Lobby group launches research report at Stormont

The report is the culmination of nine months of research carried out by the Post-19 Lobby Group, led by the PTA at Hill Croft School in New Mossley, and provides a snapshot of life in a family with a severely disabled child or young person.

Guests at the launch event included parents and carers from across Northern Ireland, as well as organisations and individuals interested in disability advocacy.

Julie Jamieson, Chairperson of the Post-19 Lobby Group, said that the report’s findings paint a fairly grim picture of life in families with a severely learning disabled member.

“Some 62% of parents/carers are caring upwards of 70 hours per week for their children and young people. Most (77%) state that the onerous nature of their caring responsibilities has had a considerable impact on their health, and at least 25% note anxiety, depression and stress as a common trend,” she explained.

“More alarming within the context of the current economic downturn is the impact of transition and caring on employment and household income. Some 72% of eligible respondents have had to give up or reduce hours of employment. Household income has decreased for some 82% of respondents. When set against the costs of raising a disabled child, which is considered to be three times more expensive than raising a non-disabled child, these are worrying findings.

“Through the research the overwhelming message from parents/carers is the ongoing need for life-long learning and the development of independent living-skills for young people with severe learning disabilities.

“One of the biggest concerns for parents/carers is what will happen to their young person when they die. This fear compels parents/carers to seek educational opportunities for their young people when they leave school, however profound the disability. In an attempt to better equip them for a time when parents can no longer provide the intensive care required.”

While the research findings are bleak, the lobby group has tried to investigate and provide alternative solutions for life-long learning opportunities, particularly for those young people with profound or complex disabilities.

Mr Dickson claimed that the post-19 transition process from school to adult services is effectively a lottery and a cause of deep distress for families of children with special needs.

“The process of transition to adult services is meant to start at the age of 14, but little is done by the age of 19 and families are left having to pay out of their pocket for things that should be paid for directly.

“The two main problems are finding post-19 activities, which are very few, and getting money to fund a placement if one is available.

“The findings of the research report will focus our attention on the areas that we can work on to improve the lives and experiences of those with severe learning disabilities and their families,” he commented.

Summing up her presentation at Stormont, Julie concluded: “Equality is a key issue which cannot continue to be side-stepped; paying lip service to equality issues fudges the need to take real action.

“If anything this report shows that the time for action is now. The lobby group will continue to raise awareness of the impact of transition and the real challenges facing young people with severe learning disabilities when they leave school.”