The aim of this page is to try and gather as much information
on the subject of deafblindness that can be found on the Internet. You
know that pages on the Net come and go sometimes very quickly and because
of this I have come across many interesting sites with interesting
articles on them. However, when you visit the site again, usually the article
or site has been removed and this can be very frustrating if the article
was an interesting one, and you wanted to put a link to the page itself.
Because of this problem I now have included this archive on my pages.
It will contain articles which I believe would be of great interest to
deafblind people themselves, professionals who provide a service for us
and especially parents of deafblind children.
The articles below will contain the full text which was
on the original site, it will also contain the authors details. I have
only edited the documents to try and make them more accessible for people
like myself, but the text itself is as it was on the original site, and
where possible I will put a link directly to the organization itself at
the end of the article. I have nothing to do with these documents in any
way - they are really the property of the organizations themselves. I haven't
asked permission from any of them to put these articles on my pages as
this would take too long for me to try and contact every individual to
The idea is that these documents will always be available
to anyone who is interested, and they will be available on the A-Z to Deafblindness
* If you know of, or have, any fact sheets or documents
like the ones below, I would be very pleased to put them on my Archive
page. Thanks for reading this.*
with Disabilities Act - Communications Accommodations Project. Self-Evaluation
Checklist for Health Care Facilities and Service Providers to Ensure Access
to Services and Facilities by Patients Who Are Blind, Deaf-Blind, or Visually
Impaired. The purpose of this pamphlet is to provide practical, cost-effective
solutions concerning access to services and facilities by your patients
who are blind, deaf-blind, or visually impaired. The intended audience
for this pamphlet is providers who operate professional offices and administrators
of other facilities, such as hospitals and nursing homes, that are places
of public accommodation covered by Title III of the ADA. This pamphlet
also contains information that is relevant to publicly owned or operated
health care institutions covered by Title II of the ADA.
Americans with Disabilities Act- Communications Accommodations
for Hotels and Motels to Ensure Access to Services and Facilities by
Customers Who Are Blind, Deaf-Blind, or Visually Impaired. The purpose
of this pamphlet is to provide practical, cost- effective solutions concerning
access to hotel services and facilities by your guests who are blind, deaf-blind,
or visually impaired, as required by the Americans with Disabilities Act
for young adults born Deafblind, Leaving school and making plans for
the future is an important time for all young adults and parents. This
is especially true for people who are born deafblind and their parents
and carers. This factsheet was produced by Sense.
and Culture, How They Relate to Service Development and Advocacy for
People Who Are Deaf-Blind. A Report on a Presentation by Dr. Harlan Lane
at the Hilton/Perkins National Conference On Deafblindness.
INTERACTIONS: IT TAKES TWO, This fact sheet was adapted from one originally
written by Kathleen Stremel and published and distributed within the state
of Mississippi by the Mississippi State wide Project for Individuals who
are Deaf and Blind. This document makes very interesting reading and I
would advise any social worker for Deafblind people, or specialist who
works in this field to read it. I found it very interesting myself and
I think you will as well.
Rubella Syndrome, by Susan Reef, MD and Victor Coronado, MD Rubella
is a viral illness caused by a togavirus of the genus Rubivirus.
without Language: Building Quality Interactions with Children Who are
Deaf-Blind by Linda Hagood, Education Specialist, TSBVI Outreach Department
with help from Kate Moss, Family Training Coordinator.
in Our Classrooms, Emphasis on technology in schools has made computers
available to children in educational programs throughout the country. Books
are brought to life on the screen, and children explore the world from
their desktops via the World Wide Web. With modifications of hardware and
software, teachers of children who are deafblind can take advantage of
this exciting technology to enhance communication development, educational
activities, and leisure time.
Beginning Communication with People Who are Deafblind. Due to the severe
shortage of training courses specific to deafblindness, many people working
in the field are untrained. Support providers may begin their work with
people who are deafblind with feelings of inadequacy and apprehensiveness
simply because they do not have even a basic knowledge of how to make contact
or communicate with an individual who is deafblind. Perhaps the question
most frequently asked is, "Where do you begin?" Although the following
practical guidelines have been written primarily for use with people who
are congenitally, or prelingually, deafblind, steps 1 - 4 in particular
can certainly be used with many other individuals who are deafblind. by
Sharon Barrey Grassick. This is a great article and I would really urge
you to read it.
and Creative Being, "To attain the freedom to live happily with others
you need to see yourself as part of the culture and the culture as part
of yourself" Klaus Vilhelmsen is head of the school department at Institutionen
for Døvblinde, Denmark.
(CMV), CMV, a member of the herpes virus family of DNA viruses, is
a large, membrane-enveloped virus.
or Deaf-blind, Side Bar On Terminology. In 1991, Salvatore Lagati began
a crusade to get international acceptance of the single word "deafblind"
in place of the hyphenated word "deaf-blind." His belief was that "deafblindness
is a condition presenting other difficulties than those caused by deafness
and blindness" (Lagati,1993). The hyphenated term indicates a condition
that "sums up the difficulties of deafness and blindness." The single word
would indicate a different, unique condition and that impact of dual losses
is multiplicative rather than additive. I use the word Deafblind myself
but who am I to say ?.
of deaf blind-children. In 1993 a study of deaf-blind children in interaction
with their caregivers was started. The objective of the study is to describe
early patterns of interaction between the deaf-blind children and their
parents both with respect to content of the interaction and means
of communciation. By Gunilla Preisler and Helena Norström.
miss out in the High Street. New research released last month reveals
that one in four people with both significant hearing and sight loss have
gone without food or medicine because shopping is currently so difficult
for them. This article was published by the RNIB in there New Beacon magazine
in the June 2000 issue.
Consultation. Local Authority Circular Lac (2001) 8 Title: Social Care
For Deafblind Children And Adults. This is a very interesting document,
It is from the Department of Health in the UK, Basically under section
7 guide lines ( which means strongly recommends with out it being law.)
it is saying that local authorities are abliged to:fined Deafblind people,
and keep a record of them, the Deafblind people have a right to a 'specialist
assessment',and appropriate services, with this all people working with
deafblind people have got to have a 'basic training' for all people working
with deafblind people.
by Joyce Ford, a Parent. Teaching skills to my son who is deaf-blind
has often meant dissecting activities into tiny increments. To drink from
a cup begins with locating it, grasping it, lifting it... and ten steps
later taking a sip.
with Usher Syndrome, compiled from conversation on the Deaf-Blind List.
by Kate Moss, TSBVI Deafblind Outreach. One of the many issues parents
of young adults with Usher Syndrome and other conditions that result in
low vision face is whether or not to let their son or daughter get their
driver's license. This topic was discussed at great length recently on
the Deaf-Blind List.
Communication, How Children Send Their Messages to You. This fact sheet
was adapted from one originally written by Kathleen Stremel.
AND PROFESSIONAL COLLABORATION IN THE DEVELOPMENT OF HAND IN HAND:
ESSENTIALS OF COMMUNICATION AND ORIENTATION AND MOBILITY, A SELF-STUDY
INSTRUCTIONAL PACKAGE. Kathleen Mary Huebner, Ph.D., Pennsylvania College
of Optometry and Susan Jay Spungin, Ed.D. American Foundation for the Blind.
and Vision Loss Associated with Down Syndrome, by Kate Moss, Each year
approximately 3,000 - 5,000 children are born with Down syndrome. (Pueschel)
Most of us are familiar with this syndrome, but may not be aware that a
large number of these children have vision and/or hearing loss. I certainly
wasn't until I began to notice the number of children reported on the deafblind
census with an etiology of Down syndrome. It occurred to me that we should
know more about the vision and hearing issues these children face and how
these impairments impact their educational programming.
do deafblind people cope?, From Disability International. Many people
would have mixed emotions if if they entertained the thought that one of
their acquaintances had become deaf and blind, which would not be a surprising
reaction considering that most information about the environment is taken
in through the eyes (about 80 per cent). And then there is that which is
received by the ears.
Parents and Carers can Assist Early Intervention. by Sandy Joint. This
article is the first of a practical series to promote the early development
of infants who are deafblind using a methodology known as Body Signing.
Body Signs are a form of tactile signs that can be drawn or made directly
onto the body of a child who is deafblind with minimal interference to
their hands or the activity they are involved in.
for Early Intervention Services to Infants who are Deaf-Blind and Their
Families. Appropriate early intervention services are important for
the development of communication skills in infants who are deaf-blind.
Oftentimes, however, early intervention programs are not staffed by people
knowledgeable about the specialized needs of infants who have both visual
impairment and hearing loss.
voor Doven, The care of deafblind children at the Institute voor Doven
in Sint-Michielsgestel, the Netherlands. Tom Visser, from the Rafael Department
at Sint Michielsgestel, describes current developments and approaches to
the care of deafblind children within the department.
the dark about people who are deaf-blind ?, Most people who are considered
deaf-blind are not totally blind and totally deaf. There is tremendous
variety in the degrees or vision and hearing loss, and a great range of
individual abilities and needs among this population estimated at more
than 70,000 Americans. Courtesy of the Helen Keller National Center.
spell this out, Frances Rickford listens to the charity that uses computers,
the Internet, and a simple alphabet which takes only half an hour to learn,
to keep deafblind people in communication with the world. This Article
was in The Guardian newspaper, it is an interesting article about Deafblind
UK, it also has a little bit of info about my web site Deafblind Link days
before I had to change it's name to A-Z to Deafblindness. The article itself
is a very good one, It will let sighted hearing people know what Deafblind
UK does for it's members. It is by Frances Rickford.
Perspectives on..., Behavior, Communication and Instructional Strategies.
On July 30 - August 1, 1998, eighty parents and family members from across
the USA attended the national workshop "Going for the BEST: Building Excellence
and Strength Together" in St. Louis, MO sponsored by the National Technical
Assistance Consortium for Children and Young Adults with Deaf-Blindness
(NTAC) and the National Family Association for Deaf-Blind (NFADB). The
children of these 80 parents represented the full diversity found within
deaf-blind population, as well as an age-range from infant to young adulthood.
Evaluation of Children who are Deaf-Blind. An Overview with Recommendations
for Practice, By Harvey Mar, Ph.D. Evaluation of students who are
deaf-blind is a challenge to all concerned. From the psychologist's point
of view, there are few professional standards to go by. Most psychological
tests are inappropriate because they have been developed for students with
normal vision and hearing.
the profile of deafblindness, R N I B's Corporate Deafblind Services
Co-ordinator, JOHN WADSWORTH, draws attention to the lack of recognition
and service priority given to the needs of deafblind people, and outlines
how the organisation is trying to improve its own provision.
Canadian Deafblind and rubella Association research on late emerging
manifestations of rubella. by Dr Mike Steer, Renwick College.
Parent Perspectives on Psychoeducational Assessment: Filling the Gap Between
Parents and Practitioners. An evaluator is preparing to conduct an assessment
of a 7-year-old child who is deaf-blind. The child attends a special education
program for children with severe disabilities where he receives speech/language
therapy, occupational therapy, and mobility training. Materials are gathered,
necessary papers collected, and the test kit is organized. Is the evaluator
ready to conduct a psychoeducational assessment on this child? As we talk
to more and more parents, we are learning that the answer is, "Not really."
Signs and Symptoms, Childhood Infections. Rubella infection is commonly
known as "German measles" or "3-day measles." It may begin with 1 or 2
days of mild fever (99 degrees F to 100 degrees F) and swollen glands that
are usually found either in the neck or behind the ears. On the second
or third day, a rash appears that begins at the hairline and spreads downward
on the rest of the body. As the rash spreads downward on the body, it usually
clears on the face.
in Adults, Rubella Vaccine. Prevention of intrauterine rubella infection,
which can result in miscarriage, stillbirth and congenital rubella syndrome,
is the primary goal of rubella immunization programs. Up to 85% of infants
infected with rubella in the first trimester of pregnancy are affected.
Rubella presents with postauricular and suboccipital adenopathy, arthalgias,
low fever, and a transient and sometimes pruritic erythematous rash. Joint
manifestations can be expected to occur in 70% of infected adults and CNS
complications occur in 1 per 3,000 cases.
Progress. Social work services for people with a sensory impairment.
social work services Inspectorate 1998. By the Secretary of State for Scotland,
And the Scottish Office. During 1997-98 we conducted an inspection of social
work services for people with sensory impairment. This report sets out
to assist those involved in social work with people with a sensory impairment
to put into place robust, adaptable, models of service delivery for the
future. In our view it is essential that future services cover the
range of needs from the simple to the most complex and to the highest standards.
Underlying all our recommendations is the belief that people who use services
should be at the heart of developments in those services. Their active
participation in shaping the future will ensure that opportunities are
made available for them to lead ordinary lives as valued members of society.
for Rubella -- Including Immunization of Adolescents and Adults. *Guide
to Clinical Preventive Services, Second Edition, Infectious Diseases.
Language with People who are Deaf-Blind: Suggestions for Tactile and
Visual Modifications. by Susie Morgan. Communicating with individuals who
are deaf-blind is a unique experience. The language, mode, style,
speed, and aids and devices used to facilitate communication are different
from person to person. If you are interpreting for an individual who is
deaf-blind you will need to know what adaptations will be appropriate and
what additional environmental concerns you should be aware of.
a guide help scheme for deafblind people. TONY POUNDER, Unit Manager
of Northamptonshire County Council's Sensory Impairment Unit, and DEBBIE
JAMES, Service Manager, Deafblind UK describe the development of a volunteer
guide help scheme in the county.
Students Who Are Deaf-Blind and Cognitively Disabled To Effectively
Communicate Choices During Mealtime. Individuals who are deaf-blind and
have a cognitive disability may not effectively communicate their desires
and choices even when provided with the opportunity to do so, in part because
of their frequently limited communication skills. The ability of these
individuals to make choices may be further constrained by instructional
staff and caregivers, who anticipate their wishes and make choices for
them. These caregivers and instructional staff may be acting with only
the best intentions for these individuals, perhaps in the belief that they
are unable to make a meaningful choice.
Commandments of Deaf-Blind Culture, by Kerry Wadman, published on the
Deafblind mailing list on the Internet.For the un-Deaf-blind missionary,
pastor, worker, servant, interpreter, intervenor, instructor, and otherwise
hearing, sighted, mobile while in the presence of a Deaf-blind person.
This is a great article for all to read who work with people like myself.
I do hope that we all will learn from it.
Dual Sensory good Practice Guidelines for Older People with Dual Sensory
Loss. The Deafblind Persons' Charter, developed by Deafblind UK (formerly
The National Deafblind League) and presented to 10 Downing Street during
Deafblind Week, June 1995. This is a very interesting document and one
that I would say should be read by all. but it is a 127 kb document so
it may take a little time to download it to your computer but it is worth
it. take my word for it.
Syndrome & Retinitis Pigmentosa, Information & ReferralsThis
information is from the National Institute on Deafness and Other Communication
Disorders (NIDCD) Hereditary Hearing Impairment Resource Registry (HHIRR).
and Value Changes in Society impacting on Deafblind individuals, By
Mr. Paul Ennals, Director, Education, Training and Employment - Royal National
Institute for the Blind, United Kingdom. As you travel to different places
in the world, you can see many differences in the services for deafblind
children and young people. Some of the differences are due to finance;
nobody but the Scandinavians can afford the very high staff ratios that
we find in their centers.
and Within Us: The DeafBlind Gift. I am John Lee Clark. Then I am DeafBlind.
One can be Deaf and Blind with any asymmetry, but it is only through embracing
oneself that one can be truly DeafBlind. My aspiration here is to
share with you what all DeafBlind children and the people who live with
and around them must fathom. I hope what I extend to you is a sagacity
in which you can absorb the beauty of DeafBlind culture, life, and people
that is here with and within us. By John Lee Clark. This is a great little
article, one that should be read.
finally, The Pinball Wizard. I have used many search engines on the
net to try and find useful information for people like myself and for others
who are interested to find out more about us, and those who provide
services for us. But some of the search results can be very unusual. I
found this one and thought perhaps it was interesting enough for me to
put on this page for a little bit of fun... It's a song from a famous song
singer called Sir Elton John. He sing song about a Deafblind person who
is good at a game called pinball. Here are the words from the song, Enjoy...
A-Z to Deafblindness http://www.deafblind.com