Mother warns son will have to move to England for care
Woman lodges Holyrood petition in bid to improve facilities for young people with learning disabilities
A MOTHER has lodged a petition in the Scottish Parliament calling for residential care for young adults with severe learning disabilities as she faces sending her 18-year-old son hundreds of miles away to England.
Ann Maxwell, whose son Muir has major developmental problems due to a rare form of epilepsy, said there is nowhere he can live with other people his own age and continue his education north of the Border.
She says Muir, who is still learning to recognise letters, read and write, will have to leave his current school – where he resides four nights a week – to a new centre in Surrey because of his age even though he is beginning to make good progress.
Mrs Maxwell, of Dalkeith, Midlothian, said: “In Muir’s school reports they talk about him beginning to socialise and share. That is lovely and inspiring and it is very rewarding for him as well.
“It is that institutional structure and timetable and support that is enabling him to do that. At a point in time where he is beginning to blossom into that, we are going to have to take him out.”
Scotland once had 19 long-stay hospitals for adults with learning disabilities, but in the 1990s the decision was taken to close these down and help people to live in the community.
But in her submission to Holyrood’s Public Petitions Committee, Mrs Maxwell says “for those with profound learning disabilities, even supported living in community settings is simply not appropriate”.
She said while such vulnerable young people do not need hospital beds, they do need round-the-clock care in a setting which is also stimulating and fulfilling for them.
“We have somehow turned institution into a bad word,” she said. “It is not a bad word because there is some very high quality institutional care to be had.”
In Scotland, she has been unable to find anywhere residential for Muir to attend now he has reached school leaving age, saying living in a care home and attending a day centre is “about as good as it gets”.
However, she and her husband have recently taken Muir to a residential college run by charity Young Epilepsy in Surrey where students can live and learn.
It has a farm, sports facilities and students can ride around on adapted bikes.
In a blog about the visit, Mrs Maxwell wrote: “Thank goodness for this place. Without it I am not sure Muir would be supported enough anywhere else to enable him to make the most of his life.”
For her, however, the “tragedy” is that Muir has to leave Donaldson’s College in Linlithgow where he is progressing well.
She said: “If the Scottish Government would recognise the need and make the commitment to meet the need then we could have one of the most fantastic residential care centres in the country for young people leaving school who need the sort of care Muir does.”
Mrs Maxwell, who is the award-winning founder of epilepsy charity the Muir Maxwell Trust, has also highlighted to the committee that there are no accurate figures showing the number of people with profound multiple learning disabilities in Scotland. The need to address this problem and her call on the Scottish Government to set up a residential centre is supported by other charities.
Ruth Glynne-Owen, director of autism charity Speur-Ghlan, said: “I know quite a lot of children who are at the age where they are transitioning out of services and a lot are having to move to England. There is not the equivalent of what you can get down there, up here, and that really destroys families.”
A spokeswoman for the Scottish Government said the Public Petitions Committee is expected to discuss the petition tomorrow.