Early Intervention and Babies Born Prematurely
By Diana Autin
Statewide Parent Advocacy Network of New Jersey
Babies who are born prematurely are more likely to have disabilities and developmental delays, including cerebral palsy, visual and hearing impairments, respiratory problems and cognitive disabilities. In New Jersey, babies who are born prematurely and/or who are born with disabilities or developmental delays are automatically registered with the electronic Birth Registry. The New Jersey Department of Health and Senior Services’ Special Child Health Services Registry is a confidential record of infants and children who have birth defects and special health care needs or who are at risk of developing such needs. Infants and children with a birth defect diagnosed through five years of age must be reported to the Registry.
Early intervention services are designed for infants and toddlers with disabilities and developmental delays, including babies who are born prematurely. Infants with birth defects and special healthcare needs who are reported to the Registry are referred to New Jersey’s Early Intervention System, part of the Department of Health and Senior Services’ Division of Family Health Services. To help families, professionals, and advocates decide whether or not a baby could be eligible for early intervention services, the Department developed and disseminates a parent-friendly brochure, Your Child’s Development: Important Milestones (Birth-36 Months). The brochure gives information on critical developmental milestones in the areas of movement, language, hand and finger skills, and social-emotional development. It also summarizes the eligibility criteria for early intervention in New Jersey, what an early intervention evaluation will tell the family about their child, available resources, and how to contact the early intervention system.
The mission of the New Jersey Early Intervention System is to enhance the capacity of families to meet the developmental and health-related needs of children birth to age three who have delays or disabilities by providing quality services and support to families and their children. The Early Intervention System is committed to having families from diverse racial, cultural and socio-economic backgrounds be involved in decision-making at every level of the design, implementation and evaluation of the Early Intervention System.
In 2008, the New Jersey Early Intervention System regionalized the system point of entry for referral of infants and toddlers with developmental delays and disabilities. Families and primary referral sources call one toll-free number to start the process. To start the evaluation process, families are connected to evaluation teams and evaluation Service Coordinators housed at the four Regional Early Intervention Collaboratives (REICs). The REIC Boards include parents, providers, and community representatives. The REICs ensure that potentially eligible infants and toddlers, including babies born prematurely, receive a comprehensive evaluation and assessment to determine eligibility and identify their strengths and needs as well as their family’s priorities, resources, and concerns. Once a baby is determined to be eligible, an Individualized Family Services Plan (IFSP) is developed with the family, containing needed services for the infant or toddler as well as their family.
At this point, a Service Coordinator from the Service Coordination Unit in the county where the family lives assumes responsibility to ensure that needed services are provided. The Service Coordinator also connects families to other needed supports including those offered by the Statewide Parent Advocacy Network’s Parent to Parent program, Family Voices and Federation of Families for Children’s Mental Health chapters, Family to Family Health Information Center, Parent Training and Information Center, or New Jersey Inclusive Child Care Project, as well as other supports such as disability-specific organizations, Family Support Center, and other state agencies such as the Division of Developmental Disabilities.
The REICs are available to provide ongoing information to families and providers in the Early Intervention(EI) system. Each REIC has full or part-time Family Support Coordinators who are parents of children with disabilities. The Family Support Coordinators facilitate workshops including “Welcome to EI” and “Transition from EI to Preschool.” They answer parent questions, help resolve disagreements between parents and their service providers, and work to develop parent leadership. They also represent a family voice within the early intervention system. The REICs provide professional development to service coordinators and service providers on topics such as procedural safeguards, providing services in natural environments, and providing family-centered services.
In most counties, the Service Coordination units are housed in the same site as the county Special Child Health Services Case Management Units (SCHS CMUs). Case managers at the SCHS CMUs provide case management services for children and youth with special healthcare needs through age 21, and their families. Having Service Coordinators and Case managers housed at the same agency makes the transition process smoother for families. Both the early intervention system and the SCHS CMUs are part of the Division of Family Health Services Using funds from New Jersey’s Title V agency, the Parent Training and Information Center grant, and the Integrated Systems for Children and Youth with Special Healthcare Needs grant, SPAN houses part-time Family Resource Specialists at each of the 21 county SCHS CMU to provide information, technical assistance, and support to families, especially at the transition to preschool stage when families move from one system (early intervention) to a very different system (preschool special education).
Service coordinators also connect families to other resources such as New Jersey’s Catastrophic Illness in Children Relief Fund, which helps families pay for uncovered medical expenses; health insurance including Medicaid, Family Care (New Jersey’s Children’s Health Insurance Program), and Family Care Advantage (for families of any income who do not have insurance for their children; families can “buy into” a CHIPRA-comparable health plan for their child at the state rate, which is much less expensive than purchasing insurance at market rates, especially for children with disabilities and special healthcare needs).
Because of the early intervention service coordination and SCHS Case management services provided by the Division of Family Health Services, and the partnership with SPAN, the state’s Parent Training and Information Center, Family to Family Health Information Center, and Family Voices chapter, families of babies born prematurely in New Jersey have access to a wide array of services and supports to help them maximize the healthy development of their baby and address the special needs that often accompany prematurity.