United front for special needs care

LONDONDERRY’S politicians and MLAs united on Friday to show their support for parents of young people with severe learning disabilities.

At a specially convened meeting at Foyleview School parents were able to vent their fears and concerns at the proposed cuts to post-school provision for their children in facilities such as Maydown Adult Centre, which will leave some families with substantially reduced access to training and education support services, while other parents have been told there are no places for their children. The parents and politicians are to meet again in the near future to solidify a plan of action to help those worst effected.

One mother of a 19-year-old girl who has severe mental and physical impairments, told the politicians that the quality of life for parents and their severely disabled children should not be compromised.

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Deeply concerned about what the future holds for herself and her daughter, Jasmine, Michelle Harris, from Newbuildings, told the meeting: “There are 15 children leaving Foyleview this year with no placement. Ultimately it will cost the government much more if these children are placed in full-time care. This would not be in anyone’s best interests. I want to continue to care for my daughter as I have done for the past 19 years, but I need continued help and support otherwise I fear that the emotional and physical health of us both will deteriorate.”

Appealing for their help, she said: “Their quality of life must not be compromised just because the government no longer categorises them as children. We need information, advice, help and most of all your support.”

Speaking at home after the meeting, Ms Harris said her daughter needed 24-hour care as she was incontinent, could not walk or talk and was totally dependent on others for care. She said she was fearful of what the future held nas when her daughter had been at Foyleview since 1996 and enjoyed going to school , but she would finish school later this month.

She had planned for her daughter to go to Maybrook Adult Centre during the week , but had been told that, due to budget cuts, there was no longer a place for Jasmine.

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“Hopefully we will have good news come June 17 when we will be having our next public meeting with the councillors and MLAs.

Jasmine suffers from a unique set of needs because she has Trisomy4Q1P36 deletion syndrome, and her disabilities are accompanied by repetitive behaviour problems which include continuous rocking back and forth and hitting her head.

“You don’t get a break sometimes and I don’t have any help around the home, so having a place for Jasmine at a facility like Maybrook was vital to me,” she said.

Friday’s meeting was described as “very informative and useful” by William Hay who said it seemed the main issue where special needs provision was down to funding.

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“There seems to be a lack of resources for young people with serious learning disabilities. When they come to the age of 18 there really is no funding and families have to try and cope. We have decided to try and get all the parents to come together to try and lobby the Health Minister.

“There are a number of Departments involved in this situation and every Department has a responsibility within this. It cannot be left to the Department for Health alone,” he said, adding that efforts would be made to see how the issue could be raised in the Assembly at various committees and within the Assembly chamber.

“This was a great meeting. It was very informative and useful, and involved Trust representatives, public representatives and parents, and we were able to hear the problems faced by those who have to bear the heavy burden of responsibility for young adults with severe special needs. We have a role of duty as public representatives to try and resolve this and it was great to see representatives of all the parties around the table,” he said.

April Garfield-Kidd said she wanted a holistic approach taken to the young people’s needs, and said she would be pursuing MLAs to make good on their promises.

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“I want to see this being a cross-cutting responsibility across all Departments so that their life skills and social skills are properly address and that their needs are not subsumed within the health department alone. A holisitic approach needs to be taken. I will be pursuing the MLAs what they promised the parents will be followed through.”

“This problem isn’t unique to the north west and Londonderry alone. It is a problem right across the Province. There is a serious lack of resources when it comes to special needs provision for young people leaving school at 18. There is no co-ordinated approach, and everybody seems to be doing their own thing in isolation and it is the Health Department alone who seems to be being left to solve it, but Health cannot do it alone. There are at least four Departments that need to come together with Health to try and resolve this,” she said.

Following the meeting UUP Alderman, Mary Hamilton, called for an investigation into the planning practices within the Western Health Trust which had resulted in the resourcing of the special needs of young adults being consumed into the overall budget for health.

“The Trust must have known, if they have been involved in planning for the future, that this area of provision was going to suffer. I want to know why managers were not planning for this and speaking to other Departments to see what could be done to help very severely handicapped young people instead of simply dropping all responsibility for them once they reach 18.

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“To throw all responsibility for this type of provision onto the parents is asking for trouble. If parents are not fully supported in caring for young people with severe disabilities and learning disabilities they too, will suffer from ill-health. I know from speaking to many people who have severely disabled young people at home that they have had to be prescribed anti-depressants just to cope with the pressure they are under. Some are also fearful that they will suffer from a breakdown and will need support themselves. Expecting families to cope on their own, in the long run, is not the way to solve this issue,” she said.

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