When I started at Sense less than a year ago I had very little idea how difficult families find it to get proper educational support for their disabled children. I quickly learned that it is a constant struggle for parents and carers, and for the deafblind children and young people who need this support to get on.
While many stories have been heartbreaking to hear, it’s also been incredibly inspiring to meet families who have fought so hard and won so much for their children.
Continue reading “Proper educational support for deafblind children”
Bureaucracy is the punishment for having the gumption to ask for support. Whether we need support from Access to Work, social security benefits, housing or social care, we must lay ourselves bare, on forests-worth of forms and in face-to-face assessments, revealing to a stranger everything about ourselves in the most intimate detail: our deepest, darkest secrets; our medical history; our finances; our relationships; and so on and so forth. We must justify, many times over, why we need the support we are asking for. It is a physically and mentally painful, exhausting, and demeaning process.
Why do we do it? Are disabled people all masochists, hell-bent on inflicting ever greater humiliation and distress upon ourselves? No. We do it, only, when going without the support is even more dehumanising.
Continue reading “Social Care: a cost or a saving?”
Last year, when the Dilnot commission made its recommendations on the funding of care and support, I cautiously welcomed some of those recommendations but expressed concern about what Government would actually do with them. Now that we know more about what the Government intends to do, I’m even more concerned.
The Government will set a cap of £75,000 on the amount any individual will have to pay towards their care and support costs. This cap will be lower for people under retirement age but the announcement on 11 February failed to specify how much lower, except to say it would be £0 for anyone with care and support needs before the age of 18.
Continue reading “Much more is needed to address the crisis in social care”
A report, Home Cure, published earlier this year by the think tank Demos, amongst other things, called for a more holistic and long-term approach to reablement services so that people are supported, not just to manage in their own homes, but also to engage with the community.
Engaging with the community – shopping, meeting with friends, using leisure facilities, taking part in activities, using public transport, simply getting out for a breath of fresh air – is one of the biggest challenges deafblind people face. Services that address that challenge are a must if deafblind people’s quality of life is to improve.
Continue reading “Mobility is more than waving a cane”
Whilst chatting with Donna (the technology co-ordinator for Sense) I told her about the different loops I use to enable me to listen to all my audio devices. She mentioned the ConnectLine, a system produced by my hearing aid manufacturer and organised a trial for me. Donna and Keith from Oticon came to my home and Keith linked the ConnectLine to my hearing aids.
Continue reading “Get yourself connected”