Asha Abdullahi
Asha’s journey in serving Somali immigrants, many of whom are refugees, began several years ago when she arrived in this country and witnessed first-hand the significant challenges faced by Somali families, including her own. After helping her parents find resources and services for her brother who suffered from PTSD, Asha faced challenges with her toddler son who was diagnosed with Autism. She was able to secure appropriate services for her son and brother, but this is not the case for many Somali families
As refugees, Somali families face racial and religious discrimination for the first-time. Somali adolescents are at risk for mental health challenges due to acculturative stress and new family dynamics in the U.S. (e.g., children speak English, but parents do not). Many Somali families wait to seek medical diagnosis or to access services for their children due to cultural perceptions of certain conditions as taboo and stigmatizing.
Asha resolved to help Somali families so that their outcomes could be positive, and their children could thrive. In 2017, she attended the DD Council supported advocacy training through the Federation for Children with Special Needs, which advanced her understanding of the special education process and afforded her the opportunity to effectively advocate for parents. She also
Enrolled as a Diversity Fellow in the Leadership Education in Neurodevelopmental Disabilities (LEND) program through Boston Children’s Hospital/Institute for Community Inclusion. Asha participated in an inter-disciplinary cohort valuing cultural competence and family-centered care, attended conferences in the disability community regarding education and advocacy, and created outreach materials for the Somali families.
Asha’s work has led to partnerships with myriad agencies and starting SPACE, a non-profit working with Somali families grappling with mental health and disabilities. Among the services SPACE provides, is working with families to get early diagnosis, connecting them to resources to improve their child’s outcomes such as mental health agencies, and interpreting documents for Somali families who have children with special needs. In addition, their biggest work has been educating families about disabilities and reducing stigma. SPACE works to improve communication between parents and school administrators, special education teachers, and health providers for building healthy relationships among families and schools.
Priscilla Bessa
Priscilla is a mother of three amazing, unique children, two of whom are neurodivergent. The family is originally from Brazil and now live in Northborough. Priscilla has a degree in Education/Linguistics and was a bilingual (English/Portuguese) teacher for 8 years. Their lives changed after her second daughter was diagnosed with a rare genetic neurodevelopmental disorder. Her multiple disabilities and medical complexities were the main reason the family moved to the US in 2016. Being an immigrant and living far from their support network in a new country, added to the many needs of a newly diagnosed child. Priscilla started her journey as a parent advocate, learning to navigate the health and education systems, and seeking services and supports to provide a good quality of life for her daughter.
Priscilla has attended many leadership trainings and disability related courses to improve her skills. In 2017, she graduated from Mass Families metro region Family Leadership Series and completed the PCTI training for parent advocates at the Federation for Children with Special Needs. In 2020, her youngest child was diagnosed with Autism by the age of 2.
The following year she joined Mass Families as a volunteer Portuguese Outreach Coordinator and became a Charting the Life Course Ambassador. Priscilla recently received a certificate as a Community Interpreter and started the LEND fellowship at UMass/Shriver Center.
Gyasi Burks-Abbott
Gyasi is a writer, speaker, and Autism self-advocate who has shared his experiences living with Autism at various conferences, both domestically and abroad.
Burks-Abbott lives in Bedford, Massachusetts where he sits on the Board of Directors of the Friends of the Bedford Free Public Library and is a member of the Bedford Commission on Disability. He enjoys reading, writing, and public speaking.
From 2018 - 2019, Burks-Abbott served as a LEND Fellow at Boston Children’s Hospital, where he worked to advocate for the successful reauthorization of the Autism CARES Act. From 2019 – 2020 he served as the Gopen Fellow, a year-long position funded by the Massachusetts Developmental Disabilities Council and the Institute for Community Inclusion at UMass Boston. Burks-Abbott implemented an independent project, creating a website providing Autism in Adulthood Resources. He has served on the boards of many Autism advocacy organizations.
Andrew Carr
Andrew is an advocate who is a cochlear and hearing aid user and has a twin brother with cerebral palsy. Andrew was empowered to advocate for himself, and his brother’s and others’ accessibility needs. He is passionate about helping others with disabilities succeed and to learn how to advocate for their own needs.
Andrew helped start the “Teach Disability History Committee" at Easter Seals Massachusetts and was a member of the "Supported Decision-Making Taskforce” with Mass Advocates Standing Strong (MASS). He is also a member of the Massachusetts Statewide Independent Living Council (MASILC) and the Winthrop Disability Commission.
Andrew is the founder and developer of the website TheAdvocacyMagazine.com, a work in progress to launch a media platform for disability advocacy and innovative policy solutions. He likes to conduct research in his spare time, read books, is a gamer, and spends time with family.
Andrew graduated from Westfield State University with a double major in Political Science and History and currently works at Mass Advocates Standing Strong (MASS) as a SALS Training Team Coordinator.
William Edes
William (Will) is a practicing attorney with over six years’ experience in a wide range of matters involving issues of Zoning, Real Estate, Landlord-Tenant disputes, Probate, Estate Planning, Immigration and Civil Litigation. Currently, he is with the firm Drohan, Tocchio and Morgan, P.C. in Hingham.
Will grew up in a family that has a strong commitment to advocacy for individuals with disabilities and others who are less able to represent themselves. He has always been actively involved in all aspects of his community. Most important, Will is the older brother and best friend of Andrew, a 33-year-old man with Down Syndrome. Will is co-guardian of his brother and has been advocating for and supporting him all his life.
Recently Will served as Chairperson of the Falmouth Commission on Disabilities, and he welcomes this new opportunity as a Council member to use his professional expertise and personal experience to serve in a broader capacity to advocate for the rights of individuals with disabilities.
Chelsey Goddard
Chelsey is a parent of two children, one of which is autistic. She is a Vice President at the Education Development Center(EDC), and a nationally recognized expert in prevention science, leads EDC’s U.S.-based health, mental health, and behavioral health work. A certified prevention specialist with a deep commitment to behavioral health equity, she has decades of experience successfully promoting the use of evidence-based, culturally appropriate substance misuse prevention practices. Nationwide, she advances knowledge of the opioid crisis, systems change, prevention workforce training, and co-morbid conditions.
Currently, Goddard is a senior advisor for Prevention Solutions@EDC, a training and resource hub that delivers customized consultation and award-winning online courses to strengthen the substance misuse prevention workforce. She is also leading the design of a new mobile app, Caregiver Navigator, that will provide caregivers of children with developmental disabilities with the tools and information they need to navigate complex health and education systems, advocate for their children, and tend their own well-being.
Goddard is an ex-officio member of the National Academies of Science, Engineering, and Medicine’s Forum on Mental and Substance Use Disorders. During her eight years as the director of the Center for the Application of Prevention Technologies at EDC, she led the delivery of training to over 44,000 practitioners and technical assistance to over 14,000 people nationwide.
Goddard completed a fellowship in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the Institute for Community Inclusion at Boston Children’s Hospital. She holds an MPH from the University of Michigan. She spends her free time with her family, exploring new parts of Greater Boston and finding new and interesting places to eat. She enjoys pursuing creative crafty endeavors, puzzles, reading, and taking long walks with her dog.
Sethany Griffin
Along with holding an associate degree in Health Care Management and a Bachelor of Science Degree in Psychology from the University of Phoenix; Ms. Griffin works as the Director of Family Supports for a Boston-based non-profit and oversees both a metro-based family support center and a regionally based autism support center that together serve over 1000 families. With over 35 years of experience and a history of both personal and legislative advocacy; Sethany wants to help impact the ever-changing landscape of disability services and supports.
Sethany and Dana are parents to DJ, 22 and Karl, 20. The Griffin family have always been strong advocates for the ID/DD community. Sethany’s youngest son lives with Autism, Intellectual Delay and Schizoaffective Disorder. She and her 22-year-old son DJ are co-guardians for Karl and have advocated vigorously to ensure that his voice is heard. This is their motivator and the center of conversations as Karl encounters new situations on his life’s journey. As both a human services professional and a mother, Ms. Griffin has worked without pause to ensure that people are not overlooked, neglected, or marginalized. She was able to witness the power of organized advocacy through her work on Nicky’s Law, one of her proudest personal and professional accomplishments.
Sandra Heller – Member at Large
Sandra has worked in the field of developmental disabilities for over 30 years. She currently serves as Associate Executive Director of Nemasket Group Inc. and directs the Southeastern Medically Complex Program, providing information/referrals, advocacy, and funding management for families with children and adults with developmental disabilities that are medically complex. She formerly served as the Chairperson for Massachusetts Families Organizing for Change and supports the planning and development of the Southeastern Family Leadership Series.
Sandra has a tremendous passion and experience, facilitating classes and workshops on such topics as Supported Decision Making, Estate Planning, Legislative Advocacy, and Person-Centered Planning. Ms. Heller is also an Ambassador for Charting the LifeCourse. Ms. Heller has provided extensive testimony at legislative hearings on important disability issues for many years and will continue to offer and advocate for the rights to live, love, and belong in our society and have the “good things in life” that all deserve. Her most rewarding role is as a parent.
As the mother of a 34-year-old man born with Down Syndrome and complex medical needs, Sandra has always focused on him enjoying and being fully included in life, from school to working since age 16, to moving to his own home over 8 years ago. Person-centered planning and Supported Decision Making have been invaluable tools that help his family and friends on his journey. Sandra is also the proud mother of two adult daughters and grandmother to two beautiful young boys.
Cynthia Laine
Cynthia resides in Fitchburg, MA and is a mom of 4 boys, two of whom are diagnosed with autism spectrum disorder (ASD). Cynthia notes that no instruction manual comes with the diagnosis. Supporting both a verbal and non-verbal child on the spectrum is very challenging, as many ASD parents know. Cynthia learned about the service system through other parents, Mass Families and through advocacy for her two sons.
Cynthia is a graduate of Johnson and Wales University with an Associate’s degree in Travel and Tourism and a Bachelor’s degree in hospitality management. She currently works as a financial coach, educating families on how to better manage their finances, and as a Haitian creole interpreter and translator.
Cynthia is also a Charting Life Course Ambassador and a member of the Inaugural Advisory Board for the Massachusetts Association of Haitian Parents. She dedicates herself to advocating for children who have no voice and enjoys sharing resources with other parents so their children can thrive. Cynthia loves talking about her experiences with the parents she meets, especially those who are new to the diagnosis of their children.
Cynthia is currently on a leave of absence as she fulfills her duties as the 2023-2024 Allen C. Crocker Fellow.
Bridget Levandowski
Bridget is a young professional working in the field as an applied behavioral therapist at an inclusive preschool in Natick, MA. She is a certified Registered Behavior Technician (RBT) under the Behavior Analyst Certification Board. As a behavioral therapist, Bridget works with students with diverse needs. She provides clinical skills instruction, assessments, and behavior reduction protocols based on the principles of Applied Behavior Analysis. Basically, she teaches students how to communicate their needs. Bridget works with students either 1:1 or fully integrated classrooms.
Some of her past experiences include: Volunteering for the Campaign for Learning Disabilities in Ghana, Africa, working with the students with diverse needs who are not properly supported in the classroom; Interning at Mass. General hospital's Down Syndrome Program, assisting in developing an app for individuals with Down Syndrome to choose healthier food options; Volunteering for the Special Olympics; Leadership group instructor at Thrive Support and Advocacy; Intensive group home counselor at the Brandon School and Residential Treatment Center where she worked with boys who have complex behavioral challenges and provided social, emotional, trauma informed therapeutic support……just to name a few.
Bridget is passionate about disability rights and activism, inclusion, social justice, and equity. Bridget will be a great addition to our Council. In her free time, Bridget enjoys traveling, gardening, volunteering and playing with her dog.
Paul Lutfy
Paul lives in Milford with his wife and they have 2 adult boys. He attended Franklin Institute of Boston for Electrical Engineering. Paul worked at DELL Technologies for 28 years and was a Project Coordinator prior to retiring in July of 2023.
Paul has a 30-year-old son with severe cerebral palsy, medically fragile, who needs total care and resides at a group home in Walpole. Paul believes he can effectively represent people with developmental disabilities and lend his voice to their needs. Paul has worked with advocacy groups, organizations, and legislators to advocate for human and disability rights.
His goal is to ensure quality of care and community inclusion for people with developmental disabilities. He believes that being part of the Council will give him a better overall view as he continues to advocate for people with developmental disabilities actively.
In his personal life, Paul has been a volunteer coach for baseball, soccer, and basketball teams, and a scoutmaster. He also enjoys doing lots of research.
Dusya Lyubovskaya
Dusya is on the Autism spectrum, diagnosed in 2009/2010. Shortly afterwards, she joined the Association for Autism and Neurodiversity (AANE).
She recalls making friends immediately in the new community where she felt home and noticed the lack of support, especially in academics for people and children with “invisible“ disabilities. She joined The Autistic Self Advocacy Network (ASAN) and advocated on behalf of herself as well as for others who can’t speak up either due to anxiety or other reasons.
Throughout the years she has joined additional advocacy groups and organizations. She testified using her personal experience as somebody with an invisible disability, as well as her expertise as a professional in the medical field.
Dusya is very proud of the accomplishments of the disability community as a whole, and knows we still have ways to go. however, as she said, "I know in my heart that there is hope and we will succeed!"
Marissa O'Donnell
Marissa has spent her career in mission-driven work, representing important causes including cancer and youth development. As both a frontline fundraiser and leader of teams, Marissa has helped to secure over $75 million in contributions from individuals, events, foundations, and corporate partnerships.
Now, as the proud parent to Calvin, a person with Down Syndrome, she has a newfound passion for pairing her professional talents to efforts on behalf of the Intellectual and Developmental Disability community in the Bay State and beyond. Notably, Marissa and her family have driven nearly $100,000 from their personal network to support the Massachusetts Down Syndrome Congress and efforts focused on inclusive education.
Marissa resides in Franklin with her husband Ben, and sons Calvin and Casey. She is a graduate of Marist College and New York University. These days she’s very busy as mom to an active toddler and nocturnal baby. She loves traveling to visit family and friends, being outdoors with her boys, and finding precious time to herself to scrapbook.
Raquel Quezada – Chairperson
Raquel is from the Dominican Republic and is a mother of 4 children - one with Cerebral Palsy and another medically complex. She is an avid advocate in the Latino community, but also for all Massachusetts families and wherever else her support is needed. Previously, Quezada was a Boston Children’s Hospital LEND program fellow from 2017-18, an Allen C. Crocker fellow from 2018-19, and a student studying Psychology. She is experienced in Communications, Radio, and TV Production in her home country of the Dominican Republic and has authored 9 books.
Equipped with the knowledge, compassion, and care of a mother of a child with a disability and with education on different types of disabilities and situations, Quezada created and began hosting the local radio and TV program “Cambiando El Mundo de Personas con Discapacidades” (Changing the World of People with Disabilities.) Quezada’s overall mission is to educate, inform, and share knowledge on what information and resources are available for people with special needs, and provide a place where other families can come and share their experiences.
In her show, Quezada talks about all topics that can help disability communities. Different organizations, public and private businesses, and companies are brought on to share information about different programs and to showcase any products or technology that can benefit people with special needs.
Cody Rooney – Vice-Chairperson
Cody is from Amherst, MA and is currently studying Political Science at UMass Amherst. He previously attended Holyoke Community College, where he graduated with a degree in Human Services. He was born with Cerebral Palsy and his family was told he would never walk or talk.
Well, he does both now!
Cody has a passion for leadership and doing the work for a better tomorrow. He has worked with Partners for Youth with Disabilities as a fellow for the summer program “Young Leaders Rising” and as a peer leader for the Youth Leadership Forum.
Cody is student Vice President at Holyoke Community College where he also serves on the Teach Disability Committee. He is also a changemaker with New Deal for Youth where they work hard for a better tomorrow.
Cody is also very involved with his Native American culture. He enjoys traveling, Boston sports teams, and going to the beach.
Alana Russo – Secretary
Alana Russo grew up in Billerica and now lives independently in an apartment in Bedford. She is an alumna of The Cotting School from which she graduated in 2003 with Honors. In addition to receiving numerous academic achievements and awards, she also served as Class Vice President, was the Captain of the Cheerleading Squad, wrote for the School Newspaper, ran track, and played softball.
Russo continued her education at Middlesex Community College’s Transition Program, graduating in 2006 at the top of her class and as Student of the Year. She received numerous scholarships and awards for her Middlesex education. She has served in numerous organizations, such as Partners for Youth with Disabilities, and Northeast Independent Living Program and she currently sits on the Tenant Board for the Bedford Housing Authority. She has also been a part of the Special Olympics in cheerleading, soccer, and bowling.
Alana loves reading, doing puzzles, scrapbooking, traveling, baking, cooking, dancing, and hanging out with friends from the social club she belongs to, Springboard. Alana has a younger brother Domenic, who is a lawyer and works for the United States Government.
Sara Scrivener
Sara is an adult on the Autism Spectrum. She is currently enrolled at Bridgewater State University and studying for her BA in Communications and a minor in LGBT studies.
Sara’s goals in her position are to ensure equality and accessibility for people with disabilities and those with intersectional identities, including people of color and those in the LGBTQ+ community. Sara is a strong advocate for inclusive sex education in schools for all gender and sexual identities, and all abilities; extending inclusive special education opportunities to prepare public school students for college and to have the same academic and extra-curricular opportunities as all students; improving accessible public transportation options for people with disabilities who live in small towns; and inclusivity and accessibility in LGBTQ+ spaces such as GSAs, Pride Parades, support groups and centers. She also advocates for non-alcoholic and sensory friendly options for people with disabilities to meet other members of the LGBTQ+ community. Her general hobbies include anime, videogames, music, drawing and fabric painting.
Courtney Waters
Courtney is a Walpole resident and is employed at the Disabled Persons Protection Commission in Braintree where she develops visual supports and social stories.
Courtney has a strong interest in health and medical independence rights for people with disabilities, and advocates for more sexual education in the school systems for people with disabilities. In her spare time, she enjoys spending time with friends and creating art. Courtney’s art has been displayed at the Miss Amazing Pageant each year for the past five years. Her favorite activities are blueberry and strawberry picking, and she is passionate about cornhole and bocce. Parcheesi is her favorite board game.