Having a family member with an intellectual disability can have an effect on the entire family; the parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning.
On the positive side it can broaden horizons, increase family members’ awareness of their inner strength, enhance family cohesion, and encourage connections to community. On the other hand, the time and financial costs, physical and emotional demands, and logistical complexities associated with caring for a disabled child/adult can have far-reaching effects. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available.
For families, caring for a disabled family member may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between family members, their living arrangements, and future relationships and family structure.
Families are telling us that one of the supports that they may need to enable them to continue to care for their family member at home are short breaks. Short Breaks give them a break from their role as carer and also provide their family member an opportunity to be with others and benefit from new experiences.
In research carried out by UCC Science Shops 2011 parents spoke about the pressure on them as carers;
“I just felt that there was a lot of pressure on us.”
“It is hard going like it is hard caring and you need a break for your own sanity.”
“If we didn’t have respite first and foremost I don’t think our marriage would have lasted.”
“I think if we hadn’t had respite… certainly at this stage of life I would have thought of …. having [ family member] put in somewhere Monday to Friday.”
Families who avail of Home Sharing / Short Breaks have reported that close and trusting relationships have developed between them as carers, their family members and their host families.
“Our [host carer’s] been with us so long, like [our daughter] would be very close to her host family like her parents, her aunts, uncles, nieces and nephews, she knows them all!”
“It makes him more independent and used to other people.”
Parents felt that the Host Family provides a positive move towards community integration.
“The community learn an awful lot about disabilities and the more we separate people with disabilities from society the less people have contact with it and they don’t know how to handle it or behave around it, but also they miss out on the beauty of the contact.”