The Oklahoma Family Network (OFN) is a statewide, non-profit agency that supports Oklahoma families with critically ill infants or children with special health care needs or disabilities. Our flagship program, Oklahoma’s statewide Parent-to-Parent Mentorship Program, provides informational, educational and emotional support to Oklahoma families of children with any type of special need. The Family-to-Family Health Care Information Resource Center Program provides healthcare information and education, empowering families of children with special health care needs to care for their children to support good long-term outcomes.
The OFN Administrative Director and Regional Coordinators carefully match referred families with trained veteran families to provide hope, support, encouragement and assistance in locating resources that can benefit their child. Studies consistently show that children with special needs and critically ill children are more likely to experience a positive outcome when the parents are actively involved in their care. Thus, we are strong advocates for family-centered care in all Oklahoma hospitals, residency programs, and other related medical fields and education settings.
Our organization was founded by Dr. Edward Co, a Neonatologist at Integris Baptist Medical Center, in November of 1996. Initially called the Neonatal Parents Network of Oklahoma (NPN), the agency focused on support for families who had premature and critically ill babies in Oklahoma City NICUs. Expansion into a statewide program began in early 1999 and we soon discovered that as these babies grew, they experienced a variety of special health care and learning needs. In October of 2002, NPN merged with the Special Parents Access Network (SPAN)–which had been founded by Traci Castles and SoonerStart–and was dedicated to serving children in the SoonerStart program. The synergy created by this merger has been phenomenal. Oklahoma Family Network has the only statewide parent-to-parent support network and has served thousands of families throughout our state. In June, 2008, OFN was awarded the Family-to-Family Health Information Center grant by the Maternal Child Health Bureau of the Health Resources Services Administration. This grant has allowed us to develop a good administrative foundation, increase our span of coverage and focus on underserved populations in Oklahoma.
Parents often feel isolated and frightened when their child receives a diagnosis of a critical medical or special health care need. Often, they don=t know anyone that has experienced a similar diagnosis, and they have no idea how start navigating the complicated medical and educational systems so they can help their child. Their lives are forever changed and the emotional burden can be tremendous. OFN exists so that families are not left on their own to struggle down the path that is ahead of them. We are here to give them hope, courage and the ability to cope with the challenges that lie ahead. We offer assistance that will support them along the way and training that will point them to appropriate resources so they can be an effective advocate for their child.
More than 2,000 children will enter Neonatal Intensive Care Units (NICUs) in Oklahoma this year. Approximately 2,000 more will have to visit a surgical, medical or Pediatric ICU in Oklahoma. Thousands more will receive a diagnosis of a learning disability, genetic disorder or other special health care need. OFN can offer vital, life changing assistance to all of these families through our Parent-to-Parent Mentorship and ICU Visitation Programs. Currently OFN is the only agency that offers this type of support and resource coordination from the family perspective.
OFN supports each family referred to our agency in the way they prefer. Our trained Supporting Parents can provide support in finding resources, hope, and encouragement as the family parents their child. We will provide them with information regarding developmental assistance, professional services, navigating school and medical systems, and other programs that can benefit their child. We will provide these same services to families who have older children with newly diagnosed special needs or disabilities.
Each of our veteran Supporting Families has learned through personal experience how difficult life can be when a child is diagnosed with a condition that may affect them for the rest of their life. Although medical professionals provide important support and information, there is simply no substitute for being able to talk to someone who has been there, done that. This type of support is priceless and is the only such program offered in Oklahoma.
The Supporting Parent Program provides benefits that reach beyond just the families in need. Many of our current trained Supporting Parents were once frightened parents themselves. As recipients of the assistance offered by OFN, they have become confident parents who are educated advocates for their children and others like them in their communities. They participate in OFN as a way to give something back and to perpetuate the positive cycle of acceptance for children with special health care and/or disability needs in Oklahoma. As families support other families they begin to develop a more global perspective of the needs of families in Oklahoma who are parenting a child with special needs. This globalization of perspective is important as OFN identifies opportunities for family leadership and partnership with agencies and other organizations.
In summary, the expected outcomes of the many programs of The Oklahoma Family Network are to:
- Increase the capacity of Oklahoma families to access community-based resource information and services to ensure children with special health care needs (CSHCN) and their families have the support they need to obtain services and have a way to pay for them.
- Increase the capacity of Oklahoma families to access current, evidence-based healthcare information to promote informed treatment decisions, cost-effectiveness and improved outcomes for CSHCN.
- Strengthen statewide support of CSHCN by identifying, mentoring, and training Family Leaders (family members who have demonstrated leadership skills) to partner in decision–making with professionals at all levels in the systems that serve them.
- Develop and implement a data collection system and evaluation measures to assess project effectiveness.