Time for an early start

Parents with young disabled children often face a struggle to
find and use local services. This is now being addressed by the
government, which last month published guidance for England about
services for disabled under-threes and their families (news, page
12, 22 May).

Together from the Start¹ was created by
professionals from the voluntary sector, government officials and
social services, health, education and Sure Start practitioners,
some of whom are also advising on the National Service Framework
for Children. The guidance aims to promote effective early
intervention services, to identify and promote existing examples of
good partnership working and to support the strategic development
of services for these clients.

It says: “When children have special needs and disabilities it
is important that these are identified at an early stage and that
identification leads directly to effective early intervention and
support for families and children.”

So what sorts of problems do very young disabled children and
their families encounter? Do services meet the needs of this client
group and how do families respond? And what should social care
professionals do to improve services for very young disabled
children and their families?

National Children’s Bureau chief executive Paul Ennals
chaired the group that wrote Together from the Start. He
says the biggest trauma for families is often the realisation that
their child has a disability. “It is a shock for some parents
although having a disabled child need not be a disaster.”

Christine Lenehan, deputy director of the Council for Disabled
Children (CDC), says: “No one wants to have a disabled child. There
is a period of coming to terms with it. It is a confusing process
for parents until their child has a clear diagnosis.” She adds that
getting a diagnosis, understanding what action to take and access
to services can be a challenge for parents.

Chief executive of Contact a Family, Francine Bates, agrees. She
says having a disability diagnosed promptly can be difficult.
“Unless there are clear problems at birth it is usually the parent
who is worried about their child not developing rather than the
professionals.” Even after a parent approaches their GP about their
concerns, Bates says there can be delays in referring the child to
the local paediatric service.

Bates also chairs the National Service Framework for
Children’s external working group on disabled children, which
will present its recommendations to the government before the
summer recess. The children’s NSF is due out at the end of
this year or early next.

Parents of very young disabled children contacting existing
services for the first time are “confronted with a massive array of
mismatched information”, according to Lenehan. She argues that
services are poorly co-ordinated and often not geared up to meeting
the needs of the changing population of disabled children. She
adds: “If you were going to design services for young disabled
children you would never have started from where we are now.”

Matt Bukowski, director of social services in Lincolnshire and
the Association of Directors of Social Services lead on services
for disabled children, agrees there is a lack of good information
about what parents should do and where to find advice and
support.

He says: “There are not enough individual services tailored to
meet the unique needs of very young disabled children and their
families.”

Parents with older disabled children often tell Ennals that
current services have the same problems as they did 20 years ago.
He says: “Health still fails to talk to social services and neither
of them are talking to early years education about young disabled
children.”

Although families often welcome social care professionals’
input with their children, Bates says services must give them time
to come to terms with their help. “Some families feel they are
failing if they ask for help from social services,” she says.
“Support must be provided that is not patronising or
judgemental.”

Families of very young disabled children can be traumatised by
their first experience of a service if they are dealt with
insensitively. Ennals says having to repeat their history to every
professional they meet is also very painful.

Lenehan says parents tell the CDC that staff from different
agencies fail to read their case files: “Families do not like 25
different professionals going into their home and asking them to
re-tell their emotional story again and again.”

Services for very young disabled children and their families
would be greatly improved if they started from the perspective of
the rights of the disabled child, says Bukowski. “Services that
give the child and his or her parents a voice are much more
successful in terms of meeting their needs.” According to Bates,
staff that engage with families about decisions that affect them
and who can overcome organisational barriers to get them what they
need are “the real heroes and heroines in many parents eyes”.

Together from the Start recommends introducing a key
worker for families with very young disabled children to provide
general support and to help co-ordinate services. The idea is
backed by Lenehan, who says families should be able to go to any
professional for help. “Staff don’t have to be an expert but
they should know how to access the necessary information.”

Ennals agrees that social care professionals should work more
closely with health and education to review local services and
improve them. He says: “I have been in this sector for 20 years and
feel more optimistic now than I have ever felt. At last we really
might be able to crack it and provide our clients with joined-up
services.”

¹
Together from the
Start, Department for Education and Skills and Department of
Health, 2003, see
www.dfes.gov.uk/consultations/docs/177_1.doc

“At first we weren’t too concerned”

Doug Morris and Sandra Young are the parents of
two-and-a-half-year-old Ben. He is a lively boy who laughs a lot
and loves having his photograph taken. He also has spinal muscular
atrophy (SMA) type 2, a rare condition that causes weakness of the
muscles.

Initially, the couple did not suspect Ben had any problems but,
during his eight-month check up, his mother mentioned to the GP
that he did not sit up or roll like other babies. Ben was referred
to a paediatric consultant at their local hospital. “Our GP said he
was sending Ben there just in case, so we weren’t too
concerned,” she says.

They realised it was more serious when Ben was referred on to a
paediatric neurologist at a hospital in a different county, where
he was diagnosed with SMA. Morris says they were devastated: “We
were confronted with a disease that was immeasurable in how it
would affect our lives and how services would be able to cope with
it.”

The family was then put in contact with several services. Young
says: “I felt ‘thank God there is all this help, we are not
alone’.” They now see various health specialists and a social
services occupational therapist, and get advice from the Jennifer
Trust for Spinal Muscular Atrophy charity. They also started a file
containing detailed information about Ben’s condition,
including all his appointments. Morris says: “Once we took control
of the situation we could see the wood for the trees.”

The main difficulty the family has faced is in acquiring a
wheelchair. Young says dealing with their primary care
trust’s wheelchair services department has been a “real
struggle” because at first they said Ben was too young to qualify
for one. However, funding is now being approved.

She urges those working with disabled children not to have
tunnel vision. “All disabled children are different and
shouldn’t be categorised by professionals. They need to be
treated as individuals in order to find out what is best for them
and their families.”