Brainwave - The Irish Epilepsy Association - Ireland
Abstract
The Irish Epilepsy Association Brainwave was founded in 1967. It is a members' organisation for people with epilepsy. It provides information, advice, counselling, aids, training and advocacy services. It is in regular contact with about 7,000 individuals in Ireland. Initial services are provided to any person with epilepsy regardless of membership of the association. These service aim at inter alia - pre employment training to enable young people with epilepsy (PWEs) into employment, information and training for employers and fellow employees which leads to PWEs being accepted in, and remain in, the workplace.
Background
Brainwave, the Irish Epilepsy Association Brainwave was founded in 1967. This is an Irish national voluntarily organised body, which works for all people with epilepsy (PWE), their families and their carers. It is a members� organisation for people with epilepsy. It provides information, advice, counselling, aids, training and advocacy services. Brainwave points to the ongoing stigma of epilepsy in Ireland as a significant social barrier for members. It is also critical of the lack of specialist services, including neurology, epilepsy specialist centres, and epilepsy specialist nurses for PWEs. At present, there is no epilepsy centre in the country whereas most European countries have had centres for over 100 years. (It should be noted however, that voluntary organisations such as Brainwave play a much more significant role in service provision than in the case in many EU countries).
In the past 10 years it has seen significant growth and now has offices in almost all of Ireland�s 8 Health Board areas. It has also developed a number of vocational pre-employment training courses with funding from the European Social Fund. Brainwave is in regular contact with about 7,000 individuals in Ireland, of whom many are or were paid up members of the association. Initial services are provided to any person with epilepsy regardless of membership of the association.
Brainwave receives about £80,000 per annum through the European Social Fund. In 1998 it also received funding from 7 of the 8 health boards in Ireland - to the amount of approxiamtelu £67,000. Its Community Employment (CE) scheme was worth about £70,000 per annum although this has been hugely reduced this year. Brainwave relies on fundraising and charitable donations for approximately £230,000 per annum.
Brainwave spends about £220,000 on directly employed staff. Its social work services cost almost £50,000. Its volunteer programme costs about £15,000 per annum. Its research and development activities cost almost £50,000 per annum. Fundraising development and administration costs were £86,000 in 1998.
Brainwave has a total of 20 directly employed staff. 3 of these are administrative and 3 are fundraisers. A number of staff work part-time. In all, 14 staff members have relevant or necessary qualifications. Brainwave has about 60 volunteers, who fundraise for the association throughout the country. It also has a committee of about 25 volunteers who organise the Horse show Ball, a fund raising activity.
Aims and Objectives
The Association was founded to assist PWEs who had difficulty in understanding their condition, the services available and, especially, in gaining access to jobs. A great deal of Brainwave�s work is aimed at supporting PWEs in their daily lives and in coping with their condition. It has specific employment objectives in that it provides vocational services.
Brainwave is actively involved in informing employers about epilepsy. The association considers that many employers have outdated attitudes about the capabilities and appropriate work levels for people with epilepsy. Brainwave operates 2 pre-employment courses for people with epilepsy. One is at Griffith College in Dublin and has 14 places. The other is in the Institute for Technology, Sligo, (on the west coast) which also has 14 places. Both courses include a work experience component. Brainwave conducts an extensive and intensive selection procedure which includes preliminary interviews, open days, use of a sampler course all of which lead to final selection for the courses. Brainwave also assists in job placement after the course is completed.
Their specific aims are:
- To support PWEs in their daily lives
- To prepare PWEs for entering the labour market
- To support PWEs in the process of entering the workplace
Stakeholders and Target Groups
Stakeholders are those with a particular interest in Epilepsy as a disability. Brainwave is a company limited by guarantee. The board comprises of 11 members with epilepsy, or the parents of children with epilepsy and 5 medical specialists. Board membership rotates annually. The board meets 13 times per year. There are no upper or lower age limits on membership. Other stakeholders include the Health Boards (involved in funding), the CE scheme and FAS (the Irish national training agency). The national rehabilitation agency is in the course of re-organisation at the moment but will presumably be involved.
The target groups for this initiative are:
- Young PWEs who require training for employment;
- Teachers, employers and health professionals who require training in the area of preventing seizures and appropriate first aid in the event of seizures;
- Brainwave currently has a major project with instructors from the national workplace skills training organisation (known as FAS). This will train the instructors in relevant occupational safety and health issues for PWE.
Activities of the Initiative
Brainwave undertakes a number of activities on behalf of PWEs which are relevant in the current context. These include:
- Public awareness campaigns
- Community Employment scheme
- Pre-employment training for PWEs
- Job placement services for PWEs
Public awareness
Brainwave has run a number of public awareness campaigns to inform the public about epilepsy. These have included poster campaigns. During the annual �Rose� week (a fund raising and awareness week), the association uses the surrounding publicity to provide information about the condition to the general public and to employers. Brainwave has also produced information for employers on epilepsy in the workplace. Brainwave national office disseminates information by post, telephone and e-mail. This information covers a wide range of issues including common sense advice on how to assist a person who is having a seizure. Each of the 7 community resource officers in the health board regions provides information on request.
Community Employment scheme
The Community Employment (CE) scheme is a nation-wide programme which aims to the assist long-term unemployed into the labour market. Originating in the mid-1980s, was intended that participants in the scheme would receive work experience largely in the voluntary and community sectors for limited periods of time so that they would be facilitated in moving on to the open labour market. (The scheme was generally confined to these sectors in order to prevent competition on the basis of low wages with the openly traded sectors).
Many voluntary organisations participated in this scheme, and those concerned with health issues often employed people with disabilities in which their organisation had an interest. Brainwave is one such organisation - they have consistently employed PWEs on this scheme, with a view ultimately to helping them to gain access to the open labour market.
Brainwave's involvement with the CE scheme has fluctuated, with times when 12 CE workers were working with the association and other times when the CE complement was only 2. Brainwave has found the structure and operation of the CE scheme to have certain rigidities in relation to people with disabilities, particularly with regard to training and the length of time a person may remain on the scheme. Despite the difficulties Brainwave has had with the CE scheme, it has provided the association with valuable options to carry out important tasks that would otherwise not be done, and to enable people to enter the open labour market.
Pre-employment training
What are they trained in?
How many per year
Why separate training?
Job placement services
Who does this - the Community resource Officers?
What exactly do they do?
Is there any relationship with OHS services?
Results Obtained
Brainwave undertook the required Horizon project evaluations in 1997 and had an internal organisational evaluation in 1998. The results of these are not published. It appears that placement rates on their training schemes have been good.
Brainwave has obviously had a great deal of success with its vocational initiatives. It seems that funding is available through CE and FAS. Problems encountered are mainly in the area of ignorance on the part of employers. In discussion it seemed that this ignorance can also extend to medical advice given by doctors to employers.
Placement rates on the Community Employment scheme, that is, the success rate with which participants move on to employment in organisations operating on the open labour market is high - with about 85 percent moving on to open employment. This rate is relatively high in relation to CE schemes in other organisations, and it is perhaps also a reflection of the high economic growth rates in Ireland in the past 5 years or so.
How many are placed ?
What are the problems ?
Role (Actual or Potential) of OHS Services in the Case
OHS services play no formal role in this initiative, either with regard to the services supplied by Brainwave, or within organisations in which PWEs are placed. This may be in part due to the fact that OHS services play no obligatory role in Irish workplaces and also because the services provided by Brainwave (and other similar organisations), in effect adopt the role which OHS might play. For example, information about the impairments of epilepsy, the impacts these impairments might have on working life and the work environment are made available to prospective employers by Brainwave.
In the future, if Occupational Health and Safety Services are to play a more active role, they would need to be properly trained in the needs and risk factors attached to PWEs. Some jobs may need modification but this is rare. Knowledge of Epilepsy and its relationship to work is particularly important for occupational physicians.
Generalisability of the Initiative
Organisations similar to Brainwave already exist in most European countries. The initiative is therefore generalisable in principle, but the details of the activities undertaken and especially their funding would probably vary between countries. In countries where the infrastructure for OHS services is stronger, many of the functions which Brainwave have undertaken could probably be done by OHS services.
Assessment of the Initiative
This initiative arose within a voluntary sector Disability Agency which provides a full range of services related to the integration of their client group into the open labour market. There are a number of features of this case which are of interest in the current context:
- Use of existing labour market schemes - the use of existing labour market schemes, such as the Community Employment scheme, together with using vocational training resources provides a useful model for organisations operating in the voluntary sector. Brainwave, while they have set up some services themselves, have creatively used these sources of funding and expertise to further the interests of their client group.
- The role of OHS services - the role of OHS services is not obvious in this case, for the reasons outlined above. However, the activities of Brainwave in relation to the provision of medical and rehabilitation information to employers, points to areas in which OHS services could play a useful role.
- The relationship to employability - There is a clear relationship between the activities of Brainwave and increasing the employability of their clients. In fact, all of their workplace related activities are targeted at this end, thereby facilitating the employment of PWEs though training, work experience and job placement.