By Rene Powell, M.P.H.
Parents of children who are deaf and hard of hearing have reported feeling isolated, not having enough information and resources to help their children live their best lives, and not having the skills necessary to navigate the systems of care.1 Literature shows that families value a connection to other families with shared experiences. “Families rank family-to-family support as one of the most helpful forms of support for the family.”2,3 “Parents/families reporting participation in social networks with other parents/families had less isolation, greater acceptance of their child, and improved interactional responsivity.”4
Family-to-family/parent-to-parent groups educate, empower, and encourage parents of children with special health care needs including those who are deaf/hard of hearing with the wisdom of walking down a familiar life path from birth to adulthood. Oklahoma Family Network (OFN) serves people with all special health care needs and disabilities including those who are deaf and hard of hearing, their families, and communities by connecting them to resources and supports.
OFN staff are parents who have children with special health care needs and have experienced similar circumstances and feel that no family should go it alone. OFN provides emotional support by connecting families with other families in additional to other community resources and training opportunities.
OFN partners with local, state, and national agencies, programs, and organizations including the Oklahoma Newborn Hearing Screening Program. Annually, OFN hosts the Joining Forces Conference, a family-professional partnership conference, where participants gather to obtain knowledge and tools to collaborate in support of those with special health care needs and disabilities in Oklahoma.
Families of children with special health care needs and disabilities including those who are deaf and hard of hearing may fall through the cracks going unnoticed when support is available. Pediatricians are encouraged to refer families to Oklahoma Family Network so they may be connected with support, information, and resources. Families may contact the Oklahoma Family Network by visiting www.oklahomafamilynetwork.org or by calling 1(877) 871-5072.
References:
1 Belhorn T et alt. Family-to-family Support Program Guidelines for Addressing the Needs of Families who have children who are deaf/hard of hearing (D/HH):1-20
2 Jackson CW. Family involvement in early intervention for children who are deaf or hard of hearing. Early Childhood Services. 2009;3(1):77–97.
3 Jackson CW, Wegner JR, Turnbull AP. Family quality of life following early identification of deafness. Lang Speech Hear Serv Sch. 2010;41(2):194–205
4 Hintermair M. Hearing impairment, social networks, and coping: the need for families with hearing-impaired children to relate to other parents and to hearing-impaired adults. Am Ann Deaf. 2000;145:41–53