Resources for Families of Children with Retinopathy of Prematurity (ROP)

Resources from Prevent Blindness

The National Center for Children’s Vision and Eye Health at Prevent Blindness offers resources on your child’s developing sight, including approaches you can take to support vision and eye health throughout their life.

Prevent Blindness offers information on a variety of children’s vision conditions, financial assistance resources, advocacy training through storytelling, and support for individuals with vision loss and their care partners.

Support and resources for families of children with ROP, other vision conditions, and infant health

Hand to Hold provides resources and support to parents during and after their babies leave the NICU through virtual peer support groups, parent-to-parent mentoring, an app, counseling, educational materials, and podcasts.

The National Coalition for Infant Health provides resources and education promoting patient-centered care for premature infants and their families.

The American Academy of Ophthalmology (AAO) provides information on treatments for ROP and resources for finding an ophthalmologist in your area.

The National Eye Institute provides information about ROP and current research.

March of Dimes provides support for families of premature infants in the NICU, as well as advocacy, research, and lifelong support for issues related to prematurity, maternal and infant health.

Healthychildren.org (sponsored by the American Academy of Pediatrics) provides information for parents on newborn eyesight and warning signs of vision problems in children.

Blind Children’s Resource Center is dedicated to helping visually impaired children be independent, functional members of society.

Infantsee® provides no-cost comprehensive eye and vision assessment for infants 6-12 months old regardless of a family’s income or access to insurance. The website includes a parent center with helpful information on baby’s developing eyes, what to expect at an appointment, and other ways to help with infant vision development.

Early Intervention Services

What are early intervention services?

Children from birth to age 3 with vision loss may be eligible for Early Intervention services. Early intervention provides support and resources to help family members and caregivers in enhancing their children’s learning and development. Every state provides these services to eligible children and their families through the federal Individuals with Disabilities Education Act (IDEA).

IDEA outlines the educational services for children birth to 21 with disabilities and developmental delays, including those who are blind or have low vision. For children under age 3 years, Early Intervention will write an “Individualized Family Service Plan” or “IFSP.” Every family works with a service coordinator and a team that offers services based upon a child’s needs. For young children with ROP or other vision loss, a functional vision assessment is important. Learn more at Functional Vision Assessment (FVA) – ConnectCenter. Families can request this assessment by your Early Intervention program.

Find early intervention in your state.

Early Intervention Resources

The Individuals With Disabilities Education Act (IDEA) Part C program of the U.S. Department of Education’s Office of Special Education Programs (OSEP) promotes the development of infants and toddlers with delays or disabilities, enhances the capacity of families to meet the developmental needs of their infants and toddlers, minimizes the need for special education and related services when children enter school, and enhances children’s long-term outcomes.

The STEM Innovation for Inclusion in Early Education (STEMI2E2) Center promotes and supports early learning in Science, Technology, Engineering, and Math (STEM) for young children with disabilities. The STEMIE Resources page have a wealth of information for families and educators.

The Centers for Disease Control and Prevention (CDC)’s “Learn the Signs. Act Early” program supports early identification of developmental delays and disabilities. Find Your Act Early Ambassador and learn how these Ambassadors and others across the nation are promoting early identification.

The Early Childhood Technical Assistance Center (ECTA) supports state systems to implement equitable access, services, and supports for children with disabilities and their families. ECTA has developed resources For Families (in English and Spanish) to help parents and caregivers support their children’s developmental needs and partner with professionals to achieve their goals for their children.

Other Resources for Parents and Families

The Center for Parent Information and Resources (CPIR) provides a hub of resources for the network of Parent Centers. All the materials found on the CPIR Hub have been created and archived for Parent Centers around the country to provide support and services to the families they serve. Visit the CPIR Online Resource Library for information (in English and Spanish) on topics including Early Childhood, Early Intervention, Writing the IFSP for Your Child, and Parent Participation in Early Intervention.

The American Printing House for the Blind (APH) is home to FamilyConnect®, an online resource to support families, children, and their medical and educational team members. FamilyConnect provides tips, ideas, information, and personal stories to support families in raising children with visual impairments. The Directory of Services organizes resources by state or category, including agencies, schools, camps, and other offerings.

Children born prematurely are at risk for several vision conditions besides ROP, including Cortical/Cerebral Vision Impairment (CVI). Find more information at Getting started with CVI assessments – Perkins School for the Blind.

Organizations providing support for families of children with special healthcare or learning needs

SPAN Parent Advocacy Network empowers families as advocates and partners in improving education, health/mental health and human services outcomes for infants, toddlers, children, youth, and young adults. SPAN works in New Jersey and nationally to provide resources, support, leadership engagement and training, and advocacy for families of children and youth with special health care needs.

Parent Training Information Centers (PTIs) located in each state provide education and training to parents of children with disabilities up to age 26.  PTIs help parents participate effectively in their children’s education and development and partner with professionals and policy makers to improve outcomes for all children with disabilities.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities which provides support to families of CYSHCN. Family Voices offers state affiliates as well as opportunities to develop leadership skills for families, particularly those from underserved and underrepresented populations. Family Voices has state affiliate organizations to assist families.

Family-to-Family Health Information Centers (F2Fs) located in each state are family-led organizations that provide engagement and support to families of children and youth with special health care needs (CYSCHN).