Youth Steering Committee

The Center for Transition to Adult Health Care for Youth with Disabilities works to:

  • Provide healthcare transition training and resources to youth and young adults with ID/DD, ages 12-26, their families, and the professionals who serve them.
  • Be a person-centered, culturally responsive resource center to empower youth with intellectual and developmental disabilities (ID/DD) in directing their own healthcare

The Youth Steering Committee tells the Center what youth need to transition their health care. This group of 8-10 young adults with intellectual and developmental disabilities make sure the project is youth driven. The Youth Steering Committee members learn new skills, share ideas, and make decisions about a website, app, and tools for youth, families, and professionals.

A graphic for the youth steering committee shown on a bright blue, circular background.
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Arif Deen (He/Him/His)

New York
Arif is 21 years old and has a diagnosis of Cerebral Palsy. Arif is currently serving as a Board Member for YASA, Youth as Self Advocates, a national project that is part of Family Voices.  He serves on several different committees as a self-advocate.

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Isaiah Boydston (He/Him)

Isaiah graduated from Platte County High School in 2019. He is currently working at Corner Cafe as a busser. Isaiah has served as a self-advocate in the area of guardianship. During his free time, he watches YouTube videos and plays video games.

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Emily Cowen (She/Her)

Emily Cowen is a member of three self-advocacy groups – KASA (Kids as Self-advocates), YASA (Youth as Self-advocates), and People First of Connecticut. For KASA, Emily holds a position as the Youth Coordinator. For YASA, she serves on the Marketing Committee, assisting with YASA’s social media. Emily is 22 years old and has Cerebral Palsy. She attends Sacred Heart University and is majoring in Psychology. Emily hopes to become a therapist in the future. When not busy with school and work; she enjoys spending time with friends and family, listening to music, and watching Netflix.

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Cody Rooney (He/Him)

Cody attends Holyoke Community College. He is a Human Services major. He has become a leader nationally, as well as in his community. Cody looks to go to a 4-year university in the future.

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Taylor Thomas-Harris (She/Her/Hers)

Taylor recently graduated from Virginia State University with a degree in Social Work. Taylor plans on pursing her master’s degree in Diversity and Inclusion soon. She wants to work closely with people who have disabilities to give back to her community. In Taylor’s free time, she delights in encouraging people, hanging out with her friends, and spending time with her puppy.

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Gracie Hodapp (She/Her)

Gracie Hodapp attended Gateway School District for kindergarten through fourth grade.  Due to multiple health issues, including cerebral palsy, epilepsy, and issues in the school district, she switched to PA Cyber in fifth grade. PA Cyber helped her so much with basic accommodations that Gracie not only passed her classes but also won several awards for her hard work. Gracie graduated from PA Cyber in 2019. Since then, she has been a part of the Youth Steering Committee and an Epilepsy Awareness Ambassador with the Epilepsy Foundation of Maryland since October of 2021. By being an Epilepsy Awareness Ambassador and studying epilepsy in her free time, she has been able to share information to help others who have epilepsy.

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Ren Koloni (They/Them)

Ren Koloni is a queer, trans, autistic, multiply-disabled justice worker, interested in access and radical love. They received a BA in Sociology and Gender Studies from the University of Mary Washington in 2019, and an MA in English, focusing on disability and race, from the George Washington University in 2021. Apart from the YSC, they also work with CommunicationFIRST, a nonprofit organization serving people with speech and communication disabilities, and the RAISE Center, which provides resources on youth transition. They live with their two partners and a cat.

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Pratik Gudimella (He/Him/Them)

New Jersey
Pratik Gudimella was born in India. He came to the U.S. in 2012. Pratik graduated from John P. Stevens High School and went to college. He works at a restaurant. Pratik loves to dance and went to school to learn dance.

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Sophie Greer (She/Her/Hers)

Sophie Greer (she/her) is a member of NHCTRC’s Youth Steering Committee. She is studying Neuroscience, Health Studies, and Data Science at Bryn Mawr College and hopes to go into a field that combines these subjects with advocacy after graduation. She is heavily involved in disability & neurodivergent advocacy at her school.

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Jordan Pratt (He/Him)

New Jersey
Jordan Pratt graduated from high school in 2021. Jordan works part time in retail. Jordan is very involved with his transition in his adult life, learning and advocating for his own healthcare services, particularly mental health services. Jordan has participated in Special Olympics basketball, cycling and track and field. Jordan also loves learning and playing electronic games such as basketball, baseball, hockey, and wrestling, and he is learning how to create games. Jordan participates in a SPAN Parent Advocacy Network Youth Chat to enhance his self-advocacy skills.

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

In honor of