abuseDisability discrimination remains rife in the country as many parent carers of children and young people with learning disabilities encounter negative attitudes and struggle to access healthcare services, a new report has found.

The report, ‘Disability Matters in Britain 2016: Enablers and challenges to inclusion for disabled children, young people and their families,’ reflects the views of 10 young people, 123 parent carers of disabled children and adults and 128 professionals and volunteers who responded to the Disability Matters ‘call for evidence’ earlier this year. Key findings include:

Out of 72 examples from parent carers, 30 experienced negative or unhelpful attitudes from others including other parents

22 parent carers said they found it difficult to access healthcare services 

20 parent carers reported trouble in finding opportunities for their child or young person so socialise with others

19 parent carers said their child hadn’t accessed any social activities such as cinema, bowling and youth clubs in the past 12 months due to poor attitudes, inexperienced staff or inaccessible buildings and services

40% of 96 respondents in the health sector felt their organisation was average or below average at communicating with disabled children and young people.

Mary Busk, a mother of three from North London, took part in the report, and in it talks about some of her family’s ‘hurtful’ experiences. Mary’s 16-year-old son Alex has autism, severe learning difficulties, sensory processing disorder and complex language disorders. That, combined with communication difficulties and a lack of understanding among people in society, has in the past led to Alex being told he is ‘too disabled’ to take part in school plays and his behaviour too unusual to visit museums. 

Alex has also faced discrimination in hospital. “At the age of 14 Alex had to go to hospital to have some tests done which required him to have a general anaesthetic,” said Mary. “The hospital was totally unprepared and ended up turning him away because they hadn’t made suitable adjustments to meet his needs.”

Following a physically and mentally tiring complaints process, Alex was re-booked for the procedure and adjustments made. However, the hospital went from one extreme to the other. “They had gone totally over the top, Mary said. “They had cleared the whole ward, the entire theatre and had all these men in white coats there. In reality, all he needed was a side ward or a room. If they talked to us and understood him first they wouldn’t have needed to go that far.”

Since Alex’s experience at the hospital, adjustments have been made so Mary, her family and others don’t find themselves in the same situation. The Disability Matters in Britain 2016 report highlights situations like these but aims to encourage service providers to be proactive, adapting their services before families are unintentionally discriminated against.

Dr Karen Horridge, clinical lead for the Disability Matters Programme and fellow of the Royal College of Paediatrics and Child Health, said: “Stories like Mary and Alex’s are not unusual. However, as they have demonstrated through their own struggles, positive changes in attitudes, behaviours and practice can and have happened. Change from fear to positive, ‘can do’ attitudes is what we want to achieve through the publication of the Disability Matters in Britain report.

“There were a number of cross-cutting themes in the report that young people, parents, carers, professionals and volunteers reported. There were a lot of good inclusive practice celebrated but also frustration and disillusionment at the increasing barriers to meaningful inclusion. It’s now time employers and service leaders take action.

“Disabled people are entitled to the same opportunities as everyone else so we want service providers to learn from best practice, adapt their services and if they can, go the extra mile so they are fully inclusive. Training staff to be more disability aware is a very quick and easy way of beginning this process.

“Disability Matters (www.disabilitymatters.org.uk) is an online tool which provides engaging e-learning resources, advice and information that enable employees to reflect, challenge and positively change their own fears, ideas, attitudes and beliefs towards disability in children and adults. Just 20 minutes spent working through one e-learning module has the power to enhance so many lives, giving disabled people the quality of life they so rightly deserve.” 

While highlighting some negative experiences, the Disability Matters in Britain 2016 report also identified some excellent examples of practice. This included East Stour Primary School in Ashford, Kent, which has made a number of small changes such as on-going training for all staff, adjusting hand driers, using different colours on doors to differentiate between push and pull and adapting activities in the curriculum such as PE, which has created an environment where disabled children feel welcome and included in school.

“I am hopeful about the future,” said Mary. “I don’t think it will be easy but we feel positive thanks to new legislative frameworks that have been put in place and through raising awareness with reports like this. We now just need everyone else to catch up. There’s no reason why disabled people shouldn’t have the same opportunities as everyone else. We just need services to come together with families to achieve that.”