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ABSTRACT INFORMATION
Title: 'The Cycle of Support: Supporting Families through EHDI and Beyond' Track: 8-Program Evaluation and Quality Assurance Audience: Primary Audience: State Health Department Secondary Audience: Early Intervention Provider Tertiary Audeince: Advocacy Group Keyword(s): parents, support, information, representation Learning Objectives: A. Participants will be understand the keys that lead to effective support for families B. Participants will learn useful tools that families can utilize in order to be supported beyond initial diagnosis of a child with hearing loss C. Participants will gain insight through stories into some of the challenges and considerations that families face in feeling supported through medical, educational, and communication choices for their children. Abstract: The growing trend towards formalized family support in EHDI to families at the time of identification through the national H&V GBYS program and others is only the starting point for consideration. This session will explore the concentric circles of support families need, and the evolution for families - from receiving support to providing support to representing families systemically. This session offers practical advice on how to ensure that the family is supported throughout their journey – beyond initial diagnosis. Additionally, different models of obtaining the ‘parent perspective’ will be addressed – from utilizing surveys, focus groups, and trained parents who can represent more than just their ‘own’ story. Presentation(s): Not Available Handouts: Not Available
SPEAKER INFORMATION
PRESENTER(S): Janet DesGeorges - Hands & Voices      Credentials: n/a       Janet DesGeorges lives in Boulder, Colorado with her husband Joe and is mom to three daughters, including Sara, who is hard of hearing. She is the Executive Director of Colorado Families for Hands & Voices, and is a co-founder and part of the national staff at Hands & Voices, Inc. as the Outreach Director. Janet has presented to groups nationwide and internationally about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges is the co-author of a chapter on Educational Law for Deaf/hh students, a contributing author to the NCHAM e-book, and many other publications. She currently serves on the national faculty for the NICHQ EHDI Learning Collaborative, as well as the Marion Downs Center Advisory, and co-chairs the CDC Parent-to-Parent Committee. Candace Lindow-Davies - Hands & Voices Headquarters      Credentials: President, Hands & Voices Headquarters       Candace Lindow-Davies, Minnesota Hands & Voices, is the mother of a son who is profoundly deaf, and for the past eight plus years, developed and coordinated services for MN Hands & Voices/Guide By Your Side at Lifetrack Resources in Minnesota . For seven years, Candace has also served as a parent consultant for the MN Dept. of Health's Newborn Hearing Screening Program. She also chairs the MN Dept. of Health's Newborn Hearing Screening Advisory Committee, representing parents of children who are deaf and hard of hearing. Carrie Balian - IL Hands & Voices, Guide By Your Side      Credentials: IL Hands & Voices Guide By Your Side Program Coordinator, CHOICES for Parents Coordinator, Parent of a child with hearing loss, Bacehlor's of Science in Marketing and Management      Other Affiliations: CHOICES for Parents       Carrie Balian is the mother of four children. Her oldest child, Jack, was born deaf. She is the Coordinator of Hands & Voices, Guide By Your Side in Illinois and CHOICES for Parents. Carrie has presented to groups nationwide, co-authored several publications including the 2012 NCHAM e-book. Carrie served for two years on the EHDI meeting planning committee and is still a member of the Illinois Universal Newborn Hearing & Screening Advisory Board. Carrie has also participated as a parent professional on the NICHQ national and statewide learning collaborative teams and is also a Board Member of Illinois Hands & Voices. During this journey of representing other parents she has been recognized and awarded both nationally and locally for her support, commitment and leadership in the field. Her educational background includes a Bachelor’s degree in Marketing and Management.   AUTHOR(S): Janet DesGeorges - Hands & Voices      Credentials: n/a       BIO: Janet DesGeorges lives in Boulder, Colorado with her husband Joe and is mom to three daughters, including Sara, who is hard of hearing. She is the Executive Director of Colorado Families for Hands & Voices, and is a co-founder and part of the national staff at Hands & Voices, Inc. as the Outreach Director. Janet has presented to groups nationwide and internationally about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges is the co-author of a chapter on Educational Law for Deaf/hh students, a contributing author to the NCHAM e-book, and many other publications. She currently serves on the national faculty for the NICHQ EHDI Learning Collaborative, as well as the Marion Downs Center Advisory, and co-chairs the CDC Parent-to-Parent Committee. Carrie Balian - IL Hands & Voices, Guide By Your Side      Credentials: IL Hands & Voices Guide By Your Side Program Coordinator, CHOICES for Parents Coordinator, Parent of a child with hearing loss, Bacehlor's of Science in Marketing and Management      Other Affiliations: CHOICES for Parents       BIO: Carrie Balian is the mother of four children. Her oldest child, Jack, was born deaf. She is the Coordinator of Hands & Voices, Guide By Your Side in Illinois and CHOICES for Parents. Carrie has presented to groups nationwide, co-authored several publications including the 2012 NCHAM e-book. Carrie served for two years on the EHDI meeting planning committee and is still a member of the Illinois Universal Newborn Hearing & Screening Advisory Board. Carrie has also participated as a parent professional on the NICHQ national and statewide learning collaborative teams and is also a Board Member of Illinois Hands & Voices. During this journey of representing other parents she has been recognized and awarded both nationally and locally for her support, commitment and leadership in the field. Her educational background includes a Bachelor’s degree in Marketing and Management.