Mary* is remarkable. Her meagre rented flat is not. She works several menial jobs, bringing in just enough to keep her family finances afloat. And it’s a constant battle to get decent care for her disabled child.
I was visiting with two students as part of a research project (pdf) investigating the challenges families encounter in obtaining support for home adaptations for disabled young people. Mary’s love and dedication left a lasting impression on us.
Her son Bob* has an autistic spectrum disorder, with associated behaviours. He needs space to pace around and let off steam; space where he can be on his own; space where he doesn’t feel the urge to poke his sister in the face. His needs are “immediate” – if he needs the bathroom and his sister is using it, he will kick the door and drag her out. Without more space, the family would not be able to cope and Bob would end up in local authority care.
Bob requires at least one-to-one care, often more than that. Publicly-funded care of this kind would cost £100,000 or more each year. The maths is straightforward: for the one-off cost of adapting Mary’s flat – £60,000 to create an extra room and bathroom – there is a saving each year of around £100,000. In this case, the adaptation meant Bob has been able to remain at home for the last seven years, which equates to savings in excess of £600,000.
The budgeting issues, however, are far from simple. The adaptation is funded by a housing department grant, but the savings appear in the social services budget (or the NHS budget if the young person is eligible for NHS continuing care funding). At national level, justifying the expenditure is a no-brainer; at local level, it is not. Housing officers are required to stay “in budget” so there is immense pressure on them to ration adaptation funding awards. A government integration initiative – the Better Care Fund – is unlikely to resolve this local funding difficulty.
As the students ran though their questionnaire with Mary in her well-worn living room, my eye caught a poster of the periodic table that was pinned to the wall. I couldn’t resist the urge to interrupt and ask what it was doing there. Mary had no idea what it was, but said her daughter had put it there. It was, she thought, something to do with school. Her daughter’s education and general wellbeing had been seriously impaired by her brother’s lack of space, but since the adaptations she had been able to study at the kitchen table. Now, Mary told us, she was hoping to become a doctor: she wanted to help people like her brother.
The cost-benefit analysis of home adaptations contains no box for the young carers or siblings whose lives are transformed by such interventions. It contains no box for the life-changing experience of my students, who encountered this extraordinary family. It contains no mechanism to account for the benefits of independent living. It ascribes no value to the remarkable organisations that have enabled this family to continue to live together.
* Some names have been changed
Join the Social Care Network for comment, analysis and job opportunities, direct to your inbox. Follow us on Twitter (@GdnSocialCare) and like us on Facebook. If you have an idea for a blog, read our guidelines and email your pitch to us at email@example.com.
If you’re looking for a social care job or need to recruit staff, visit Guardian Jobs.