Making Sense – all week

A group of charities intends to put the spotlight the plight of
deafblind people in a national awareness week

April marks the sixth anniversary of community care legislation
and the third anniversary of ring-fenced funding, a measure which
the government appears determined to revoke.

Both issues will be highlighted in the preceding week – 24-30
March – by Sense, the National Deafblind and Rubella
Association.

There are an estimated 21,000 people who are deafblind, yet
their plight is often swallowed by wider issues affecting the
disabled. Sense Week aims to change that, and will end in a
reception at Buckingham Palace hosted by the Princess Royal.

A central question to be raised during the campaign is: ‘How
have deafblind people, facing one of the most challenging
disabilities, coped with care in the community?’

Sense has already started lobbying MPs of all sides, and
Labour’s frontbench team on disabled issues, Tom Clarke and Gordon
McMaster, intend tabling a Commons motion urging cross-party
support.

The charity runs family centres, residential units and services
for deafblind people and their families. Failings in government
provision are certain to be exposed but Sense aims to be
politically non-partisan.

A briefing paper on the Disability Discrimination Act 1995
side-steps last year’s political controversy: ‘The implications for
deafblind people and the people who must now accommodate them are
vast. The Act will put the onus on business to provide full access
to their services, including written material, public sites and
employment opportunities.’

The issue was thrust into the spotlight by the case of deafblind
child Thomas Creedon, whose parents sought permission to stop
feeding him artificially. He died of natural causes in
February.

A Sense spokesperson says families like the Creedons ‘need
support and understanding to cope with their new-found situation
and to find their way through the maze of professionals and
authorities, all searching for the most appropriate solutions when
there seems to be no right answer.

‘It would be wrong to draw glib comparisons between Thomas’s
case and others. However, Sense works with many children who are
deafblind and have multiple disabilities, to help them live as full
a life as possible.’

Sense was born out of the efforts of two mothers of deafblind
children in 1955. Over the last 40 years it has grown to be the
largest organisation caring for deafblind people in the world.

Last summer the organisation held an exhibition in the Houses of
Parliament to publicise its Child 2000 campaign, which aims to
eradicate preventable childhood diseases by the turn of the
century. That won cross-party support up to Cabinet level.

Sense’s annual report says: ‘The most obvious example of people
power was over discrimination laws. For years the government
opposed attempts to outlaw discrimination against disabled
people.

‘When the government blocked an MP’s anti-discrimination Bill
millions of disabled people, their organisations and families came
together in one of the largest and most public campaigns in recent
years.’

The report concludes: ‘Not all the most important campaigning
victories reach the pages of newspapers. Securing the right social
services or educational support or social security benefits at the
right time are the most important priorities for Sense’s
families.’