It has been fairly quiet in the health policy world this week, but there are a number of good webinars coming up and several opportunities for submitting public comments on significant proposed rules, nominations, and Medicaid waivers, as well as concerns and ideas about family caregiving. Please check out the “Medicaid Waivers” and the “Your Input Sought” sections in this week’s Washington Update.
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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.
Charles Smith, MSW, is a development consultant, trainer, counselor, and martial arts instructor. He is the owner/chief instructor of Portland Soo Bahk Do Martial Arts, and the owner/principal consultant at Charles Smith and Associates LLC- providing consultation, training, program develop, and counseling services. His current projects include working with the Rockwood CDC coordinating Grandma’s Hands- engaging Black families and community in sharing cultural food traditions; serving as a Parent Partner at the Oregon Family to Family Health Information Center- serving families of children with special health needs; working with the Sickle Cell Anemia Foundation of Oregon to conduct a needs assessment of parents of Black children with special health needs; serving as co-director for the Black Food Sovereignty Coalition in Portland OR- focused on food production, land access, and economic prosperity for members of the Black community; and serving as the grants and outreach manager for the Know Agenda Foundation in Portland Oregon- focused on individual, family, and community health promotion.
Barbara Katz is the parent of three young adult sons and has been advocating for her middle son, Ben, since his birth 30 years ago. She is employed as Co-Director of Family Voices of Wisconsin and has held that position since 2005. Barbara is the former chair of the Wisconsin Board for People with Developmental Disabilities and currently serves on a variety of local and statewide boards and committees. While Barbara’s undergraduate degree in art and graduate degree in business did not directly prepare her for this work, her life experiences did and continue to inform her professional and volunteer activities.
Debbi Simmons Harris is a Systems Specialist with Family Voices of Minnesota.
An undergraduate of Hamline University in St. Paul, Minnesota, Debbi also holds an M.S. in Health Care Administration, and an M.A. in English and Creative Writing, with a concentration in Nonfiction, Narrative Medicine. She has contributed to various publications, including Existere: Journal of Literature & Arts, Kaleidescope, a literary journal about disability, Today’s Caregiver, Salon.com, and JAMA Pediatrics and Complex Care Journal, The Journal of Pediatric Rehabilitation Medicine, and AAIDD’s Community Living and Participation for People With Intellectual and Developmental Disabilities.
Debbi serves on the American Academy of Pediatrics (AAP) Council on Children With Disabilities (COCWD) Equity, Diversity, and Inclusion workgroup, and is a co-chair for the Academic Pediatric Association (APA) Complex Care and Disability Strategic Partnerships Special Interest Group (SIG).
Debbi lives in Minnesota, where she and her husband Victor, a retired US Marine Corps officer, care for their son Josh, who has complex medical needs and disabilities.
A former Senior Online Marketing Director for Yahoo, Kasey Dudley left her promising career when her son was born at just 26 weeks and unknowingly began her journey of advocacy. In her current role, Kasey is the Project Director for the Parent as Champions Project at SPAN Advocacy. Before taking on this new role, she served as the consulting Program Coordinator) for the Autism Medical Home at Hackensack University Medical Center from 2014-2019. She holds a degree in Marketing Advertising and is also a trained Support Coordination for the New Jersey Division of Developmental Disabilities. Kasey is a certified lactation counselor and a licensed Clinical Massage Therapist who specialized in infant massage and sensory integration for children and adolescents on the Autism Spectrum.
Kasey has demonstrated steady leadership in serving families in underserved communities and children with disabilities. Kasey is a 2019-2020 graduate of the Leadership Education in Neurodevelopmental and Related Disabilities fellowship program, at Rutgers University She is a member of the Center for the Study of Social Policy Brain Trust where she consults with clinical practices across the country to facilitate implementing promising practices that promote the social and emotional health of young children, strengthen the parent-child bond, and improve kindergarten readiness. She has facilitated parent-led Head Start training for early screening, cultural competence panels, round table discussion on Black infant mortality, disproportionality in the education system, and pipeline to prison. In 2014 She wrote and facilitate. The Benefits of Breast Feeding two-part training series to educate minority women in underserved communities in Essex county.
She has been called on as a guest speaker for the American Academy of Pediatrics, Jack &Jill of America, The March of Dimes, and Several pediatric grand rounds.
In January 2021 Kasey was sworn in as a newly elected board member for the Bloomfield Board of education as well as one of 3 newly appointed Commissioners for the Bloomfield Civil rights commission Kasey is a wife mother and caregiver who also has become a trusted advocate, community leader, and resource.
The wife and mother figure in a diverse family with six children blended from multi-cultural and socio-economic backgrounds; brought together by birth, adoption and marriage. From early on Judy has had a heart for helping those hurting whether it is rescuing wild/abandoned animals or candy striping with elderly citizens. Coming from a small rural town in the Northwest Corner and raised with influence from and respect for those in the HealthCare Services field, combined with a family-focused home life, made her professional pursuits inevitably geared towards humanitarian jobs. Her experience over the past 20+ years includes direct care and management of DDS and DCF group homes, supporting and educating individuals seeking to improve their life choices with case guidance planning, organizing events and most importantly advocating and bringing awareness to benefit the underprivileged and misunderstood in her community.
Serkute is a youth activist who is passionate about social justice and the intersection of Black and feminist-focused activism. She leads her high school’s Black Student Alliance and Feminist organization to increase diversity and equity within her community. She is also involved in community projects surrounding bullying (Teens Against Bullying) and human rights in South America as she is self-taught in Spanish. She is planning to study sociology and political science at Stanford University in the fall and plans to take up Arabic to continue her journey as a polyglot.
Encourage confidence to act with the creation of materials and guidance to equip network members to start, lead and sustain conversations to dismantle racism in healthcare of children and youth with special health care needs (CYSHCN).
Nora Wells has worked with Family Voices since its inception in 1992, leading multiple initiatives, in partnership with professionals, around the design and delivery of family-centered quality health care services. She has most recently served as the Director of Programs and as the Director of the Family Voices National Center for Family/Professional Partnerships (NCFPP) before becoming the Family Voices Executive Director in 2014. Through the years she has provided extensive training and technical assistance to family leaders and professionals throughout the country; testified in Congress; and collaborated with numerous federal and private agencies, task forces, and national initiatives, providing the family perspective on policy and practice issues. Nora was the 2015 recipient of the Merle McPherson Leadership Award for her dedication and service. Nora holds a MS Ed degree, and previously worked for the Massachusetts Federation for Children with Special Needs focusing on health and special education; Wheelock College, teaching courses in family professional communication; the Peace Corps, developing international school partnerships; and a U.S. Army Education Center providing educational counseling. Nora brings a deeply personal commitment to our work as the parent of a son with a disability.
Roseani, for the last five years, has dedicated her time to family engagement. Over that time, she supported families of children with special needs to access health services and education appropriate for their needs. With more than a decade of direct work with children with autism and related disorders, she has supported families to improve access to services and participation during the process. She is currently a Program Director at Family Voices National, where she focuses on organizational development across different projects that support underserved communities’, inclusion in all aspects of family engagement and family-centered practices. She is a native Spanish speaker from Puerto Rico and mother of twin boys. She has a Masters in Curriculum and Instruction from Arizona State University, Specializing in Autism from Complutense University in Spain, and a Bachelor’s degree in Psychology and Mental Health from the University of Puerto Rico.
Yetta Myrick is the co-lead of the Family Voices United to End Racism Against CYSHCN and Families project and former Director of Communications at the Parents’ Place of Maryland. Ms. Myrick is the mother of a teenage son diagnosed with an autism spectrum disorder and Intellectual Disability. She is the Founder and President of DC Autism Parents (DCAP), a 501(c)(3) non-profit organization in the District of Columbia, where she oversees the daily operations and has created programs for children and youth diagnosed with autism and their families. Ms. Myrick has served as the CDC’s Act Early Ambassador to the District of Columbia since 2016 and is currently leading the DC Act Early COVID-19 Response Team Project. She holds a Bachelor of Arts Degree in Communication Studies from The Catholic University of America. Ms. Myrick was appointed by DC Mayor Muriel Bowser to serve as a member of the DC Developmental Disabilities Council. Additionally, Ms. Myrick is a member of Interagency Autism Coordinating Committee and the Got Transition® National Family Health Care Transition Advisory Group.
Shea is the mother of 4 children with 3 being formally diagnosed with special needs. She is a trained parent facilitator, and parent mentor with 20+ years of experience as a family advocate promoting inclusion for children and youth with special health care needs and disabilities and organizing against systemic racism. Shea Cleveland is employed with Family Resource Center South Atlantic as the coordinator for a family-to-family health information center known as Access Family Support Health Information Center. She is also the coordinator for the Family Support Network™ of the Greater Triangle which is an affiliate of the Family Support Network™ of North Carolina. She is a board member of the NC Epilepsy Foundation and co-chair of the Wake County Community Collaborative for Children and Families.
Nanfi N. Lubogo, FMCHPHL, CCHW is the co-lead of the Family Voices United to End Racism Against CYSHCN and Families project and serves as Co-Executive Director for PATH CT, a statewide parent support organization for families of children and youth with special health care needs/disabilities. She serves on various committees, councils, and boards both in CT and nationally. Current appointments include: Vice President of the Family Voices Board of Directors, AAP Council on Children with Disabilities (COCWD) EDI Workgroup, National EMSC Family Advisory Network (FAN). Mrs. Lubogo is a former Council member of the National EMS Advisory Council (NEMSAC) where she served as Co-Chair of the Education and Preparedness. Mrs. Lubogo is a Maternal and Child Health/Public Health Leadership Fellow (MCH PHLI) and Partners in Policy Making Graduate.
Cara Coleman is the Director of Public Policy and Advocacy at Family Voices National and the author of “I am Justice, Hear Me Roar” about her daughter, Justice, with special healthcare needs and disabilities. She is an Instructor of Pediatrics at the VCU Medical School. She is Associate Editor for Family Partnerships, Executive Editorial Board of Pediatrics. In the past, Cara has worked as an adult health specialist, a case manager for homeless pregnant women, a counselor in a shelter for battered women, a law clerk for a Judge, immigration subject matter consultant, and an attorney serving low-income immigrants.
Cara is a graduate of the University of Notre Dame, has a Master’s in Public Health from Tulane University and her Law Degree from Temple University. Cara is the 2019 Moose Krause Award winner for Distinguished Service from the University of Notre Dame Monogram Club.
Allysa Ware, MSW is the Associate Director of Programs and Strategies with Family Voices. Allysa has spent the last decade working to improve access to education, medical services, and community supports for children with special health care needs and their families. Additionally, Allysa presents on effective family engagement in systems change at the local, state, and national level. She recently published a chapter in Kotch’s Maternal and Child Health textbook on addressing the needs of children and youth with special health care needs and their families. Allysa received her master’s degree in social work from The Catholic University of America (CUA) and is currently pursuing her Ph.D. in social work at CUA with a research focus of autism diagnosis and treatment in the African-American community. She is licensed by the Association of Social Work Boards as a Licensed Graduate Social Worker (LGSW) in Washington, DC, and Maryland. Allysa is also the proud parent of a 19-year-old daughter with an autism spectrum disorder.
Jama Mohamed is an adult youth ally. In his former role as a Youth Program Coordinator at Family Voices of Tennessee, he facilitated a youth advisory council targeting CYSHCN in partnership with the Tennessee State Department of Health while also developing broader youth programming for Family Voices of Tennessee. Jama is also involved in local advocacy efforts in Nashville, TN. He has been involved in a participatory budgeting project working to empower people to decide together how to spend public money and has been advocating for the removal of the first grand wizard of the KKK, Nathan Bedford Forrest from the Tennessee state capitol.
Moreover, Jama is a former NICU dad whose son was diagnosed with cerebral palsy. After watching a short film that helped him normalize his experience as a parent of a child with a disability, he reached out to Family Voices of Tennessee with an idea to collaborate on a film project. The idea was a creative project for people with disabilities and/or their families to feel included and to be able to share with each other and the community, their experiences, their opinions, and their art. He is currently working as a web developer in Nashville.
Dezmond is a Youth organizer in Charles County Maryland. Instead of taking the common route and joining his student government association, Dezmond has found his own path to lead and serve the youth of his community. Dezmond is founder and president of Charles County Youth For Change, this group consists of over diverse youth in Charles county. Each member of the group is dedicated to bringing positive change in their community. Since creating his youth group last summer Dezmond has made major accomplishments. Dezmond now also serves as his county NAACP youth council president. This allows him to connect with more adults and continue to include youth.
My name is Faatimah Bell and I am a human rights activist and advocate. I am a senior in High School and active in my community, often doing various social justice work. I’d like to work as some sort of youth activist organizational leader during undergrad and continue my social justice work in law school after undergrad. I see myself as a role model for the youth and I will continue to fight for human rights in every Avenue.
Lauren Ware is a freshman at University of Maryland Baltimore County studying flute performance. She has spent her life engaged in the arts but ultimately settled on playing the flute as her passion. Additionally, Lauren has spent her teenage years advocating for African American youth with disabilities through various organizations and public engagements including developing a webinar for the National Institute of Mental Health on healthcare transition. Lauren has interned at the United States Capitol with the Architect of the Capitol and at Family Voices National. She hopes to engage in research and develop programs that increase access to high quality music programs for African American children as she moves through her educational endeavors and into her career as a musician.