Families who have children with special needs can be powerful partners in programs aimed at preventing birth defects and developmental disabilities by sharing their experiences and recommendations for needed services and effective, equitable, culturally appropriate approaches.

Improving Pregnancy Outcomes For Families: Model Programs Of The Span Parent Advocacy Network

BY LAUREN AGORATUS, M.A.

Started over 30 years ago as an organization supporting families of children with special needs, the SPAN Parent Advocacy Network has, for the last five years, been working to help families improve birth outcomes and reduce birth defects and developmental disabilities. These initiatives include improving prenatal care, training and connecting community doulas to women of color, reducing unnecessary Caesarian births, and preventing and addressing fetal alcohol syndrome disorders.

Improving Birth Outcomes

Improving pregnancy care results in better birth and long-term health outcomes for women and children. A pilot program helped families access pre- to post-conception care to improve maternal and infant health. Good prenatal care was a key component. This pilot helped prevent pre-term births and low birth weight babies, and decreased infant mortality to address the disturbing reality that, in NJ, black infant and maternal mortality rates are three times that of peers.1 The project involved other community-based agencies, service providers, and county/municipal agency representatives who met quarterly via a Birth and Breastfeeding Coalition.

The Improving Pregnancy Outcomes Project (IPO), a five-year initiative, took a wholistic approach to focus on the whole child and family including health/mental health, education, child care, human services, and child welfare/prevention. Outreach was targeted to communities of color, immigrants, low income women, women with health conditions, uninsured women, and families with multiple social or economic factors. Family Resource Specialists/Community Health Workers linked families to prenatal care, one-to-one assistance, and peer support groups. The PRAMS (Pregnancy Risk Assessment Monitoring System) was used to determine population-based data on maternal health. Pre-conception was identified as a critical time to address maternal health conditions. A pregnancy risk assessment was used to determine which women were at high risk of increased infant morbidity or mortality. Previous experience with miscarriage, stillbirth, low birth weight, or infants born with health conditions were considered. Parent leadership development is an integral component of each of SPANs health programs, and IPO provided leadership training and support to women leaders from the targeted communities. IPO parent leaders identified the critical need for prenatal and birth support for women in the region and an interest in building their own capacity to provide peer support for women in their community before, during and after birth. Based on parent leader input, SPAN developed a small Community Doula project and, after two years of implementation, has been awarded a grant from the NJ Department of Health to expand the Community Doula program.

Preventing Adverse Birth Outcomes

Improving pregnancy outcomes also lowers adverse birth events in general. Although not all adverse events can be prevented, the Partners for Prevention of Birth Defects and Developmental Disabilities addressed Fetal Alcohol Syndrome Disorder (FASD) which affects in 20 babies.

With funds from the US Centers for Disease Control and Prevention via the NJ Department of Health, SPAN facilitated a Statewide Partners for Prevention Stakeholders Task Force. The Task Force was comprised of local/county/state government agencies, service providers, non-profit organizations, and family leaders. The Stakeholders Task Force provided an opportunity for those who were interested in and working on prevention activities to share their work and together develop plans to enhance available services and supports.

The NJ Governor's Council on Prevention of Developmental Disabilities has also provided several years of funding to SPAN to facilitate prevention activities. A two-year grant provided funds for SPAN to train primary care providers in effective strategies to communicate health promotion/ prevention messages to diverse women of child-bearing age, " This two-year pilot conducts educational sessions targeting high school youth and is designed to increase their knowledge about the social determinants of health, the impact of alcohol use on health, and FASD prevention. There are many ways that organizations "I am glad to see this in my community and for my sisters" and to provide support groups and individual support for women.

A second two year grant is funding continuing work directly with underserved women as well as education for future parents. Through parent leadership development, trained peer mentors support diverse women in their community to reduce the risk of having a baby with a birth defect or developmental disability and improve health by linking women to social and community support systems. SPAN also developed and is implementing a high school pilot project in three geographically diverse New Jersey regions to get to future parents as early as possible.

This two-year pilot conducts educational sessions targeting high school youth and is designed to increase their knowledge about the social determinants of health, the impact of alcohol use on health, and FASD prevention.

There are many ways that organizations can partner with families to help improve pregnancy outcomes and prevent some adverse birth events.

Families who have children with special needs can be powerful partners in programs aimed at preventing birth defects and developmental disabilities by sharing their experiences and recommendations for needed services and effective, equitable, culturally appropriate approaches. Hopefully these models will generate ideas that can be replicated to improve birth outcomes for families, especially those who face the greatest disparities and challenges. •

ABOUT THE AUTHOR: Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state's Family-to-Family Health Information Center, both housed at SPAN, found at spanadvocacy.org

How Doulas Help Families

One of the key areas of the Improving Pregnancy Outcomes project was the use of Community Doulas. Outreach was done to seek women representative of SPAN's targeted communities who wished to serve as Doulas to be trained and connected to women needing Doula support. Another IPO initiative was the Essex County Birth and Breastfeeding Coalition, whose mission was to cultivate equity to support positive birth outcomes and breastfeeding for all families. The vision of the Coalition was that families would:

➢ have access to breastfeeding resources ➢ get education/support on reproductive health decisions ➢ have access to providers using evidencebased education and culturally appropriate care ➢ have their community recognize the value and importance of birth and breastfeeding and impact on development of current and future generations.

Coalition partners included SPAN Parent Advocacy Network, Visiting Nurses Association, Montclair State University-Center for Autism and Early Childhood Mental Health, and Families for Equity. accept support and services, it was good to be connected to my doula as I was scared and had no one to support me from my family" ~ B.N. "