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.
We
fill in Ferretfingers’s needs and my need’s as a carer: neither of which
change.
We
wait while the data is input and the computer coughs up how many points our
needs are worth.
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.
