Recently I was asked to give a short talk on my experience as a parent and carer of social care provision in our local authority. Here is what I said:-
Good evening
As some of you will know I have two sons in their twenties, both on the autistic spectrum.
The
younger, Thunderthighs, is 23 and doing yet another Life Skills Course.
Although he went through the Special needs education system he has never troubled social care. He is too able and experience suggests that trying to get anything for him would be a lot of hassle with no useful outcome.
Our older son, Ferretfingers, is 25 and was allocated a social worker when he turned 18.
This was when Tyne Met College decided that their special needs courses would be the same hours as those of mainstream students. A great example of “the same does not mean equal”.
Realising Ferretfingers would be unoccupied for two, then three weekdays I asked about alternative activities. For my sanity as well as his benefit.
It took some months but we eventually got him his Care package.
The package provided for three days a week at Independent Lives, which has changed both name and location and is now <Local Authority> Community Care.
I found out myself that the Rising Sun Farm was developing its own day centre and got him a day there when it opened.
He now relies entirely on me to keep him occupied and active.
Ferretfingers no longer has social worker.
He has an “Enablement Officer”, which is, as far as I can work out, a less qualified clerical person who does the paperwork, or data imputing, and costs less.
Every year, or so, the enablement officer brings around the paperwork.
Sometimes,
to make life interesting, the software or hardware system is changed half way
through and we have to do it all over again.
And wait some more.
In our case we currently have the maximum points 150.
That means Ferretfingers’s budget for weekly activities is £150.
The number of points and the size of the budget has remained the same for as long as he’s had one.
This pays for two days a week at day centres, and two weekends respite a year at a caravan park with a worker from a local Learning Disabilities charity.
A day, by the way, means he is collected anytime between 9 and 10 am and home by 3 – or later if he’s the last dropped off.
Because Ferretfingers is in receipt of Personal Independence Payments and Employment Support Allowance he has to contribute towards that £150.
It was £19 a month.
In February I was told this would rise to £26.
Ferretfingers broke his ankle on the seventh of February.
I managed to get carers to come and wash him at home for the four weeks hewas at home with a cast on and couldn’t bathe or shower. But it took help from the hospital’s Occupational Therapist, a report from a Newcastle Social Worker and some nagging of the Enablement Officer to get that done.
Ferretfingers has not accessed any day centre since February.
His contribution payments are still being taken.
When Ferretfingers was in his late teens the council provided a club one evening a week for young people with special needs. This was outsourced to Barnardos and has since disappeared. Other charities do provide activities, but it is up to carers to find out about, and sometimes pay for, them.
Over the past decade Social Care has provided less and less to fewer and fewer people and it feels as if we have to jump through more hoops to get it.
The financial amount of the care package remains the same (unless it can be lowered), the bar to qualify for Care keeps being raised, as do the contributions towards it, while the level of service gets lower.
My sons are lucky.
They have articulate and able parents to fight their corner.
Many, probably most, people needing social care do not.
I’m sure the councillors and council officers are doing their best and it’s all down to the Government and austerity, but it does feel as if the weakest and least able to protest are bearing the brunt of the cuts.
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