In from the cold?

The disability of deafblindness has been neglected for many
years. Now government guidance is helping build awareness but, as
ever, questions remain over funding. Natalie Valios reports.

Deafblindness has been described as the loneliest condition in
the world. It is a condition that affects at least 40 people in
every 100,000.

But many local authorities have no idea how many people in their
area are living with a dual sensory impairment. Either they are
just not known to their local social services department or staff
fail to recognise that existing clients – such as older people or
those with disabilities or learning difficulties – can also have a
dual sensory impairment.

Unfortunately for sufferers, even where a need has been
identified appropriate services are rare. According to a 1999
survey of 360 deafblind people by Sense and Deafblind UK, while
seven in 10 needed one-to-one support services, only one in eight
had a service that met their needs.

The good news is that this situation could be about to change. A
private member’s bill from Lord Ashley, which would have required
local authorities to identify, register and assess the needs of
deafblind people, failed last year. But the government has since
taken it upon itself to incorporate these measures into new
guidance under section 7 of the Local Authority Social Services Act
1970.¹

As ever, the bad news is that no funding has been provided to
help local authorities meet their new responsibilities.

“Money is an issue,” says Lucy Drescher, campaigns and public
affairs officer at Sense. “But so is ignorance and lack of
knowledge.

“For some local authorities deafblindness is not a priority.
They aren’t going to go out and find those deafblind people unless
they are forced to. Other local authorities are interested. Some
are already providing assessments, but they are worried about
having no expertise or specialist qualifications, the amount of
work and the lack of money.”

Deafblindness is a unique disability. It does not, and should
not, fit into a mainstream service, either for a blind or visually
impaired person or a deaf or hard of hearing person. Sensory
impairment teams working with deaf or blind people will not
understand all the needs of a deafblind person. But to create
dedicated, needs-led services involves specialist training for new
workers and new teams, and that means money.

“Even the people who are receiving services are often not happy
with them because they feel that the people they are receiving them
from don’t understand their specialist needs,” says Drescher.

There are four basic groups of deafblind people, each with their
own needs: those born with the disability; those blind from birth
who subsequently acquire a significant hearing loss; those deaf
from birth who subsequently acquire a significant visual loss; and
those who acquire a hearing and sight impairment later in life.
Contrary to popular belief, many deafblind people do have partial
sight or hearing.

These differences can make communicating with deafblind people
more difficult. Communication will be limited and difficult to
develop if someone is born with the disability, whereas someone
whose sight is worse than their hearing may not be able to lip
read, but can cope with an advanced hearing aid. Other methods of
communication include manual finger spelling, block alphabet and
hands-on sign language. Also, objects are used to help the client
know what to expect, for example, putting a cup in their hand so
they know they will be having a drink.

In order to work with deafblind people, social workers need to
be trained to communicate in several ways: being able to do manual
finger spelling, for example, is simply not enough, says
Drescher.

“If a deafblind person is going to an appointment and they need
help from social services, you have to find out what their form of
communication is so that someone who can communicate with them
accompanies them.”

As a result of the complexity of this disability, one-to-one
support can be the most important service. There are three main
categories.

– Intervenors work to help deafblind people, particularly
children and young people, understand and access services. For
example, an intervenor might come into a child’s home and help them
understand language. When the child is older, an intervenor might
accompany the young person to a group or club, to help them
socialise.

– Communicator-guides are trained to help deafblind people,
particularly those who are acquired deafblind, access services. For
example, they guide them to shops and help them communicate with
shop staff, and help with reading and correspondence.

– Interpreters.

Despite the lack of funding accompanying the guidance,1 both
Sense and Deafblind UK believe the guidance is helping raise the
profile of this disability.

“It is making a difference. People are talking about deafblind
people, which wasn’t happening before – it was a low priority,”
says Debbie James, head of regional and rehabilitation services,
Deafblind UK.

As long as social workers get to grips with deafblind issues,
the guidance will change things, James believes. “If the person
doing the assessment recognises that a deafblind person is a
prisoner in his or her own home and writes it on their assessment,
that does mean that the funding panel will look at it.”

The obvious drawback is that although the funding panel might
well look at it, it can still say it doesn’t have the money to
provide the services.

“The guidance gives deafblind people the right to the services
that they should be able to expect, but without specific money,
there’s nothing forcing local authorities to spend their money on
these clients,” says Drescher. “In local authorities where they
don’t take deafblind needs seriously people with this disability
will continue to fall through the net.”

¹ Department of Health, Social Care for
Deafblind Children and Adults, DoH, 2001

What action must councils take?

The section 7 guidance asks local authorities to take the
following action:

– Identify, make contact with and keep a record of deafblind
people in their catchment area.

n Ensure that an assessment is carried out by a specifically
trained person/team, equipped to assess the needs of a deafblind
person – in particular to assess the need for one-to-one contact,
assistive technology and rehabilitation.

n Ensure appropriate services are provided to deafblind people,
who are not necessarily able to benefit from mainstream services or
those services aimed primarily at blind people or deaf people who
are able to rely on their other senses.

– Councils should ensure they can access specifically trained
one-to-one support workers for those people they assess as
requiring one.

– Provide information about services in formats and methods that
are accessible to deafblind people.

– Ensure that one member of senior management includes as part
of their role overall responsibility for deafblind services.

The effort to improve deafblind services

Thirty regional development officers around the country are
working alongside other agencies to identify deafblind people, and
obtain the special services they need. Officers were originally
funded by Deafblind UK, but several are now part or fully funded by
local authorities.

Faye Harburt has held the post of development officer for
deafblind people in Essex since January 1999. It is a three-year
post funded by social services, Deafblind UK and Sense.

The council has a deafblind register and Harburt also holds a
confidential database of all deafblind people in the county, which
currently holds just under 500 names, that runs separately to the
register. As not everyone chooses to be on the register, the
database gives Harburt a better picture of where services are
lacking and need to be developed.

A deafblind planning group meets every three months. The group
includes parents of deafblind children, deafblind people, and
social workers for deafblind people.

Alongside Harburt, two social workers and two social work
assistants from the sensory teams also have some responsibility in
working with deafblind people. Two have received specialist
training, while the remaining two are about to be trained.

Essex is also about to appoint a social worker from the
children’s sensory team in Chelmsford to have responsibility
for deafblind children. This is thought to be the first post of
this kind in the country.

Three clubs for deafblind adults are run in Clacton, Braintree
and Chelmsford; two are run by Deafblind UK and one by Sense Essex.
Here people can reassure themselves that they’re not alone,
and enjoy what’s on offer from a hand massage to a
demonstration of the latest hearing equipment. “It’s an
opportunity for them to meet because the difficulty of getting out
of your house with sight and hearing loss is immense. For some
it’s the only chance to get out of their house for a month,”
says Harburt.

Deafblind UK’s volunteer scheme has recruited about 35
volunteers in Essex, but the waiting list of deafblind people
wanting a volunteer currently stands at 51. Volunteers are offered
training to understand deafblindness, communication and
guidance.

“Although there’s no money behind section 7, it helps
workers like myself to push for a change in the way of thinking,”
says Harburt.