience disability or poverty has been on the forefront of my mind as he has been working on his degree at Vanderbilt. Nathan feels called to work with children with disabilities, and he hopes to continue growing in his capacity to serve these students. He lives in Nashville, Tennessee with his wife and three kids (3 and under).

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

As a trainee, Nathan has had the opportunity to connect across interdisciplinary partnerships and consider best practices for improving the quality of life for children and families affected by disability. Nathan has grown as a young professional in Special Education by working in these partnerships and understanding a variety of perspectives that inform his approach to work with children and families. During his time as a LEND and UCEDD trainee, Nathan has immersed himself in a variety of community organizations where literacy, race, and disability overlap. 

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Nathan feels a strong call to work with children and youth who have experienced abuse and neglect. As a LEND trainee, Nathan has been able to grow in knowledge and experience in working with children from these backgrounds. As a LEND trainee, he was able to increase his understanding alongside other professionals from around America working with this population by attending the Disability Policy Seminar and the AUCD conference in DC this past Fall. LEND has provided Nathan with a more holistic picture of the field of disability, and he is deeply grateful for the experience that complements his course work in Special Education. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Having the coursework in LEND and having the experiences he has had through UCEDD has shaped a strong desire for Nathan to continue down the path of working with children from hard places. LEND provided Nathan with more insight into the world of disability and a number of best practices in working with children and families affected by disability. Nathan also feels that he has grown more comfortable knowing that he has access to a number of supports, research partnerships, and best practices that AUCD has made available. 

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Absolutely. Nathan believes he has not only have grown in his capacity to understand how legislation affects children and families affected by disability, but he has also been able to grow in his relationships and friendships with those who have disabilities. These contacts and friendships has helped him develop his ability as a stronger co-advocate with those who have advocated for so long already. 

5. What advice do you have for individuals interested in joining a similar traineeship?

Nathan would advise individuals as much as possible to reach out to their leaders within UCEDD and LEND and let them know that you'd like to get to know them. Allowing the leaders an opportunity to connect with you will strengthen your resolve and ability to develop as a trainee and young professional. Do coursework readings and ask questions. Think out of the box in your profession and learn to ask questions from the perspectives of other disciplines.

 

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Grace Brannon
Center on Disability and Development (TX)

Grace BrannonGrace Brannon is a third-year doctoral student studying Health and Organizational Communication in the Department of Communication at Texas A&M University. She earned her B.A. in Communication Studies and her M.A. in Communication at the University of Texas at Arlington. Grace's research focuses on health in interpersonal relationships using mixed methods, investigating issues such as disclosure, information management, privacy issues, and health disparities.

Grace became interested in the Center for Disability and Development after becoming involved with her department's Climate and Inclusion Committee in 2015. After some research, she decided applying to the Diversity Fellow program could provide much-needed disability- and diversity-specific training, fitting well with her research interests.

In her spare time, she enjoys reading fantasy novels, spending time with her husband, Jeremy, and their dog, Ewok. Grace is also active in the Bryan/College Station community, volunteering with a local United States Army Reserve unit Family Readiness Group.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Grace has worked with several faculty members on a couple of different projects the past year. First, Grace has been able to work with IRB submissions, including literature review, methods, and other protocol-specific material. She has worked with the directors of Aggie Ability Awareness, a disability awareness training for the TAMU campus, to 1) assist in the current trainings, and 2) to adapt it to a more healthcare-specific context. Third, Grace has worked with the directors of Project REDD and helped develop a resource directory for individuals with disabilities who face natural disasters (e.g., Hurricane Harvey).

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

One of Grace's passions is research. AUCD provided access to some resources (faculty members specifically) that enabled her research in disability-specific contexts.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Grace believes her program has expanded her goals to include health/and organizational research about individuals with disabilities. Grace's dissertation will actually be examining these elements, which she is very excited about!

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Because Grace has a disability, she had already considered herself a self-advocate. This traineeship has provided her with several resources that she didn't know existed, and a much stronger understanding of how our society has have come to where we are currently, regarding both policies and laws about disabilities. So yes, she believe she is better advocate for both herself and others.

5. What advice do you have for individuals interested in joining a similar traineeship?

Connect with other trainees near you! Grace feels that is has been amazing to have the comradery with her two fellow Fellows. Also, try to work with a variety of faculty members. It's been a great experience working with and learning from people who study similar issues (e.g., disability) but do so from different contexts and points of concern.

 

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Caitlin Winters
Utah Regional LEND (UT)

Caitlin Winters

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Through the Utah Regional LEND Program (URLEND), Caitlin has been able to engage in a research project that includes developing and validating a measure that assesses ASD knowledge across interdisciplinary settings. The initial research has involved assessing the level of ASD knowledge of LEND trainees from across the country at the beginning of their LEND programs. Caitlin has also had the opportunity to contribute to educational programing for local low-income cultural groups within the public health system in Salt Lake City, be mentored by a family with a child with special health care needs, and gain much more experience in different clinical settings.  

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Caitlin's passion involves helping to provide all individuals with the skills that they need to live meaningful and independent lives. Caitlin is also passionate about achieving this through a form of therapy that is strongly focused on the patient, their family, and what aspects of life are the most important to them. Caitlin feels that the most effective forms of rehabilitation are those that are truly client and family centered, which is why she is so passionate about occupational therapy! The URLEND program puts a strong emphasis on family-centered practice, and Caitlin believes she has gained so much from her experiences spending time with their family mentors.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Caitlin is currently in her second year of the occupational therapy program at the University of Utah and she feels that the URLEND program is giving her a much better understanding of the overall healthcare system, and legislation issues that are affecting the population of individuals with special health care needs and her profession overall. Caitlin thinks that this understanding is shaping the fact that she would like to be involved in policy and advocacy at a legislative level for the remainder of her career to ensure that individuals continue to receive the services and benefits that they deserve.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Caitlin feels that she has always been a supporter of individuals with disabilities, but she feel that the URLEND program has definitely helped her to become more of an outspoken advocate. She thinks that the program is helping her to find her voice as a professional with knowledge and confidence to speak up when it matters.

5. What advice do you have for individuals interested in joining a similar traineeship?

In her experience - be prepared to devote a lot of time to the program! Her LEND program requires a great number of assignments on top of weekly seminars. Being enrolled in the URLEND program and her educational program has been a special juggling act for Caitlin. With that being said, she recommends that individuals do the assignments. It seems like a lot of extra work, but just in the 3 short months that Caitlin has been involved in LEND, she feels she has learned so much and gained a much more comprehensive perspective on disability services within the healthcare system. Overall, Caitlin has loved her experiences thus far, and thinks you should be excited about joining LEND too! 

 

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Melissa Crist
Utah Regional LEND (UT)

Melissa CristMelissa Crist is a clinical faculty member at the University of Idaho's Center on Disabilities and Human Development (CDHD). She serves as both the Child Care Health Consultant Program Coordinator and Early Childhood Inclusion Specialist for the CDHD's IdahoSTARS Project. She holds an Idaho Blended Early Childhood Teaching Certification, certifying her to teach both general and special education for children birth to eight years of age. She has worked in the field of early childhood education/early intervention for the last fourteen years. In 2013 Melissa completed a master's degree in family and consumer science with an emphasis in early childhood inclusion. Melissa is a native Idahoan, originally from Boise, Idaho. She now resides in Moscow, Idaho with her husband and two children.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

During Melissa's time participating in URLEND, she has had a range of experiences focused on leadership, cultural competency and family-centered care. She is engaged in an interdisciplinary research project examining knowledge of autism spectrum disorder among pre-service educators. Melissa has conducted a home visit with a mentor family to further examine the unique strengths and challenges of a family that has a child with a disability. She has also engaged my fellow LEND trainees in her professional work to support quality initiatives with refugee child care providers in the state of Idaho. They have developed a targeted technical assistance package to support knowledge of child development, and implementation of best practices in early care and education.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Since Melisa's time as an early childhood educator and early interventionist, she has developed a strong passion for supporting early childhood inclusive experiences for young children with disabilities. AUCD has been a tremendous support in this effort. AUCD's high quality resources on inclusion, their policy guidance and support, along with sponsored opportunities to network with professionals from other UCEDDs and LEND programs has been instrumental in expanding Melissa's knowledge, skills and reach on this topic. Melissa believes that the URLEND has provided an opportunity to examine her efforts though an interdisciplinary approach. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Melissa believes the experiences she has had while engaged in URLEND have strengthened her leadership and collaboration skills. The opportunity has provided her time to reflect and improve as a leader specifically within the Maternal Child Health field. Melissa has found the interdisciplinary work especially beneficial. Melissa believes the opportunities to conduct research, develop resources and build a shared understanding of family-centered practices across multiple disciplines has greatly benefited her, her peers, and the children and families they serve. 

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Yes, Melissa believes that understanding the broader system of services and supports across the lifespan has helped her in her advocacy for individuals with disabilities. My work experience previously had been specific only to the early childhood years and systems. She now has an understanding of the systems and services many of the children will be engaged in after the early childhood years. Melissa has also increased her knowledge significantly with regard to interdisciplinary approaches for supporting children with complex health care needs.

5. What advice do you have for individuals interested in joining a similar traineeship

Melissa's advice would be to approach your traineeship with an open mind. You will learn so much beyond your own discipline. You will also learn the value of your own discipline within the larger maternal and child health field. These types of traineeships also take time and effort, and you have to be invested in the opportunity to get the most from it. 

 

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Alexis Nichols
VA-LEND (VA)

Alexis NicholsAlexis Nichols is a Virginia LEND trainee, motivational speaker, and advocate for people with disabilities. Born with Cerebral Palsy, Alexis has never seen her disability as something that limits her in life; instead she believes it enhances it. She strives in being a positive force for others and is never without a smile! Continually, she shares her message that "you define your disability, your disability doesn't define you!" She also sits on various, Boards, Councils and Committees, affecting people with disabilities.

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

This is the first time that the Virginia LEND has opened their program up to self-advocates. Being the first self-advocate in the program, Alexis was able to attend class with other trainees and educate them on her experience as a person with a disability. She went into the program feeling excited to learn from them, as well as to have them learn from her. Alexis thinks personal perspective from people with disabilities is so important, given that people with disabilities are the reason why programs like LEND and AUCD exist. Moreover, she emphasized that people with disabilities are part of the reason why health care professionals have jobs. As such, she feels that their input is just as valuable as anyone else's, and they deserve to be included.

Speaking of AUCD, Alexis was able to attend the most recent AUCD Conference. It was amazing. She was able to make so many connections that she believes will further her career path and provide her with more opportunities to do advocacy work. There were also many friendships that were formed, and she hopes they will last a lifetime.

Another thing that Alexis has gotten to do since LEND, like most trainees, is observe interdisciplinary clinics. She has been a patient for many of interdisciplinary clinics over the years. She felt like it was nice this time to be involved with the medical side of it and see more of how things are run that way. Because Alexis has experience from the patient side as well as the medical side, she felt like it was truly a collaborative effort to treat each patient.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Alexis has always been a passionate advocate for people with disabilities. She states, "Having Cerebral Palsy has given me so much!" Alexis feels blessed with an amazing outlook on life and so many wonderful opportunities. She is truly thankful for the ability to have others listen, as well as the ability to positively impact other people's lives. As part of the self-advocacy discipline, Alexis has been able to share her story with other trainees. She is able to pass on her expertise to them and teach them about the real-life experience of people with disabilities. Alexis also appreciates being able to just be a friend, with a disability-rather than a patient they see once per week. Alexis hopes that they will learn from their interactions that there is so much more to a person's life than what professionals see during an hour block of time once per week. Alexis feels that people with disabilities are experts in their own rights about their condition because they live with it. She also feels that professionals should respect and include their patients' opinions, just as they would any of their other colleagues. 

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Alexis feels that LEND has given her more incentive and means to complete a project that she has thought about working on for a long time. She wants her leadership project to be an invention that helps all people, not just those with disabilities. Alexis is not currently sharing her idea until she has put more work in place to make her dream becoming a reality. Alexis wants you to stay tuned for the upcoming years.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Alexis feels that getting to attend the interdisciplinary clinics as a trainee and not a patient has allowed her to see more of the medical side of the practice. It has also allowed her to see other patient's experiences as well. Alexis feels that it is so nice to see what helps other families and what doesn't. Alexis believes that she will be able to use the knowledge that she's learned from these experiences to help even more people. And for that, she is truly thankful. 

5. What advice do you have for individuals interested in joining a similar traineeship? 

Alexis believes that everyone has something that they can bring to the table and everyone can always learn from each other. She emphasizes that whether you are in a profession that deals with people with disabilities or not, you will come across someone who is disabled at some point your life. Having the knowledge that the LEND program provides is life-changing. You will meet so many amazing people, learn so many things, and walk (or roll) out with a new perspective on what it's like to have a disability.

 

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Catherine Kanter
Waisman Center (WI)

Catherine KanterCatherine Kanter, MS, CF-SLP is a speech-language pathology clinical fellow and second-year WI LEND fellow at the Waisman Center in Madison, WI.  Prior to returning to graduate school, Catherine supported individuals with disabilities in the community, schools, work, and home environments in her work as a special education paraprofessional, autism treatment specialist, and job coach.  Catherine currently works within the Communication Aids and Systems Clinic and Autism & Developmental Disabilities Clinic, and in the community through the Communication Development Program.  Catherine has a passion for developing functional communication using augmentative and alternative communication for individuals with complex communication needs.  As a LEND fellow, Catherine empowers others to integrate advocacy into clinical care to encourage systems-level changes to support individuals with disabilities and their families. Catherine holds a bachelor's degree in Linguistics from University of Minnesota-Twin Cities and a Master of Science in Speech-Language Pathology from the University of Wisconsin-Madison. 

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

The Waisman Center at the University of Wisconsin-Madison offers the unique combination of a LEND training program, Intellectual and Developmental Disabilities Research Center (IDDRC), and a University Center for Excellence in Developmental Disabilities (UCEDD) in one building, which offers each trainee a wealth of opportunities to develop a deeper understanding of disability and support personalized, diverse leadership experience.  As a Wisconsin LEND fellow, Cat feels extremely fortunate to have been involved in a number of research, clinical, and education opportunities.  In research, she has collaborated with their LEND research director, Dr. Leann Smith Dawalt, to adapt a national curriculum designed for parents of transition-aged youth with disabilities to support rural and underserved families in Wisconsin.  In clinical experience, Cat has worked as a speech-language pathologist on the interdisciplinary teams in four specialty clinics including the Communication Aids & Systems Clinic, Autism & Developmental Disabilities Clinic, Neuromotor Disorders Clinic, and Neuromuscular Disorders Clinic.  As an advocate, she has participated in hill visits on the national and state levels to educate policymakers on the importance of Medicaid for individuals with disabilities.  In collaboration with their policy preceptor, Elizabeth Hecht, Cat has developed educational presentations, handouts, and newsletters to support fellow trainees in understanding policy and engaging in advocacy opportunities.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Within the field of speech-language pathology, there are numerous specialties such as feeding and swallowing, fluency disorders, and Cat's personal favorite, augmentative and alternative communication (AAC). As a speech-language pathologist, Cat is passionate about supporting individuals with complex communication needs in developing functional communication using augmentative and alternative communication (AAC), particularly through the use of high-tech speech-generating devices (SGD).  Recent advances in technology have provided a wealth of new developments in the field of high-tech SGD, making it more challenging for many speech-language pathologists to stay up-to-date and provide the best match for a client's needs and skills.   The Wisconsin LEND program has been integral in developing Cat's specialized experience in AAC.  The Waisman Center is distinctive in that it houses the LEND training program, Intellectual & Developmental Disabilities Research Center (IDDRC), and a University Center for Excellence in Developmental Disabilities (UCEDD) in a central place.  The Waisman Center also houses one of only two AAC specialty clinics in the state, and the WI LEND program provided the unique opportunity for specialized training and experience working with AAC specialists within this clinic.  Because of the WI LEND program, Cat has developed specialized skills and discovered a passion in AAC she would have otherwise not known existed.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

The Wisconsin LEND program has shaped Cat;s vision for the type of clinician I want to be. As a speech language pathologist, she is passionate about helping those who cannot speak find their voice by providing high-quality services to individuals with developmental disabilities and their families. The WI LEND program encouraged Cat to ensure family-centered practice by incorporating families into therapy through collaboration with families to develop communication treatment goals that are relevant to their child's experience.  Cat is now dedicated to life-long learning to provide families with treatment methods and resources based on current best practices to support their needs.  Cat feels driven to improve individuals with disabilities and their families' access to equitable health care.  The WI LEND program gave Cat the tools to advocate for individuals with disabilities' rights to services and resources.  Through LEND Cat learned to collaborate with other knowledgeable professionals to expand and challenge my perspective within the field of speech language pathology, and combine family input, professional evaluation, and clinical expertise to individualize treatment to meet each client's unique needs.  Cat feels motivated to empower each team member to give all that they can to each client.  

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

The Wisconsin LEND program has empowered Cat to be a better advocate for individuals with disabilities through didactic seminars, clinical experience, and targeted advocacy activities.  Cat feels she gained the background knowledge on policies impacting individuals with disabilities through attending lectures on the importance of policy for clinician and through hearing firsthand advocacy experiences from individuals with disabilities and their families.  Wisconsin LEND also provided unique clinical opportunities that encouraged advocacy through serving patients and educating policymakers on my experience serving individuals with disabilities.  Finally, the Wisconsin LEND program empowers all trainees to engage in policy on the federal and state levels through hill visits to educate policymakers. 

5. What advice do you have for individuals interested in joining a similar traineeship?

Cat feels that the LEND program is an absolutely invaluable experience.  She encourages individuals to say "yes" to opportunities, and venture outside their comfort zones to push the bounds of their leadership potential.  She advises individuals to ask questions and listen to other disciplines to continue to expand their understanding of disability.

 

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Devin Parsons
Center for Excellence in Disabilities (WV)

Devin ParsonsDevin Parsons is from Charleston, West Virginia, but have lived in Morgantown at West Virginia University for 5 years. She obtained her Bachelors of Arts in Psychology in 2013 and she is currently working towards her Masters of Arts in Special Education with an emphasis in Applied Behavior Analysis. She is a LEND Trainee at the WVUCEDD, and she will be graduating in May 2018. She started in the field of ABA as a volunteer frontline therapist and has worked her way to supervising client book and obtaining supervision hours to obtain her Board-Certified Behavior Analyst credential. 

 

1. What kind of work/opportunities have you been involved in during your Program/Center experience?

Devin has been involved in supervising the Intensive Autism Service Delivery Clinic (iASD) for two years. She has been given the opportunity to work alongside other students who are gaining their experience as well and work as part of team to share ideas. Devin's center, West Virginia University Center for Excellence in Developmental Disabilities (WVUCEDD), also holds weekly Feeding and Swallowing Consultations to people that live in their area as well as a Next Steps Clinic that focuses on identifying helpful services and plans for people with disabilities who are transitioning from grade to grade or out of school. While observing these clinics Devin can discuss ideas and plans with an interdisciplinary team of other LEND Trainees at their center that focus on other fields.

2. Tell us about your passion and how your Program/Center and AUCD has enabled you to pursue your passion.

Devin's passion was helping people. Originally, she started in athletic training, interested in injury rehabilitation; however, she then discovered a volunteer position through her older brother at the iASD. After working for one semester Devin changed her major and dedicated everything to the clinic. She graduated undergrad a year early in hopes to receive the LEND grant and pursue a Masters in Special Education. Being at the iASD has shown her the deficit of services available to families in West Virginia. The WVUCEDD has been supporting the clinic hand in hand by giving them clinic space and helping with the logistics of fundraising, since their clinic is non-profit and does not charge families for services. The Center has continued to allow more trainees and professionals to come through the doors and learn in a hands-on manner to gain professional experience in this field.

3. How has your work been impacted by your experience at your Program/Center (i.e., has it shaped your career path and/or goals)?

Working at the center and iASD has greatly shaped Devin's career goals. Not only has she found lifelong friends and connections, but she has also been inspired to collaborate with two other LEND Trainees to open their own autism clinic in the Morgantown area. Their goal is to spread services for those who are currently on wait lists or looking for BCBAs. Almost every day at clinic they receive a call about someone's child who needs services and it is their goal to be able to open their doors and serve a few more people.

4. Do you think your traineeship has made you a better advocate for individuals with disabilities? If so, please describe.

Devin thinks that her traineeship has opened doors and created connections for her to be able to help advocate for individuals with disabilities. Before coming to the center, she always maintained a kind attitude. She feels like she was accepting of others but being a trainee has given her the drive and ambition to be that voice advocating for something instead of just standing in support or agreeing. It has shown her that action needs to be taken to see a difference in this field.

5. What advice do you have for individuals interested in joining a similar traineeship?

Devin's advice is to network with people in your area and dream big. After she announced they were opening a clinic they have been told many discouraging things about the financial risks and the hard work that will be required of them. However, Devin believes finding her passion in this field and advocating and serving children with autism has been the most rewarding thing she's accomplished so far. Her advice would be that the squeaky wheel gets the oil, make noise, raise your voice, advocate, and find a specific interest to make a difference in your specialized field. 

 

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