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I wish I had…
Wisdom from parents of children who are deaf-blind.
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National Family Support Survey
Parents or primary caregivers of young people with disabilities 12-22 years old are invited to take part in a national research study by completing the National Family Support Survey, conducted by the FAST Project. Answers to the questions on the National Family Support Survey are confidential and will help the Administration on Developmental Disabilities, parent centers, and researchers understand the information and supports families need to prepare for moving into adulthood. This information may help to inform program development for youth with disabilities in the future. The survey is available in Spanish also.
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Iowa Braille School
1002 G Ave.
Vinton, IA 52349
319-472-5221, extension 1028
800-645-4579, extension 1028
Iowa Braille School
1002 G Ave.
Vinton, Iowa 52349
319-472-5221, ext# 1002
Family to Family
We know the importance of a family hearing from and getting information from other families. In many cases those families have lived through some of the same experiences and challenges you might face. In other cases, those families are good resources of information not readily available in other places. We are pleased to introduce this “Family to Family” opportunity. You can reach the families below as they have suggested.
Or, you can contact me (Phyllis McGowan) toll free at 1-800-645-4579, extension 1028.
I will relay a message for the family to contact you.
Please consider either contacting one of the families or better yet becoming one of the families to contact. We have resources available to support you if you would be interested. Please contact Phyllis McGowan.
A message from Karen:
I am Karen Ginn. My husband, Rich and I are parents of 4 girls. Makenzie, a sophomore at Iowa State University; Kaci, a 6th grader; our angel Taylor, 1/31/96-2/6/96; and Morgan, a sophomore in high school, who has CHARGE. She was diagnosed soon after her birth in 1996, and our roller coaster journey began. She has had 15+ surgeries with more in her future. She has defied the doctor's dire predictions that she would not see, hear, walk, or be a productive member of society. She attends our local high school and is in regular classes with the support of her interpreter and nurse. She is a hearing impaired, medically amazing, walking, talking, productive member of our community!
I wish the doctors would have told me that Morgan would teach me lessons that I would never have learned without her. She has taught me to appreciate the little victories, to be more patient, and to know that I am a strong person. But of course, the doctors could not tell me that, they could only tell me what the medical books told them. If they could only tell you that your child will amaze you, and you will love them unconditionally. It will not be the same journey that your other kids take, but they will make their own journey on their own schedule.
One of the most important things that we did as parents was to seek help from others. I joined a listserve group for CHARGE families and through that, I learned there are others out there that have fought the same battles. They were able to point me to experts, other groups (Deafblind services), and other families that could help me with answers or at least they could give me support. I would like to be a resource for parents of children with CHARGE. (A child with CHARGE is considered to be eligible for support from Iowa’s Deafblind Services Project because CHARGE affects vision and hearing.) I hope I can help guide other families to find answers they need, or just be part of their support system.
I look forward to hearing from you. You can call me at 319-480-4054. If long distance calls are an issue, please call Phyllis McGowan at 800-645-4579, extension 1028, and she will forward your message to me.
A message from Holly:
Hello Families of Iowa! My name is Holly and I have a son who is deafblind (born in 2004). Our family has been through the ringer... and if you are reading this I am sure yours has as well. My son’s deafblindness originated from seizures that he had at 4 months old. We have been living with special needs for over three years now, and we would really love to help others out. We have learned so much about our sons disability. We have become expert researchers, and proudly have vast access to many agencies that really helped us out. Now we really hope to share our knowledge with you. I know for a fact that networking helps families out. As a specific example, if it weren’t for family networking (or gabbing as it really was!) I would not know our son was eligible for a home nurse aid, or government funding unique to him. Networking has also relieved a lot of stress during IEP time at school. Deafblindness is a very unique disability; many experts don’t understand it as well as we do as parents. I am available for you to help with just about anything! If I don’t know the answer I do research, either online or through my own support networks of friends and agencies. Please let our family help yours, as many have for us. More than anything we wish to alleviate stress and worry in your already crazy lives.
I can be reached via email email@example.com or phone 319-472-3798, Monday through Friday in the morning or evening. You can reach Phyllis McGowan at 800-645-4579, extension 1028, if long distance charges are an issue.
A message from Diana:
Hello! My name is Diana Boyd. My son Josh (born 1995) has neonatal adrenoleukodystrophy and is deafblind. I serve as a family representative on the Deafblind Services Project Advisory Board for the state of Iowa. Many of you probably don’t realize that the federal government provides funds to each state’s DB Project to be used to create programs that help individuals who are deafblind and their families. Until now, Holly and I have done our best to represent all of you. However, we would greatly prefer (and probably you would too!) to be able to truly bring your needs and concerns to the board.
I recently attended a DB leadership conference at the Helen Keller National Center on Long Island. The purpose of the conference was to help states develop DB Family Associations. Many states already have these wonderful organizations where families connect, get ideas, and learn about how other families cope. My hope is that we can do the same in Iowa. When we work together, we can decide as a group, what would best help all DB families in Iowa. I look forward to working with you and for you. If you have any questions, ideas, or concerns, you may contact me by phone @ 563-391-6305 or 563-508-8004. Unfortunately, I am between computers right now so email is not an option. If long distance calls are an issue, please call Phyllis McGowan at 800-645-4579, extension 1028, and she will forward your message to me. God bless.
Support Q & A
do you think my child
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
who are deafblind. Very
rarely are we talking
about a child with total
blindness and complete
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
affects one eye or one
ear or is diagnosed with
a progressive loss that
currently may not be a
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.
Thanks for the Indiana Deafblind Project for sharing the above questions and answers
I see both "deafblind" and "deaf-blind". Do these terms have different meanings?
No, they don't. Both terms are used to refer to individuals with a combined vision and hearing loss.
Support / Helpful
Access for Special Kids (ASK) Family Resource Center
This Center is “a one-stop-shop for children and adults with disabilities and their families.” Through it's member organizations, ASK provides a broad range of information, advocacy, support, training and direct services. These services are all accessible in one building or from one phone call. Their newsletter, which can be read online or mailed to you, has excellent information written in a manner that does not require you to be an expert on the subject.
Advocating for Your Child's Needs: What Do You Need to Know?
This webcast is presented by Perkins School for the Blind and the Ohio Center for Deafblind Education, with Diana Autin, Esq., the Executive Co- Director of the Statewide Parent Advocacy Network (SPAN), New Jersey's Parent Training and Information Center. In this webcast, Diana presents the companion guides that were developed by NJ SPAN based on the Deafblindness: Educational Service Guidelines. These companion guides include fact sheets, mini-guides and an IEP Meeting Checklist. These materials provide a framework to support the development of meaningful, appropriate programming for students with deafblindness
Webcast at: http://support.perkins.org
CHARGE Syndrome Foundation
The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.
Children Who Are Deaf-Blind with Cochlear Implants
Researching the Benefits and Challenges of Cochlear Implants for Children with Combined Hearing and Vision Loss.
To participate in the on-going study…or just learn from their results:
To join the family LISTSERV, contact Lynne Getz at firstname.lastname@example.org
June 2010 Research Brief: “Family Perspectives on Cochlear Implants”
Communication Portfolio Webcast by Perkins School for the Blind:
In this webcast, Susan DeCaluwe discusses the development of the Communication Portfolio for learners with deafblindness and multiple disabilities. This tool, that is jointly developed by family members and professionals, creates a common and very personalized view of the learner’s communication skills, abilities and challenges across all environments.
Webcasts at: support.perkins.org
DB-LINK houses the largest collection of information related to deaf-blindness worldwide. A team of information specialists makes this extensive resource available in response to direct requests, via the NCDB web site, through conferences and a variety of electronic medium.
|Deaf Services Commission of Iowa
Mission: "Our Motivation is to Serve, Represent, and Provide a Greater Understanding of Deaf and Hard of Hearing Individuals at Any Age Across the State"
Vision: "Equal Communication, Education, and Access"
Deaf Students with Disabilities Network:
The Laurent Clerc National Deaf Education recently launched the Deaf Students with Disabilities Network, which has been developed for parents, teachers, and professionals living and working with deaf and hard of hearing students with disabilities. This site is designed to address the gap of knowledge specific to deaf and hard of hearing students with disabilities. The site provides information and, more importantly, discussion forums that allow people from across the United States to interact and learn from one another.
You may visit the Deaf Students with Disabilities Network at http://deafwdisabilities.grou.ps/home.
Described and Captioned Media Program
The Described and Captioned Media Program (DCMP) provides services to benefit students who are blind, visually impaired, deaf, hard of hearing, or deaf-blind. Available to schools and families are a free-loan library of described and captioned educational media and information related to accessible media.
FamilyConnect is an online, multimedia community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). This site gives parents of visually impaired children a place to support each other, share stories and concerns, and link to local resources. The site also features a mom-authored blog, inspiring video testimonials from families, and articles authored by parents and experts in the field of blindness on multiple disabilities, technology, education, and more. From the personal to the professional, families will find all the resources they need to raise their children from birth to adulthood.
Family to Family Iowa
Family to Family Iowa is a statewide network of Family Navigators who provide assistance to families of children with special needs (developmental, behavioral, emotional, physical) at no cost to families. We can:
- Help families navigate the supports and services available for their child with special needs.
- Help families navigate the supports and services for other family members. It’s not just about the child with special needs!
- Help families develop self-advocacy skills through trainings and more.
|Governors Developmental Disabilities Council
That site will keep you informed about what is happening with disability issues statewide and nationally as well as telling you about some exciting projects.
Helen Keller National Center for Deaf-Blind Youths and Adults
The mission of the Helen Keller National Center for Deaf-Blind Youths and Adults is to enable each person who is deaf-blind to live and work in his or her community of choice.
- Helen Keller National Center’s electronic newsletter:
WINTER 2012/13 CONNECT
(Excerpt from September 2011 newsletter)
Traditionally in high school, the IEP (Individualized Education Plan) team makes decisions about the types of accommodations and supports a student needs, i.e., a notetaker, tutor, interpreter, listening device, etc. Often the student is just a passenger on the ride. In college, the rules change. Students must become the driver and advocate for the supports they will need to be successful.
In 1996, HKNC developed a tool - “A Guide for Students Who Are Deaf-Blind Considering College” to assist students in this task. The Guide presented a series of checklists and questions that the student would answer in order to create a comprehensive picture of specific technological, strategic, and environmental adaptations necessary for the student.
HKNC is pleased to announce that an updated version of this Guide is now available. The Guide can be particularly useful when meeting with the college’s office of support services. Through a series of questions, this Guide will help students identify how they best learn. When visiting colleges and universities, the “College Fast Facts” section will help students evaluate the physical campus and services to know if they are a good match for the student. Finally, there has been an explosion of online coursework with the ability to access textbooks on the Internet, review assignments, and submit them electronically to a virtual site or to a professor through email. A new section will guide students through questions to ask at colleges to insure that the school’s programs are accessible for someone who has vision and hearing loss.
You can download and print this document from:
Scroll down to #4 to view and download the Guide.
An Intervener is a person who works consistently one-to-one with an individual who is deafblind, and who has training and specialized skills in deafblindness. An Intervener helps the student gather information, learn concepts and skills, develop communication and language, and establish relationships that lead to greater independence.
|Iowa’s Deafblind Technical Assistance Team
Meet the Iowa Deafblind Technical Assistance Team
NFADB – National Family Association for Deaf-Blind
Supporting persons who are deaf-blind and their families
“The National Family Association for Deaf-Blind (NFADB) has been supporting individuals who are deaf-blind and their families for over sixteen years. Membership is open to anyone with an interest in deaf-blindness, including people who are deaf-blind, family members, friends and interested service providers and professionals. We would like to invite you to become a member!
Please see the attached materials for more information and the membership application. We encourage you to visit NFADB’s website for more information about the organization.”
2011 NFDADB Membership Letter
2011 NFADB Membership Application
NAPVI – National Association for Parents of Children with Visual Impairments
The National Association for Parents of Children with Visual Impairments (NAPVI) is a non-profit organization of, by and for parents committed to providing support to the parents of children who have visual impairments.
National Consortium on Deafblindness (NCDB)
They have a tab especially “For Families”. See NCDB’s issue of Practice Perspectives called "College Students Who Are Deaf-Blind". This publication describes qualitative research conducted on the experiences of college students who are deaf-blind and provides suggestions for ways colleges can support students.
Oregon Deafblind Project Family Guide
Thank you to the Oregon Deafblind Project for creating this helpful “Family Guide” website.
Parent Information on Iowa Department of Education Website
Procedural Safeguards Manual for Parents Rights: Children, Birth - 3
Procedural Safeguards Manual for Parents Rights: Children Ages 3-21
Perkins School for the Blind
The Impact of Deafblindness on the Family
by: Marlyn Minkin,M.S.
In this webcast, Marlyn Minkin,M.S. addresses the issues that families struggle with related to raising children who are deafblind. Marlyn is a psychologist with extensive national and international experience working with families of children who are deafblind. This webcast addresses the following topics: 1. Introduction, 2. Common Responses to a Diagnosis of Deafblindness, 3. Parent to Parent Support, 4. Sibling Issues, 5. Personal Experiences and Professional Advice, 6. Self-Care and Accepting Help, 7. Planning for the Future, and 8. Redefining Hope
Perkins Advocacy Tools for Parents of Students with Deafblindness
Parents of children with deafblindness face many challenges every day. They have hopes and dreams for their children, and they want their children’s educational services to help them develop and learn. Perkins Training & Educational Resources Programs has created online materials to help you navigate this process. Topics include the evaluation process for children who are deafblind, developing an effective Individualized Education Program (IEP), an IEP meeting checklist for parents, and the transition to adult life.
TASH is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm.
|UHCCF Grants for Families Struggling with Child Health-Related Expenses
Children who have medical needs are sometimes not insured comprehensively to provide coverage for all of their medical treatments.
The United Healthcare Children's Foundation (UHCCF) provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics, and eyeglasses. Parents and legal guardians may apply for grants of up to $5,000 each for child medical services and equipment by completing an online application at the UHCCF Web site. If a grant is approved for the child, the grant will help pay for approved medical services/items after the child’s commercial health benefit plan submits payment for services provided, if any. The grant funds are not paid to the parent or child directly – invoices/bills are submitted to UHCCF for approved medical services/items after the commercial health benefit plan submits initial payment (if any) to the health care provider.
In January 2006, the United Healthcare Children's Foundation was expanded to all 50 states; hence, funds are available nationwide. To be eligible for a grant, children must be 16 years of age or younger.
Register at: www.uhccf.org
For more information on Children's Mental Health go to: www.iffcmh.org
Please share this information with others.
Person Centered Planning (PCP)
If you have an interest or need for a strategy that can help support an individual of any age with significant challenges, the Indiana Deafblind Services Project has developed some very helpful self instruction materials on Person Centered Planning (PCP). Person Centered Planning (PCP) is a strategy that uses the strength of a goal directed team to help support an individual. As you review the information remember that your Iowa Deafblind Services Project is ready to provide additional information and support with PCP - simply contact us.
Parent Testimonial for PCFP process
Sharing Information with Schools
“Professionals and paraprofessionals working with your child—especially when your child is new to a program—may not understand your child’s basic needs and other important information because their information is based only on brief observations in the classroom. The knowledge you have of your child is based on so much personal experience that it may be obvious to you, but may not come as naturally to service providers in the school. There may be written reports about your child but these reports do not provide a complete day today “picture” of who your child really is. And not all service providers have easy access to these reports. Unfortunately, having provided information about your child once doesn’t mean that you may not have to provide it many more times. This will be particularly true every time the child goes into a new program and/or starts working with new people. And some information may have to be repeated several times to the same people for them to fully understand it in the way intended.
In many cases, it is difficult for children who have vision and hearing loss and additional multiple disabilities to tell others about themselves. It is usually the responsibility of family members and/or the other adults who live with and care for these students to share this information so that educational teams can propose and design instructional activities based on the strengths and needs of the students. You can insure this information is shared by considering a few simple strategies. These strategies might be most applicable to a student who is new to a program.”
The above excerpt is taken from the California Deaf-Blind services Winter 2009 publication called “reSources” in a Gloria Rodriguez article entitled “Sharing Information to Improve You Children’s Learning Experiences at School: Strategies for Families from the Perspective of a Teacher.”