Insight
Fights for respite
Derren Devine looks at how cutbacks to respite
services are biting across England and what
families are doing to fight back against them
Families across England are
continuing to battle the impact
of austerity as lifeline services for
parents living with autism face
the axe.
In Haringey, Ealing, West
Berkshire, Essex and on the Wirral
vulnerable families are fighting to
save services.
In the latest move, West
Berkshire Council has stood by an
earlier decision ruled unlawful in
the High Court to slash respite
services for families of disabled
children. The authority will cut
respite funding to local voluntary
organisations by more than 57 per
cent, from 386,575 to 163,432.
In July, a cut of 48 per cent by
the council was deemed unlawful
by a High Court judge because it
failed to consider its legal duties.
The cuts leave grave doubts
over the future of services offered
to families by Mencap and
Crossroads Care. At the time of
going to press, families are
James Hill: the respite offered for him is a lifeline, says mum Sally
26 Au t i s m | e y e I s s u e 2 4 2 0 1 6
understood to be looking at a
further legal challenge.
Parent Sally Hill, from Newbury
in West Berkshire, describes the
respite offered by Mencap for her
18-year-old son James as a
lifeline. Though her autistic son
has now moved on from the
service because of his age, Hill
says she would not have been able
to manage without it.
Private tutor Hill, 49, says: I
think families will be put under that
much pressure they will be pushed
I think families
will be put under
that much pressure
they will be pushed to
seriously think about
having their child put
into residential care
to seriously think about having their
child put into residential care.
Hill, who also works as a
Mencap volunteer, adds: A lot of
families become socially isolated
when theyve got disabled children
because some are so difficult to
socialise with that you just end up
doing things on your own.
Struggling for staff
West Berkshire Mencap chief
executive Leila Ferguson said the
cut to funding will create
uncertainty for the organisation that
will leave it struggling to attract
staff. She adds: Who wants to
work for somebody when they are
not absolutely sure if theyll have a
job in three months time?
Parents group Save Autism
Services Haringey (SASH)has
been battling since the end of 2014
to save adult care centres. Martin
Hewitt, whose 23-year-old son
Thomas has autism, said Haringey
Council has failed to address
parents concerns over whether
planned replacement services in
the community will match the
respite hours parents get now.
Anxiety has increased
Hewitt is a 70-year-old retired
insurance manager and cares for
his son with his wife Ann, 68. He
says: The anxiety that this places
on carers who have enough to deal
with anyway has increased
substantially. Hewitt, of Wood
Green, Haringey, adds: These are
people who are really made sick
by the problems they are facing.
In Ealing families battled in vain
to save Heller House, a respite
centre in Southall, West London for
10 to 18-year-olds with special
needs. Reports suggested
campaigners collected a signature
petition close to 12,000, but it
www.autismeye.com
Carers have
enough to deal A lot of families
with anyway: become socially
Martin Hewitt,
pictured with isolated when theyve
son Thomas got disabled children
you end up doing
images courtesy of sally hill, siobhan bryer and martin hewitt
things on your own
wasnt enough to save the centre,
which closed in July.
Siobhan Bryar, who started the
petition, has said budget cuts
meant Ealing Council instead
decided to send children, many of
whom are highly impacted by
autism, to other boroughs.
Shahida Chaudhry, whose
daughter Iqra suffers from brain
disorder microcephaly, told news
website getwestlondon she was
offered respite in Brent which
www.autismeye.com
Siobhan Bryar and son Laurence: hoping families victory will inspire others
The anxiety that
this places on
carers who have
enough to deal with
anyway has increased
substantially
was an hour further away from
home than Heller House.
Bryar, who has a son with
special needs, used the petition
website change.org to urge Ealing
to consider selling off part of the
site to a private developer. The
idea was that it would raise money
for a state-of-the art respite centre.
The families in Ealing are now
celebrating after their fight for a
new respite centre paid off. There
are plans for a 1.5m purpose-built
facility. The centre, with six
bedrooms, staff accommodation
and a garden play area, has been
earmarked for Northfields, Ealing.
Bryar, whose 22-year-old guitar
tutor son Laurence is on the autism
spectrum, hopes the victory will
inspire vulnerable families around
the UK to challenge council cuts.
Maths tutor Bryar, 53, says:
Were delighted that theyve finally
seen the light. We did get a lot of
hope when we looked up on the
internet and saw people who had
actually won their case, rather than
suffering the huge cuts that are
happening all around the country.
When Heller House closed in
July, arrangements were made for
the nine families using it to have
respite elsewhere in Ealing or
neighbouring boroughs.
Councillor Binda Rai, cabinet
spokeswoman for children and
young people, says: This is a very
exciting solution, which will give
families high quality, modern respite
facilities designed to meet their
childrens needs in the borough.
Families devastated
In Essex, families were said to
have been devastated when the
local council last year stopped
funding for one-to-one supervision
for disabled children at Mistley
Kids Club during school holidays.
The authority later found money
to provide support for the children
over the Christmas and February
half-term holidays. It says cash for
additional support has now been
earmarked up to March 2017.
Mum Julie Everest, who has
three children with autism Joe,
15, Johnnie, 11, and Lilith, seven
is among parents who have
benefited from the support offered.
Au t i s m | e y e I s s u e 2 4 2 0 1 6 27
 Insight

In July, social workers on the arrangements we have in place we

Wirral were reportedly begging for
autism respite placements. Wirral-
based charity Autism Together,
which operates a seven-bed unit,
said it was routinely turning away
social workers pleading for
emergency placements.
Service cuts, forcing more
families to care for people in their
own homes, were among reasons
cited by the charitys director of
operations Jane Carolan.
West Berkshire Council blamed
the cuts on reductions in their
central government grant. Lynne
Doherty, the authoritys cabinet
Planned: an impression of the respite centre for Ealing member for childrens services,
are ensuring that front-line services
Bryar hopes the are protected.
victory will
inspire vulnerable Alternative provision
Haringey Council has said the
families around the closures are driven by
unprecedented cuts to its budget.
UK to challenge
It maintains that those assessed as
council cuts needing services will continue to
get them, but in future there will be
a greater reliance on personal
promised there would be no budgets and community care.
reduction in services for children The authority maintains that
with the highest level of need. social workers have assessed the
She said:We had to consider needs of those who use the
this area, given our financial centres to draw up plans for
situation, but through the alternative provision. 

Families pay the price of low council tax
Mum Vanessa Bobb reveals the nightmare of the last summer holidays just one
consequence, it seems, of parents suffering when boroughs keep council tax low
The founder of an autism support
group in one of Londons most
prosperous boroughs says a mix of low
council tax and cuts means services are
under-funded. Venessa Bobb, who set
up Wandsworth support group
A2ndVoice, says services are failing
families in the borough, where Band D
council tax at 680 a year is the second
lowest in the country behind
Westminsters 669 charge.
Bobb, 48, says she struggled to cope
after she was unable to get suitable
support for her son Nathaniel over the
summer. The single mother said the
13-year-old boy, who has autism, would
have benefited from a buddy service
offering male companionship.
She says: It was a nightmare (over the
summer holidays). He went into shut-
down mode the third week in.
Nathaniel has been attending a
residential school in Kent, where his
mother said he has made strong progress
over the past two years.
She adds: He became very frustrated,
very upset that he couldnt do the things
that he was doing at school. If I did apply
Statistics show the rate of special
educational needs (SEN) tribunals
brought against the authority by parents
per 10,000 pupils was almost twice the
average for England between September
2014 and August 2015. The figures show
6.3 tribunals were brought per 10,000
pupils in Wandsworth, compared to an
English average of 3.7.
Of the five councils with the lowest
council tax in England in 2016/17, three
had tribunal rates well above the English
average between September 2014 and
August 2015. In Hammersmith & Fulham,
which has the fourth lowest council tax in
England and Wales, the figure is 8.6,
while in Kensington & Chelsea (fifth
lowest council tax) its 6.6.
Breaks not funded
Bobb paid for her son to attend a summer
camp for a week with his school and later
got a six-day break from a local respite
centre. Neither of these breaks were
funded by the council, she says.
She describes her son as being high
functioning with ADHD and says services
is to be used on individual care
packages, leaving families who depend
on the day centres for respite facing an
uncertain future.
Laxmi Patel, a SEN tribunal lawyer with
law firm Boyes Turner UK, believes the
central government austerity agenda is to
blame for the struggles faced by families,
as well as councils reluctance to increase
local taxes.
She says: Right across the board, with
budgets being squeezed its obvious that
its going to have an effect on whats
available for children with SEN, because
that comes at a cost. Where there are
limited budgets theres going to be a
direct effect.
The lawyer says the way the Children
and Families Act of 2014 extended special
Speaking out over local council services: needs educational support from the age of
Venessa Bobb, pictured with son Nathaniel 19 up to the age of 25 has also stretched
council resources.
in Wandsworth for those at the less A Wandsworth Council spokesman says
impacted end of the spectrum are very the authority spends 2.4m a year on short-
low and scraping the barrel. She is term respite and offers a buddy service
now involved in organising after-school primarily to children who are unable to
activities in the holidays at Wandsworths access other support.
Tooting Leisure Centre. We also provide a full range of
Wandsworth is not the only local educational support for children with
authority where vulnerable families seem autism in our mainstream schools at both
to be paying the price for low council tax primary and secondary level and we have
bills. In Haringey, for instance, the one of the most comprehensive networks of
authority oversaw a six-year council tax special schools anywhere in the country,
portrait courtesy of venessa bobb

for support theres nothing out there
theres no services that they can signpost
me to. And if they do its not of his interest
or its costly the funding is not there.
She says that when she has pushed
Wandsworth to provide better services in
school holidays, she has been told she
should be grateful because her son goes
to the council-run residential school.
freeze up to early 2016, while planning supporting children with autism and those
He became very the closure of adult day centres for with other disabilities.
disabled and elderly people. This includes a very successful
frustrated, very Haringey voted through a 2 per cent residential school we operate in
upset that he couldnt do council tax increase to raise cash for Broadstairs, Kent, for children with autism,
adult social care earlier this year, in line which has been judged outstanding by
the things that he was with central government guidance, but Ofsted not only for its teaching and
doing at school said the money would not be used to learning but also for the care and quality of
keep the centres open. Instead, the cash its residential setting.

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