The Hidden Costs of Support

Experiences of family carers who support someone with learning disabilities

The National Development Team for Inclusion (NDTi) has been working on a crowdfunded research project, exploring the differences between living in Residential Care and Supported Living settings for people with learning disabilities.

The main difference in theory between these two housing models is whether the person’s support is provided in-house by the same organisation as the housing provider (Residential Care) or whether housing and support are provided separately (Supported Living). However, little is known about how these different models compare in practice and whether or not people’s experiences of support differ according to housing model.

NDTi conducted a consultation exercise with self-advocates and family carers to explore their perspective on different housing options for people with learning disabilities1. Family carers told us that the type of housing model was less important than the quality of housing and support that their relative received. They felt that the contribution of family carers is often overlooked and were concerned that people who lack support from their family may be disadvantaged.

Previous research has sought to quantify the quality and costs of different types of housing for people with learning disabilities2. However, the contribution of family members is rarely considered, with economic analyses focusing on the cost to providers and services. This is a significant omission because family carers report spending considerable time and money supporting their relative.

If a housing model depends on input from family carers to work well, then this may not be a suitable option for people without family or whose family members aren’t able to provide this support. Furthermore, the true cost of a housing and support package may be under-estimated due to hidden costs to family members, in terms of time and money.

This survey aimed to explore the role and input of family carers who support their relative, the associated time and costs and how these vary according to the type of housing that their relative lives in.

Read the report here