Scope has warned of the need to support “unempowered” families with disabled children before they drop off the radar of services.
The charity, in a report to mark the first National Family Week (25-31 May), said families with disabled children were “fated to remain at a disadvantage” if they were denied support.
Scope found families with disabled children were more than twice as likely as families with non-disabled children to have “little or no quality time together”.
Scope questioned 500 families with disabled children, while 1,000 families with non-disabled children were surveyed by Tickbox.
Nearly 60% of families with disabled children expected their quality of life to be the same or worse in the future. Some 42% found it difficult to access leisure activities, compared with only 20% of those with non-disabled children.
Scope said most families with disabled children, when faced with barriers to choice and control, became unempowered.
When the situation worsened and these families became disempowered, they were “trapped in a vicious cycle”.
“The more they perceive themselves to lose choice and control, the less support they receive and the more of a reality it becomes.”
Focused on the family
Scope said families could only be “truly” supported if services were focused on the family as a whole, not on individual members.
“This means we need to rethink the emphasis placed on parental satisfaction as the primary measure of successful service provision,” the report says.
There are about 770,000 disabled children under 16 in the UK, but, using demographic trends, Scope said this could increase to 1.25 million by 2029.