Circles of support

In our last step, we have seen the changes that have taken place in how society treats people with intellectual disabilities. Health service staff, however, must gain an understanding about how the life experience of many people with intellectual disability can be quite different than that of their non-disabled peers.

One major issue involves who a person with intellectual disability calls upon for help. For many of us, our first option is to call upon our family and friends, then our neighbours and community. After that, we may call upon local organisations and then on professionals and paid staff for help. These are the layers or circles which support us in our lives: they are our Circles of Support.

The graphic below demonstrates the ‘circles of support’ that most non-disabled adults can call upon when needed.

^{Adapted from Third Age Ireland}

For people with intellectual disabilities, their circle of support may be quite different. In Ireland, people with an intellectual disabilities are much less likely to be married or have a partner than their non-disabled peers. They are also much less likely to have children.

While many people may be living at home and can rely on parents, brothers or sisters for support, others may be living in group homes or residential centres.

Historically in Ireland, and throughout the world, people with intellectual disabilities were cared for in residential or institutional settings. Families were advised by medical or religious advisors to place their child in the care of state services. Often these services were located in another part of the country and people were separated from their families. As a result, many of the older generation do not have strong links to their families or community. This contributed greatly to their circle of support being different to their non-disabled peers. Consequently, the person that they turn to first for help, can be a paid staff member.

^{Adapted from Third Age Ireland}

As you can see in the contrasting graphic, for some people with an intellectual disability, a family member may be much further away in their circle of support. They might not be called upon as frequently to provide practical day-to-day support.

You will remember from our previous step that, historically, people with an intellectual disability were very often institutionalised as the best approach to care. In many countries, this segregation still continues into modern times and has shaped the life experience of many older people with intellectual disability.

Support for medical appointments

One example of how a circle of support affects people with an intellectual disability is when they are going to a medical appointment.

Someone with an intellectual disability will often be accompanied by a second person when they go to a medical appointment. Reasons for this include:

• There will probably be ‘new’ information that they may need help understanding.
• They may need physical assistance.
• The medical person may not make an effort to communicate with them effectively.
• They will need to remember things so will want help.
• They may be anxious or nervous about the situation.

The person who comes with them to the appointment, however, may not be a family member or friend. For many people with an intellectual disability, the person accompanying them may be a paid staff member of the service they attend. This person may:

• Not know them well.
• Not know their medical history.
• Not be interested in the person’s welfare.
• Not be able to communicate effectively with the person.

The person may even sometimes be a temporary care worker who has never met the person with an intellectual disability before that day, and who may never see the person again after that day.

It is important to keep this in mind at appointments, especially where you might be tempted to address your questions to whomever is with the person with an intellectual disability because you are nervous about being understood.

In your experience:

• Think of one experience you have had where a person has accompanied a person with an intellectual disability to a medical appointment.
• Where in the person’s circle of support did they come from?
• How did this impact on your communication with the person?