Are you a youth with a disability or chronic health condition between the ages of 13 and 26 who wants to make a difference? Consider applying to be a member of our National Advisory Board!
The National Advisory Board meets monthly on Zoom. Advisory Board members are expected to spend about 2-4 hours/month on YASA activities and projects. There are opportunities to serve on other boards and committees, travel to attend or present at conferences or meetings, and occasionally get paid to participate on special projects.
Got a question? Contact matthew@familyvoices.org for more information.
We invite you to apply for a board position by clicking on the link below.
YASA is created by youth with disabilities for youth to educate society about issues concerning us. We believe in self-determination, creating support networks and self-advocacy
for all youth with disabilities in our society.
We are leaders in our communities and we help spread helpful, positive information among our peers to increase knowledge around various disability topics. We also help health care professionals, policymakers and other adults in our communities understand what it is like to live our lives and we participate in discussions about how to help each other succeed.
Age: 21
Years working with YASA: 2020-Present
Hometown: Fairfield, CT
About Emily:
Emily has cerebral palsy. She attends Sacred Heart University where she is majoring in psychology. She hopes to become a therapist in the future. She is a member of CT KASA, a youth focused project at PATH Parent to Parent/Family Voices of Connecticut. When she’s not busy with school, she enjoys spending time with her friends and family, playing with her dog Bella, listening to music, and watching Netflix. She also loves Starbucks.
Age: 20
Hometown: Valley Stream, New York
About Arif:
Arif was born with Cerebral Palsy. He a friendly, thoughtful, and hardworking person. Arif feels very strongly about advocating for people with disabilities. He decided to join YASA because he wants to help spread awareness about issues that are relevant to us today. He looks forward to working with others to help make changes.
Age: 20
Years working with YASA: 2020-Present
Hometown: Valley Stream, New York
About Atif:
Atif was born and raised in Queens, NY and moved with his family to Valley Stream three years ago. He and his twin brother, Arif were born with Cerebral Palsy. He has been in a wheelchair since he was a child. Although his disability makes many things in life more difficult, it also helps teach him how to become an advocate for himself and others. He loves socializing and getting to know new people. He is a good-natured person, who appreciates a good sense of humor. Atif joined YASA because he wanted to explore and improve his advocacy skills, as well as meet and discuss important issues with others.
Age: 22
Hometown: North Augusta, South Carolina
About Lis:
Lis recently received her Associates of Arts degree from Aiken Technical College and an Associates in Criminal Justice. She will be transferring to Clemson to get her bachelor’s in psychology with a minor in American Sign Language. She works part time at her local Center for Independent Living doing office support, is an assistant Girl Scout leader, and has been a member of YASA for two years. She is also a member of the National Center for Independent Living Youth Caucus. She has multiple disabilities including scoliosis, ADHD, and a learning disability called dysgraphia. Lis loves volunteering, advocacy, reading, listening to music, playing video games. She also loves to travel and meet new people. She has four cats and a boyfriend of three years. Lis hopes to travel to other countries one day to experience their culture and people.
Age: 19
Hometown: Hurricane, West Virginia
Ayanda has Cerebral Palsy and is attending Marshall University majoring in Political Science. She plans to become an attorney. Ayanda joined YASA because she felt it was her duty to advocate for other youth with disabilities who can’t advocate for themselves.
Age: 23
Years working with YASA: 2019 -Present
Hometown: Virginia Beach, Virginia
About Shanon:
Shannon is Autistic and Mental Health Advocate with an interest to increase neurodiversity in STEM. She has spent her summers doing biomedical research at the National Institute of Neurological Disorders and Stroke, Norfolk State University, and University of New Mexico’s School of Medicine. Also, Shannon has received national awards on the impact of her research towards the pharmaceutical industry and presented her research at national conferences. Currently, she serves on the Youth of as Self-Advocates (YASA) Committee at Family Voices, Youth Voice Amplified Committee Member at the Association of Maternal and Child Health Programs (AMCHP), and as a National Consumer Scholar at Camden Health. Shannon loves to promote the acceptance of those who are different by educating people about on what it is like to live with a disability. Her recent speaking engagements was as a panel speaker at the 2022 Family Voice’s National Conference in Washington D.C. and 2023 AMCHP Conference in New Orleans, LA. In 2024, Shannon’s next goal is to transfer from Tidewater Community College to a 4-year university and major either in Neuroscience or Biology with a concentration in Neurobiology.
Age: 22
Years working with YASA: 2020-Present
Hometown: Colchester, Connecticut
About Jake:
At age 13, Jake sustained a traumatic brain injury. He spent the years since his accident in various therapies to help him regain some of what he lost. Being differently abled has opened a whole new world for him. He’s had the opportunity to meet people he may not have had the chance to before. He’s learned to advocate for myself and for others who may not have the voice to do so. Jake put his passion for self-advocacy into a public speaking career which has allowed him to spread his message of self-advocacy, youth voice and being DIFFERENTLY abled to audiences from around the country. Being part of YASA continues to let him connect with people and support them, while continuing to learn and grow. He looks forward to this journey and the positive impact he can make.
Age: 13-26 years old
Hometown: Anywhere, USA
About YOU:
Are you a youth with a disability or chronic health condition between the ages of 13 and 26 who wants to make a difference? Find all the details about becoming a YASA Board Member HERE.
Age: 13-26 years old
Hometown: Anywhere, USA
About YOU:
Are you a youth with a disability or chronic health condition between the ages of 13 and 26 who wants to make a difference? Find all the details about becoming a YASA Board Member HERE.
Youth as Self Advocates (YASA) is a national advisory board of teen and young adult leaders with disabilities who represent diverse races and cultures, have different disabilities and health care needs, and come from different regions of the country.
Our mission is to educate society about issues concerning us.
We are leaders in our communities and we help spread helpful, positive information among our peers to increase knowledge around various issues concerning us. We also help health care professionals, policymakers and other adults in our communities understand what it is like to live our lives. We share our personal stories to help improve services and supports for ourselves and other youth.
We embrace the slogan, “nothing about us without us”, a centuries-old saying that states no policy should be created without the full and direct participation of those it affects.
We share our voices at national, state and local events and participate on numerous committees and boards in our hometowns.
Selecting a speaker is hard work. Especially when you are looking for experienced youth to take part in an event. YASA is ready and eager to offer the voices of its expert members. YASA members are available to speak individually or as a group sharing their experiences growing up and living with a disability and/or special health care need. Our members have a range of experiences and can speak to the following subjects:
If you would like a YASA member to speak at your meeting or event, please send your request to: matthew@familyvoices.org
I hope June is off to a great start for you. Last month, we had the chance to send Nora Wells off with a celebration to honor all her contributions to Family Voices over the past 30 years. As we step into June and the rest of summer, we are working hard on new grants to support your work and improve access to services and health outcomes for children and youth with special health care needs and disabilities. We are hiring new staff for upcoming grant-funded projects. Additionally, we are working on our strategic plan, which is due to be completed in late fall. As we move through our strategic planning process, you can expect to hear from me and our staff, and we will invite your input along the way.
I am excited to share a few initiatives that we are working on at Family Voices:
The FELSC grant began officially on June 1. This grant, similar to LFPP, includes technical assistance to the F2Fs, but there are many differences this time around.
I am excited to partner with two dynamic organizations, SPAN and the National Institute for Children’s Health Quality (NICHQ), to implement this project. As you probably know already, Family Voices and SPAN are co-leading the TA to F2Fs to help improve data collection, outreach, and a focus on equity, as the grant requires. Later in the grant period, NICHQ, a national organization with expertise in maternal, infant and child health outcomes, will co-lead a Learning Collaborative with MCHB-funded entities such as Title V and MIECHV programs. This Learning Collaborative will include interdisciplinary teams that work to address the gaps in family engagement nationwide.
Another aspect of this project that excites me most is the broad partnership among multiple organizations that serve children with special health care needs and their families. We are convening Youth Engagement and Family Engagement Task Forces to complete an environmental scan on youth and family engagement, which will inform our work. These groups will comprise family and youth leaders from across the country that work with organizations such as Hands and Voices, Youth Move, Autism Self-Advocacy Network, Youth as Self-Advocates (YASA), Lend Family Network, Genetic Alliance, PFCC Partners, and CPIR.
Through the environmental scan, a Family Leadership Academy, and a Diversity, Equity, Inclusion and Accessibility Academy, we have a great opportunity with this new grant to change the landscape of family engagement and ensure that the work we do leads to equitable health outcomes for children and youth with special health care needs and disabilities. I am looking forward to collaborating with you in these efforts.
Family Voices was awarded funding from Lucile Packard Foundation for Children’s Health to support state-level work in educating families about the public health emergency unwinding. This funding will provide support to F2Fs and FVAOs to provide family education and support around the public health emergency unwinding to help meet the needs of your local communities as they navigate this complex shift in Medicaid policy.
We are thrilled to continue our long-standing relationship with CAHMI over the next five years. Through a new grant-funded project, CAHMI will provide training and guidance on utilizing the Data Resource Center to access and use data to support your programmatic and advocacy efforts. This can be especially important as the funding cycle for F2Fs comes up for renewal. The data from the Data Resource Center will help you to make the case for the value of the work you do at the state and local levels. Stay tuned for more information about this project and how you can connect to the Data Resource Center.