In July 2005 the National Federation of Voluntary Bodies set up a group called Community Participation and Inclusion to look at how each person with an intellectual disability could live a full active life in their own community. This group is made up of people who avail of services and staff who provide services. The group is now chaired by Richard Collins, who took over as chair from Yvonne Bohane in 2008. Claire Maher co-chaired a meeting with Richard at the end of 2008.
The first thing the group decided to do was look at the barriers and solutions to people who avail of intellectual disability services being involved in their own community. They organised a workshop in Athlone where people who avail of services could give the group their views and opinions. People who attended the workshop had different types of life experiences—some lived with their family, some lived in a residential place, some shared a home with a friend.
The group learned that some of the problems and barriers people with an intellectual disability experience are the same for people without a disability, such as work commitments or being shy. And some of the problems and barriers experienced by people with an intellectual disability are different from people without a disability, for example, rules made by family, staff or managers about what people can do, where and when they can go, and with whom; and in rural areas particularly, the lack of accessible transport.
The people who attended the workshop identified the following issues as being of importance to them:
- ‘We need you to promote our right to independence and the right to make our own decisions.
- We need you to understand the importance of us having friends, and to support us to meet up with our friends to do things we like to do.
- We need you to support us to live and work in places of our own choice and with people who have similar interests.
- We need you to support us to take risks like everyone else.
- We need you to help change the attitudes and perceptions of staff and others towards people with a disability.
- We need you to provide education and support in regard to bullying.
- We need you to campaign with us for an increase in the Disability Allowance so we can afford to do the things we would like to do.
- We need you to promote the availability of accessible information for us.’
After the workshop, Brian Donohoe, a member of the sub.committee, put down on paper everything that was said at the workshop. Drafts of the document were sent out to everyone who attended and when everyone was happy with the content it was published the following June at a celebration lunch in Athlone. The document is called ‘People Connecting’.
Everyone who was at the workshop was invited to the lunch. The findings and recommendations were presented to the Board of the National Federation in April 2007 with supporting recommendations from the group.
Work of the Community Participation and Inclusion Group
During 2008, the group adopted a set of principles for their meetings:
- Only one person speaks at a time.
- The group listens to the person who is speaking.
- People cannot talk for too long.
- Mobile phones must be turned off.
- People in the group should respect each other.
And all documents for each meeting are produced in easy-to-read format so that they are accessible to all members of the group.
The members of the group also discuss a wide range of issues and Brian Donohoe prepares easy-to-read papers on workshops/seminars attended and publications of interest to the group. Members of the group are also writing articles for publication and an article written by Mary Gavin called ‘The Things I’d Like to Change’ is published below.
‘The things I’d like to change’
I’d like an apartment of my own, near my family. I’d like to invite friends over for little parties with goodies and music. I would do the house up nicely and keep it clean. This would give me independence. I would get out more. My parents would like me to have a house parent but I don’t think I would need one.
I’d like to get out more with my friends. I’d like to go to the pictures, shopping, bowling, swimming all outside in the community. I would like a volunteer to go out with me so I could depend on someone outside of my family. I’d like to meet up with friends and do things together. This would give me and other people more independence.
My job gives me independence. I get four buses in a day. I am in work at 11.00 and I finish at 3.00- I work in a restaurant. The jobs I do in work are cleaning tables in the morning, filling the salt and pepper containers, stacking the trays and plates, bringing in the trolleys and other things like that. I enjoy work. My job is to change over and I am looking forward to this change.
People like me, with a disability, should get out more—especially people living in centres. Getting out would give them freedom. If you don’t get out you will be looking at four walls every day and going berserk.
Mary Gavin lives in Templeogue, Dublin with her mum, dad and dog named Lady. Mary works part-time and attends the jobs club and a computer course with Cheeverstown House. She helps with volunteers. Mary was recently picked for the regional games for swimming about which she is very happy.
Presentations have also been made to:
- The National Federation Innovation Conference in October 2007 on the work of the group and the findings and recommendations from People Connecting;
- The National Federation Research Sub-Committee in March 2008 when they were developing the Research Strategy 2008-2013, on areas of possible research, based on the ‘People Connecting’ consultation document. This presentation formed part of the Research Sub.Committee’s consultation process with people who avail of services to determine what research is important to them.
The group also delivered training on working with Consultation Groups to the Inclusive Research Network workshops during 2008. The Inclusive Research Network is a group of people who come together to do or talk about research that is about people with intellectual disabilities.
The Community Participation and Inclusion Sub-Committee is continuing its work during 2009 and will look at building links and partnerships with other people and groups in communities around the country.
What can the National Federation of Voluntary Bodies do to foster change for people who avail of disability services?
- Examine national and international evidence-based best practice that will enable people who avail of services to live full active lives, of their own choice, in their own communities
- Examine ways of fostering and maintaining good community connections and social networks so that people can develop real, meaningful, long-lasting and freely-chosen relationships
- Develop short and long-term strategies to support people to live, work and spend time in ordinary community settings
- Develop strategies to support people’s right to independence and the right to make their own decisions, including managing their own money
- Develop strategies to raise awareness and challenge assumptions of disability in communities, within services and in the media
- Look at how ‘day services’ are traditionally provided and examine ways of providing more holistic person centred services, e.g. outside of the nine-to-five model.
- Examine best practice in managing change to facilitate the smooth transition of change within organisations.