Lost in transition
Despite good practice guidelines having been available for some years, transition from children’s to adult social services can still be a traumatic time for young people with learning disabilities and their families. Editor Dan Parton reports news in depthDeborah Meldrew is worried her son, who has autism and a severe language disorder, turns 18 in December and she is unsure what social care provision will be available to him from his local authority in South London after his birthday.
For instance, her son attends a respite service for under 18s. “You would think that by October [at the time of writing] I would have heard from the local council telling me my son is going to have to leave this service and they will be in touch as to what he can do afterwards,” she says. “But I’ve heard nothing.”
Getting it right for people with learning disabilities
Treat Me Right! started out providing learning disability training for healthcare staff in an NHS Trust, but has since snowballed, driven forward in part by a man with Down’s syndrome. Editor Dan Parton reports:
When John Keavney, who has Down’s syndrome, collapsed at his home with breathing difficulties in 2009, he was rushed to hospital. He remained there for four weeks and found his experience difficult, confusing and sometimes upsetting. But once he recovered, Keavney resolved to put his experiences to good use and improve the situation for other people with learning disabilities who have to go into hospital.
He became an active member of the Treat Me Right! campaign, and now delivers training to health professionals – from doctors and nurses to midwives, students and junior doctors – and much more at his local NHS Trust in Ealing. As part of the Treat Me Right! team, Keavney works alongside Elsa Morris and delivers up to four learning disability awareness courses each month at Ealing Hospital and Ealing Community Health Services, to groups of between six and 15 people. He talks about his experiences and how healthcare professionals can improve their treatment of people with learning disabilities.
Power to the people
From service user to citizen – where to next for people with learning disabilities? Alex McClimens and Darren Lee investigate:
To begin, here’s a quick quiz. What links the following cities: Havana, 1959; Paris, 1789; Saigon, 1975; Prague, 1968? They were all sites of revolutionary uprisings where the incumbent leadership was overthrown by a mix of military and people power. Such things don’t just happen in foreign countries as we in the UK too have had our share of revolutionary unrest, although this happened a long time ago.
The thread that links these acts of rebellion was that the majority of the population felt that their political leaders were ignoring the rights of the ordinary citizen. In established Western democracies this situation is now managed by the electoral system that gives citizens the right to vote political parties in or out of government.
Watching brief: BAME autism support
Too many people with autism in black, Asian and minority ethnic communities are missing out on vital support, says Simon Shaw from the National Autistic Society:
Families of all backgrounds and ethnicities living with autism commonly struggle to access a diagnosis and support, but the National Autistic Society’s (NAS) recent Diverse Perspectives report showed that language and cultural differences among people from black, Asian and minority ethnic (BAME) communities can create additional barriers.
Ethnicity should never be an obstacle to accessing the right support, which can often be a lifeline for individuals and families affected by autism. A coordinated effort from decision makers, service providers and faith and community groups would go a long way to ensuring that the needs of families from BAME communities are met.
We first started our investigation into the challenges faced by families living with autism in BAME communities in 2012, after concluding that they had been underrepresented in a nationwide survey we carried out earlier that year.
So we approached organisations and individuals working with families affected by autism within BAME communities in England to learn about their needs and experiences. With their help, we set up 13 focus groups involving about 130 parents, siblings, carers and adults with autism.
Their opinions form the basis of Diverse Perspectives. The findings reinforce previous research that showed most families affected by autism struggle to get a diagnosis, access the services they need and integrate their child within their local community, whatever their ethnicity. But they also suggest that certain additional challenges are more prevalent within BAME communities.
Diversion signs-liaison and diversion services
Liaison and diversion and forensic learning disability services can make a big difference to whether a person offends again – but services are patchy across the country and improvement is needed. Editor Dan Parton reports:
When Home Secretary Theresa May delivered a speech in July at an event hosted by the Care not Custody Coalition, she reaffirmed the government’s commitment to liaison and diversion services in the criminal justice system for people with mental health issues or learning disabilities. This, allied to £25 million in funding for liaison and diversion that was announced in January, points to a brighter future for the services.
Liaison and diversion – which seeks to identify, provide support for and, where appropriate, divert people with mental ill health or learning disabilities away from criminal justice settings such as police stations and magistrates’ courts and into specialist treatment or social care services – has had political support for some years, going back to the previous Labour administration. Yet progress in developing a national service has been frustratingly slow.