A Golden Standard of Rehabilitation
Background
When the EBU Rehabilitation, Vocational Training and Employment Working Group first met in Paris, 2004, we added a new point to our Plan of Action 2004-2007:
“Minimum standard of rehabilitation. The Commission will make a minimum standard of rehabilitation for blind and partially sighted people”.
Our experience is that there is a wide variety in rights, welfare benefits and aid within EBU when it comes to rehabilitation. The aim is to use these standards to lobby for a change in EBU member states. This paper can be seen as a tool to lobby for and obtain rehabilitation on equal grounds.
In some countries the term ‘habilitation' is used to describe the wide range of methods used to assist in enabling persons who are born with disabilities. Their needs are often different from the needs of people who acquire disabilities later in life. However, in a modern definition (re)habilitation has a holistic approach far beyond the health sector and embraces a wide range of issues including education, social counselling vocational training, transport, accessibility and assistive technology.
UN Convention on the Rights of Persons with Disabilities
Article 26: Habilitation and rehabilitation says that “State Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.”
This can be seen as very important; the UN Convention highlights the rights and place of people with disabilities within society and mainstreams disabilty into the human rights regime.
St. Petersburg Declaration of September 2006
Another important step in this direction is also the Council of Europe St. Petersburg Declaration of September 2006 which adopted a ten-year action plan to improve the quality of life for people with disabilities. Every member state must report on the implementation of the action plan.
Strategies
Sources of verification of the follow-up include:
- translation of the action plan to at least 10 languages within the 46 member states,
- at least one event in each member state to focus on the action plan,
- ensure that relevant NGOs and disabled people are aware of the action plan,
- media coverage in each member country,
- Forum to monitor member states' follow-up of the action plan,
- member states committed to send high ranking officials from appropriate authorities to the Forum,
- member states to ensure participation of people with disabilities to the Forum and to meetings in the Council of Europe.
Assumptions include the political will from the member states to initiate action and to cooperate on European level.
EBU challenges in this perspective:
- to limit the gap between western and eastern states,
- to clarify the need of rehabilitation to European governments,
- to seek a legal right to rehabilitation for all VIPs in Europe, no matter which country,
- to define a minimum standard that all VIPs can demand from their community,
- to be a vehicle to demand equality in daily life.
What is Rehabilitation for visually impaired people (VIPs)?
Traditionally, rehabilitation has been defined as a professional, medical or health-related service delivered to patients or clients who are determined to be in need of these services based on their diagnosed conditions. In a more modern definition, we recognize that rehabilitation is a process, or set of processes, which is planned with well-defined goals and means, where several professions or services cooperate in assisting the individual user in his or her efforts to achieve best possible functioning and coping capabilities, and promoting independence and participation in society.
This is a very broad definition, and it includes all aspects of life, e.g. the UN Convention on Rehabilitation. For the visually impaired, rehabilitation means “effective and appropriate measures”. In this broad definition of rehabilitation, the concept of user participation in the decision-making process is very important.
It is important to stress the fact that this definition of rehabilitation involves individuals and the opportunity to participate. They shall not only receive assistance, but they must target their different goals for their lives. The assistance must be different from person to person. User participation is therefore seen as absolutely necessary in achieving individual goals, because the user knows best what his or hers needs are, and the professional helpers are there to assist in this process.
Rehabilitation must therefore be understood as the individual needs and daily living situation, as well as a holistic perspective on lifelong processes and various activities that leads to an equal and independent way of life. This can involve medical, social, vocational and psychological rehabilitation, among others. For visually impaired people it is important to acknowledge the necessity to learn and adapt new skills to compensate for the lack of function in daily life. This involves rehabilitation on the physical, functional and psychosocial level.
What is a Golden Standard of Rehabilitation?
The right to rehabilitation is a legal issue in many European countries. There seems to be a wide gap between many countries in Europe depending on how seriously the different governments are dealing with this issue. However, the Council of Europe requires its member states to ratify the St. Petersburg Declaration of 20 September 2006. On this background, it is high time the European Blind Union demands the right to rehabilitation for the visually impaired and urges its member countries in the EBU to lobby for a right to basic and elementary visual rehabilitation. As mentioned above, this Declaration is the start of the Russian Federation follow-up of the action plan lasting until 2015.
Basic rehabilitation plays a great role in the adaptation of newly visual impaired people in their daily lives. One can define basic rehabilitation for visual impaired people in three stages:
- Physical rehabilitation is learning orientation and mobility skills. This involves the use of the white cane, a guide dog, human guidance or free taxis or other transport. Physical activities are an important factor in the rehabilitation process.
- Functional rehabilitation involves learning to use technical devices, such as computers, learning Braille or technical aids for use in daily life. By learning practical things such as handicrafts, cooking, ADL, you learn to use your fingertips and train other senses in order to compensate for the lack of vision.
- Psychological rehabilitation is adjusting to a new situation where everything has changed because of the loss of vision. This involves counselling from professionals such as psychotherapists, social workers or others. The work of peers is very important. Rehabilitation must also involve other family members.
Why is this necessary? Why define a Golden Standard?
Within medicine, rehabilitation seems to have a low status. However, rehabilitation in a modern, holistic definition involves many professions and individual needs are the central focus. Rehabilitation can therefore be seen as very important as
- A tool to compensate for loss of function in daily life,
- A tool to seek and maintain employment,
- A tool to maintain dignity, self-esteem and quality of life,
- A tool to participate as an equal citizen,
- A tool for lobbying and awareness-raising for a more inclusive Europe.
The opposite of rehabilitation is isolation. Unfortunately, this is a fact of life for many visually impaired people. Without rehabilitation, you isolate yourself in your home and become a victim for many other medical conditions, loneliness and, in worst cases, poverty and lack of social network. The need for structural and systematic rehabilitation must therefore not be ignored. It is the only option.
EBU Working Group on Rehabilitation, Vocational Training and Employment
Unn Ljoner Hagen, Norwegian Association of the Blind and Partially Sighted
December 2006