May 2003 - Ref 553
Direct payments for young disabled people
The Carers
and Disabled Children Act 2000 extended access to direct payments to
16- and 17-year-old disabled young people. A project carried out at
the Norah Fry Research Centre, University of Bristol, sought to
collate the work going on in this area; to highlight the main issues
facing young disabled people who would like to access direct payments;
and to produce a resource with and for young disabled people to
promote take-up. Key findings were:
- The extension of direct payments to 16- and 17-year-olds aims to
provide opportunities for young disabled people to increase their
independence and choice.
- Some young disabled people saw direct payments as a potentially
significant means to achieving greater autonomy and control but they
were also concerned about the obstacles they would confront in trying
to access them.
- There are a number of potential barriers to the successful take-up
of direct payments for young disabled people. These include young
people's lack of knowledge about direct payments.
- Social services departments have concerns about how well young
disabled people will manage direct payments.
- One of the main ways in which young disabled people might use
direct payments is to purchase personal assistance. This raises issues
about how the relationship between young disabled people and their
personal assistants would be managed.
Background
A 'direct payment' is money given to people assessed as requiring
certain kinds of support. It is paid by Social Services Departments.
Direct Payments have been taken up by disabled adults as a way of
buying individualised support services. Typically they have been used
to get support at home and/or to pay for a support worker (often
called a personal assistant).
The Carers and Disabled Children Act 2000 extended access to direct
payments to 16- and 17-year-old disabled young people from April 2001.
More detailed information about how direct payments work can be
found elsewhere - for example, at www.ncil.org.uk (the website of the
National Centre for Independent Living) and
www.viauk.org (the website
of Values Into Action). Box 1 gives examples of existing initiatives
in this area.
Box 1: Existing initiatives
The first part of the project involved finding out what other
organisations were doing in relation to the extension of direct
payments to 16- and 17-year-olds. The following groups and individuals
are examples of relevant initiatives around direct payments and personal assistance specifically for young disabled people.
In an attempt to develop direct payments for parents of disabled
children and disabled young people a Norwich Social Services project
consulted with 16- to 19-year-olds. The young people talked about
their desire to have access to the full range of social and
educational opportunities as their non-disabled peers and were
enthusiastic about the opportunities created by direct payments.
To find out more: contact Sue Norgrove, Development Officer,
Children with Disabilities Team, Social Services Dept., 31 Norwich
Street, Dereham, Norfolk NR19 1DH, tel: 01362 694711, email:
sue.norgrove.socs@norfolk.gov.uk.
- West of England Centre for Inclusive Living (WECIL)
WECIL have been running a Personal Assistant Support Scheme for
young disabled people. The project - 'Youth PASS' - aimed to enable
young disabled people to gain experience of using personal assistance
in a one-to-one relationship which is under their control and
direction. PAs were recruited, trained and supervised by Youth PASS
staff to carry out activities of the young person's choosing both
inside and outside the home. A video and Good Practice Guide for
providing personal assistance to young disabled people are available
from WECIL.
To find out more: contact Youth PASS, WECIL, Leinster Avenue,
Bristol, BS4 1AR, tel./minicom: 0117 903 8900, email
reception@wecil-ltd.demon.co.uk.
Swindon People First have been researching issues about direct
payments for people with learning difficulties of all ages and have
produced an accessible, illustrated pack about direct payments and
what it means to employ a personal assistant.
To find out more: Journey to independence: How to run your life
with direct payments is published by the British Institute for
Learning Disabilities (price £25 plus £2.50 p&p) and is available from Plymbridge Distributors, tel: 01752 202301 or email
orders@plymbridge.com.
- Essex County Council Social Services Department
The Department has produced a short guide to Direct Payments for
16- and 17-year-old disabled people.
To find out more: The guide is available free in a number of
formats from tel: 01245 434134; fax: 01245 268580; textphone: 01245 434090.
- Greater Manchester Coalition of Disabled People: Young Disabled
People's Forum
The Forum has been involved in producing an independent living
skills manual and video, Moving on: A training manual for young
disabled people, which is also available in Braille, audio tape and
large print formats. Whilst not explicitly about direct payments it is
a helpful resource in the area of independent living for young
disabled people.
To find out more: about the Young Disabled People's Forum or about
Independent Living and Disability Equality, tel: 0161 273 8141 or
email gmcdp@globalnet.co.uk.
Empower 2001 is a London-based organisation of young disabled and
non-disabled people who run training weekends for young people
interested in learning more about using personal assistants or being a
personal assistant.
To find out more: email
hq@empower2001.org.uk or look at the
website www.empower2001.org.uk.
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For young disabled people, direct payments are a new way to access
more independent living and pursue lives with the same opportunities
as their non-disabled peers. But they raise some potentially
problematic issues, for example:
- how to promote direct payments to young disabled people;
- how to support young disabled people to access direct payments
and to manage a personal assistant (PA), if they choose to have one;
- how to deal with the administrative,
financial and legal responsibilities of being a direct payments
recipient;
- how to respond to questions or concerns that parents of young
disabled people might have.
Supporting young disabled people to manage a direct payment
Being a direct payment recipient involves a number of
responsibilities. A PA naturally acquires the rights of an employee
and there have been concerns about the legality of a 16-/17-year-old
taking on the contractual and statutory responsibilities of an
employer. However, as with some people with learning difficulties, a
young person need not assume responsibility for these matters but
instead can arrange for an independent living scheme, for example, to
organise this for them. NCIL have said that one insurance company has
agreed to underwrite Employers Liability Insurance for 16-/17-year-old
young adults (who are in receipt of direct payments and who register
as employers).
The views of young disabled people
As part of the project, David Abbott, from the Norah Fry Research
Centre, University of Bristol, and April Bird, a freelance researcher,
organised a group of young disabled people to meet to produce a
resource about direct payments for young disabled people (see Box 2).
| Box 2: Getting information to young disabled people about direct
payments The group of young people involved with the project decided to
create a magazine with an audio version on CD aimed at young disabled
people, with a range of styles and formatting and quite a lot of
personal experiences, views and stories. They wanted to get the
balance right between saying how good they thought direct payments
could be and the difficulties that young disabled people might face in
actually accessing them.
In order to produce the material for the magazine the young people
used disposable cameras to take pictures of their lives - things they
liked doing with other people, with their PAs, and the kinds of
assistance that their PAs routinely gave them. Group members wrote
about their own experiences and interviewed each other to find out
more. They were keen to include a problem page and also sources of
advice, support and information.
The result of this work is a one-off magazine called, 'Living it
Up!'. For details of how to get hold of this and the CD that
accompanies it see 'How to get further information'.
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Fifteen young disabled people and PAs came together from across
England to meet in London over two Saturdays. Only two members of the
group were in receipt of direct payments. Several others were in the
process of applying; they had been finding this difficult as there had
been many delays and obstacles.
The group felt that the following messages and themes were the key
ones which needed to be communicated in order to promote direct
payments to young disabled people:
- Direct payments can be a good way of
achieving more independence, choice, freedom and control. They can
be instrumental in providing an important alternative to residential
options.
- Direct payments can change your relationship with your parents -
make you less reliant on them and even have a better relationship with
them. It doesn't mean however that you have to leave home - unless you
want to.
- Direct payments aren't necessarily easy to get and there are
anxieties about the process of applying. The group had concerns about
needs assessment and whether their own views on what their needs were
would be taken seriously. They were also worried that social services
departments wouldn't know about it or wouldn't adopt a helpful
attitude towards a young disabled person enquiring about direct
payments.
- Given the potential barriers it was thought to be crucial to
stress that young people would not be alone with the decisions and
responsibilities relating to applying for and getting a direct
payment. Sources of information, advice and support are really
important. Young disabled people could talk to other young people who
have already got direct payments or they could talk to older disabled
people who could give mentoring support.
- Having a personal assistant could be life-changing in all kinds
of ways. It was seen as a quite unique kind of relationship,
characterised by gains in independence and especially getting access
to a better social life. However, the relationships could be stressful
and intense and it could also be very hard to find PAs, especially the
'right' PAs. Common problems were that it was difficult to find and
'vet' PAs; that PAs could come and go from the life of a disabled
young person; that it took a long time to train them well; that the
boundaries between employer and friend could sometimes be confusing.
One young disabled, Muslim man said that it was hard to find a PA who
was sensitive to his religious and cultural practice.
The views of parents
It is very likely that a young person will need the active support
of their parent or carer in order to access a direct payment
successfully. Parents may need to be assured that direct payments do
not automatically mean that their son or daughter will want to leave
home but may be used to support them at home and/or at college.
The views of the Project Advisory Group
The project was supported by a Project Advisory Group of parents
and professionals from local authorities, Connexions, Government and
organisations of and for disabled people. The group acknowledged the
difficulties that young disabled people could face in accessing direct
payments and the concerns that parents and professionals might have
about the responsibilities inherent in being a direct payments
recipient. Issues of safety and welfare were raised in relation to the
PA/user relationship. However, the group recommended that the resource
for young disabled people (see Box 2) should primarily focus on what
was potentially positive about direct payments without ignoring the
possible barriers. What was missing was a resource which promoted the
idea behind direct payments.
Advisory Group members were aware that low levels of take-up of
direct payments for young disabled people might be due to the
scepticism of some local authorities. Some of the issues faced by
young disabled people were similar to those faced by adults with
learning difficulties. This group also had to work hard to persuade
local authorities that they could be effective recipients of direct
payments as long as proper support mechanisms were in place.
The Advisory Group also reflected on the particular issues that
would face minority groups within the population of young disabled
people. Would young people from black and minority ethnic backgrounds
find PAs with a similar background or sufficient insight and
sensitivity to any needs or requirements specific to their cultural
background? Similarly, would young disabled gay, lesbians and
bisexuals be able to find PAs who were also gay or who would feel
comfortable with the sexuality of the young disabled person?
About the project
This work was co-ordinated by David Abbott at the Norah Fry
Research Centre, University of Bristol, with help from April Bird
(work with young disabled people), Jan Alcoe (design and layout of
'Living it Up!') and Icon-Tact, Bristol (CD). The project was also
supported by a Project Advisory Group of parents and professionals
from local authorities, Connexions, Government and organisations of
and for disabled people.
Special thanks to the young people who took part in this work:
Shabaaz Mohammed, Dave Littman, Anna Morgan, Lucy Mason, Tina Stark,
Jade Sempare, Tom Fagan, Maresa MacKeith, Letitia Shaw, Katie Caryer,
Lucia Bellini, Wendy Greenwell, Luke Jameson.
How to get further information
'Living it Up!' is available free of charge while stocks last as a
printed magazine and a CD from the Norah Fry Research Centre at 3
Priory Road, Bristol BS8 1TX, Tel: 0117 923 8137, minicom: 0117 928
8856, Fax: 0117 946 6553. The magazine will also appear on the Norah
Fry website: www.bris.ac.uk/Depts/NorahFry/.
You can contact David Abbott at the Norah Fry Research Centre at
the address above and by email:
d.abbott@bristol.ac.uk.
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