Access – Being included
Forming and supporting circles of support for people with intellectual disabilities – a comparative case analysis.
Why do this research?
Social connections are good for wellbeing. This research looks at Circles of Support. Circles of Support are people around a person with intellectual disability. Circle members are family, friends, and sometimes staff. These people look at the best way to help someone live a good life. These people help a person to make friends and have a social life. And they help with emotional and physical choices in life. Many people with intellectual disabilities do not have a Circle of Support. Organisations help to set up Circles of Support for a person. No-one knows how hard it is to make a Circle of Support or what makes a Circle of Support work well. It may be different for different people. The researchers wanted to know how to make a Circle of Support and what makes a Circle of support work well.
What did they do?
The researchers chose 3 different organisations that help to set up Circles of Support. The organisations were from 3 different Australian states. Each organisation set up Circles in a
different way. They also supported Circles in a different way. This means each organisation had a different type of Circle of Support program. The researchers looked at each type of
program. This is comparative case study design. The researchers looked at how each program worked to begin Circles of Support. They also looked at who and what helped
circles to happen. They also looked at what happened in circle meetings. They also looked at how the circles helped the person with intellectual disabilities. The researchers found everything written about each program. They interviewed 16 paid staff who worked in the programs. They also interviewed 11 people who were members of a Circle of Support. These were family members, people with intellectual disabilities, a friend and a community member. The interviews were recorded and then written down word-for-word. They used Framework analysis to understand what the written papers, notes and interviews from each program meant. The Framework meant they could look at everything together. They then looked at each program to see what was different and what was the same.
What did they find?
- They found that each program wanted to do the same things. They all wanted to help make Circles of Support. They all wanted to find and keep social support for the person with an
intellectual disability. All the programs met their goals. But they were different.
2 programs worked with people who had families. The paid staff supported the family to make a Circle of Support. This did not take a long time. Circle members supported
family and the person. - 1 program worked with people who did not have family. They worked with isolated people. The paid staff led the work that made a Circle of Support. This took a long time.
- Each program was a different size and had different funding.
- Paid workers who helped the circles to happen worked hard but all had different skills.
Staff need skills that make Circles of Support happen. These include knowing about person centred planning and working with groups. Staff need time to make Circles of Support happen. Programs need funding to make Circles of Support happen. Programs that work with isolated people take longer to make Circles of Support happen. They need more time and
funding. This could happen through the National Disability Insurance Scheme(NDIS) in Australia.
Circle of Support members became more aware of barriers for people with intellectual disabilities. More work needs to be done on how to fund and different types of Circles of Support programs. It is important to remember they are different for different people. There needs to be clear ways to write down what makes better social supports for people with intellectual disabilities.
Tal Araten-Bergman & Christine Bigby (2022) Forming and supporting circles of support for people with intellectual disabilities – a comparative case analysis, Journal of Intellectual & Developmental Disability, 47:2, 177-189, DOI:10.3109/13668250.2021.1961049
“We feel left out”: Experiences of social inclusion from the perspective of young adults with intellectual disability.
Why do this research?
Many people find it difficult to feel socially included. Social inclusion means feeling respected by others, included in activities, and having friends. There are lots of studies about the social
inclusion of people with intellectual disabilities. Research tells us that people with intellectual disability find social inclusion hard. The studies are often written by service providers or family members. The authors wanted to talk with people with an intellectual disability. They wanted to know how people with an intellectual disability experience having friends and being part of the community.
What did they do?
They interviewed 10 young people (aged between 18-24 years) with an intellectual disability. They asked them about their lives and their experiences of social inclusion. The young people
lived in their own homes, with family or friends, in norther suburbs of Perth, Western Australia. The interviews lasted about an hour in a one-to-one situation. The interviewers were recorded and then written down word-for-word. The authors read all the interviews carefully and developed themes. They took a phenomenological approach to understanding what was written down. Phenomenology is a way of understanding a person’s lived experience of the world.
What did they find?
They found two main themes.
- Segregated, excluded and “treated like an outcast” in my community
- Challenges in experiencing, initiating and maintaining peer friendships
- Segregated, excluded and “treated like an outcast” in my community. They felt left
out of things and treated as being different. They wanted to work but found it very hard
to find a job. Sometimes they struggled to keep up when working. Seven of the young
people went to programs for people with a disability. They liked the programs, felt
happy, had friends and were not bored.
- Challenges in experiencing, initiating and maintaining peer friendships. They had
difficulty finding friends of their own age. Family members were always with them.
They spent more time with family and paid staff than friends. The young people talked
about playing with their friends at home and having toys. One person liked primary
school children as they were easier to talk with. They rarely used electronic
communication like facebook. Only one person had their own phone.
This study showed young people had a limited social life. There were many reasons;
- lack of work opportunities
- spending most of their time in the care of family and paid staff,
- having few friends of the same age,
- limited literacy and no way of using electronic communication.
Disability policy says people with a disability should have choice and control in their lives. Young people with an intellectual disability need targeted support to be socially included.
Merrells, J., Buchanan, A., & Waters, R. (2019). “We feel left out”: Experiences of social inclusion from the perspective of young adults with intellectual disability. Journal of Intellectual & Developmental Disability, 44(1), 13-22. doi:10.3109/13668250.2017.1310822
The role of professionals in strengthening social relations of adults with a disability in independent supported living: Practices and influencing factors.
Why do this research?
The research looked at people with a disability. These people lived in their own houses in Flanders, Belgium. Staff came in every week and helped them to live independently. This sort of
living is called independent supported living. Staff tried to help them be socially included. Social inclusion means feeling respected by others, included in activities, and having friends. Staff, friends and family make up a social network that can help you feel included. The study wanted to find out two things
- What do staff do to help people with disabilities have friends and feel socially included?
- What are the things that staff need to do to help people with disabilities feel socially included?
What did they do?
They interviewed 51 people. There were 14 people with disabilities (8 with intellectual disabilities). They were asked about their social networks. Researchers wanted to know about how happy the people with disabilities were and what they wanted for the future. Researchers also asked about what their staff did. The researchers interviewed 14 staff and 23 social network members. They asked the staff and social network members to talk about the same
things but from their points of view. The researchers also wrote down what they saw and heard during the interview, in what are called field notes. The interviews were recorded and then written down word-for-word. The authors read all the interviews carefully again and again and checked with the field notes. They used inductive thematic analysis. This means they looked at all the words and put them together in themes. They put names to the themes. They talked with staff that they interviewed to make sure they got things right. They talked about what they found until everyone agreed.
What did they find?
They found nine things that staff people did to help people feel socially included. These are called practices.
- Connecting with the current social network members. Staff made sure they were in
contact with at least one social network member. This was to help the person with a
disability when things were difficult and build stronger relationships. Staff also helped other
staff to get to know the person with a disability well. - Facilitating social situations. Staff would try different ways to help the person with a disability interact with others. Sometimes staff would go with them to a new place or meeting to help them feel safe.
- Seeing and exploiting opportunities. Staff looked for everyday things that happen. Sometimes knowing these things helped people to feel closer.
- Working with an empowered attitude. Staff always worked together with the person with a disability. They were careful to make sure the person with a disability made their own decision in the end.
- Getting to know the person with a disability very well. Staff worked at understanding what the person did, why they did things and what it meant. This was shared with others in the social network and helped people feel close.
- Being a sounding board. Staff listened to what the person with a disability said. Staff were sometimes the only person regularly there in the life of a person with disability.
- Being a “safety net”. Staff were around a lot. The networks members relied on staff to know what was happening. They wanted to keep their friend or family member safe.
They were other things that made a difference to their practices. Some of these things helped – but some did not help.
For the person with a disability these were
- Previous lived experience. The person with a disability may have had bad or good experiences in the past. These things made the person act or think in a certain way.
- Capability of arranging social relations. Some people could make times to see people and be independent. Not everyone could do this.
- Active requests for support. Not everyone knew how to ask for support or when to ask.
- Characteristics of the person with a disability. The personality and communication skills of the person with a disability affected relationships.
- The resources These might be having money to do things or having transport nearby.
For the staff person these were
- Bond of trust Trust between the staff, network members and person with a disability helped.
- Vision Staff needed to believe in the importance of a social network.
- Expertise Staff who knew how to do things and had a social network were valued.
- Characteristics Positives included honesty, ability to listen, openness and good communication skills.
For the network members these were
- Engagement This varied as not everyone wanted to be involved in the same way.
- Relationship with person with a disability The closeness of the network member to the person with a disability made a difference.
- Relationship with staff The network members who knew the staff well felt more comfortable.
- Needs The level of need of the person with a disability affected how network members felt.
- There were also things around the person with a disability that made a difference. These were
- Support time Being able to pay for all the support needed helped the person with a disability.
- Policy Changes in policy sometimes meant staff had less time than they need to do their job.
- Evolution over time Social networks change over time and always needed some attention.
There are some things that help people develop and maintain social networks. There are some things that stop people from developing social networks. Policies that control how much support
is given or how much money there is, make a difference. Staff have a difficult job. It is important for them to listen to all the people involved in the social network. It is important that they know the person with a disability well.
Meys, E., Hermans, K., & Maes, B. (2021). The role of professionals in strengthening social relations of adults with a disability in independent supported living: Practices and influencing factors. Journal of Intellectual & Developmental Disability, 46(2), 150-163. doi:10.3109/13668250.2020.1786963