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ABSTRACT INFORMATION
Title: 'Strong Families, Strong Future: Acting Today to Support Families with Young Children with Hearing Loss' Track: 6-Family Issues Keyword(s): family, support, newborn, hearing Learning Objectives: Learn new ideas to engage families in the EHDI process. Outline the importance of having an effective centralized system of support and resources for families. Enage families as a way to improve loss to follow-up. Abstract: Massachusetts Department of Public Health has a vision to provide strong leadership to create positive outcomes for children with hearing loss and their families. Massachusetts successfully screens >99% of infants for hearing loss at birth. Over the last 10 years, over 2,000 infants were diagnosed with permanent hearing loss. The diagnosis of hearing loss is often unexpected and can be overwhelming for families. There is tremendous pressure early after diagnosis to make complex decisions that could have life-long implications for communication. Using data and family stories, we will demonstrate how knowledge and support lead to strong family participation that results in positive and improved outcomes, today and tomorrow, for children and families. The Massachusetts Early Hearing Detection & Intervention program has launched a five-year plan to be sure families whose children have hearing loss maximize the potential for positive long-term outcomes. In this presentation, we will outline the importance of having an effective centralized system of support and resources for families and highlight the collaboration between the EHDI program and the Office of Family Initiatives that blends resources to enhance possibilities for families. This includes encouraging family participation in and satisfaction with leadership, education, intervention, support, and networking activities. Access to family support at diagnosis and throughout early childhood will be discussed and data will be provided on early participation in intervention services. Information gathered through parent focus groups, key stakeholder interviews, and family satisfaction surveys will be discussed. Useful experiences and lessons learned that translate to other public health programs as well as specifics about opportunities for family engagement, skill building and support will be presented. Presentation: This presentation has not yet been uploaded or the speaker has opted not to make the presentation available online. Handouts: Handout is not Available
SPEAKER INFORMATION
PRESENTER(S): Richard Wentworth - Public Health      Credentials: parent       Richard is the parent of a young child with hearing loss and the Family Outreach Specialist for the MA Newborn Hearing Screening Program. He is also has interest in art and graphic design. Janet Farrell - Department of Public Health      Credentials: BA      Other Affiliations: DSHPSHWA, New England Regional Genetics Group       Ms. Farrell is the Program Director of the Massachusetts Department of Public Health, Universal Newborn Hearing Screening Program. She is also the Project Director of a Centers for Disease Control and Prevention Cooperative Agreement and Maternal and Child Health grant. She is a senior manager in the Children and Youth with Special Health Needs Program in MA.   AUTHOR(S): Janet Farrell - Department of Public Health      Credentials: BA      Other Affiliations: DSHPSHWA, New England Regional Genetics Group       BIO: Ms. Farrell is the Program Director of the Massachusetts Department of Public Health, Universal Newborn Hearing Screening Program. She is also the Project Director of a Centers for Disease Control and Prevention Cooperative Agreement and Maternal and Child Health grant. She is a senior manager in the Children and Youth with Special Health Needs Program in MA. Suzanne Gottlieb - MA Dept. of Public Health      Credentials: BA       BIO: Suzanne Gottlieb is the Director of the Office of Family Initiatives at the Massachusetts Department of Public Health. She oversees several family staffed projects and ensures that families whose children have special health needs receive training, mentoring and support to develop lifelong leadership and advocacy skills, have access to information and referral and parent to parent support. As a manager in the Title V CYSHCN Program,she works across programs to create partnership opportunities that enable families to impact policy and program development, program implementation and evaluation. Ms. Gottlieb has over 25 years experience teaching children and youth with disabilities and facilitating family involvement in systems change activities. She is the parent of a young adult with special health needs and has learned first hand the importance of a knowledgeable, empowered family constituency in making systems of care family centered, meaningful and accountable.