Memorandum from Lindsay Carter (DDB 98)
In a fair and decent society all disabled people,
regardless of impairment, should have the choice and the resources
to live in the community. The government must act in a positive
way to create the structures and systems required so that everyone
has that choice. Disabled people have been locked away and segregated
in institutions too long and it is time for this practice to stop.
Disabled people should have the right to full inclusion in this
society.
SOCIAL MODEL
OF DISABILITY
The new legislation fails to take the Social
Model approach, instead it is building on the medical/individual
model approach taken by the Conservatives under the DDA in 1995.Under
this approach (medical Model) the reforms the government are proposing
are piecemeal and not joined up. There is no evidence of strategy
or cross government thinking or a change in the way that the government
is committed to tackle the long-term problems.
CONSULTATION
Disabled people were prepared to work with this
government to develop policy but this government has deliberately
ignored disabled people working to the social model. Major charities,
run by non-disabled people, which run the institutions that disabled
people want to close, have been closely advising the government
on the new legislation. Talking to non-disabled people on disability
issues is not the way to create a learning government or radical
policy. It is like talking to white "experts" on black
issues, or male "experts" on women's issues.
THE SEVEN
ACTION STEPS
TO INDEPENDENT
LIVING
A Social Model approach would adopt the seven
action steps to independent Living as a template for developing
policy. This has not been done. Below are steps to see what the
government could have done and what they are proposing. Birmingham
City Council has demonstrated that a political body (ie the Council)
can adopt the Social Model and begin to plan and review services
around the seven action steps.
WHAT DISABLED
PEOPLE WERE
LOOKING FOR
The seven steps to Independent Living devised
by Ken and Maggie Davies in the 1970s remain a useful template
for looking at the services required to get people' and keep people'
out of institutions. Below is a description of each step what
the government could do to strengthen policy and practice in this
area and a commentary on what it is proposing.
1. Information
Disabled people need information at the right
time in accessible formats about services, processes and procedures
that promote independent living so they can make good decisions
about their lives. The best information disabled people receive
is still within the voluntary sector. The experience of disabled
people is that there are too many places to go for different bits
of the jigsaw. The government could have announced a duty on Local
Authorities and Health Care Trusts to work together to create
one-stop-shops led by disabled people in the voluntary sector
where all the information they need is contained in one place
with a dedicated phone or minicom line. The government could have
recognised and supported the tremendous work disabled people are
doing in the voluntary sector. They haven't.
2. Peer Support and Advocacy
Often when the information is confusing, disabled
people find it helpful to talk to and learn from other disabled
people. Disabled people may feel more comfortable, or really need
an advocate to work with them when making choices about independent
living. When the system is failing them they may need an advocacy
group to campaign to challenge and change the system. Disabled
people call on the government to create Independent Living Centres
throughout the country and to place a duty on Local Authorities
to develop, fund and support these vital pieces of the jigsaw.
IL Centres are controlled and run by disabled people who are in
the best position to be peer counsellors and effective advocates.
The government should recognise and support, through funding,
BCODP and the National Centre for Independent Living. These are
the expert organisations that government should work with in developing
and implementing this policy.
The government has done little, and understands
even less, the principles of peer support and advocacy. Furthermore
BCODP and NCIL continue to struggle for the level of funding they
need to achieve their mission. 96p in every pound the government
gives to the voluntary sector goes to organisations not controlled
by disabled people. These organisations are impairment-specific
and not based on the Social Model. In return for this funding
these organisations, including those running the institutions
disabled people are against, rubberstamp the government's new
proposals. Until the government accepts the principals of self-help,
self-empowerment, self-representation and accountability disabled
people will be disempowered and discriminated against.
3. Housing
Disabled people need affordable accessible and
safe housing which is not linked to the services they need around
personal assistance. The chronic lack of this kind of housing
in this country means inevitably disabled people and elderly people
will be segregated from their families, and forced into institutions.
The main cause of impairment is age and we are all living longer.
Improvements in our health care will as a consequence create more
people who survive trauma and become disabled people. In 2020
the baby boomers will reach 65 and the number of people with impairments
requiring housing will soar. This country is heading for a major
crisis in housing, pensions and health care. All new housing should
be built to lifetime homes standards. The new legislation does
little if anything to accomplish this and certainly couldn't be
seen as a long-term strategy to avert this crisis. Encouraging
private landlords to make a few adaptations is not enough. The
government should urgently engage in across the board talks with
all concerned, including disabled people, and publish long term
sustainable plans to avert this crisis that disabled people are
already at the sharp end of.
4. Aids and Adaptations
Some disabled people need aids and adaptations
to live independently or to reduce the time that they need personal
support. There should be a duty on Local Authorities and Health
Care Trusts to reduce the waiting time and to simplify and de-"professionalise"
the assessment process. Disabled people should not be means tested
for equipment, which they use to get out of bed or into a house,
or to cook meals without relying on someone else. These basic
needs should be free of charge. There is nothing in the government's
new legislation that tackles this.
5. Personal Assistance
Even with the other steps in place some disabled
people need personal assistance to live independently. This could
be assistance with household tasks, money management, support
in emotional crisis, or help with childcare. Direct payments which
mean that disabled people can hire, direct and fire their own
assistants are vital, however there has been little funding to
promote and market this service. Independent Living Centres pro
rata throughout the country, could develop these services. Disabled
people in sheltered housing or residential care homes should have
choice and control over who undresses them, what time they go
to bed etc. There should be a marked increase in the rate of pay
for Personal Assistants working within the current direct payments
schemes, to reflect the importance and responsibility of the job.
Every disabled person currently living in residential care should
be offered the opportunity and the resources to return to the
community. The new Bill does not address these concerns in any
way whatsoever.
6. Transport
The timescales for trains to be accessible is
too long. There are no plans to make the Underground stations
accessible in this Bill. The government's taxi policy should be
extended to private hire companies, to make all new private hire
vehicles accessible by law. This could be easily and cheaply done
and would offer greater choice for disabled people in all areas.
A Taxicard option should be compared to Ring and Ride/Dial a Ride
services, it may be cheaper and more convenient for disabled people
.
7. Access to the environment
Disabled people need to have access to the environment;
both the built environment and accessible information so they
can achieve full participation and equality. The DDA of 95 and
the new proposals that this government is bringing in seem to
address this, except that without giving the legislation real
teeth, little is going to changed and certainly not at the pace
that disabled people want and need. Less than 30% of Local Authority
buildings are accessible despite the DDA law being on the statute
book for eight years. The key problem is that individual disabled
people have to bring and prove the charge against well-organised
and well-briefed opposition. Disabled people have called for legislation
so that disabled people can bring class action suits against those
that are still breaking the law. This would then act as a substantial
deterrent to non-compliance and maybe increase the pace of change.
Lindsay Carter
March 2004
| 
