Access all areas – except at home

Behind closed doors some of our most vulnerable children are being
denied their basic human rights. While millions are being spent on
providing disabled access to public buildings, thousands of
disabled children are unable to safely access their own
homes.

The national service framework for children aims to ensure that
disabled children “enjoy the highest quality of life possible” and
that “their needs and those of their families are promptly and
sensitively addressed”.

A key element of this is surely the provision of a suitable home
where children can join in family life and have their personal care
needs safely met. But disabled children do not have a right to
money to make their homes accessible and there is only limited help
available through the disabled facilities grant. Through this,
parents are means-tested for their child’s adaptations, but it
excludes outgoings such as mortgage payments.

Parents on average incomes are assessed as able to pay for all
adaptations. But a bedroom and bathroom ground floor extension
would cost £30,000-£40,000.

Take Jack. At six he was diagnosed with duchenne muscular
dystrophy, a progressive muscle weakening condition. His family
moved to a bungalow. By the time he was nine they had plans for the
wheelchair-accessible accommodation he would soon need. The family
were assessed as able to pay for all the adaptations to their
council property, but they could not. Now Jack is almost 10. He
uses a wheelchair at school but cannot get it into his home.

Jack’s situation does not show up on any list of unmet need or
adversely affect any performance indicators. It is just unfortunate
that the family can’t – or, as it is implied, given that they have
been through the means test – won’t pay.

The housing needs of disabled children require proper consideration
at the highest levels of health, housing and social care, and a
commitment to adequate funding by government. The disabled
facilities grant system is under review but the needs of children
require consideration in the context of child development and the
impact on all family members. In Northern Ireland the means test
for disabled children has been abolished. Why can’t the government
extend this to England and Wales pending the outcome of the current
review?

Alison Dixon is an occupational therapist.