Together for Short Lives calls UK ministers to focus their attention on seriously ill children

Together for Short Lives recently made a call to ministers in the United Kingdom (UK) after a report published by Members of the House of Lords stated that the government is failing to care for disabled people of all ages and calls for practice to be improved.

The Disability Committee identified a few challenges which prevent disabled people from accessing transport. According to the Disability Committee and Equality Act 2010 the following recommendations were made

1. Transport: the government should enforce the law relating to carrying wheelchair users in taxis. Ministers should work with train and bus companies to reduce the burden on disabled people when they travel – including speeding up the process of installing audio-visual annunciators.
2. Education: schools should be encouraged and supported to make the kinds of adjustments that can help to address the educational inequalities faced by disabled children and young people. Ofsted and the Care Quality Commission’s approach to inspecting the extent to which local areas identify and meet the needs of children and young people who have special educational needs and/or disabilities should mention the Equality Act.
3. Leisure and housing: the government should amend licensing laws to allow local councils to refuse to grant or renew licences restaurants, pubs and clubs until they make the necessary changes. Local authorities could require new buildings to be wheelchair accessible and adaptable.

Together for Short Lives has made a call to ministers to ensure that children with life-threatening and life-limiting conditions can play a full role in the society, including accessing education, transport, leisure, housing and the workplace. Barbara Gelb, OBE, Chief Executive of Together for Short Lives, had the following to say about the committee’s recommendations, “Children and young people with life-shortening conditions have to overcome some of the biggest barriers to accessing the services which many of us take for granted – especially transport.

Families with seriously ill children often can’t transport their child on public transport and can’t afford to buy a specialist vehicle with the adaptations that they need. This leaves them isolated at home or unable to bring their child home from hospital. Families whose time together is short should be given every opportunity to create previous memories and being unable to access suitable transport prevents this.

I look forward to the government’s response to this report but also call for them to take a further moral step by giving babies and young children access to the mobility component of the disability living allowance (DLA) which would allow them to afford specially adapted vehicles necessary to carry vital life supporting equipment. During this period of reflection it is absolutely vital that minsters respond to show that they are serious about improving the chances for those with the most complex needs.” To read the full article, click here.