I’ve always agreed with the idea set out in the Inclusion Now agenda that it is essential to consult with disabled individuals when implementing any sort of disability strategy or adaptation. I know I’m not alone in being constantly frustrated by box-ticking organisations who have considered the bare minimum of what is required for disabled patrons rather than what would actually be most effective, and so I’m always pleased to be asked for my advice or opinion on how to move forward in the most disabled friendly way.
This is why I was very keen to attend a roundtable meeting with the Ministers for Disability and Education & Familes (Maria Miller and Sarah Teather) on behalf of Trailblazers on Tuesday. The aim of the meeting was to get some ideas down about how best to set out a long-term disability strategy for young people, covering health, education and social care, by discussing some of the flaws and difficulties the current system had revealed to us as disabled young people. They were especially interested in the transitional periods covered and how best to support young people going through those transitions.
The range of disabilities and social groups represented was pretty broad – alongside myself there were representatives from Whizz Kids, Mencap, Include Me Too, the Council for Disabled Children and the youth forum of the Norfolk Coalition of Disabled People. All of these organisations have first-hand experience of what it is like to grow up with a disability, and the challenges posed by the authorities and professionals we have to deal with. It was a great opportunity to bounce ideas around and unsurprisingly revealed a lot of issues held in common, regardless of specific disability.
The key discussion points to come out of the meeting were:
- “Transition” can’t be pinned down to a specific time period, it’s different for everyone. There was a general consensus that professionals involved with the care of young people tended to view the transitional period as purely the years between the ages of 16 and 19, when people move from child to adult services, and from compulsory education to further education or employment, but it’s clear that this view is too narrow. For those with a changeable or degenerative condition in particular, transition is a constant process that never really has an end point, and it certainly shouldn’t just be thought of as a few short years which, for many, aren’t even the most crucial ones in a person’s development.
- Consistency is key. A lot of people were frustrated with how often the people in charge of their care changed or moved around, and how little cohesion there was between one social worker (for example) and the next. The idea of a key worker, someone who sticks with one young person for a period of several years at least and is a point of contact for all issues relating to disability (whether that be changes in needs or something as simple as how to fill in a DLA application) would give the young person more autonomy and confidence as well as avoid the frustration of constant reassessment and having to explain one’s situation to fifteen different people over the course of a few months, as many of us have had to do at some point.
- While the Ministers were keen to focus on the practical issues facing young disabled people, what these invariably boiled down to were issues of attitude rather than practicality. It’s something that Trailblazers are all too familiar with – a willingness to help and to find solutions does more to overcome barriers than any number of ramps or widened doorways if they’re accompanied by a no-can-do mentality. It’s a difficult situation for the government as they can’t legislate on attitude, but suggestions from the round table included more financial support for disabled people in the workplace (in situations where undertaking work experience would ordinarily be prohibitively expensive) in order to promote wider awareness, and more generally an emphasis on the autonomy and freedom of the individual with regard to the choices they make about their living and support, incorporating flexibility in disability policy and regulations in order to allow the best quality of life on a person-by-person basis.
As is so often the case with issues such as these, we find ourselves in a bit of a vicious circle. Attitudes toward and opportunities for disabled young people are generally poor, and so there is little uptake, and so it is perceived that these opportunities are not required and these attitudes are justified. Speaking not only with Trailblazers but also many of the young people I met in Whitehall, it’s clear there is a great desire to break out of this circle and start bringing disability awareness more into the mainstream, and this is precisely where we need the government’s support. I hope that as a result of this meeting, the new rounds of disability legislation issued in the next few years will provide a more long-term and rounded view of what it means to grow up with a disability, and look to a through-life relationship with each individual, rather than just tiding us over until the next general election.