Churchill Fellow 97-54
Report by
Patricia James - 1997 Churchill Fellow
Project
To learn more about Deafblindness, its causes and implications, assessment and rehabilitation;
The initial part of the Fellowship was spent briefly visiting agencies devoted to providing a service to people who are deafblind in the United States and a brief visit to Toronto, Canada. The tour gave myself and another member of the DeafBlind Association, Janne Bidenko, a chance to look at the available range of services. It also gave us the opportunity to meet and discuss needs, services and gaps with deafblind people in North America. In all, 17 agencies were visited in the same number of days. Our travel was extensive as was the knowledge gained.
Before departing Australia, several letters were written requesting meetings with various agencies. Only one reply was received from Toronto in Canada before our departure. However, we found Americans to be most hospitable, fitting us in where their schedule and our arrival allowed. We were able to obtain information from all agencies about services provided including preschool, school, transition, employment and training, accommodation, (residential and own home support) and aged care. The following includes a description of the services visited and observations made.
The second sector of the Fellowship involved 12 weeks residing and working at the Helen Keller National Center (HKNC) in Sands Point, Long Island, New York. This period of observation, discussion with professionals, researching reading material and "hands-on" experience gave me the knowledge and confidence to approach unfamiliar situations.
The third sector of the journey included a visit to the UK. Organisations there provided new perspectives by demonstrating a different approach.
CONTENTS
Table of Contents / 1
Introduction / 2
Background / 3
The Dream / 5
Safe, Independent Housing of One’s Choice / 7
Existing Services / 7
Recommendations / 10
North American Service & Supplier Contacts / 12
UK Contacts / 18
Churchill Fellowship Report / 20
San Francisco 29/1/97 / 22
Seattle 31/1/97 - 1/2/97 / 22
Toronto 3/2/97 - 5/2/97 / 23
Springfield, Illinois 6/2/97 / 28
Washington DC 8/2/97 / 29
Boston 12/2/97 / 30
Helen Keller National Center, Sands Point New York 14/2/97 - 18/5/97 / 31
The New York Lighthouse / 36
The Jewish Guild for the Blind / 36
Workshop by American Association of the DeafBlind / 36
Adaptive Equipment / 37
UK / 38
SENSE / 38
DeafBlind UK / 39
Royal national Institute for the Blind / 39
In Conclusion / 40
INTRODUCTION
The deafblind population in Australia is small and geographically widespread. Individuals who are deafblind are isolated with little and often no support for themselves their parents, families and carers.
Services to cater for their needs are minimal or non-existent. The professionals who work with this client group are also isolated.
Australia is well behind the United States, Canada, Scandinavia and the UK in identifying needs and providing services to the deafblind community.
The population of people who are deafblind, broadly falls into two categories:
1)People who are born deafblind, acquire deafblindness basically during adulthood, or who were born with one of the senses impaired and through some misadventure, lose the other.
2)People who lose both senses through the ageing process.
In this report, I have concentrated on the first group of people. However, what I have learnt will frequently be applicable to the second group. Also, particular requirements for staff training are suitable to both groups.
This report gives the reader some background by describing the Australian situation as it existed in late 1996. It goes on to describe my visits to various centers and organisations providing services to the deafblind in the United States, Canada and the UK. It records my observations and their relevance to setting up comparable services here in NSW.
BACKGROUND
The deafblind population in Australia is small and geographically widespread. This causes isolation of individuals who are deafblind. There has been minimal networking and support amongst people who are deafblind, their parents, families, carers and professionals. Of all groups of people with disabilities, deafblind people are the least empowered and least represented at all levels in Society. Therefore, identification of the needs of people who are deafblind and the establishment of services to cater for their needs has been extremely slow.
Because of the lack of opportunities to learn methods of the most basic communication required for every day survival, individuals who are deafblind have had little capacity to learn any of the abstract concepts such as independence and advocacy which the community at large take for granted. Without a successful means of communication, the most basic requests and statements by individuals who are deafblind are either not understood or misunderstood. This frequently results in extreme frustration and behavioural outbursts leading to the unfounded categorisation of deafblind persons as intellectually disabled. This may further stigmatise individuals resulting in residential and educational placement that is inappropriate for communications learning, growth and development.
People who are deaf rely on their vision to learn about the world, to communicate, to participate in life and to belong. For people who are blind their hearing becomes the primary sense to provide information, to learn about the world, to communicate, to participate and belong. For those who are deafblind the opportunities to learn, to communicate, to participate and belong are greatly restricted.Learning is through touch, smell, taste and kinaesthetic relationship in space. Life is to be experienced rather than observed or listened to. Observing and listening to all that goes on, which we all take for granted, is only experienced at the discretion of other people. The person who is deafblind cannot choose to experience the unknown.
Deafblindness restricts independence far more than single sensory disabilities. Few deafblind people manage to function outside their home without assistance. Services to provide the necessary assistance for day to day tasks such as shopping, medical appointments, etc. are a lifelong requirement.
Most people are familiar with the name and the life story of Helen Keller -- familiar with her total deafblindness, with Annie Sullivan's success in enabling Helen Keller to learn firstly that objects have names, to communicate one person to another, and to participate in the world around her.
Deafblindness did not start or end with Helen Keller. In 1994, Mary Ward undertook an investigation into the needs of people who are deafblind in Australia. Subsequent reports by Mary Ward have:
prioritised the recommendations outlined in her first report
clearly stated the national training needs for staff who work in this field
identified a "Gap Analysis" in the field across Australia.
The population of people who are deafblind, broadly falls into two categories:
1)People who are born deafblind, acquire deafblindness basically during adulthood, or who were born with one of the senses impaired and through some misadventure, lose the other.
2)People who lose both senses through the ageing process.
In New South Wales people who are deafblind currently receive inadequate services and consequently find it difficult to learn, to communicate, to participate and belong. We have not yet located even half the estimated 500 people who are deafblind in NSW. (Mary Ward's investigation).
Unlike Helen Keller, people who are labelled as deafblind are not necessarily totally deaf and/or totally blind. Probably about 80% of people have some residual vision or hearing which assists in daily tasks. For others, a threat that their remaining vision or hearing may deteriorate demands rehabilitation for their continued ability to manage.
Until now, access to available services for people who are deafblind has been difficult. Single disability agencies have not had the communication skills or the necessary training to provide strategies for coping without sight and sound.
The DeafBlind Association of NSW was formed from staff of a number of agencies. The Association has been striving to form a coalition among colleagues to provide information. Staff in accommodation services, day activity centres, hostel and nursing home facilities and educational systems need training to skill people who are deafblind. This could enable them to more easily understand and live in the world which was primarily designed for people who have adequate if not full vision and hearing.
THE DREAM
My dream is to have services specialist enough to enable people who are deafblind to operate their daily lives independently. However, part of the dream is that the services are open enough to welcome people from general society to live alongside them, to lend a hand where necessary, to learn about their likes and dislikes, their needs and talents, and to give and take as members of any society do.
For too long, people who are deafblind have been denied access to opportunities regarded in the wider community as a birthright. People who are deafblind, because of the communications handicap, have not been able to request, demand or even plead for our time, for skills or for their birthright. My time at the Helen Keller National Centre on Long Island in New York, has provided me with the strategies to work with staff and clients to realise the dream - a dream where opportunities will be available, options will be offered and education, housing and employment will be the natural goals in living comparable successful lives in the community.
Among disabilities, deafblindness is unique. It requires unique and specialist understanding, unique and specialist communication skills, unique and specialist training for professionals. With training, professionals can provide individuals who are deafblind with skills to maximise their independence. In society as we know it, I believe that it is ALMOST impossible for a person who is deafblind to be completely independent even if they want to be. With products labelled in print, mail mostly in print, telecommunications primarily in print or voice, interpersonal communications in sound, people who are deafblind require specialist communication methods; sometimes akin to those of deaf people; sometimes by using Braille as do blind people. Modern technology can provide ways for people who are blind to read print. Computers are now available to translate print into Braille or voice synthesis. This technology is still very expensive and out of the reach of people who have not yet been given the opportunity for education and employment. Braille or large print are the main ways a person who is deafblind can read.
Deafblind people are not accepted into any part of the community. The truth of the matter is that both the deaf community and the blind community at large are also ignorant of how to communicate with people who are deafblind. Even one to one communication between people who are deafblind can be difficult and in some cases impossible.
Communication is the foundation stone for all skills attainment. Some basic modes of interaction by people who are deafblind include:- finger spelling; sign; hand-over-hand sign; speech; assisted hearing; compic; object recognition; large print; Braille; Moon; raised large print; - whatever system works best for an individual. Communication provides the building blocks to independence - such as identifying products and objects, making shopping lists, following recipes, instructions, conversation, etc..
Techniques of daily living include learning how to organise one's possessions; pouring; food preparation; cooking; cleaning; laundering and shopping. Most children learn these skills by watching significant adults at home. Parents find it quicker and easier to have the child who is deafblind kept away from household tasks - it seems better to keep the child removed to avoid accidents. This attitude prevents the most basic opportunity for contact, information and learning.
Shopping demands interaction and the ability to communicate with people in the general community. Different techniques of communication are required for different individuals. Communication cards (identifiable by the deafblind person) may be used to make requests of shop assistants, taxi drivers and members of the public.
An intervenor may be required to accompany the deafblind individual. This person facilitates interaction between the client, the environment and members of the community, informing the deafblind person of the surroundings and ensuing discussions or conversations. Decision making should be by the person who is deafblind.
Each deafblind person's background, skills and abilities are different. Some may retain speech skills acquired prior to deafness. Information may need to be spelt (finger spelling), written in Braille or print, or signed. They may then speak for themselves.
The amount of residual vision, if any, is one factor which may determine how communication is received. The time of onset of deafness, the ability to write, gesture or sign are some of the factors which determine the method of communication.
Deaf people who communicate with sign, find it difficult to learn English as it is spoken and written. Sign language does not stay within the rules of spoken or written English. Learning English can therefore be like learning a new language. Literacy skills need to be taught and fostered among deaf and deafblind people. Written English skills will also enable the use of TTY or TeleBraille for telecommunications.
SAFE, INDEPENDENT HOUSING OF ONE’S CHOICE
Some people who are deafblind live alone in their own homes. This is not always safe due to the fact that neighbourhood children sometimes tease or steal mail, etc.. They are isolated from the rest of society until someone chooses to come to their home and usually for a specific purpose -- to assist with shopping, to attend a prearranged appointment, etc..
Despite the Australian Government's "Disability Services Act" preferring people with disabilities to live in the community and participate in generically provided services, people who are deafblind require specialised methods of communication. Cluster housing would enable services to be more economically provided; would enable people who are deafblind to visit and communicate with each other; would enable the community to become involved; would allow for the more efficient use of staff and resources.
EXISTING SERVICES
In NSW at the present time, some services are provided for people who are deafblind. Services are provided without the "big picture" being considered. Small gains have been made but without the person's total lifestyle and broad needs being taken into account.
Services already in operation include:
Royal NSW Institute for Deaf and Blind Children:
Providing: early intervention, preschool, primary school, Braille transcription for school age children
Not Providing: any ongoing services, referral or follow-up;
Royal Blind Society (RBS):
Providing: some Rehabilitation which would be provided to people whose disabilities include some form of vision impairment. Services include Braille, Computer Consultancy and Training, Low Vision Clinic, Vocational Services, Rehabilitation Counselling, Independent Living Skills Training, some Recreation Resources; Braille Library, Transcriptions, Tactual Maps & Diagrams; Reference Library, and Equipment Resource Centre
Not Providing: Literacy skills, Interpreting, Specialist Support and understanding of the dual sensory loss.
NSW Education Department:
Providing: specialist schooling in Opportunity Deaf Units throughout the state
Not Providing: adult role models; evaluation for Braille use when required
Deaf Society of NSW:
Providing: some interpreting, some vocational services, awareness of deafness
Not Providing: Sign Language Teaching, Specialist Support and understanding of the dual sensory loss
Forsight Foundation:
Providing: residential group homes for individuals who are vision impaired with another disability - this is often hearing impairment or deafness
Not Providing: Individual communication methods and preferences, individualised leisure programs
SEE Foundation:
Providing: day activity programs for people with a sensory impairment combined with another disability
Not Providing: adequate communication methods and skills
Guide Dogs Association of NSW:
Providing: limited Orientation and Mobility Services to deafblind individuals
Not Providing: interpreting for clients or information about their services to deafblind individuals
TAFE (Technical and Further Education):
Providing: educational programs to people with disabilities
Not Providing: specialist teachers for people who are deafblind
Renwick College:
Providing: Masters degrees for teachers planning to work with students who are blind or deaf or with multiple disabilities
A winter school will be conducted in 1998 in deafblind communication techniques
Not Providing: specialist degree in deafblindness studies