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Investing in Family Support Participant Evaluation Results
Families come in all shapes and sizes… and so does family support. Don’t miss this opportunity to focus on the Who, What, When, Where, Why and How of Family Support by attending the 4th Investing in Family Support Conference (IFSC4). IFSC4 is designed for EHDI Coordinators, Part C Coordinators, Early Interventionists, Parent Leaders, Audiologists, Speech/Language Pathologists, Teachers of the Deaf/HH and other professionals involved in the care and nurturing of children who are deaf/hard of hearing and their families.
As early hearing, detection and intervention has evolved, the challenge of embedding family support into this process has become critical. IFSC4 is the only conference of its kind—the focus is specifically on how to support families in multiple ways, at multiple points in time, using multiple strategies, across multiple disciplines. Mark your calendar for Sunday-Tuesday, October 4-6 in Scottsdale, Arizona.
Sunday, October 4
Registration-West Foyer; Sunday dinner and presentations: Paloma 1-111
| 4:00-5:30 p.m. |
Exhibits Open |
| 4:00-5:00 |
Registration |
| 5:00-5:30 |
Eat, Meet & Greet! |
| 5:30 |
Welcome : Karl White |
| 5:45-6:30 |
Plenary Session 1 |
| 6:30-7:00 |
Getting (Re-)Acquainted with the IFSC Model of Family Support IFSC Veterans |
| 7:00-8:00 |
Reality Check: Parents Telling It Like It Is |
| 8:00-8:30 |
State Team Get-Acquainted/Scheduling Meeting |
In this opening address, the daughter-father team of Amy McConkey Robbins and Clarence McConkey acknowledge the rewarding yet often exhausting work that parents and professionals do on behalf of children with hearing loss. An emphasis on “breathing spaces” will be highlighted, with the premise that families and the clinicians who serve them function most effectively when there is, as the poet Judy Brown has described, “both fuel and absence of fuel” to sustain our inner fire.
What better way to get in gear about family support than hearing it from Parents! More than just a panel, this group of parents will help you to reflect, remember, ruminate, react and get ready to respond to the challenges of raising a child who is deaf or hard of hearing in the 21st century. It will be a reality check for those who work in systems, agencies, groups and facilities that family support is about each individual child and family and that when it comes to family support, one size doesn’t fit all.
Monday, October 5
| 7:00 – 8:00 a.m. |
Breakfast on your own or with your team |
| 8:00 – 8:10 |
Welcome & Introductions |
| 8:10 – 9:00 |
Plenary Session 2 |
| 9:00- 9:10 |
Instructions & Locations for Breakout Sessions |
| 9:15 – 10:15 |
Concurrent Sessions A |
| 10:15-10:45
| BREAK in Exhibits Area |
| 10:45 – 12:00 |
Plenary Session 3 |
| 12:00p.m. – 12:10 |
Instructions and Locations for LUNCH and afternoon |
| 12:15 – 1:30 |
Best Practices Lunchtable |
| 1:45-2:45 |
Concurrent Sessions B |
| 2:45-3:15 |
Break in Exhibits Area |
| 3:15--4:15 |
State Team Meetings |
| 4:30 – 5:30 |
Concurrent Sessions C |
One of the most complex questions that EHDI researchers and practitioners might consider is, “What is it about a family that makes a difference for deaf children?” While EHDI has been the impetus for achieving better outcomes for children and families than ever before possible, it remains hard to explain why some children do “better” than others and to even define what “doing better” truly means. This presentation looks at the issues that contribute to this reality and explores what it is about families that support development in a child who is d/hh and what we need to actually support in families. EHDI has significantly helped to focus attention on family centered intervention practice, but there has been far less attention on the problem the other way round; what is it that enables families to take up support and use intervention well? Researchers and interventionists can be guilty of measuring success in their terms without stopping to consider what good outcomes as defined by each family are and how these might change.
Concurrent Sessions A:
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Never underestimate a group of parent leaders! This lively session will highlight successful strategies under the topic of the “how-to” of family support in a group setting. Multiple models across a variety of settings will be featured, showcasing for attendees how family support can come in all shapes and sizes. If you are in start-up mode or just need ideas to increase momentum, this will be an informative and motivating session.
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This session introduces a new research tool designed to measure families’ evaluations of the quality of their early intervention services. Results will be presented from parents who filled in the questionnaire at three different time points in the first few years of their EHDI involvement to reflect how families’ perceptions changed over time as families became more experienced and children’s strengths and needs were revealed. Rather than call this tool by a more formal “scientific” name, the authors chose to call it by the name used with the 82 families who participated and it is therefore published as the MVOS: My Views on Services (Young, Gascon-Ramos, Campbell & Bamford, 2009) The MVOS is a structured questionnaire filled in by parents that can be used as a repeat measure every 6 months. The kinds of issues parents mention time and again when discussing intervention guided the design of the tool. Comments such as ‘the intervention might be good, but it’s happening at the wrong time;’ or ‘I’m very satisfied with services but I’m a positive sort of person anyway’ informed the development of this valid and reliable tool for measuring the quality of early intervention in parents’ terms
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Children with disabilities experience child abuse and neglect (CA/N) at a rate that is 3 to 4 times greater than their nondisabled peers. This is a well substantiated problem, and nationally, Hands & Voices is teaming with Michigan State University on a solution. Observe, Understand and Respond is a concept based on the knowledge that most children that are experiencing CA/N demonstrate both known and observable patterns of behavior. This session is for parents and professionals who want to be taught how to Observe, Understand and Respond to their children, and to make a difference in the programs, agencies, and systems that we are all a part of.
Could the EHDI “system” work better? How do we get from the status quo to more efficient and effective services for parents and children with hearing loss? Using actual case studies from around the country, this session explores “change agents” and how to create systems that function with the necessary quality control factors and flexibility to keep programs relevant and sensitive to family needs.
Best Practices Lunch Tables:
Guided discussion & questionnaire on what constitutes “best practice” in family support; attendees will be divided into groups based on “jobs alike”—parent, EHDI Coordinator, Educator of the Deaf, Audiologist, etc.
Concurrent Sessions B:
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To be a professional that handles hearing impaired children, and their families, is a challenge. But to be a professional in a country that increases day by day their intercultural population is even more. The professional already has his own education, training and cultural situation. We are not pretending to change any of these. But there are some tips, and ideas to transfer into the practice, and to take into consideration when working with families of different countries. We are also not pretending to show “the big discovery”, but to share some experiences, and ideas that could help to reduce the intercultural bridge.
Send in the SWOT Team: Evaluating Family Support
(Facilitated by Tamala Bradham,/Vanderbilt University and Gayla Hutsell Guignard/Indiana EHDI Coordinator)
Can we do it? Yes we can! Family support has been integrated into many EHDI programs across the states and territories. This panel will share success stories as well as strategies on overcoming obstacles in providing family support at a statewide level. Can we do it? Yes we can! Family support is being successfully integrated into several EHDI programs across the states and territories. In early 2009, a SWOT survey was conducted with EHDI coordinators on twelve EHDI components, including Family Support. Analysis of the described Strengths, Weaknesses, Opportunities and Threats (SWOT) has provided much insight into provision of Family Support at the state systems level and what opportunities lie ahead. This panel of EHDI professionals will discuss the integration of Family Support into specific State EHDI programs and respond to questions from the audience that may assist with furthering Family Support in their own systems.
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Special Time for Siblings
(Mary Beth Goring/John Tracy Clinic, California)
A diagnosis of early childhood hearing loss can turn a family’s world upside down. Other children in the family may need help in adjusting to the changes that their brother or sister’s hearing loss implies. Siblings can experience a wide range of emotions but may not always know how to share those with their parents. This session will offer information about the unique strengths of siblings, as well as approaches you can implement to address their emotional and practical needs.
Concurrent Sessions C:
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EI home visitors have exceptional roles with families. The topic may be child development and hearing loss but the goal is parent empowerment.
Early interventionists support the choices families make to benefit their children and help identify the resources to meet their needs.
Understanding the decisions parents make and what will be helpful requires skilled focused ongoing family support. In the Early Childhood Family Services program in Maine, staff are fluent in multiple communication approaches so they can provide mentoring for parents as they begin a journey of life long learning for their family. Strategies, successes and struggles in delivering support will be shared.
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The Role of D/HH Adults in Family Support
(Anne McNally, Facilitator-John Tracy Clinic)
Adults who are Deaf/Hard of Hearing bring a unique perspective to the table for families of today’s children. Considerations about how to access and use this valuable resource as part of a system of care and support for families is an important discussion. The presenters, all D/HH adults themselves, will share their ideas and insights on potential roles in expanding support options for families.
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Exit Only: A Road Guide for the Journey in Helping Deaf or Hard of Hearing Children
(Susan Hagerty/Parent-Iowa)
Once a child is diagnosed with hearing loss, families are thrust onto a path they are not often prepared to navigate. The best maps are drawn by those who have taken the road before us. Using common street and highway signs, Susan Hagarty takes participants through her 'Road Guide' to life with a deaf child, mapped out with stories, research, and a touch of humor. Susan exposes the parents' perspective regarding cochlear implants, bi-lateral implants, the use of sign language, advocacy, and other controversial topics. Suggestions are given to help ensure that these children and their families are kept on a path toward academic, social, and emotional success.
Tuesday October 21
| 7:15 – 8:00 a.m. |
Breakfast on your own |
| 8:00 – 9:00 |
Plenary Session 4 |
| 9:00 - 9:15 |
BREAK |
| 9:15 – 10:15 |
Concurrent Sessions D |
| 10:30-11:30 |
State Team Meetings |
| 11:45 – 12:30 |
Plenary Session 5 |
| 12:30 – 1:00 |
Jobs Alike “Best Practice” Shout Out |
| 1:00 |
Departure |
Family support is an integral part of the EHDI and is recognized as an important aspect of early intervention for children with hearing loss. Providing family support involves adult education, guidance and coaching. Yet, training programs for professionals have emphasized the development of experts who either make recommendations or perform the most highly technical tasks with little emphasis on adult learning. This highly interactive session will utilize videotape excerpts and role-playing to equip participants with an understanding of adult learning styles and their impact on family support. Adults just are not big babies - they have specific styles to approaching challenges and new information - which dramatically impacts supporting families so they can reach their desired outcomes for their child with hearing loss.
Concurrent Sessions D:
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Deaf-plus is a term used to describe a child who is deaf or hard-of-hearing has other medical conditions. These conditions can include deaf-blindness, physical disabilities, developmental and cognitive impairments. A survey by Gallaudet University reported that approximately 40 percent of deaf children have an additional disability (Gallaudet Research Institute, 2003). Families of deaf-plus children experience unique challenges raising their children. Very often, managing the other medical needs can take precedent over the hearing loss issues. Educating Deaf-plus children can also pose a unique challenge. This workshop will explore issue that parents face such as communication, stress, chronic medical concerns, education, and family dynamics in addition to considering ways that professionals can provide a supportive environment for Deaf-plus children and families.
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Happy? Sad? Mad? Anyone working with parents knows emotions run both high and low! During Dr. Noel Matkin’s career, he has authored over 80 articles or chapters and co-edited two books: “Hearing-Impaired Children and Youth with Developmental Disabilities” and “Infants and Toddlers with Hearing Loss: Family-Centered Assessment and Intervention” keeping the focus on family centered care long before it was a “buzz word”. Dr. Matkin will discuss strategies for providing emotional support and holistic guidance.
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This Just In: Good Ideas & Resources for Family Support [PPT, File Size: 2.4 MB]
(Joni Alberg/Beginnings for Families of Children who are Deaf/Hard of Hearing; Judy Harrison/Alexander Graham Bell Association; Leeanne Seaver/Hands & Voices; Angel Ramos/OptiSchool)
How have family support efforts responded to the current trends in early hearing detection and intervention? What’s new out there that’s aiming to keep it fresh and pertinent? This session will explore a sampling of materials, programs and products now available to EHDI systems that are striving to provide relevant resources that impact effective family support and promote desired parental outcomes.
In this closing address, Ken Levinson will present a model he has developed called I AM GREAT. This acronym is a useful tool for identifying the concepts he has found to be critical for building a positive self-esteem and for helping individuals who are deaf or hard of hearing cope in a mainstream environment. During the course of the presentation, the audience will have a chance to hear personal stories about Ken’s life and the influence his family had in his personal development, including “Harry-isms” from his dad.
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