IN Deaf-Blind Family Connections
Indiana D
eaf-Blind Family Connections is a group of parents and caregivers of deaf-blind individuals. We believe that all children who are deaf-blind are able to learn and become happy and productive members of our communities. We are here to help provide Indiana families with important information and resources, to keep families linked with each other, and to provide support and practical advice. We offer a listening ear to those who want to share their stories.
As a group, we want to increase our presence through advocacy in the state of Indiana. In order to accomplish our mission, we need your voice! Please visit http://www.indbfamilyconnections.org/ and join us today!
Family Training Fund
Families need to be involved in their child's education and learn to advocate for their child's best interests. You are the ones who know him or her best. In order to help provide you with the information that you need, the Indiana Deaf-Blind Services Project provides financial support through the Family Training Fund to assist you in attending workshops or conferences. Assistance is available only to families of children who are reported on the Project's deaf-blind census. These awards may be used one time per year to attend workshops or conferences on deaf-blindness or a related topic. They can be used to reimburse actual travel and hotel expenses, conference registration and child care expenses.
In order to apply, please fill out the Family Training Fund Application Form prior to the event and return it to:
Indiana Deaf-Blind Services Project
ATTN: Lisa Poff
Bayh College of Education
401 North 7th Street
Terre Haute, IN 47809
FAQs
Why do you think my child is "Deafblind"?
The term "Deafblind" is often very difficult for families to hear. You, as a parent, may think, "My child isn't deafblind; she can see . . . or he can hear." What is important to remember is that there are all types and degrees of vision and hearing loss in children who are deafblind. Very rarely are we talking about a child with total blindness and complete deafness. Deafblindness encompasses a complete range of hearing and vision losses from mild to profound and from low vision to total blindness. In addition, often a child may have an impairment that only effects one eye or one ear or is diagnosed with a progressive loss that currently may not be a problem.
Why use the term "Deafblind"?
The most simple answer to this question is because "deafblindness" is used to talk about a specific disability. It describes any combined vision and hearing losses that are significant enough to require special modifications or supports that go beyond what would normally be needed if the child had just a hearing loss or just a vision loss. When a child can see but is deaf, he or she relies on visual information, such as pictures or sign language for communication. Conversely, when a child can hear but is blind, he or she relies on auditory information, such as speech or sounds in the environment, to help learn about the world around him or her. If the child has both a vision and a hearing loss, some if not all of these methods of gathering information are closed to him or her.
In addition, although using the term "deafblind" may sound overwhelming, it does describe the reality of this disability. Deafblindness is not simply deafness plus blindness. The effect of both vision and hearing loss is more like deafness multiplied by blindness. Missing a little bit of what can be seen and a little bit of what can be heard means missing a lot of what is happening around us. This missing information also may cause miscommunication and misunderstanding. It is important to realize that without the proper support, even a mild vision and hearing loss has a dramatic impact on a child's ability to access information and learn.
Get Involved!
Indiana Deaf-Blind Family Connections:
This is a group of trained family leaders who have children with combined vision and hearing loss. They work with the Indiana Deaf-Blind Services Project to reach out to other families of children who are deaf-blind and help to provide support, information and resources. For more information go to: www.indbfamilyconnections.org
Indiana Partners in Policymaking:
The Governor's Council for People with Disabilities recruits participants for Partners in Policymaking Academy. The Partners in Policymaking Academy (PIP) offers eight weekends of intensive training designed to educate participants to be active partners with those who make policy. Every other year, 35 people with disabilities and family members are selected. For more information, contact Partners in Policymaking at 317-232-7770 or by e-mail PIP@gpcpd.org or visit http://www.in.gov/gpcpd.
Learning About Intervener Services
NCDB and NFADB collaborate to offer an online study for family members of children and youth who are deaf-blind called The Role of Interveners in Educational Settings, which uses Module 3 from the OHOA Modules. The next online study will take place from October 3 to November 7, 2016. Registration opens August 22. Find complete information here.
What You Need to Know About Interveners
Imagine that you are in an unfamiliar place and you cannot see or hear; or what you can manage to see and hear is highly distorted. Without warning, unfamiliar people are pulling you from one place to another; taking you to different activities that you cannot make sense of with your limited information. In addition, you may have few communication skills and can only express yourself through your behaviors. Your response may be one of panic and lashing out… and this is the experience that many children who qualify as deaf-blind go through every day.
A skilled intervener is often necessary to provide access to information and address the unique learning needs of students who have combined vision and hearing losses. An intervener is usually a paraeducator who has specialized training and skills in deaf-blindness and works consistently one-to-one with the student. For more information on Interveners, how to determine if your child needs and intervener and Intervener Training go to our Intervener Page!
National Center on Deaf-Blindness
- National Center on Deaf-Blindness (NCDB) Family Engagement Initiative
This national initiative collaborates with state projects and national family organizations to ensure that families have the support they need to partner effectively with education and service providers and to create a cohesive network of family leaders across the country.
- NCDB Library
A large collection of online resources on all aspects of deaf-blindness organized by topic. Some of the resources are aimed at families; others at professionals or researchers.
- NCDB For Families
Page with resources especially for families, including our new Family Matters video series (a new video story will be posted every few months, each featuring a different family).
- NCDB Families Matter Video Stories
The Family Engagement Initiative regularly publishes web-based stories about children who are deaf-blind and their families.
- NCDB Recursos En Espanol
Many of the nationally produced resources from the NCDB Library translated in Spanish.
- NCDB Open Hands, Open Access: Deaf-Blind Intervener Modules
A series of 27 online modules designed to train interveners. Also, a great resource for parents- you can sign up for free and work through them at your own pace.
- NCDB Families Lead
A tool to train family leaders, which includes personal stories and a wealth of resources on all aspects of leadership.
- NCDB Facebook
Follow NCDB on Facebook! We post news stories, interesting resources, and weekly tips and highlights including family fun facts (Fridays).
Parent and Family Focused Links
National Organizations
Perkins eLearning
Videos, webinars, online courses, and other resources designed to provide professional development to teachers of children with visual impairments or multiple disabilities.
National Family Association for Deaf-Blind
A non-profit organization empowering families to advocate for individuals who are deaf-blind. Connects families through Facebook, webinars (in English & Spanish), a toll-free number, and a semiannual online course on the role of interveners in educational settings.
Usher Syndrome Coalition
An advocacy and support organization where you can connect with other families, find information on the latest research and legislation, read blog posts, sign up for the newsletter, and join advocacy efforts.
WonderBaby
An excellent site for parents of young children with visual impairments or multiple disabilities. It's made up of articles and blog posts written by parents on a wide range of topics and includes many tips and activities.
CHARGE Syndrome Foundation
A non-profit organization that works to improve the lives of people with CHARGE syndrome through outreach, education, and research. Supports families via a director of outreach, webinars, a provider database, extensive online resources, and an international conference every two years.
Center for Parents Information & Resources
Every state has at least one federally funded parent center, which provides parents of children with disabilities information about local educational services and their child's rights under IDEA. Visit this site to find your local parent center and browse general resources about special education.
FamilyConnect
A site from the American Foundation for the Blind for parents of children with visual impairments.
Listen to Miguel's story
Up until about a year ago, when someone from my past would ask me what I've been up to I would always respond with "I'm just living the dream". It was true. We were living the dream.