Skip navigation

SPARKLE

User IconUsername:  Security IconPassword:  

Resources iconAll Resources

Parent BookletA Family's Guide to Interveners for Children with Combined Vision and Hearing Loss (Parent Booklet)

This 62-page publication was created especially for parents of children who are deafblind.  Through the authors’ combined experiences with their children and having seen the importance of intervener services to their child’s learning and development, they believe that it is critical that all parents of children and youth who are deafblind be informed about the role of interveners and be knowledgeable about how to advocate for interveners through the IEP process.  This booklet briefly describes deafblindness and the role of interveners, and then guides parents through the components of the IEP process that are most critical to determining the need for intervener services in educational settings.

This publication is now being disseminated through the SPARKLE program to families.  A copy of this booklet is also being disseminated to Parent Training and Information Centers in each state.   An electronic copy of this booklet and letter of introduction can be downloaded by clicking on the following links.

Letter of Introduction – Parent Booklet

A Family’s Guide to Interveners – Download the booklet

To order a print copy of this booklet for $15 which includes the DVD, Deafblindness and the Intervener and a laminated card with important questions to ask during the IEP development, please click on the link for the order form below, and fax or e-mail your order to Fran Payne at (435) 797-5591, fran.payne@usu.edu.  Families can call 1-855-357-5571 if they have questions or concerns.

Order form for A Family’s Guide to Interveners

Thanks, and we appreciate the opportunity to contribute to ongoing efforts in behalf of children and youth who are deafblind and their families.

Sincerely,

Linda Alsop (Utah)

Clara Berg (New York)

Vivecca Hartman (Texas)

Melanie Knapp (Texas)

Kimberly Lauger (Arizona)

Cheryl Levasseur (Massachusetts)

Sally and Mike Prouty (Minnesota)

Links

ABLEDATA
A database of more than 17,000 assistive, adaptive, and augmentative communication devices. A description of each product, its price, and ordering information is provided.
American Council for the Blind
A membership organization of blind and visually impaired people.
American Sign Language Browser
An easy-to-use on-line ASL dictionary with video for each sign.
A-Z to Deafblindness
Deafblind resources, including information on many different types of communication (from the United Kingdom).
Blindness-Related Resources on the Web and Beyond
Blindness-related resources.
CdLS-USA Foundation Outreach
Reaching out, providing help, giving hope.
CHARGE Syndrome Foundation, Inc.
A foundation that provides support to individuals with CHARGE syndrome and their families.
Deafblind International
The world association promoting services for deafblind people.
DeafBlindinfo.org
This is a new online directory of worldwide resources for and about people with combined vision and hearing loss.
Developing Concepts with Children Who Are Deaf-Blind
Information about concept development.
Eye Surgery Directory & Resource
Common Eye Conditions
Family to Family
A place for parents to get information and communicate with other parents
Family Voices
A national organization that speaks for all children with special health needs.
FAPE
Helping parents and advocates improve educational results for children with disabilities.
Fine Motor Development
Published by the National Association of Parents of the Visually Impaired.
Genetic Alliance
Advocacy, Education, and Empowerment.
Healthfinder
Has a "just for you" section that organizes special health topics by age, race, ethnicity, and type of service provider.
Hearing Aids 101
A hearing aid site that offers lots of information about hearing aids, including information about different manufacturers and children’s hearing aids.
Hearing Exchange
For people with hearing loss, parents, and professionals.
IDEA Practices
Access current and archived issues of IDEA news.
Inclusion Research Institute
Contains updates on pending legislation, federal programs, and other timely information.
Independent Hearing Aid Information
A comprehensive Guide on how to select a hearing aid (maintained by the Hearing Alliance of America).
John Tracy Clinic
Provides free services worldwide to families of preschool children with hearing loss.
Katlyn's Hope, Inc.
A nonprofit organization established to assist in the education of deafblind children (with info on fundraising and financial assistance for families).
Kaufman Children's Center for Speech Language, Sensory-Motor, and Learning Potential
Speech and language therapy children's center with lots of great information on different disorders.
Listen Up Web
Specializes in information for the deaf and hard of hearing.
Medicaid Fact Sheets Children’s Hospitals
Provides information about Medicaid Dxpansion.
Mosaic Down Syndrome on the Web
Information, articles, and contacts for MDS.
National Association of the Deaf
Safeguards the accessibility and civil rights of 28 million deaf and hard of hearing Americans.
National Center on Secondary Education and Transition
Creating Opportunities for Youth With Disabilities to Achieve Successful Futures.
National Congenital CMV Disease Registry
A research program working to learn more about children born with symptoms of congenital CMV disease.
National Family Association for Deaf-Blind
Supporting persons who are deafblind and their families.
Newsgroups and Listservs for Blind and Deaf People
Newsgroups and Listservs for Blind and Deaf People.
NFB
The National Federation for the Blind.
NICHCY
The National Information Center for Children and Youth with Disabilities.
NORD
National Organization for Rare Disorders, Inc.
NTAC - Parent Communication Fact Sheets
You'll be taken to the NTAC publications page. The Fact Sheets document (in PDF) is listed by the first bullet.
Parents Helping Parents
Includes a directory of US parent centers, parent training opportunities, discussion forums, and used equipment for sale, loan, or give away.
Presidential Task Force on the Employment of Adults with Disabilities
Former President Bill Clinton launched this site in 1998 to help increase the employment of people with disabilities. Besides employment information, the site includes helpful advice about health, housing, education, transportation, and recreation issues.
Project SALUTE
A resource on tactile learning strategies, California State University, Northridge.
PubMed
The National Institutes of Health service that contains access to more than 90,000 articles in medical journals.
Refsum Listserv
A Yahoo group that discusses Refsum Syndrome.
rehabtool.com
This site offers a variety of high-tech assistive and adaptive technology products.
RESNA
Find out which states have a low-interest loan program for purchasing assistive technology.
ROPARD
The Association for Retinopathy of Prematurity and Related Diseases.
RP Fresh Sight
A yahoo group for pre-teens, teens, and slightly post-teens to exchange information and share the difficulties of dealing with Retinitis Pigmentosa and similar visual disorders.
Sensory Integration Dysfunction in Deafblind Children
To provide information to parents about sensory integration.
Sensory Processing Disorder Foundation
An organization that seeks to bring current sensory integration resources and information to families, consumers, and professionals.
SERI Hearing Impairment Resources
A list of useful links from Special Education Resources on the Internet (SERI).
SERI Vision Impairment Resources
A list of useful links from Special Education Resources on the Internet (SERI).
TARP
Texas Association of Retinitis Pigmentosa.
Tech Connections
Contains information on Assistive Technology.
Tech Soup - The Technology Place for Nonprofits
A database that offers a multitude of resources such as technology-related articles, message boards, and a discount technology store.
The American Foundation for the Blind
A national resource for people who are blind or visually impaired, the organizations that serve them, and the general public.
The Blind Childrens Center
A family-centered agency which serves children with visual impairments from birth to school age.
The Blind Readers' Page
Contains about 2,300 evaluated and annoted links to sources of information in alternative format and to information about blindness, visual handicaps and other physical handicaps.
The Deafblind Coalition
Website with up-to-date important information for the Deafblind Community
The Exceptional Parent
Provides parents and professionals with ideas, advice, support, products, and other relevant resources.
The Merck Manual of Medical Information, Home Edition
A consumer version of the medical textbook doctors use. Available in a text version and an interactive version.
The National Center on Deaf-Blindness (NCDB)
The National Center on Deaf-Blindness is a federally funded information and referral service that identifies, coordinates, and disseminates (at no cost) information related to children and youth who are deafblind.
The NCLD No Child Left Behind Guide
Two national organizations, the National Center for Learning Disabilities (NCLD) and Schwab Learning, have collaborated to develop a handbook designed to provide simple, accessible information for parents on the No Child Left Behind Act (NCLB).
U.S. Department of Justice ADA home page
Contains access to information about what the federal government requires with regard to accessibility.
U.S. Office of Personnel Management
A new sight listing federal job opportunities for people with disabilities.
Waisman Center
A global community of disability-related resources, including deafblind information.
Wrightslaw
Accurate and up-to-date information articles, cases, newsletters, and resources about special education law and advocacy topics. Learn how to be an effective advocate for children with disabilities.

Articles

Let Me Check My Calendar
An article by Robbie Blaha, Education Specialist and Kate Moss, Family Support Specialist, TSBVI Deaf-blind Outreach.
Looking at Self-Stimulation in the Pursuit of Leisure or I'm Okay, You Have a Mannerism
An article by Kate Moss, Family Support Specialist and Robbie Blaha, Teacher Trainer, TSBVI, Texas Deafblind Outreach.
Talking the Language of the Hands to the Hands
An article by Barbara Miles (DB-LINK).
Tactile Learning Strategies for Children who are Deafblind
An article by Deborah Chen, Ph.D., June Downing, Ph.D., Gloria Rodriguez-Gil, M.Ed., California State University, Northridge. (Pages 1-6)
My Hands
A poem by Amanda Stine.
Feelin' Groovy: Functional Tactual Skills
An article by Millie Smith, Education Specialist, TSBVI Outreach with help from Roger Toy, Occupational Therapist, TSBVI.
Central Auditory Processing Disorder and Auditory Neuropathy
An article by Jim Durkel, Audiologist, TSBVI Outreach with help from Kate Moss, Family Support Specialist.
Are You Listening? Auditory Issues for Children with Visual Impairments
An article by Kate Moss, Family Support Specialist based on material presented by Jim Durkel.
Neurological Visual Impairment - Also Known as: Cortical Visual Impairment, Delayed Visual Maturation, Cortical Blindness
An article by Sam Morgan, Education Specialist.
Issues Regarding the Assessment of Vision Loss in Regard to Sign Language, Fingerspelling, Speechreading, and Cued Speech for the Student with Deafblindness
An article by Robbie Blaha, Education Specialist, TSBVI Deaf-Blind Outreach and Brad Carlson, Texas Commission for the Blind.
Sign Language with People who are Deaf-Blind: Suggestions for Tactile and Visual Modifications
An article by Susie Morgan, Technical Assistance Specialist, (Pages 3-7) NTAC.
New Findings Lead to Revised Therapeutic Regimen to Slow RP
An article by Alan Laties, M.D. Chairman of the FFB Scientific Advisory Board.
A Standard Tactile Symbol System: Graphic Language
An article by Linda Hagood, TSBVI Life Skills Department.
The Importance of Touch in Parent-Infant Bonding
An article by Gigi Newton, Teacher Trainer, TSBVI, Texas Deafblind Outreach.
Make it Routine
An article by Robbie Blaha, Education Specialist and Kate Moss, Family Support Specialist.
Toilet Training Children with Deafblindness: Issues and Strategies
An article by Craig Axelrod, TSBVI, Texas Deaf-blind Outreach.
Developing Concepts With Children Who Are Deaf-Blind
An article by Barbara Miles, M.Ed. and Barbara McLetchie, Ph.D.
Special Child: For Parents of Children with Special Needs
Provides articles, information and support for parents of children with special needs.
It Happened to Mary and Joseph
An article by Claire Muller, Parent, Winchester, KY.
Letter of Intent: A Way to Communicate Your Wishes
An article by Kate Moss, Family Support Specialist, TSBVI Outreach.
"Tuff" Love or Raising Laurie
An article by Annie Wade, Parent, Tulia, Texas.
Conversations without Language: Building Quality Interactions with Children Who are Deaf-Blind
An article by Linda Hagood, Education Specialist, TSBVI Outreach Department with help from Kate Moss, Family Support Specialist.
Just a Little Further Down the Road
An article by Leslie Fansler, Parent, Amarillo, Texas.
Validation of the Intervener Study
Project VIP studied the effectiveness of the Intervener Service Model.
Helping You and Your Child Get a Good Night's Sleep
An article by Craig Axelrod, TSBVI, Texas Deaf-blind Outreach.
Points to Consider About Etiologies
A Fact Sheet produced by the California Deaf-Blind Services.
Teaching Strategies and Content Modifications for the Child with Deaf-Blindness
An article by Kate Moss, TSBVI Deaf-blind Outreach Family Support Specialist and Linda Hagood, TSBVI Deaf-blind Outreach Education Specialist.
Early Interactions With Children Who Are Deaf-Blind
An article by Deborah Gleason.
The National Center on Deaf-Blindness shares Dr. Jan van Dijk's Articles
Articles from Dr. Jan van Dijk.
Communicating with Bruno
An article by Gretchen Hester.
Learning to Communicate: Strategies for Developing
An article by Deborah Chen, Ph.D. Professor, California State University, Northridge.
The Intervener In Early Intervention and Educational Settings For Children and Youth With Deafblindness
By Linda Alsop, Robbie Blaha, and Eric Kloos.
Bringing It All Back Home: Family-Driven Assessment and Intervention for Children who are Deafblind
By Dr. Charity Rowland.

State Resources

Georgia Sensory Assistance Project
Provides services to chidren and youth with deafblindness
PACER Center
Parent Advocacy Coalition for Educational Rights in Minnesota and across the nation.
Texas School for the Blind and Visually Impaired
A Center for Educational Services for All Blind and Visually Impaired Students in Texas.
The Deafblind Coalition Website
Up-to-date important information for the Deafblind Community
The MN DeafBlind Technical Assistance Project
This project is federally funded under IDEA that supports MN children and youth, birth through age 21.
Utah Deafblind Project
Utah Schools for the Deaf and Blind.
 
Ideas That Work