Their concerns are voiced in the Give Us A Break report, compiled by the Muscular Dystrophy Campaign, which follows a Freedom of Information request to all health boards. It says young disabled people in Scotland have very poor access to hospices or respite facilities once they reach 18.
Hospice users and their families met MSPs, hospice providers and Government representatives at Holyrood this week to call for the urgent development of new facilities.
Many children born with life-limiting conditions such as Duchenne muscular dystrophy now live well into adulthood. Yet adult and respite care services in Scotland have not adapted to recognise this, according to MDC, which called on the Scottish Government, local authorities and health boards to launch an urgent review of facilities for this "forgotten" age group.