The UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities in relation to Elderly with Acquired Deafblindness with special emphasis on the first rule, "Awareness raising".
Plenumforelæsning afholdt på det europæiske seminar om aldersbetinget døvblindhed, Ancona, Italien, oktober 1998 af Kirsten Jansbøl, Videnscentret for Døvblindblevne
I am pleased and honored to have the opportunity to speak to you about the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities in relation to elderly persons with acquired deafblindness.
With the publication of the UN’s Standard Rules, the goals for the general disability policy regarding equality and provision of equal opportunity for persons with disabilities have attained concrete form in several key social areas.
And although I know that these rules were not elaborated for the elderly deafblind, (because who in the late 1980s and the beginning of the 1990s thought of elderly with acquired deafblindness?), the Rules are quite useful for considering what we ought to do or could do to enable society to meet their needs and to give them equal conditions of participation with other elderly people in society.
In my presentation of the Standard Rules, I will begin by talking a little about the background for the rules and the philosophy behind them, and then use more time on the first rule, Awareness-raising. I will conclude with mentioning the other rules as they apply to elderly persons with acquired deafblindness.
The background for the standard rules
Let me talk a little about the background for The UN Standard Rules and the philosophy behind the UN Standard Rules.
As you know persons with disabilities live in all parts of the world and at all level in every society. The number of persons with disabilities in the world is large and growing.
The present disability policy is the result of developments over the past 200 years. Over the years, the policies have been a product of the general living conditions and social and economic policies of different eras. In the disability field, however, there are also many specific circumstances that have infuenced the living conditions of persons with disabilities. Ignorance, neglect, superstition and fear are social factors that throughout the history of disability have isolated persons with disabilities. (And with regard to elderly persons with aquired deafblindness ignorance is one of the keywords.)
As you all know, disability policy has developed from elementary care at institutions to education for children with diabilities and rehabilitation for persons who became disabled during adult life. And through education and rehabilitation, persons with disabilities have become more and more active and a driving force in the futher development of disability policy. And as you know, organizations of persons with disabilities, their families and advocates have been established, which advocated improved conditions for persons with disabilities.
Towards the end of the 1960s, organizations of persons with disabilities in several countries began to formulate a new concept of disability. This new concept indicated a close connection between the limitation experienced by individuals with disabilities, the design and structure of their enviroments and the attitude of the general population. In other words, a person with an impairment becomes disabled in meeting with his or her enviroments and society.
This new concept has been vital in developing disability policies.
The same time - back in the late 1960s - the problems of disability in developing countries were more and more highlighted. In some of these countries, the percentage of the population with disabilities was estimated to be very high and, for the most part, persons with disabilities were extremely poor.
This situation of many persons with disabilities in the developing countries resulted in the rights of persons with disablities becoming a subject of much interest and attention in the United Nations over a long period of time. This attention led to the declaration of 1981 as the International Year of Disabled Persons, soon followed by annoncing the United Nations Decade of Disabled Persons (1983-1992).
The most important result of International Year of Disabled Persons, was the World Programme of Action conserning Disable Persons. This programme emphasised the right of persons with disabilities to the same opportunities as other citizens and to an equal share in the improvments in living conditions resulting from economic and social development. This philosophy appears in the Standard Rules, and it is this philosophy which has made the Rules useable in all countries, despite different economic, social and cultural situations.
Some countries wanted the Decade of Disabled Persons to end by a ratification of an international convention on the elimination of all forms of discrimination against persons with disabilities. However, representatives in the United Nations asserted existing human rights documents already guaranteed persons with disabilities the same rights as other persons.
Because of this desagreement, they finally agreed instead to concentrate on the elaboration of a new international instrument of a differnt kind: The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, which was formed/elaborated followed by many discussions before The Rules were ratified in the United Nations General Assembly on December 20, 1993.
Although the Rules are not compulsory, they can become international conventions rules when applied by a large number of States with the intention of respecting a rule in international law. The Rules imply a strong moral and political commitment on behalf of States to take action for the equalization of opportunities for persons with disabilities.The rules set out important principles for responsibility, action and cooperation. They point out areas of importance for the quality of life and for the achievement of full participation and equality.
The overall purpose of the Rules is to ensure that persons with disabilities as members of their society may exercise the same rights and obligations as others.
The set of Standard Rules consist of 22 rules.
The first four rules concerns preconditions for equal participation. They prescribe that there must be created awareness in every country about the needs and rights of persons with disabilities, and that states must ensure access to treatment, rehabilitation and other support services for persons with disabilities, in order for them to participate on equal terms in society.
These preconditions, rules are followed by eight rules concerning target areas for equal participation. Here concrete guidelines are given for ensuring access both to the physical environment and to information and communication, as well as providing education, employment, income maintenance and social security, family life, culture, recreation and sports, and religion.
The last ten rules concern implementation measures, that set up guidelines for governments and other responsible political authorities to use as the basis for initiatives and programs in the field of disability.
Don't worry, I won't talk about them all. As I have said earlier I will concentrate on rule no. 1: Awareness-raising.
In my review of the rule, I will replace the phrase "persons with disabilities" with the phrase "elderly with acquired deafblindness" in order to help us see what opportunities the specific rule contains relating to the elderly deaf blind, and to consider what kinds of obligations for the society the individual rule contains in relation to our particular group.
Rule no. 1: Awareness raising
There are several reasons for my choosing to concentrate on this rule. First, it is the most important of all the rules because increased awareness is a precondition for carrying out any additional concrete measures. Second, one of the most important problems for the elderly with acquired deafblindness is that they do not acknowledge themselves as "elderly with acquired deafblindness", nor do those persons in contact with them. Third, because this rule is less dependent on economic, social and cultural factors in the individual countries than are the other rules. Fourth, because many of the other topics at this seminar concern the content of the other rules regarding preconditions and target areas.
And finally, because awareness-raising is an area with which I have put in a great deal of work as part of the activities of the Information Center for Acquired Deafblindness. Therefore I can provide practical examples and share with you some of the considerations we have had and describe some of the strategies we have utilized.
Rule no. 1. Awareness- raising: "States should take action to raise awareness in society about persons with disablities, their rights, their needs, their potential and their contribution."
Try for a moment to reflect on the possible extent of this rule or sentence:
"States should take action to raise awareness in society about elderly persons with acquired deafblindness, their needs and their rights."
But don’t get too happy yet. As I mentioned before, the rules are not binding, but only morally obligating. But all the governments of our countries’ have ratified the rule, and are thus morally obliged to take action to raise awareness in society regarding elderly persons with acquired deafblindness, their needs and their rights.
The key words and key questions in the rule are:
- "To raise awareness" - How?
- "In society" - Who is society?
- "About elderly deafblind" - Who are they?
- "Their needs and rights" - What exactly are these needs and rights?
The last question regarding "Their needs and their rights" are dealt with in the three other rules for preconditions and for target areas.
Here I will concern myself with the other key words and key questions.
Who are the elderly persons with acquired deafblindness?
I will not attempt a discussion of definitions, but suffice to note the following: the category "elderly deafblind", as is known, consists of a minimum of two groups. One is the very small group of those who have been deafblind since youth or early adulthood and have now become old. Then there is the much larger group of those of interest to us here, elderly persons with age-related deafblindness.
Here we often encounter, at least in Denmark, the problem that for those in contact with the deafblind elderly it is difficult to see whether the degeneration of function in the elderly person is a result of a more general aging process, or whether we can speak of an impairment beyond aging or not linked with aging in itself.
And here we must argue that if a functional impairment becomes so serious that the earlier lifestyle can no longer be maintained in relation to communication, receiving information and independent mobility due to a combined hearing and vision impairment, then we are speaking of deafblindness.
One of the great barriers in awareness raising is that these elderly persons do not regard themselves as deafblind, but as seeing and hearing persons, who now don't see and hear well anymore.
In this context, the word "deafblind" creates a considerable barrier. Neither the individual elderly deafblind person nor those surrounding them, such as family and professionals, perceive the elderly person as "deafblind". In general, we tend to regard the deafblind as being in the same sensory situation as Helen Keller, that is, totally deaf and totally blind. Yet this condition applies to only a very small proportion of persons with acquired deafblindness.
We therefore face a great and unique barrier in our effort to increase the awareness about age related deafblindness.
Rule Number 1, Awareness raising, has nine sub-points. In first, the attempt is made to make the concept of Society more concrete. It states:
"States should ensure that responsible authorities distribute up-to-date information on available programmes and services to elderly persons with acquired deafblindness, their families, professionals in the field and the general public. Information to elderly persons with acquired deafblindness should be presented in accessible form."
Let us stop just for a moment to look at the final, somewhat innocent-sounding sentence: "Information to elderly persons with acquired deafblindness should be presented in accessible form." "Accessible form" for the elderly deafblind could consist of audio tape, large print or Braille. Is there any country in the world which fulfills this very reasonable demand? It should be added, by the way, that this problem area belongs in Rule number 5.
But the key in this sub-point is that "States should ensure that responsible authorities distribute up-to-date information to families, professionals in the field and the general public." The rule thus states as clear as possible who it is who must have information.
As professionals, we need to look more closely at the various target groups for the information. Because there are differences between the kind of information needed by family members, the information needed by the public, and the kind of information needed by professionals. The category of "professionals" can perhaps comprise several different professional groups who need different kinds of knowledge depending on the kinds of tasks connected with the elderly deafblind.
The second sub-point refers to a method for increasing awareness and in that it states:
"States should initiate and support information campaigns concerning elderly persons with acquired deafblindness and disablility policies, conveying the message that elderly persons with acquired deafblindness are citizens with the same rights and obligations as others, thus justifying measures to remove all obstacles to full participation."
Here we can speak of information campaigns with the ultimate goal "to remove all obstacles to full participation."
When trying to initiate information campaigns about the elderly deafblind, we need to consider several strategic factors.
When we speak of information regarding the elderly deafblind, aside from clarifying exactly who will be the target group for the information, we must also consider how we can carry on calling attention to such a small group as the elderly deafblind.
Let us look at a concrete example and let me share with you some of our considerations when we wanted to initiate an information campaign directed to home helpers, who in Denmark are the professional group with the most frequent contact with the elderly deafblind living in their own homes and therefore key persons in relation to elderly deafblind persons.
- Denmark has a population of five million persons.
- Of these, 700,000 are over 67 years old.
- Among the 700,000 elderly there are about 2,500 with a combined hearing and vision problem.
- Of these, about 900 are deafblind.
How do we create awareness about 900 persons out of 700,000?
How do we conduct an information campaign about 900 out of 700,000?
The answer is probably that you don’t!
But among the 700,000 elderly there are approximately 50,000 visually impaired and additional 350,000 hearing impaired, of which 200,000 use a hearing aid.
The goals of our information for home helpers was, first, to sharpen their awareness about elderly having a serious degree of combined hearing and vision impairment, and then give them a basic knowledge and some guidelines in their contact with them. In this way, the elderly could obtain more satisfactory benefits from the home helpers, and at the same time the home helpers could provide better service. But good advice on contact with the elderly with a combined hearing and visual impairment is also good advice on contact with elderly with a visual impairment and elderly with a hearing impairment.
Therefore, we thought that if we now joined forces with the Information Center for Visual Impairment and the Information Center on Hearing and Deafness, then the target group for the information campaign would cover half of Denmark’s elderly, that is, about 50% of all elderly instead of just 0.128% of all elderly.
We thought that this would mean that the leadership of the municipal home care services would become so interested in this information that they would feel more willing to give the home helpers time to acquaint themselves with the information, which is necessary for the home helpers in order to acquire the basic knowledge about dealing with the elderly with acquired deaf blindness – which is in turn a precondition for changing behavior toward the elderly deafblind.
These strategic considerations lead to the booklet, "When Vision and Hearing Fail", which was published in 55,000 copies, which is a high number under Danish conditions. The booklet was sent out to all directors of social services in Denmark’s municipalities by the National Association of Municipalities, which unites all the municipalities in Denmark, with an appeal that it be distributed to all personnel working in the municipal home care services, numbering about 50,000.
That the Association of Municipalities distributed the booklet was another of the special considerations we had. When sending a letter to the municipality’s director for social services with the appeal to ask staff members to read "When Vision and Hearing Fail" there is a great difference in the authority behind it depending on whether the appeal comes from the Information Center for Acquired Deafblindness or from the Association of Municipalities.
"When Vision and Hearing Fail" has clearly created awareness, including awareness about the specific group of elderly persons with acquired deafblindness. But much more is needed before increased awareness - in the form of information - can produce changes in behavior, which is certainly the goal with the increased awareness.
There must also be some kind of education or training, in e.g. the jobsituation.
We have therefore put together a packet of materials which we sent out to all the municipal home caregiving units during this summer. The packet has three objectives:
- To enable the municipality to be aware of andidentify those elderly who have acquired deafblindness
- To create awareness among municipal staff about the situation of elderly with acquired deafblindness
- To suggest possibilities for action
The awareness-raising material demands a time investment by the municipality of just one hour for the staff members. And this hour is used as follows:
The municipal home care office desires to upgrade the qualifications of personnel who deal with elderly persons with hearing and/or vision impairment. A meeting is arranged at the end of the work day, where the deafblind consultant briefly explains the purpose of the initiative, shows the video "Something Can Be Done", which we, at the Information Center for Acquired Deafblindness have also produced, asks the participating staff members to read three case studies concerning elderly with acquired deafblindness, and finally, asks them that to consider their clients and decide whether they have hearing problems, vision problems or both. If the home helpers have any clients with these problems, they should fill in this form (shown in the overhead) which is to be used in order to give those elderly with hearing or vision problems a relevant assistance.
The entire process, as stated, takes about an hour, and personnel will have obtained heightened awareness of the elderly with hearing and/or vision problems by taking an active position on these problems.
Here we find yet another strategic consideration. If we succeed in creating a heightened awareness about the elderly deafblind and their situation, we must on behalf of the systems which offer services to the elderly with acquired deafblindness, think in terms of better resource utilization. For example, we could have made a program for home helpers which took three hours, and thereby given them even more knowledge. But the chances are very small that the municipalities would have set aside three hours for all their home helpers in order to learn about this small group of elderly with acquired deafblindness.
We have a Danish proverb which says, "The best must not become the enemy of the good." For example, if we had only pursued the goal of a three-hour course for home helpers, which is unachievable, we would have failed in obtaining even the one hour information meeting. Then we would have allowed the best solution to become the enemy of good solution. We have made similar considerations in connection with many of our activities, including in that which I will mention now.
As a pilot project in two counties, we have brought the hearing advisory unit, the vision advisory unit and the regional deafblind consultant together to offer a course on the elderly with hearing and/or vision problems directed to key personnel in the municipalities’ home care services. The course is of six hours duration and is both awareness-raising and action-oriented. Behind this project – beside thinking in resource-conscious terms on behalf of the system – lay other strategic considerations in connection with awareness-raising for the small group of elderly people with acquired deafblindness. Denmark’s five deafblind consultants and the two staff members at the Information Center for Acquired Deafblindness cannot handle the work effort needed to create effective awareness about elderly persons with acquired deafblindness in all of Denmark’s 275 municipalities.
More actors are needed!
In Denmark, as in most countries represented here, there is a visual impairment unit and a hard of hearing unit of some kind at the regional/county level. These advisory systems must be made more active in awareness raising work about elderly deafblind, for example, in the form of the six-hour training course mentioned above. Only by getting more actors into the field can the awareness raising work obtain the necessary effect.
A very great additional advantage of this project is that the two advisory systems for people who are, respectively, hearing and vision impaired become aware that they have clients who have a double impairment, and whom they must take into consideration if they are to provide these persons competent advice in connection with e.g. technical aids. Coordination of the regional hearing and vision efforts is necessary in order for the elderly to obtain adequate treatment. But this problem belong to Rule number 3, which concerns rehabilitation. And here Frank Jorritsma, Yvonne Jonssen and Jan Prickarts have talk about how it can be done in Holland.
Has this, relatively comprehensive, awareness-raising effort in Denmark had any effect?
This is, of course, very difficult to measure, for much so-called "soft data" enters into any such measurement or assessment. But a more tangible goal could be the number of elderly deafblind who are referred to the countrywide deafblind consultant system. These referrals typically come from the municipal system.
When the Information Center for Acquired Deafblindness began its awareness raising activities about three years ago, the deafblindness consultants had knowledge of 176 persons with acquired deafblindness (both elderly and younger). Today they are in contact with 286 persons, and the number of referrals of deafblind persons to the consultants is constantly increasing and primarily elderly. It is an increase of 60% in there years.
One can therefore conclude that awareness-raising work results in more elderly with acquired deafblindness becoming identified and thereby obtain the possibility to utilize the national facilities available for people with a serious degree of combined hearing and vision impairment.
As conclusion about Rule number 1, Awareness-raising, I will cite the sub-point number 7, which states:
"States should initiate and promote programmes aimed at raising the level of awareness of elderly with acquired deafblindness concerning their rights and potential. Increased self-reliance and empowerment will assist the elderly deafblind to take advantage of the opportunities available to them."
I will now proceed to the final part of my presentation and refer to the rules which are relevant to the elderly persons with acquired deafblindness, and comment upon them.
Rule 2: Medical care
"States should ensure the provision of effective medical care to the elderly with acquired deafblindness."
All of us can agree on this. But the reality in Denmark, for example, is that there can be up to a year’s waiting time for a cataract operation, and up to 16 months’ waiting time to obtain a hearing aid. These are two critical areas for the elderly person with acquired deafblindness. This example clearly shows that willingness to fulfill the needs of persons with disabilities depends on our priorities, nationally and internationally.
While preparing this presentation, the Human Development Report appeared under the auspices of the UNDP, the development program of the United Nations. The report does not make pleasant reading. Let me give you just a few examples to illustrate our priorities. It will cost nearly 9 billion dollars to ensure that all people in the developing countries have water and adequate hygienic conditions, by which thousands of people could avoid becoming blind; and it will cost an additional 12 billion dollars to ensure basic health conditions and food for all people in the developing countries, which again would ensure that thousands of people could avoid becoming blind or suffering from other disabilities.
In comparison, in 1997 the Europeans and Americans used 11.5 billion dollars on perfume and 16 billion dollars on food for their house pets, and the Europeans consumed no less than 4 billion dollars worth of ice cream. How many cataract operations could we get for four billion dollars? But ice cream tastes good and perfume smells nice!
Back to rule no. 2, which also mentions that staff should have relevant training. In sub-point number 4 it states:
"States should ensure that all medical and paramedical personnel are adequately trained and equipped to give medical care to elderly with acquired deafblindness and that they have access to relevant treatment methods and technology"
At the Information Center for Acquired Deafblindness we have recently published a booklet entitled "Good Communication with Patients Who Have Impaired Vision and/or Hearing". The booklet could be seen as a part of the training which medical personal need in order to be able to better communicate with elderly persons with acquired deafblindness. We have brought the booklet, and we will send you the English translation as soon as it is finished.
Rule 3. Rehabilitation
Many of the presentations at this seminar concern rehabilitation, so it can be certainly very interesting to examine what the UN’s Standard Rules state about this:
"States should ensure the provision of rehabilitation services to elderly with acquired deafblindness in order for them to reach and sustain their optimum level of independence and functioning."
With the first two sub-points:
"States should develop national rehabilitation programmes for all groups of persons with disabilities. Such programmes should be based on the actual individual needs of the elderly with acquired deafblindness and on the principles of full participation and equality."
"Such programmes should include a wide range of activities, such as basic skill training to improve or compensate for an affected function, counseling of elderly with acquired deafblindness and their families, developing self-reliance, and occasional services such as assessment and guidance."
Many here at the seminar have talked about how this can be done Frank Yvonne and Jan from Hollandhave shown how the necessary coordination between hearing and vision rehabilitation can take place, and they have talk about how a hollistic rehabilitation can take place. Liz Duncan and Martha Bagly have talk about talked about communication, a very important aspect of rehabilitation, and finally I will mention Sara Goodwin and Tony Kirks presentation of te project "Assessing people with emphasis on self-reliance and empowerment.
The final sub-point in the rehabilitation rule which I will cite is
"All rehabilitation services should be available in the local community where the elderly with acquired deafblindness live."
Rule 4. Support services
"States should ensure the development and supply of support services, including assistive devices for elderly with acquired deafblindness, to assist them to increase their level of independence in their daily life and to exercise their rights."
With sub-points 1 and 6:
"States should ensure the provision of assistive devices and equipment, personal assistance and interpreter services, according to the needs of elderly with acquired deafblindness, as important measures to achieve the equalization of opportunities."
"States should support the development and provision of personal assistance programmes and interpretation services, especially for persons with severe and/or multiple disabilities. Such programmes would increase the level of participation of elderly with acquired deafblindness in everyday life at home(, at work, in school) and during leisure-time activities."
Helle Brøgger has in her workshop shown how personal assistance and interpretation services can be provided and how they can operate.
And now to the last that I will mention:
Rule 5. Accessibility
"States should recognize the overall importance of accessibility in the process of the equalization of opportunities in all spheres of society. For persons with disablities of any kind, States should (a) introduce programmes of action to make the physical environment accessible; and (b) undertake measures to provide access to information and communication."
Here I will limit myself to quoting from:
(b) Access to information and communication
With the sub-point 6:
"States should develop strategies to make information services and documentation accessible to different groups of persons with disabilities. Braille, tape services, large print and other appropriate technologies should be used to provide access to written information and documentation for persons with visual impairments. Similarly, appropriate technologies should be used to provide access to spoken information for persons with auditory impairments or comprehension difficulties."
And we can add, that when this becomes a reality, access to information for the elderly persons with acquired deafblindness will have been established.
But how do we ensure that elderly with acquired deafblindness , as members of their societies can exercise the same rights and obligations as other elderly ?
I don't not know the answer.
But I believe that if we disseminate the knowledge to the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities and utilize them in a constructive fashion, we can come a little bit further toward our goal.
This seminar is the second time in two years that the Standard Rules have formed the basis for discussions of the situation and services for persons with acquired deafblindness. The first time was in Poitiers, France, in 1996. I am sure that events like these support the implementation of the Standard Rules in the practice and policy making of professionals in Europe.
But in the end, the real value of the Rules depends most of all on whether we as professionals and te organization of people with disabilities use them or not.
Therefore, go home and read them and use them to the benefit for elderly with acquired deafblindness
Thank you for listening!