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NJCSCD Library

Deafblindness (Dual sensory impairments, USHER, CHARGE)

https://nationaldb.org/library/list/3
NJCB is a national technical and assistance center for children and youth who are deafblind.

https://deafness.about.com/cs/deafblindarticles/a/deafblindness.htm
This site provides resources and general information about deafblindness.

https://www.tsbvi.edu/infants
This website provides downloadable Word documents which include information on early development, milestones, vision screenings, and monitoring development.

https://www.nd.gov/deafblind/about/behavior.html
This site provides information on dual sensory impairments.

https://www.ushersyndrome.nih.gov/
Information about USHER from the National Institute of Health.

https://www.medicinenet.com/usher_syndrome/article.htm
Information on causes, characteristics, diagnosis, treatment… of USHER.

https://www.chargesyndrome.org/
The CHARGE Syndrome Foundation’s website provides information, resources, research, etc.

https://www.ghr.nlm.nih.gov/condition/charge-syndrome
Genetic Home Reference depicting references, resources, support, genetic information, and, recent literature.

Deafness and Related Issues (Cochlear Implants)

https://www.nidcd.nih.gov/Pages/default.aspx
National Institute on Deafness and other Communication Disorders website.

https://www.medicinenet.com/deafness/article.htm
Medicine Net’s website depicting glossary of hearing loss terms, education, treatments, etc.

https://www.nidcd.nih.gov/health/hearing/pages/coch.aspx
National Institute on Deafness and other Communication Disorders provides information on CIs, how CIs work, who is eligible to receive one, the future, educational and practical ramifications.

Blindness and Related Issues (CVI)

https://www.medicinenet.com/blindness/article.htm
Medicine Net’s website depicting glossary of vision loss terms, education, treatments, etc.

https://kidshealth.org/kid/health_problems/sight/visual_impaired.html
Addresses visual impairments of children, early diagnosis, education and treatment, and basic information on visually related issues.

https://tech.aph.org/cvi/
American Printing House for the Blind’s website dealing with Cortical Vision Impairment.

https://wvde.state.wv.us/osp/vi/cvi/
Training materials on CVI, assessment, personal perspectives, etc. from the WV DOE.

Support Providers (SSPs, Interveners, Interpreters)

American Association of the Deaf-Blind depicts roles, responsibilities and provisions of SSPs.

https://deafblind.ufl.edu/topics/interveners-interpreters-ssps/support-service-providers University of Florida’s Outreach Project describes support services and the definition of SSP’s role.

https://nationaldb.org/library/list/74
The National Consortium on Deaf-Blindness website provides various information on related topics, including interveners.

https://www.dbproject.mn.org/
Minnesota’s deafblind project provides a wealth of information on deafblindness and interveners.

https://nationaldb.org/ISSelectedTopics.php?topicCatID=19
Provides a resource list of general information, interpreting settings, etc.

Communication/Language Development (Early Intervention, Emergent Language, Receptive and Expressive Language, Tactile Communication, Calendars, Augmentative Communication)

Commandments of Early Intervention for Professionals Working with Children who have Sensory Loss and their Families
This PDF document by Tanni Anthony gives the “ten commandments” for anyone who is working in the early intervention field with children who may be blind or visually impaired.

https://www.tsbvi.edu/early-identification-of-hearing-and-vision-loss-is-critical-to-a-child-s-development

This article from the Texas School for the Blind and Visually Impaired gives the red flags and warning signs in order to identify hearing and/or vision loss in a young child. It also details recommendations of what to do after you have spotted these warning signs.

Early Intervention

https://www.osepideasthatwork.org/parentkit/23%20-%20Learning%20to%20Communicate.pdf
This article by Deborah Chen, Ph.D., provides strategies to engage in communication with a child with multiple disabilities as well as FAQ’s and warning signs.

https://www.tsbvi.edu/seehear/summer02/planning.htm
This page from the Texas School for the Blind and Visually Impaired details the laws regarding preschool and services, as well as how to set goals, identify a team, how to prepare the child, and much more.

https://www.tsbvi.edu/resources/120-quarterly-issues/2278-teaching-your-blind-baby-sign-language
This page from the Texas School for the Bind and Visually Impaired explains the reasoning for teaching sign language to your baby, how to teach it, and tips.

https://www.deafblind.com/slmorgan.html

Article on considerations for effective communications with deafblind people.

https://www.tsbvi.edu/seehear/fall00/infantbonding.htm
This article explains the importance of touch from parents to their parent or infant who may have multiple disabilities.

https://www.projectsalute.net/

Articles and information sheets for literacy for children with deafblindness.

https://www.thefreelibrary.com/Emergent+literacy+supports+for+students+who+are+deaf-blind+or+have…-a0201801258
Case study in the classroom with interesting results.

https://nationaldb.org/NCDBProducts.php?prodID=31
This page explains how to increase communication opportunities, and what to look for when communicating. It also includes additional helpful resources.

This PDF document details the purpose of developing a Communication Portfolio, how to do it, the importance of socialization, and adaptations.

https://mtdeafblind.ruralinstitute.umt.edu/
This PDF document from Colorado Services to Children with Deafblindness explains what receptive communication is, how to communicate with your child, and receptive communication cues.

https://nationaldb.org/library/page/1930
This article by Barbara Miles addresses the importance of touch and the use of the hands for individuals with are Deafblind.

https://wp-content/uploads/sites/.eric.ed.gov/fulltext/EJ966531.pdf
This article details how to set up a communication journal between home and school and how it can effectively be used.

https://www.asha.org/NJC/bill_of_rights.htm
This is a Bill of Rights for all persons who have a disability.

https://www.dbproject.mn.org/commbubble.html
This page from the Minnesota Deafblind Technical Assistance Project explains how persons come to use communication comfortably.

https://www.cadbs.org/news/a01-communication-what-is-he-trying-to-tell-me/
This page from the California Deaf-Blind Services explains points to remember when communicating with a child who is Deaf-Blind.

https://www.tsbvi.edu/seehear/archive/conversation.html
This helpful page from the Texas School for the Blind details the importance of communication and the various ways of communicating with children who are Deaf-Blind. It also addresses potential issues which may arise and plausible ideas to address these issues.

https://www.cadbs.org/news/a19-creating-a-need-to-communicate/
This page from the California Deaf-Blind Services gives suggestions of how to foster the need to communicate with children who are Deaf-Blind.

https://www.sfsu.edu/~cadbs/25CommDictionary.pdf
This PDF document from the California Deaf-Blind Services is a fact sheet explains how to create a Communication Dictionary and what is important to include in them.

https://www.tsbvi.edu/math/64-graphics/1725-non-verbal-communication-cues-signals-and-symbols
This helpful page explains the various modes of non-verbal communication and gives examples of each.

https://www.deafblindresources.org/devices/experiencebooks.pdf
An Experience Book is to be used between an intervener and a student who is Deafblind. This page details suggested uses for an Experience book, ways to make it meaningful, and individual considerations.

https://www.sfsu.edu/~cadbs/39CommRichEnviro.pdf
This PDF file from the California Deaf-Blind Services offers a series of questions to analyze the environments your student with Deaf-Blindness is in. It is a helpful tool in establishing environments that will foster communication.

https://www.sfsu.edu/~cadbs/30VoiceOutput.pdf
This fact sheet from California Deaf-Blind Services explains what a voice output device is and helpful strategies for ways to use it.

https://www.sfsu.edu/~cadbs/Eng003.html
This page explains the purpose of touch cues and details their importance for individuals who are Deaf-Blind.

https://www.unr.edu/ndsip/tipsheets/expressivecommunication.pdf
This PDF document explains the development of expressive communication and offers suggestions for ways to enhance communication throughout various stages.

Receptive Communication Forms

This PDF document details various forms of cues and expressions, gestures, pictures, objects…to elicit receptive communication.

https://www.tsbvi.edu/braille-materials
Information on curriculum, instruction, coding, literacy, teaching products…

https://www.tsbvi.edu/early-childhoos/3236-object-calendar
How to use an object calendar and a reference to Robbie Blaha’s calendars for students with multiple impairments.

https://www.tsbvi.edu/
Simple summary of using a calendar system with children- using anticipation and routine- and its success.

https://www.deafblind.co.uk/
A comprehensive listing of materials and equipment.

Curriculum (Professional Competencies, IEPs, Deafblind Strategies, Literacy, Speech, Early Intervention, Daily Living Skills, O&M, Sensory/Tactile, Fine & Gross Motor, Recreation, leisure and play, Social, Sexuality)

https://tes.sagepub.com/content/24/1/3.abstract
Article on required ability to accommodate students with multiple impairments.

https://www.perkins.org
Fact sheet for parents on the implications and necessities for effective IEP planning from Perkins.

https://www.cadbs.org/news/the-importance-of-having-the-disability-of-deaf-blindness-checked-in-the-iep/
Insuring educational planning is appropriate and matching disability to services.

https://tsbvi.edu/seehear/archive/strategies.html
Teaching Strategies and Content Modification for the Child with Deafblindness

The Minnesota Deafblind Project :Information and suggestions from this valuable resource.

https://www.tsbvi.edu/seehear/fall05/essential.htm
An article on how to individualize literacy experiences for visually impaired children.
Answers to questions regarding specific disabilities and speech/communication supports.

https://leader.pubs.asha.org/article.aspx?articleid=2280104&resultClick=1
Answers to Your Biggest Questions About Services for People With Severe Disabilities

https://www.lifeprint.com/asl101/topics/tadoma.htm
Tadoma vs Sign Language :  Interesting article on the differences and uses of 2 different means of communication with the deafblind.

https://www.deaf-rights.state.mn.us/content.do?term_id=14&level=2
Navigate to your state and find information on resources, civil rights, legislation, etc.

https://nationaldb.org/library/list/51
Reference sheets as to needs, curricula, practices, resources, etc.

https://www.tsbvi.edu/seehear/summer04/deafblind.htm
Modifications in O&M techniques for deafblind individuals.

https://nationaldb.org/library/page/1936
O&M skill development, instruction and its necessity.

https://www.projectsalute.net/Learned/Learnedhtml/TeacherPerspective.html
Interesting perspective from a classroom teacher.

https://nationaldb.org/library/page/1965
Extensive information as to deafness, blindness, deafblindness and the importance of an interdisciplinary approach in working with these children.

https://www.tsbvi.edu/seehear/summer01/motor.htm
This list from Texas School for the Blind and Visually Impaired provides numerous activities to enhance the motor skills of infants and toddlers who may be blind or visually impaired. Available in Espanol.

https://www.csun.edu/
This article by Rita Snell explains typical development, the effects of disabilities, head control, rolling, and sitting.

https://intervener.org/docs/what_is_%20deafblindness.pdf
The correlation between deafblindness and its effect on motor development.

https://www.pathstoliteracy.org/pre-braille
Excellent and easy to use resource of motor milestones, activities for pre-Braille skills development, and simple instructional strategies.

https://www.aph.org/pe/art_lieberman1.html
Activities and adaptations.

https://www.tsbvi.edu/seehear/fall02/sexual-health.htm
Sexual Health Care: Excerpts from Introduction to Sexuality Education for Individuals who are Deafblind and Significantly Developmentally Delayed.  Guidelines and Methods of Instruction for parents and professionals.

Continuing Education (Career and Vocational Education)

https://www.deafblind.com/dbchoice.html
Options, supports, and how to plan for the future.

https://www.karmayog.com/ngos/hkidb.htm
Interesting article describing needs and supports in providing career and vocational opportunities in a foreign country.

https://www.tsbvi.edu/deaf-blind-project/2628
The importance of organization in the home of a deafblind child.

https://www.amazon.com/After-Tears-Parents-Raising-Disability/dp/0156029006
Parents discuss challenges of raising children with disabilities and address common interests.

https://www.amazon.com/Changed-Child-Barbara-Gill/dp/0385482434
Stories from parents who have been there.

Handbook that assists parents in understanding the needs of their children and to access appropriate services (Perkins School for the Blind).

https://www.amazon.com/From-Heart-Being-Mother-Special/dp/0933149794
Nine mothers relate their stories through the parent support group process.

https://www.siblingsupport.org/
A National effort geared to brothers and sisters of people with special needs.

https://www.amazon.com/Living-Brother-Sister-Special-Needs/dp/0295975474
Easy to read publication for young sibs that addresses emotions and questions regarding their sibling with special needs.

 https://www.amazon.com/In-celebration-grandparenting-grandparents-impairments/dp/096571702X
In celebration of grandparenting: For grandparents of children with visual impairments

https://www.amazon.com/Remarkable-Conversations-developing-meaningful-communication/dp/0965717011
A Must Read for families and professionals working with deafblind learners.

Easy and affordable modifications for the dual sensory impaired child.
(Perkins School for the Blind).

https://www.skihi.org/
This website will link you to invaluable information regarding deafblind infants and children. Insights, information and intervention strategies are provided in the areas of Communication, Hearing, Vision, Orientation and Mobility, Behavior to mention a few. A program of 20 video tapes, Home Total Communication Program, provides families and professional strategies to work with students from birth through beginning school. Resources, curriculum, and materials from SKI-HI can be procured from https://hopepubl.com/ (online store).

https://www.sparkle.usu.edu/
Project SPARKLE (Supporting Parent Access to Resources, Knowledge, Linkages, and Education) is a site for parents to gain information on deafblindness, transition, touch, concept development, intervention, communication, etc. Required to set up username and password.

Model of Home Intervention for Infants, Toddlers, and Preschool Aged Multihandicapped Sensory Impaired Children.

https://www.deafed.net/publisheddocs/sub/vb6e.htm
A curriculum to assist the family in communicating with toddlers. (Boys Town Press)

https://www.amazon.com/Uncommon-Fathers-Reflections-Raising-Disability/dp/0933149689
A powerful collection of essays from 19 fathers who have raised children with special needs.

https://www.amazon.com/YOU-WILL-DREAM-NEW-DREAMS/dp/0758222823
Discover common ground with other parents and their abilities to ‘…dream new dreams…”.

https://nationaldb.org/library/page/787
Individual family stories from all over the country.

https://www.perkinselearning.org/videos/webcast/impact-deafblindness-family
Articles regarding the impact of a deafblind baby on families.

https://www.nationaldb.org/documents/products/communication-a.pdf
East-to-read information for families regarding in-home development of communication. Language, routines, addressing behaviors, touch cues, speech, Braille, sign language, assistive technology, etc.!

https://www.perkins.org/resources/educational-publications/deafblindness-educational-service-guidelines/
Advocacy tools for parents regarding TA, evaluations, IEPs, etc.

https://nationaldb.org/library/page/2285
Excellent discussion of common themes/experiences as reported by parents and tools to help- supported by Utah’s Deafblind Intervention Strategies for the Home.

https://nationaldb.org/members/profile/1512
Family stories, advocacy, using a specialist and supports.

https://www.ohiodeafblind.org/assets/wp-content/uploads/sites//images/products/holdon.pdf
20 “stay-put” play spaces for young children with sensory impairments.

https://nationaldb.org/ISSelectedTopics.php?topicCatID=42
Assessment tool for parents to assist in participation of their child’s educational planning.

https://www.tsbvi.edu/seehear/winter06/keeping.htm
A parent shores information from the 2005 conference in relation to managing life when one has a child with deafblindness.

https://www.sfsu.edu/~cadbs/Fall01.pdf#page=3
Published resource dealing with pertinent issues of students with deafblindness and their families.

https://nationaldb.org/library/list/68
Handouts from a workshop in 2006 regarding advocacy, sample legislative letters, and advocacy for the deafblind child.

https://support.perkins.org/site/PageServer?pagename=Webcasts_Families_As_Partners
Webcast of 9 chapters depicting family participation in the educational team.

https://support.perkins.org/site/PageServer?pagename=Webcasts_Love_Challenges_of_Raising_a_Child_with_DisabilitiesWebcast from Perkins School for the Blind.

Webcast by deafblind expert as to how parents can advocate for their children.

https://www.parentcenterhub.org/
General information for children with disabilities and their families.

https://www.tandfonline.com/doi/abs/10.1080/1034912980450402
COACH (Choosing Outcomes and Accommodations for Children)The use of COACH and Vista in an inclusive preschool program.

Inclusion

https://documents.nationaldb.org/dbp/Article.htm
This PDF document of Deaf-Blind Perspectives offers the article by Bud Fredericks which describes the current situation of the Program, the ideal Program, and assessment of the future Program.

https://nationaldb.org/library/page/2275
This article from Deaf-Blind Perspectives explains how students with Deaf-Blindness can effectively be included in the school setting.

https://www.uvm.edu/~mgiangre/DBP95.pdf
This PDF document from Deaf-Blind Perspectives details the planning of Heidi. It includes uses of the COACH program, a case study of Heidi, and the outcomes of Heidi.

https://documents.nationaldb.org/dbp/pdf/may97.pdf
This PDF document from Deaf-Blind Perspectives explains the background of the TASK force, what they do, and the issues that they have discovered.

https://nationaldb.org/library/page/2115
This article by parent and school psychologist, Nancy Hartshorne, Ed.S., explains the experience of Jacob, a 12 year old with CHARGE. It details the outcomes and efforts of his inclusion.

https://www.uvm.edu/~mgiangre/JVIB9589(3)262-266.pdf
This article details research that was done with students who are Deaf-Blind and how to make the decisions for their support services, and how to develop appropriate accommodations.

https://www.cde.state.co.us/
This fact sheet from the Colorado Services to Children with Deafblindness explains the systematic planning required for inclusion.

Transition

Customized Employment

https://documents.nationaldb.org/dbp/pdf/apr08.pdf
Customized employment: A strategy for developing Inclusive Employment Opportunities by Robin Greenfield of Idaho Deaf-Blind Project defines what customized employment is and details how it was used for a particular young adult.

Transition planning for a student with Deaf-Blindness

https://www.uvm.edu/~cdci/archives/mgiangre/DBP95.pdf

Heidi’s Inclusion in Junior High: Transition and Educational Planning for a Student with Deaf-Blindness from Deaf-Blind Perspectives 1995 describes how the COACH process was used for a particular young adult. It identifies her and her family’s goals and hopes for her future.

Transition
https://nationaldb.org/documents/products/transition01-09.pdf
This article from National Consortium on Deafblindness explains the importance of early planning at IEP meetings, available transition services, and real-life success stories of young adults with Deafblindness.

NCDB Transition Packet
https://www.nationaldb.org/NCDBProducts.php?prodID=49
This is a direct link to the NCDB Transition Packet. Here, you will find additional resources on the topic of transition.

Adult Services Checklist
https://nationaldb.org/documents/products/AdultServicesChecklist.doc
This checklist from NCDB clearly shows the adult services available to adults with deafblindness. It includes education, employment, independent living, and legal/advocacy services.

Effective Transition Planning for Successful Postsecondary Outcomes
https://sunsite.utk.edu/cod/pec/products/1998/ingraham.pdf
This article by Cynthia L. Ingraham, James Belanich, and Susan Lascek explain the importance of planning for the future of students with deafblindness, self- identification, accommodations, and particular case-studies.

National Transition Follow-Up study of Youth Identified as Deafblind: Parent Perspectives
https://www.nationaldb.org/documents/products/transition.PDF
This study performed by Jerry G. Petroff, Ph.D, details the characteristics of the youth identified with Deafblindness, their school and post-school experiences, and the parental satisfaction.

Questions for Parents of School Age Children in Planning Transition to New Teachers
https://www.cde.state.co.us/cdesped
This checklist of questions from the Colorado Services to Children with Deafblindness will help parents make sure their child’s teacher and staff knows enough about your child to adequately support him/her.

Suggestions for Creating Successful Transitions from School to Adulthood
https://www.sfsu.edu/~cadbs/35Transition.pdf
This fact sheet from California Deaf-Blind Services details important steps for transition planning at IEP meetings, the value of teaching social skills, and the importance of documenting everything.

Transition Timeline
https://www.usdb.org/deafblind/db/Lists/TRAINING%20AND%20TECHNICAL%20ASSISTANCE/Attachments/2/timeline0807revision.pdf
This timeline from the Utah Schools for the Deaf and Blind clearly displays the recommended steps from age 1- 22 in order to best prepare for transition of a person with Deafblindness.

Transition: How Parents and Teachers Can Help
https://www.cde.state.co.us/cdesped
This article from the Colorado Services for Children who are Deafblind details a list of suggestions that “get the ball rolling” when planning for transition with youth who are Deafblind.

Transition: What is it? When should it be done and who is Involved? Part 1 and Part 2
Part 1: https://www.usm.edu/msdb/PDF-files/Focus%20Flyer-Fall%202005%20-%20Transition.pdf
Part 2: https://www.usm.edu/msdb/PDF-files/Focus%20Flyer-Fall%202005%20-%20Transition.pdf
This resource from the Mississippi Services for Deaf-Blind explains Person-Centered-Planning, resumes, available adult services, and many other transition resources.

Person- Centered Planning
https://nationaldb.org/ISSelectedTopics.php?topicID=916&topicCatID=22
This link will direct you to the NCDB’s numerous resources on Person-Centered Planning.

Transition Guides Developed by State Deaf-Blind Projects
https://nationaldb.org/ISSelectedTopics.php?topicID=908&topicCatID=22
This link will direct you to the NCDB’s numerous resources on Transition Guides.

Creating Vocational Portfolios for Adolescents with Significant Disabilities
This webcast from the Perkins School for the Blind explains what a vocational portfolio is, how to create and use one, and why they are important.

IEP & Transition Planning
https://www.ncset.org/topics/ieptransition/default.asp?topic=28
This article from the National Center on Secondary Education and Transition has FAQ on transition for students with Deafblindness, research, promising practices and additional resources.

Key Provisions on Transition: Side by side comparison of IDEA 1997 and IDEA 2004
https://ncset.org/publications/related/ideatransition.pdf
This PDF file shows a clear comparison of the revisions made from the 1997 IDEA to the 2004 IDEA.

Assessment (Early Identification, Portfolios, Callier Azuza,…)

https://www.sense.org.uk/help_and_advice/families/Deafblindness+and+your+child/identification_assessment
A website from the UK for deafblind people depicting causes, assessment, rubella, communication, and how the population is changing.

Oregon’s deafblind project website with workshop information, dissemination of materials and TA.

https://deafblindinternational.org/PDF/Communication%20Matrix%20Article.pdf
An international organization to raise the awareness of deafblindness.

https://www.nationaldb.org/dbp/may2004.htm Type “assessment” and find a large array of assessment tools for various situations.

https://www.eric.ed.gov/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=ED102797&ERICExtSearch_SearchType_0=no&accno=ED102797
Type “assessment for deafblind” and find various titles referring to assessment.

https://assessmentseveredisability.wikispaces.com/Callier-Azusa+Scale
A detailed description of this tool and its uses.

Behavior

https://www.tsbvi.edu/seehear/fall04/deafblind.htm
SEE/HEAR is a quarterly newsletter addressing issues for families and professional- several address behavioral issues.

https://www.nationaldb.org/dish/behavior.htm
DISH stands for Deafblind Intervention Strategies for the Home and provides invaluable information on behavior and communication.

Advocacy (Self Determination, Quality of Life)

https://www.tsbvi.edu/1029-empowered-curriculum
An activity based self-determination curricululm for VI students.

https://www.usdb.org/deafblind/db/CIT%20Web%20Lessons/Self%20Determination/SelfDeterminationGP/SelfDeterminationGP_print.html
Defines self determination and characteristics and how to get started.

https://www.deafblindinternational.org
Qualities needed for empowerment and continuation of services.

https://nationaldb.org/dbp/pdf/dec94
Article in Deaf-Blind Perspectives on improving outcomes and quality of life.