I have spent my life actively involved in the disability community — as a special educator, parent, speaker, and advocate. After teaching, then working at the U.S. Departments of Justice and Education, I became the mother of two with varying abilities. Due to their significant/complex health care needs, I managed 24-hour home nursing care, worked with physicians and therapists in fifteen medical specialties, and have overseen approximately 40 hospitalizations, surgeries, or procedures under anesthesia for my children. I have served on numerous local, state, and national boards of disability and healthcare organizations, and educational institutions, and present at conferences across the country.  More recently, due to relationships built through our Florida Family Leaders Network, I stepped into the workforce as the Florida Department of Health’s CMS-Title V Statewide Family Leader.  I view FFLN as an important addition to our various state organizations that focus on CYSHCN.

The FFLN goal to engage a diverse, state-wide network of family and youth leaders together with our related interdisciplinary workforce will greatly strengthen the partnership perspective of “all together learning together” to impact the lifespan care of Florida’s children, youth, and young adults.

I am the mother to two wonderful and amazing children, each one with their own unique needs. My journey into the disability community started 8 years ago, and it has been every bit marvelous as it has been challenging.  

I am a Family Resource Specialist, at Gulf Central Early Steps, where I represent family interests to my local office and in our community, fostering collaborative relationships with organizations that impact families, and providing families access to resources that will increase their advocacy skills and understanding of their child’s unique needs. I am involved in the local, state, and national levels in various boards, councils, stakeholder groups, cohorts, and committees, including the Executive Committee for the FFLN. 

My knowledge of family engagement and family leadership has come from both my personal experiences, and the experiences of the many families, self-advocates, and champions that I’ve had the fortune of learning from. Navigating the educational, medical, and social landscape for our children with disabilities is an ever-changing path.  I’m confident that my involvement in FFLN is helping me to grow both professionally and personally, becoming the best advocate I can for my family and for all families throughout Florida. 

I am Pablo Saldana, Ph.D., LCSW and I am the Manager of Patient & Family-Centered Care at Nemours Children’s Specialty Care at Jacksonville.  I am a Licensed Clinical Social Worker and hold a Ph.D. from the University of Florida in Rehabilitation Science.

As the PFCC manager, I facilitate both our Family and Youth Advisory Councils which have been instrumental to our success in this area.  These advisory councils have been operating capably for several years.  Our FAC, made up of a core group of parents as advisors, has been in operation since 2013. The members are a cross-section of parents representing patients seen in a variety of clinics and meets on a quarterly basis.  Our YAC which also represents an array of patients, formed in 2015 and meets five times during the school year.

I am a strong believer in building family-professional partnerships and in the FFLN.  The FFLN is the vehicle that is bringing together the champions who serve children and youth with special healthcare needs throughout the state and thus serves as a great networking resource.  What I value most about the FFLN is the synergy of bringing family/youth leaders and professionals together to develop best practices and learn leadership skills together.  I look forward to seeing the FFLN continue to flourish and representing diverse stakeholders in Florida, including the youth voice.

Abraham A. Salinas-Miranda, MD, PhD, MACE, CDVS: I am a trained physician with specialization in pediatrics and neurodevelopment and a public health research scientist specialized in family violence prevention. I am the Director for the Harrell Center for the Study of Family Violence and the Co-director of the USF Center of Excellence in Maternal and Child Health (HRSA-funded, MCH Training program) at the College of Public Health, University of South Florida. I truly believe that family-professional partnerships are the cornerstone for the success of maternal and child health programs and improve family health in Florida.

The FFLN uniquely brings us together – all the partners who serve children and youth with special healthcare needs. Thus, we value the FFLN for the leadership model it provides to our students and faculty in the MCH training program at USF. It helps us remain engaged and relevant for the families and communities we serve through multiple public health programs. We are confident that the FFLN will grow and thrive to become a state-wide hub of family leaders and champions that represent the voices of diverse families and services in Florida

I am Pam Kissoondyal, the parent of a young adult with several medical diagnoses, including Autism. In general, my daughter, Jessi, requires special health care needs. I believe that being a partner with providers is not only important but, essential for the best outcomes.  I am the family engagement coordinator at the Florida and Virgin Islands Deaf-Blind Collaborative, which serves individuals from birth to age 22, with a combination of both vision and hearing loss that affects their education. One of our program initiatives is supporting families, which can include navigating the system that serves children with special health care needs. Having the “lived experience” certainly facilitates this process to benefit all involved. I feel honored to be part of the FFLN family.

The FFLN has offered opportunities to bring family/youth leaders and professionals together in an effort to break down the silos that impact the care our children receive. Working together builds collaborative partnerships that can flow into system change and improvement for healthcare for our children with special health care needs. From building awareness, skills, sharing resources, honest conversations with mentors, champions, and new leaders – it’s awesome!  This effort is not easy, but, together it is possible. 

I am the parent of two children. My youngest son is a young man with special healthcare needs. Since birth, my son has needed multiple surgeries and acute medical care. Along with my husband, I have always been a partner in his care, collaborating closely with his doctors, nurses, and therapists.

Since 2007, I have worked as a Family Resource Specialist for the University of Florida North Central Early Steps. UF North Central Early Steps (UF NCES) provides early intervention supports to families of children birth to 36 months of age with a developmental delay or a disability. Our mission is to collaborate with families and caregivers to build upon their strengths by offering coordination, supports, and resources to enhance children’s learning and development. In my role, I help others navigate the early intervention program and other systems that serve children with special healthcare needs.

I have been part of FFLN since its beginning. FFLN is a point of reunion, a partnership, where family/youth leaders and professionals come together to learn from each other and support each other’s initiatives. Participating in FFLN helps me to connect and promote the systems change needed to improve the care our children and families receive.

I am Elise Bloch, mother of Franklin, a young adult (pediatric cancer survivor with chronic health issues) and an FFLN member.   In my many roles as a mother, pediatric occupational therapist, and educator, I recognize that partnership with families is crucial for the best health care outcomes and family quality of life.   I have been involved for over ten years with the Patient and Family Advisory Council at Joe DiMaggio Children’s Hospital in Hollywood where Franklin was treated from age 6-11.  I currently serve as Chair of the Patient and Family Advisory Council (PFAC), and have spearheaded PFCC education to medical and nursing residents, along with other house staff of the system.  The PFAC works tirelessly to support families, enhance health literacy, and patient and family-centered service delivery throughout the system. 

Our medical systems are strained, fragmented, and difficult to navigate for families. Here in Florida, we have a diverse community with many non-English speakers who are more at risk for health care errors and need support.  FFLN provides a critical service in connecting families to bridge the gaps, educate parents, bring together critical players for collaboration, and support the individual needs of communities to enhance these crucial partnerships and ensure continuity of care.  Elise reports “It has been exciting and inspiring to attend FFLN conferences – FFLN has brought together the many individual family members from their respective communities to improve the health and well –being of families throughout the entire state.