Conversation with the
Prime Minister - transcript signed off by Downing Street
Anna: I feel an
awful lot of pressure from parents and the reason being, Facebook has
been fantastic for us parents. We’ve formed this almost virtual
autism community and we are supporting each other and parents are
very angry at this moment in time. I speak from grass roots level. I asked what I
should ask, within an hour there were 100 questions.
I feel this enormous
burden that I have to do it for them. What they are saying is: Why
does accessing services for simple education and care have to be a
constant battle. It’s bad enough getting a diagnosis. It seems like
you are almost being penalised because you have a child with autism.
Why is the system so
difficult? The parents are so anxious, they feel vulnerable, they are
worried about their children they are worried about them becoming
adults. It seems less and less services are there for them.
Cameron: Were most
of the questions about the process of getting a statement?
Anna: Statement of
special educational needs, you’ve got local authorities that write
these statements that are not worth the paper they are written on.
It’s woolly word bingo. You’ve got things on there that say
they’d benefit from, well I’d benefit from winning the lottery!
Anna:
What I say to you is, these parents that don’t really know anything
about the statementing process, they read these statements and they
think I’m going to get speech and language therapy regularly, but
as long as they get it once a year that’s regular. I have regular
Christmas dinner. It needs to be specified, it needs to be
quantified. I know that you’ve got the new care plan coming
together and you’re saying that health, social services and
education are going to be working together, I’ve seen no evidence
of that, so what actions are you going take.
Cameron: You are
absolutely right, I think the process of getting the statement of
special education needs have been much and it’s been very
confrontational and also it hasn’t taken into account enough health
need and social needs and that’s what this new reform… it’s not
in yet, we haven’t introduced it properly yet… should deliver.
That when you’re getting your statement, rather like the Passport
[to care] we were talking about, the person responsible for health
and education… they’ll all be sitting there together so when you
get the statement it should include everything. It’s not perfect
because in an ideal world you’d probably have the statement done by
someone completely different to the local authority because in the
end the local authority is both the provider of the statement and the
provider of the services. We can’t do that now, but I think this
new process of having health and social care more involved will be
better and I hope this new process is going to be more streamline.
Cameron: And also we
address something, which is more difficult, but nonetheless which
needs to be said. I think part of the problem in Britain is that we
have so many children who are specified as having special needs and
actually what we need to do is focus on the ones that really do have
a special need that have a learning disability and really making sure
we help them. I think we’ve been too slack at saying some children
who have got problems with reading for example have got a special
need, whereas sometimes they just haven’t been taught properly. So
I think the more you can focus on the most needy, the better you can
do for those people.
Anna: I’ve spoken
to parents where they’ve waited months and months for an
appointment and the consultant paediatrician says this child’s got
some autism traits. It’s like saying you’re a little bit
pregnant. You either are or you’re not.
Anna: You’ve got
parents who are waiting and because they don’t have the passport
with the diagnosis they are not getting the support they need. The
children are stressed at home, their parents are stressed, their
siblings are suffering. These parents need someone o sit down and
say, this is what autism is.
Cameron: That’s
true, you’re the expert, but isn’t it difficult with autism
because there is a spectrum. I’m always struck because when I see
parents with autistic children because if you’ve got a sever
learning disabled child, you’ll often find those parents in one
group saying we’ve got a special school, we’ve got to save this
excellent school. With children with autism, you have some who want
special schools for autistic children, some who want mainstream
provision with help for autistic children. The spectrum is quite big,
if don’t know whether you find this with your school, but that does
make it more complicated.
Anna: You have got
children who can cope in mainstream schools, then you’ve got
children like my own two sons and it just wasn’t working for them.
Angelo didn’t even get the chance, because they said we can’t
even meet his needs and that was when he was just starting school. I
shouldn’t have had to re-mortgage my house, I shouldn’t have had
to set up my own school. I’m glad I’ve done it because I’ve
discovered strengths I didn’t even know that I had.
Cameron: Did you
find that when you first had your children and you were looking at
where to go to school, did you find you got a good explanation of
what was on offer? I think this is a real problem
Anna: No. I was told
by Hillingdon the ball was in my court and it was up to me to find
the right type of school. At first I was told my kids were the only
kids in Hillingdon that had autism, which made me feel really
isolated.
Cameron: We have
changed the rules about this and this was based on my own experience.
You’ve got to make sure that parents are properly told about what
is available. The presumption should be choice. It should be the
choice for the parent, looking at the evidence, looking at what’s
available to make a choice about the child.
There used to be the
presumption heavily in favour of mainstream schools and that meant -
interpreted by some local authorities - that they didn’t tell you
about what was available. When Ivan was born they didn’t tell us
about the school that he ended up at. They didn’t even tell us that
it existed. We had to find out about it separately and that’s nuts.
Anna: The thing with
autism is that there are so many different strategies, I think I
counted about 17 of working with children with autism. Parents feel,
which one do I choose? What’s going to be the best one for my
child?
Cameron: Isn’t
that inevitable because we haven’t got to the bottom yet of some of
the cause and what the effects can be?
Anna: I think the
thing is training, consistency in training. I think that is what a
lot of mainstream schools are crying out for.
Cameron: The
Government is putting money into the National Autism Centres, so we
are funding this research, but there are different approaches and I
don’t think we can totally legislate for one while it’s still
uncertain.
Anna: What are the
Government’s priorities for children with autism? Parents need to
hear something because they can’t see the light at the end of the
tunnel.
Cameron: Help the
parents make the choices. The approach this Government is taking is
much more trusting of the parents, saying you should have more choice
in safe special schools, stop the closure programme which we did. And
then to put more power in the hands of parents whether it’s through
individual budgets and direct payments so you’re in command.
We are changing the
statementing process to make it more inclusive of the other things
other than education.
Anna: I think that
for some parents that’s too much pressure because you have to deal
with the diagnosis. To be honest with you I don’t know how I’m
not on the floor because I sleep three to four hours a night because
of my son Angelo.
Cameron: How old is
he now?
Anna: He’s 20.
I’ve had to set up everything, a vocational college for 45 adults.
I didn’t even go to university, I just about got ‘O’ Levels.
It’s the passion for my boys and listening to other parents that
drives me on.
I’d like to ask
one more question if I may, for adults. The disability living
allowance is going to be replaced by personal independent payment.
What’s the Government going to be doing to ensure that adults with
autism will not be at a disadvantage when being assessed, for things,
such as ATOS, work capability assessment, disability living
allowance, again parents of adults and adults themselves who are
affected are very anxious.
Cameron: I can
understand the concern about it. Basically, disability living
allowance has been a good benefit. It’s not means tested. it’s
based on your disability, not your earnings. and it has worked for
many people. I think the problem with disability living allowance is
that as you know, you've done it, I’ve done it, it’s an enormous
form you fill out (Anna – you need a degree to fill it out) you
need a degree to fill it out. and actually it isn’t really reviewed
and assessed properly and it isn’t really based on a proper medical
check. and so personal independence papers which we’ve put together
listing very carefully to all the disability and medical
organisations will be much more based on what your capabilities are,
what your medical diagnosis is, and will be properly reviewed. Now
this is not about cuts – the money - DLA and PIP, the money’s
going up, not going down. but there will be proper assessments.
Because sometimes people on DLA- they’ve got their DLA, and they’ve
just been left on it for year after year after year. so what I ‘d
say to people is of course change makes people anxious but actually
it’s better to have a system that properly assesses you and then
reassesses you on your need rather than a very very complicated form.
Anna: I’d just
like to give you a letter if that’s alright from 12,000 families of
adults with autism who all they’re asking for is an independent
autism advocate that when they go through this process of ATOS that
there’s somebody there. Because some of these adults come across as
more able than they are.
Cameron: What it’s
meant to be is checking out what you are capable of doing which
doesn't necessarily link to your medical condition. There are people
who have a physical disability but who are have incredibly fulfilling
work lives because they’re able to do all sorts of things. So we
should be looking at what people are capable of. I also think the
whole issue with ATOS and work capability assessments, because
someone is disabled or someone has stress or someone has other
conditions, we shouldn’t write them off, we should be asking what
can you do. Because actually even if you can only work for a few
hours a week or you’re only capable of some sorts of job, it’s
much more fulfilling to be able to do something than actually to be
written off that you can’t work .
Anna: I understand
what you’re saying, but have a read.
Cameron: But I will
have a read of the letter.
Anna: Thank you.
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