Unheard Voices

This is a quick-ish post, in response to some family circumstances that I’m sure are echoed throughout the country.

We are hearing left, right and centre about cuts being imposed on the UK that Margaret Thatcher only dreamed about. I’m sure she’s a very happy lady now – I guess I should be glad that someone is. While I’m upset about many of these cuts, targeting culture, education and the vulnerable, the ones that are really despicable are the ones that target those without a voice, who go unheard.

My brother is one of these. He is severely disabled with Downs Syndrome, although I’m not entirely sure he’d consider himself so. At 33 years old he has his ideal life: he has a part-time residential place, so he is able to keep an eye on my mum and dad while at the same time having the independence of his own space with carers he can flirt with as much as he wants (and he is a terrible flirt). He goes out on activities with his daycare provider, including trips to bowling or the beach, usually involving a visit to McDonalds. He has karaoke nights and he can spend as much time as he likes with his beloved tapes and DVDs. He has very limited verbal communication but he can make his needs known.

So what’s the problem? Well, the Social Services department that “look after” him allocate funding for his care. Their cuts, which they are ‘forced’ to make, are impacting on services to the disabled. They have two choices: cut residential care or daycare. Daycare is a luxury, so that’s the first to go. Seriously, his daycare funding is being cut – not in so many words, the wording is that responsibility for daycare provision is being passed to the residential providers. Of course, these foolish residential providers are focusing their resources on making sure the residential care is as good as it can be, how frivolous of them. The residential care at my brother’s home is very good – the carers are lovely, they balance independence with safety very well for some very severely disabled men. So they can’t really cut that standard of care; it’s obviously important to make sure these vulnerable people are well cared-for. The option then is for families to pay for the daycare. This is all well and good if they can but the fact is that many families can’t pay. Residential care is not free, there is a small amount to contribute, and many families of disabled people have had other costs to factor in – perhaps special equipment, or shoes, or large-size nappies as children have taken longer to use the toilet or specially-built wheelchairs or bikes.

Or maybe these adults shouldn’t go into residential care, they should stay at home with their families (and obviously some will prefer it that way – I’m talking here about those who don’t. Who want the degree of independence for their children and themselves that is generally considered the ‘norm’ when children grow up). Then they get the daycare and activities and social inclusion they need. What happens when families die or are too old and infirm to care for their disabled relatives? Well, we’ll cross that bridge when we come to it. They could perhaps go into some sort of institution – I know, they could do small jobs in return for their keep. A House where they do Work, maybe. Anyway…

So, for a lot of people, the choice is between safe, independent and quality residential care, or daycare. These people will be safe and cared-for but they will be indoors, with limited activities and usually unable to make the decision to go out for the day – in effect, prisoners in a safe and caring prison. My brother’s quality of life will be severely eroded. He is only 33 – he has a whole lifetime ahead of him to spend in this way. In fact, it’s akin to shutting the disabled up in the institutions where they were once considered to belong. I thought we’d evolved past that?

I used inverted commas around the word ‘forced’ before in relation to the cuts, because I don’t believe the cuts are forced at all. For one thing, there is abundant evidence that our national debt is nowhere near the level of crisis that is being portrayed. This excellent article by Johann Hari is a good starting point. For another, I can think of several alternative strategies to cutting funds to the most vulnerable of society. Maybe cutting spending in the military for a start, or taxing those who can afford it. Taxes – there’s a can of worms. The only generation to have benefitted fully from the Welfare State are those now busy axing it.We want state welfare, we just don’t want to pay for it.

When my husband’s nanna was dying, I got very upset about the lack of care given to her through a declining NHS and a lack of investment in training for medical staff in terminal care and basic nursing (NB I am not saying nurses are ‘bad’ – I am saying there is not enough training or funds or staffing levels to enable them to care properly). I know a suggestion of raising taxes would be greeted with outrage by most people, but we have among the lowest rates of taxation in Europe. Higher taxes, properly managed, could pay for those libraries, schools, nurses, doctors, care for the disabled. Are we really that selfish as a nation that we’d rather save some pounds now than look after those of our families and neighbourhoods who need help? Really? That is so sad.

And in the meantime, the needs and voices of people like my brother, those who will suffer more, are being unheard.