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ContactBridging The Gap
September 2007
The Muscular Dystrophy Campaign has launched a new campaign to improve the journey into adulthood for disabled youngsters.
Findings from interviews with young adults living with muscle disease have been released in the first publication of the ‘Bridging the gap’ campaign.
Speaking at the launch during the Muscular Dystrophy Campaign’s national conference in Westminster, the Rt. Hon. Kevin Barron MP, Chair of the Commons Health Select Committee, said:
“Too often families living with muscle disease face difficulties during the transition from childhood to adulthood.
“Despite young people with muscle disease living longer, there is evidence from several UK studies to suggest that the quality of services declines once adulthood is reached.
“It can be a difficult time for adolescents with complex illnesses and for their families.”
Going to university is the focus of the charity’s first investigation, which involved in-depth interviews with 20 people living with muscle disease by an independent research agency.
Findings included:
Kate Parkin, a trustee of the charity whose teenage son has muscular dystrophy, said:
“Social Services and the education providers need to ensure that young people with disabilities are able to enjoy the same opportunity to attend university as everyone else.
“Young adults with disabilities need support and advice throughout their journey into adulthood, and this needs to be provided in a holistic way looking at all areas of their lives including medical, care, education and work and how they impact on each other.
“Young people with muscle disease have to do more planning than your average student when thinking about university, which is why support and guidance from a trained professional is so important.”
Many young adults with muscle disease face obstacles before even getting to university. Michaela Hollywood, aged 16 and hoping to study Genetics at university, is battling with her local authority because, despite achieving a double A grade in Science, she cannot get a place at her local school to study Chemistry.
Michaela, who has spinal muscular atrophy and uses a powered wheelchair, said:
“I couldn't believe the amount of protocol I was faced with just days after getting my GCSE Results back.
"The amount of time it would take for me to change school would amount to months, holding me back from my studies... My only choice now is to attend a school that is not doing all the subjects I need to study Genetics at University."
For more information please contact Nic Bungay on 020 7803 4847.
Download the Bridging the Gap leaflet here.
Bridging The Gap (282 kb)![[pdf]](/display_images/document_icons/pdf.gif)
The Muscular Dystrophy Campaign has launched a new campaign to improve the journey into adulthood for disabled youngsters.
Findings from interviews with young adults living with muscle disease have been released in the first publication of the ‘Bridging the gap’ campaign.
Speaking at the launch during the Muscular Dystrophy Campaign’s national conference in Westminster, the Rt. Hon. Kevin Barron MP, Chair of the Commons Health Select Committee, said:
“Too often families living with muscle disease face difficulties during the transition from childhood to adulthood.
“Despite young people with muscle disease living longer, there is evidence from several UK studies to suggest that the quality of services declines once adulthood is reached.
“It can be a difficult time for adolescents with complex illnesses and for their families.”
Going to university is the focus of the charity’s first investigation, which involved in-depth interviews with 20 people living with muscle disease by an independent research agency.
Findings included:
- The main problem reported by the majority of students was organising their care through social services.
- Some social services departments had little idea of implementing feasible care packages for disabled students going away to university.
- Students who remained living at home felt they had missed out on key parts of university life.
- The short time between A-levels and start of term could cause problems because universities would only make adjustments once they knew the disabled students would definitely be attending
Kate Parkin, a trustee of the charity whose teenage son has muscular dystrophy, said:
“Social Services and the education providers need to ensure that young people with disabilities are able to enjoy the same opportunity to attend university as everyone else.
“Young adults with disabilities need support and advice throughout their journey into adulthood, and this needs to be provided in a holistic way looking at all areas of their lives including medical, care, education and work and how they impact on each other.
“Young people with muscle disease have to do more planning than your average student when thinking about university, which is why support and guidance from a trained professional is so important.”
Many young adults with muscle disease face obstacles before even getting to university. Michaela Hollywood, aged 16 and hoping to study Genetics at university, is battling with her local authority because, despite achieving a double A grade in Science, she cannot get a place at her local school to study Chemistry.
Michaela, who has spinal muscular atrophy and uses a powered wheelchair, said:
“I couldn't believe the amount of protocol I was faced with just days after getting my GCSE Results back.
"The amount of time it would take for me to change school would amount to months, holding me back from my studies... My only choice now is to attend a school that is not doing all the subjects I need to study Genetics at University."
For more information please contact Nic Bungay on 020 7803 4847.
Download the Bridging the Gap leaflet here.
Bridging The Gap (282 kb)
Getting in and getting on
Skill's new guide encourages disabled students to apply to Higher Education.
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