People with learning disabilities have many different needs for services. In recent years a wider range of services have become available to them and their families. But unlike bad tidings, good news doesn’t travel all that fast or that far. This prompted the Eastern Health and Social Services Board in Northern Ireland to launch a ‘What’s New?’ initiative. This took the form of a series of special meetings to tell family carers and service users, as well as staff working in frontline services, about the many new developments taking place in and around Belfast. These are described in a recently published booklet which is available free-of-charge from the Board (at the address given below).
A steering group was formed, made up of representatives from the Board and four community trusts which are responsible for providing services in Belfast and County Down. The group planned the content of the series, identified speakers, organised venues and catering, and publicised the meetings among service-users and staff. This team effort meant that the workload was shared and the series had common ownership.
Four themes were chosen for the first series of meetings:
- Advocacy: ways of helping people with learning disabilities to speak up for themselves;
- Supported living: new opportunities for people to get a house of their own and to have the support staff they need;
- Supported employment: schemes that assist people to obtain training, work experience and paid employment;
- Challenging behaviour: how staff and families can be assisted to cope with difficult behaviours.
For each theme, a number of innovative projects were chosen, one from each of the four geographical areas covered by the trusts. For example, four different supported-living schemes were described. One involved people moving from a large residential home into their own homes, either on their own or with friends, and a second was a small complex of five bungalows which are now home to five persons with complex needs. Hence, over the four themes, sixteen ‘new’ projects were featured. Some were provided by voluntary organisations, and others by the Health and Social Service Trusts. However, all the projects chosen were illustrative, as there were many other examples of projects which could have been included.
A series of four meetings were planned, aimed mainly at frontline service staff working in day centres and residences, and at service users. We had hoped that family carers might also attend but, although a few did, the timing of the meetings was not as suitable for them.
The meetings were held bimonthly on Fridays, from 10-00am to 3.00pm, in four different locations—Newtownards, Knockbracken, Downpatrick and Belfast—usually in the Trust’s training facility. Around 40 people attended each meeting.
The speakers at the meetings were staff members directly involved in the new style of service, along with one or more service users and their family carers. They described their service, how it had been set up, how it worked, the difficulties encountered, and what people liked most about the service. Some presenters showed photographs or a video.
After lunch, participants divided into groups to talk about what they had heard and to discuss how similar services might be developed elsewhere. Their views were recorded and a report of the meeting was produced and distributed to services throughout the Board’s area so that people who could not be present could learn about the new services. The reports are now available in the booklet.
The meetings proved to be very successful. Particularly pleasing has been the active participation of service users in the presentations, asking questions and in group discussions. The meetings have nurtured their advocacy and given them the opportunity to express their views. Likewise, service staff members have taken away ideas as to how their services might develop in the future.
This autumn, the steering group decided to repeat the series for family carers, in the form of four evening meetings in a central location. Upwards of 40 parents and relatives have attended. Many have spoken of their difficulty in getting information about services and how they might be obtained. The meetings seem to fulfil this need, as well as giving families a chance to get together.
A second series of meetings was also held in the autumn for service users and staff. This year’s themes were leisure and recreation, educational opportunities, sexuality and relationships, and health promotion. We are using the same format for these meetings and they have been even easier to organise, as the venues and publicity systems are now in place.
John Richards, the Eastern Health and Social Services Board’s Director of Social Services, commented on the ‘What’s New’ initiative: ‘As yet, the Board cannot provide all the services which people need and want. Nor can I promise any quick solution to this. However, an important beginning is to have a clear idea of the new services that are needed and the assurance that they do benefit the users. We look forward to the day when these services and others like them are widely available to all who need them.’
Comments from participants in the meetings were:
‘The beauty of these meetings is that parents feel included; there’s nothing worse than feeling excluded. Everyone should be included as it is important for future planning. Young people with disabilities should also know what the future may hold for them; they like to be included too.’ (father)
‘The variety of speakers has been great, especially those with learning disabilities. It shows what everyone is capable of doing.’ (volunteer worker)
‘The meetings were great; meeting new friends and telling them what we did and they tell us what they do.’ (service user)
‘Our folk thoroughly enjoyed participating. It gave them a chance to be heard and to have their opinions valued.’ (staff member)
‘I lived in a [mental handicap] hospital for 26 years. Since I moved out to my own house, I have now got a job and last month I got married. People think we can’t do things like this, but we can if we get the chance.’ (former service user)
‘It’s a pity more people don’t come to these sort of meetings. They would learn so much.’ (mother)
‘What’s New’ is a simple idea that could be easily repeated elsewhere. The bigger question is, why hasn’t it been done before?