APPENDIX 20
Memorandum by the Terrence Higgins Trust
and the National Aids Trust
Thank you for the opportunity for us to provide the
Inquiry with our views on issues of relevance to the Pilot of
the Single Gateway.
About us
The Terrence Higgins Trust is a registered charity
providing health education to minimise the transmission of HIV,
as well as a range of advice and support services for people living
with HIV/AIDS, as well as their relatives and carers. Last year,
the Trust's Welfare Rights Service responded to nearly 5,000 Enquiries
from individuals.
The National AIDS Trust is a registered charity established
with the support of the Department of Health with a remit to act
as a UK-wide development agency for voluntary sector responses
to HIV. The Trust aims to provide leadership in development of
HIV/AIDS public policy throughout the UK.
Together we represent substantial experience in assessing
the real life impacts of the current welfare system on people
with HIV/AIDS. We welcome the Government's broad strategy to help
people with disabilities into work through a range of initiatives.
We note that the Government will be hoping to save £750,000
per annum through their benefit reform proposals. We urge the
Government to invest these savings in improved support services
for people with disabilities and programmes targeted at helping
people with disabilities back into work.
Pilots for the "Single Work-focused Gateway"
to the Benefits System
We support in principle the proposal for a single
gateway interview for new social security claimants. Properly
trained personal advisers potentially may result in a significantly
better quality service for people with disabilities. However,
the proposal risks failure if it is not well resourced and handled
sensitively.
Scope and objectives of Pilots—assessment
of costs/ benefits of compulsory interviews
We recommend that the Pilots consider not only how
best to operate a compulsory interview system but also whether
the net benefits to be gained from a system premised on initial
compulsory interviews outweighs detriments, both from the perspective
of claimants and of the benefits agencies. We recommend that the
Pilots incorporate the capacity to consider whether the Gateway
system might operate more effectively with an initial focus on
voluntary interviews but with the capacity at a later stage to
resort to compulsory interviews in defined exceptional circumstances.
We oppose the use of compulsory interviews with advisers
as being the starting point for entry to the Single Gateway. We
recommend a system in which initial interviews are voluntary.
Our experience is that interviews are inherently more likely to
be productive where they are attended willingly by the interviewee.
Claimants will potentially be alienated by a system which is perceived
to involve an element of compulsion from the initial entry stage.
Claimants are most likely to be receptive to advice about work
opportunities in a voluntary interview context.
There is an inherent problem is having an interview
to explore a person's capacity for work at the same time as a
person is applying for a disability allowance. For many people
the act of applying for such a payment is associated with a traumatic
period in their lives. The decision to apply for such benefits
is rarely taken lightly. Therefore rather than being helpful to
see a personal advisor at this time it could prove to be extremely
upsetting and confusing for the client.
Incentives for participation in voluntary interviews
could be investigated rather than building a model based on compulsion.
Consideration should be given to resourcing free, optional, professionally
run resource centres which may result in far greater numbers of
people with disabilities getting back to work than a scheme based
on compulsion.
Coverage—training needs and communication
systems
Ongoing training of registration staff must be made
a high priority. Under the proposals, these staff will be required
to make the crucial decision on whether to exempt claimants from
referral to an advice interview. This is a key stage in the process,
and if handled insensitively could result in serious injustice
for claimants.
Some form of accreditation should be considered both
of registration staff and advisors. Specific training is required
on disability awareness issues including the nature of fluctuating
health conditions such as HIV, the use of appropriate language,
social and psychological aspects of disability, discrimination,
confidentiality and the interrelation of physical and mental health
issues.
The scope of the Pilots should include development
of communication systems which maximise the capacity of the system
to meet the needs of people seeking to access benefits or support.
We welcome the notion that as many services as possible are intended
to be co-located. It is imperative however that sign posting be
made very clear to ensure that clients are fully aware of what
services are available to them.
Culturally appropriate information needs to be provided.
Evaluation of the pilots needs to not only assess people's experiences
of services which they accessed through the Single Gateway, but
also whether the information provided to them was sufficient and
appropriate to enable access to the full range of benefits and
entitlements available. This should not only include information
available at the Gateway office or through the call centre but
also generally in the community and media.
Quality issues—privacy and data protection
Pilots provide an excellent opportunity to develop
models incorporating high standards of best practice. As HIV/AIDS
organisations, we have a particular concern about the capacity
of the Gateway to guarantee privacy. Pilots need to look at how
stringent privacy requirements can be met in practice. This will
incorporate applying the principles of the Data Protection Act
to all aspects of the Gateway's operations, and development of
very specific guidelines ensuring information is only shared where
there is a demonstrated need to know on the part of the relevant
service, benefit agency or welfare provider.
We are concerned that the voluntary, private sector
and statutory agencies involved are likely to have varied privacy
standards in relation to data collection. Claimants are likely
to be highly suspicious in disclosing sensitive personal information
to organisations with which they are unfamiliar or which have
private sector operations. Stringent confidentiality and privacy
standards need to apply consistently to all participating agencies.
To generate trust and confidence in the system, claimants need
to be provided with clear information about how their privacy
and confidentiality will be guaranteed.
Evaluation of Pilots
We recommend that the evaluation process include
people currently in receipt of benefits from a range of disability
backgrounds including people with HIV. Disability organisations
would welcome the opportunity to comment on a draft evaluation
protocol prior to its implementation. The evaluation should incorporate
capacity to comment and assess the practical and psychological
impact of a system based on compulsion rather than voluntary interviews.
We would be happy to provide further information
in relation to any of the above matters if it would be of further
assistance to the Committee.
John Godwin
Head of Policy Development
National AIDS Trust
Andrew Little
Employment Projects Development Officer
Terrence Higgins Trust
5 May 1999
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