Foundations Monthly Webinar, 21 June 2022
I never set out to study human need. The subject emerged from a project intended to demonstrate the effectiveness of adaptations. In this research, (published 2001) two-person teams (occupational therapist and EHO/ housing grants officer) from seven areas in England and Wales set out to discover how adaptations supplied to disabled and older people had worked out in practice. There were many happy customers. Stairlifts, showers, warmth, and ramps had transformed lives away from pain, humiliation and dependence.
But what of the cases where £20,000 of public money had been spent on something that had either not been used or was actually harmful, like an extension without heating where the cold came near to killing a frail disabled child? It was analysis of these cases that produced the checklist below, which itself builds on a list produced by valued colleague John Winfield to counter the medical model of needs he had endured all his life as a seriously disabled person.
- Retaining (or restoring) dignity.
Independence is one part of dignity. A common example of this would be enabling someone to use the toilet without needing help! The other key part is the way that a person’s home reflects their image of themselves. People will resist and resent functional adaptations that hurt their self-image. Good OTs know that they may have to wait for a person to be ready for an adaptation that labels them ‘disabled’. Understanding why the person is refusing may make discussion and compromise possible.
- Having values recognised. These include standards, (can the adaptation be kept clean?), principles, priorities, religious faith, cultural norms. This again relates to understanding a person’s sense of self.
- Minimising barriers to independence. “I have my independence back” was a common accolade after adaptations. People in unadapted property often called themselves ‘prisoner’. They could not move from room to room, wash or go to the toilet without help. This was also hugely important to children: growing independence being a key part of growing up. Adaptations which almost gave independence but not quite were particularly painful.
- Relief from Pain, Discomfort and Danger. These consequences of adaptation were of immense importance. Cold, damp and lack of space to manoeuvre all caused injuries and discomfort to the disabled person and/or to others in the household. Proper heating was often the main factor in reducing pain.
- Ensuring some element of choice. When the people receiving adaptations had no say in what was supplied, there was a good chance that the adaptation would be unsatisfactory or resented. Giving choice is an opportunity for empowerment of the disabled person and their family.
- Being able to take part in family and society. A constant anxiety for families with a disabled child for whom a minimum sized extension is supplied is that that child is isolated at night. TAnd disabled people don’t want to be isolated. They need adaptations to facilitate social contact and meaningful activities. Ensuring that windows are low enough for a wheelchair-user to see out into the street is, the research told us, incredibly important.
- Need for light. ‘I hate this black hole’ was what one parent said of an extension which had made the kitchen like a long dark tunnel. Lack of natural daylight is harmful to people’s mental health, so adaptations must respect this need if they are not to be harmful.
- Particular to children: Need for space for growth and change. ‘Remember that children grow’ was the simple advice of a 14-year-old in this project. He had grown greatly since his extension bedroom had been supplied. Of course, professionals know they must not frighten families with prospects of future deterioration. But they can ensure enough space to cater for future change. And there are the needs of children as children, too. Separate paper needed!
- Needs of other family members. If individuals live in a family, the family is what helps to sustain them and it is not a good idea to ‘help’ the individual at the cost of weakening the family by making life more difficult for them. Sorting out this balance is something that comes from communication between professionals and the family.
- Good communication. Adaptation recipients frequently said they hadn’t understood what they would be getting. In this digital age there is no excuse for not giving some 3D image or photograph of similar work and teasing out possible misconceptions to prevent disappointment and wasted money.