Information
Personal Care at University
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Skill: National Bureau for Students with Disabilities
Chief Executive: Benet Middleton
Unit 3, Floor 3, Radisson Court, 219 Long Lane, London SE1
4PR
Email: skill@skill.org.uk
Website: www.skill.org.uk
Tel: 020 7450 0620
Fax: 020 7450 0650
Information Service opening hours:
Tuesdays 11.30am-1.30pm and Thursdays 1.30pm-3.30pm
Tel: 0800 328 5050 or Textphone: 18001 0800 328 5050
Email: info@skill.org.uk
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(2397897) and a registered charity
(801971), also registered in Scotland
(SC039212)
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Personal Care at University
Contents
Introduction .................................................................................. 2
1. What are personal care packages? ...................................... 3
2. Who is responsible for providing personal care? .................. 4
3. Personal care packages: The process .................................. 5
4. Support in negotiating personal care .................................... 7
5. Who funds study-related support? ........................................ 8
6. Different approaches to personal and study related
assistance ................................................................................... 9
7. Institutional approaches ...................................................... 10
8. Individual approaches ......................................................... 11
9. Other sources of funding ..................................................... 12
10. What are my rights? .......................................................... 14
11. Case studies ..................................................................... 15
12. Useful contacts ................................................................. 17
Introduction
This guide looks at how to get the right personal assistance if you
are a disabled student thinking about going to University. The
term ‘University’ will be used to refer to universities and other
institutions offering higher education courses. The booklet will
look at some of the different ways in which you can access
personal care while you are at University. This guide also
contains a list of useful publications and contacts.
We would also like to thank the NUS for their input and
comments into this guide it has proved invaluable.
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Assistance at University
When thinking about assistance it might be helpful to think of:
 Personal assistance: Assistance that you might get even when
you are not in University
 Study-related support: Support directly related to your studies.

Personal assistance
Personal assistance or personal care is the practical help and
support you need for your daily life, even when you are not at
university. If you are a disabled student, getting the right kind of
assistance may be essential if you want to do a higher education
course. Organising your personal assistance when you go to
university can be complicated so you should start making
arrangements as far in advance as possible. Twelve to fifteen
months before you plan to go to university is a good time to start
making arrangements. If you have less time, don’t worry it’s still
possible to get the right support but you will need to take some
proactive steps.
Study-related support
This is the support you need to attend your course, as a direct
result of your disability, for example readers, sign language
interpreters, note takers and other non-medical assistants you
may need to benefit fully from your course.
1. What are personal care packages?
Personal care packages are the services and equipment that
local authorities provide for disabled people including students
who need care.
When a disabled person requires personal care, the local social
services department carries out a health and social care
assessment, which should focus on your individual needs. This is
called an ‘Assessment of Need.’
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Health and social services teams then put together a personal
care package, which may include healthcare, equipment (a hoist
for example) or personal assistance.
Personal care packages are reviewed initially after 3 months and
after that annually. They are funded via a ‘personal budget’.
Personal assistants
Personal assistants are either employed by the local authority or
by you through a ‘Direct payment’ (see page 6) Personal
assistants carry out the care component of the package, which
may include:
 domestic duties such as cooking, cleaning and shopping;
 personal hygiene;
 transport;
 basic medical needs such as injections.
2. Who is responsible for providing personal
care?
When you go to University the responsibility to fund your personal
care package rests with the local authority where you are
‘ordinarily resident.’ This means deciding where you feel more
settled and where you have the strongest ties. For many students
this is the local authority they are coming from. This might be
because they return there during the holidays, have their parents,
friends and family based there and plan to return after
graduating.
However if you move to the local authority area in which the
university is located for settled purposes and have no intention of
permanently returning to your previous local authority then this
may mean changing where you are ‘ordinarily resident’ to the
university’s local authority.
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The starting presumption is that your personal care is funded by
the local authority you are coming from. If however you wish to
settle in the new local authority area (perhaps you wish to stay
there after graduation) then you will need to contact them.
It can be complicated transferring between two local authorities
and you may need to get in contact with Skill and other
organisations to provide you with all the information you need.
The Department of Health have also produced very clear
guidance on the responsibilities of local authorities and funding
personal care for students. This is called:
‘ORDINARY RESIDENCE: Guidance on the identification of the
ordinary residence of people in need of community care services,
England (March 2010) www.dh.gov.uk.
3. Personal care packages: The process
You may already have a personal care package in place,
however going to University may mean that you need to go
through the process again because of the change in
circumstances.
‘Assessment of Need’
At the assessment, a specialist - often an occupational therapist looks at your individual needs and discusses them with you. This
is so that the right support can be provided. Services you may
need can include healthcare, equipment or support from a
personal assistant.
Care plans
The social services team will then put together a package of
support. They will discuss this with you and write a care plan.
This may include services from both private and voluntary
organisations.
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Being reassessed
The types of support you need may change over time and so
your care plan should be reviewed regularly. An initial review
should be carried out after three months, and then once every
year. If you feel that your needs have changed you can also
contact social services for a reassessment.
Personal Budgets
When you have been assessed you will receive an allocation of
funding, this money is known as a personal budget. The personal
budget is used to buy (commission) your package and you have
three options.
You can:
 have the budget paid directly to yourself (see direct payment
below);
 leave the responsibility of commissioning and paying for
services with your local authority;
 have a combination of both of the above.
Direct payments
You can decide to have your personal budget paid directly to
yourself. This enables you to buy the services and equipment
that has been agreed in your care plan. This is sometimes called
‘self directed support.’
Direct payments are made directly into your bank, building
society, Post Office or National Savings account. If you decide to
have direct payments you will also take on the responsibility of
employing people and dealing with tax and national insurance.
You can find out more about employing people using direct
payments from Independent Living Alternatives
www.ilanet.co.uk.
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4. Support in negotiating personal care
It can be quite complicated negotiating your personal care
package. However you can get lots of support, information and
guidance from various different sources.
Disability Co-ordinator
Every university has at least one member of staff whose job it is
to advise disabled students. Their title is normally Disability Coordinator or Disabled Students’ Advisor and their contact details
are usually on their website, or in their prospectus. You can also
search for their contact details on Skill’s online Into Higher
Education Database www.skill.org.uk/into_hefe/. It is a good
idea to contact this person before you apply, to discuss what your
needs are likely to be and what kinds of support the university
can provide.
The Disability co-ordinator should be able to help with an
assessment of your study support needs and may be able to
negotiate funding with your awarding authority (such as Student
Finance England) and social services. They will certainly be able
to help you with questions about Disabled Students’ Allowances
(DSA) and may also be able to help you find and manage your
assistants.
Skill
We have a free helpline dedicated to providing information and
advice for disabled people in or thinking about further and higher
education as well as volunteering and work. Our contact details
are at the end of this guide.
National Union of Students (NUS)
There may be a disabled students’ officer at your University’s
Students’ Union who can help you access support. You can also
contact the NUS Disabled Students’ campaign.
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5. Who funds study-related support?
The study-related support you need as a disabled student is
usually funded by Disabled Students’ Allowances (DSAs). DSAs
do not pay for:
 Personal assistance costs a disabled person would have
whether or not they were a student. For more information on
how this is funded see section 1
 Study costs that a student might have whether or not they are
disabled.
There are four allowances under DSAs:
Specialist equipment allowance
This is for computers, digital recorders and other equipment. It
can also pay for training on how to use equipment, help in setting
it up or insurance. In 2010/11, the maximum amount was £5,161
(for full-time and part-time students) for the whole course.
Non-medical helper’s allowance
This is for note takers, sign language interpreters, readers and
other non-medical helpers. In 2010/11 the maximum amount for
non medical helper support was £20,520 (£15,390 on a pro-rata
basis for part-time students) per year.
General allowance
This is for extra books, photocopying and tapes, Braille paper or
can be used to top up the specialist equipment and non-medical
helper allowances. In 2010/11 the maximum amount you can
receive was £1,724 (£1,293 on a pro-rata basis for part-time) per
year.
Travel allowance
This is to finance extra travel costs incurred because of your
disability. You will not have all your travel costs paid but, for
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example, if you need a taxi to get to the campus while most other
students use public transport, you might receive the difference
between the two fares.
For more information about DSAs read our information booklet
Applying for Disabled Students’ Allowances.
6. Different approaches to personal and study
related assistance
Provision for personal and study-related assistance at university
has developed in a variety of ways. The two main approaches
can be described as institutional and individual. In the institutional
approach, personal and/or study-related assistance is coordinated by the university. In the individual approach, the
personal and/or study-related assistance is co-ordinated by you.
It is up to you to decide whether you ask your university to do this
for you or whether you employ your assistant(s) yourself.
However you should ensure that you are fully informed of all the
pros and cons of being an employer before you do this.
However, if you choose to organise your personal assistance, it is
best to draw up a work agreement with the support worker(s)
concerned. This agreement should outline the terms and
conditions for your support worker and will cover pay, hours,
duties, etc. Having a clear work agreement from the outset
should help avoid any misunderstandings at a later date. Having
a work agreement is vital if you are employing your own personal
assistants.
With study-related assistance, you and the support worker should
be clear about the support role and responsibilities, the rates of
pay, and the payment methods.
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7. Institutional approaches
Register of support workers
Many universities will have a register of support workers, such as
qualified dyslexia tutors, communication support workers and/or
lists of students or staff who may or may not be fully trained. They
can put you in touch with potential support workers and you may
be able to negotiate with the university about who should employ
the support worker. The university can also provide guidance on
good practice, for example, forms for you to record the number of
hours your assistants work, sample invoice forms and guidance
on drawing up work agreements.
Specialist agencies
Universities may be able to put you in touch with specialist
agencies that employ workers such as dyslexia tutors, note
takers, sign language interpreters. Organisations such as the
Council for the Advancement of Communication with Deaf People
(CACDP) also keep registers of qualified communication support
workers. Their contact details are in Part 6.
Universities with adapted accommodation
Some universities have adapted or purpose-built accessible
accommodation and are able to provide facilities, rooms and
assistants. This may include night and day care, full board and
transport. They will probably have staff in charge of assistance
and specialist nursing back-up. Funding for personal assistance
would come from your local social services and they would
probably pay the institution directly.
Universities with volunteer schemes
Some universities recruit volunteers who can provide personal
care support to disabled students. Volunteers are usually
students or recent graduates. The university will arrange their
accommodation and give them an allowance. The funding for this
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support will probably come from your local social services and
from your awarding authority if the volunteers also assist you with
your study-support needs.
8. Individual approaches
Community Service Volunteers (CSV)
CSV is the national volunteer agency that recruits full-time
volunteers to help disabled people live independently in the
community. CSV volunteers are aged between 16 and 35 and
work for four to 12 months, receiving accommodation, food,
pocket money and travel expenses in return. CSVs are often
recent graduates or are planning to go to university, so they have
an interest in or experience of the university environment. A
member of staff at the university will act as a supervisor for the
volunteers. The funding for CSVs will come from social services
and from the Disabled Students’ Allowances if the volunteers also
help with your study-support needs.
Community Nursing Service
The local community nursing service will provide help for disabled
people who are temporarily resident in their area. If you attend a
university away from home you are entitled to apply for regular
help from your local service. The service is available across the
UK. Even if you do not choose to receive regular help from the
service you may find it useful to access it from time to time, for
example if your regular assistant has time off. Your GP or local
health centre will be able to give you more information about the
service and any costs involved.
Private agencies
If you are organising your own support, private agencies can be
useful to manage the assistants, and to remove you from the
responsibility of being the employer. However, for personal
assistance, you should determine the funding you have available
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to you as private agencies can be expensive. Also agency staff
providing personal assistance may not have experience of
working with people in an academic environment. However, they
may be helpful to fill gaps, for instance if your assistant becomes
ill or needs some time off. The university may be able to
recommend a local agency that students have used in the past.
Study-related assistance, for example Braille transcription,
dyslexia support, and note taking, may also be available through
private agencies, which specialise in academic support. Your
university or the centre that carried out your needs assessment
may be able to recommend a local agency that students have
used in the past.
Funding for private agencies should come from your local social
services and from the Disabled Students’ Allowances if you
receive study-support assistance at the university.
9. Other sources of funding
You may wish to look into other forms of funding to support you at
University as well as explore different opportunities that may be
available from your local authority.
Housing allowances and additional rooms for carers
From April 2011, disabled people claiming housing benefit will be
entitled to funding for an extra bedroom for a carer. Contact your
local authority for details.
The Right to Control
A number of local authorities across England are piloting the
‘Right to Control’. These local authorities are known as
‘Trailblazers’ and are working toward a more personalised
agenda. Funding is drawn together from a number of different
sources and paid as a direct payment to the disabled person or
someone working on their behalf. The different sources include:
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• adult social care: personal budgets
• Supporting People: a programme of housing-related support
to help people, including those who need personal or medical
care, to live as independently as possible in the community
• Disabled Facilities Grant: a local council grant to help
towards the cost of adapting your home to enable you to
continue to live there
• Access to Work: if you are a student who is also in
employment and need support at work
• Community equipment services.
At present Disabled Students’ Allowances (DSAs) has not been
included in the list above, although this is something that may
change in the future.
Contact your local authority to find out if they are part of the Right
to Control or visit the Office for Disability Issues website. Contact
details are at the end of this guide.
Additional funding
Students who have expenses for which they cannot get funding
from any other source may apply to charitable trusts. For
example the Snowdon Award Scheme provides grants directly to
disabled students to help cover costs that are not met by
statutory funding. For more information see our information
booklet Funding from charitable trusts.
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10. What are my rights?
It is a good idea to know your rights when organising personal
care and support as well as the legal duties and responsibilities
that organisations such as Local Authorities and Universities
have.
The Equality Act 2010
The Equality Act came into force in October 2010 and replaced
the Disability Discrimination Act. It means that it is illegal to
discriminate against disabled people both directly, such as
rejecting a University applicant because of their disability or
indirectly, such as having a policy which inadvertently
discriminates. Under the act organisations such as Universities
must make ‘reasonable adjustments’ for disabled students. This
might be adapting a room to meet your needs or allowing
flexibility in your timetable.
The UN Convention on the Rights of Persons with
Disabilities
The UK ratified the United Nation Convention on the Rights of
Persons with Disabilities in June 2009. Article 24 sets out how the
Government must:
‘ensure the education system at all levels is inclusive and geared
towards supporting disabled people to achieve their full potential
and participate equally in society.’
Article 19 sets out how the Government must ensure that:
 disabled people have the right to choose where they live and
who they live with – no disabled person should be unlawfully
forced into a particular living arrangement
 disabled people have access to a wide range of support
services (at home and in the community) including personal
assistance to prevent isolation and support inclusion.
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Getting help
For more information and guidance you can contact Skill. It is
also a good idea to speak to the Disability Coordinator at the
University you are at or applying to. It is possible that they have
dealt with similar enquiries before and may be able to help. You
may also wish to speak to the NUS Disability Officer at the
University. They may have useful information.
Legal Advice
If you are unable to go the university of your choice because you
have difficulties arranging your care packages you may want to
seek legal advice.
The Equality and Human Rights Commission can give you
information and advice on your rights.
The Disability Law Service offer free legal advice for disabled
people.
Contact details of these organisations are available at the end of
this booklet.
11. Case studies
Catherine
I have congenital muscular dystrophy, which means I use a
powered wheelchair to get around. I also need help with most
day-to-day tasks, including washing, dressing, preparing meals
and accompanying to lectures and seminars. I also need help
overcoming the physical barriers of my course, so I get
assistance with things like note taking and collecting books from
the library.
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I decided to go to university as it was the obvious next step for
me. I achieved good grades in my A-Levels and the kinds of jobs
I am interested in require a degree. After a lot of thought and
research, I decided to move away from home as the universities
near where I live did not really provide the course I wanted. I also
felt that if I stayed at home, I would miss out a lot on the social
part of university life. However, I was very nervous about this
decision - at home, I had a reliable care package who knew my
needs well and I felt comfortable with. I was also worried about
getting full time care as at home I only had carers come in for my
personal care and my dad did the other things like meals.
Through contact with the Disabilities Advisors at my conditional
university (Lancaster), I was told about Community Service
Volunteers (CSV). The volunteers would live with me on campus
and provide my care for up to a year. Social Services were quite
keen on this idea from a financial point of view, as it was
relatively inexpensive for a 24-hour care package - they would
only have to pay for the volunteers’ accommodation, food and
living costs. However, it still had to be approved at ‘panel’, which
was an anxious wait!
On the whole, I feel that CSV is a great way of providing care. It
allows me the flexibility to be able to decide what I do, rather than
being tied to a schedule of carers coming in and out at certain
times. I also feel I have made friends for life with several of my
volunteers. However, it can be difficult if you don’t gel with a
volunteer – you do spend a lot of time together so it’s important
you get on with them! I would also say it is hard to get used to
having different volunteers every year.
To students considering moving away from home to go to
university, I would say to go for it! It is a huge change and takes a
lot of getting used to, but I now love living away from home and
my new-found independence.
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12. Useful contacts
Community Service Volunteers
237 Pentonville Road, London N1 9NJ
Tel: 020 7278 6601
Fax: 020 7833 0149
E-mail: information@csv.org.uk
Website: www.csv.org.uk
Volunteer Independent Living Schemes for people who need
personal assistance. They have regional offices around England.
Citizen’s Advice Bureau
Website: www.citizensadvice.org.uk
Citizens Advice service helps people resolve their legal, money
and other problems by providing free, independent and
confidential advice.
DirectGov
Website: www.direct.gov.uk
Information on publicly funded services, such as Student
Finance, person care assistance and benefits.
Equality and Human Rights Commission (EHRC)
Freepost RRLL-GHUX-CTRX, Arndale House, Arndale Centre
Manchester M4 3AQ
Telephone: 0845 604 6610
Textphone: 0845 604 6620
Open from Monday to Friday between 8am and 6pm
Email: englandhelpline@equalityhumanrights.com
Website: www.equalityhumanrights.com
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Disability Law Service
39–45 Cavell Street, London E1 2BP
Telephone: 020 7791 9800
Textphone: 020 7791 9801
Email: advice@dls.org.uk
Web: www.dls.org.uk
Free legal advice for disabled people and their families / carers
throughout Britain.
In Control
In Control Support Centre, Carillon House, Chapel Lane, Wythall
West Midlands B47 6JX
Telephone: 0156 482 1650
Email: admin@in-control.org.uk
Website: www.in-control.org.uk
Independent Living Alternatives (ILA)
Trafalgar House, Grenville Place, London NW7 3SA
Telephone: 020 8906 9265
Email: PAServices@ILAnet.co.uk
Website: www.ILAnet.co.uk
Provides information and support to enable people to recruit,
employ, train and manage their own personal assistant.
National Centre for Independent Living
Unit 3.40, Canterbury Court, 1-3 Brixton Road
London SW9 6DE
Tel: 020 7587 1663
Textphone: 020 7587 1177
Fax: 020 7582 2469
E-mail: ncil@ncil.org.uk
Website: www.ncil.org.uk
Provides information about personal assistance and support
schemes. They can put you in contact with the local Independent
Living Scheme or Centre for Independent Living.
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National Union of Students
NUS HQ, 4th Floor, 184-192 Drummond Street
London NW1 3HP
Telephone and Textphone: 0207 380 6600
Website: www.nus.org.uk
Office for Disability Issues (ODI)
Website: www.officefordisability.gov.uk/working/right-tocontrol.php
Information on the right to control including a full list of the
Trailblazer Pilot authorities.
Royal Association for Disability and Rehabilitation (RADAR)
12 City Forum, 250 City Road, London EC1V 8AF
Tel: 020 7250 3222
Textphone: 020 7250 4119
E-mail: radar@radar.org.uk
Website: www.radar.org.uk
Offers information and advice on all aspects of disability,
including personal assistance.
Skill Information Services
Tel: 0800 328 5050
Textphone: 18001 0800 328 5050
E-mail: info@skill.org.uk
Website: www.skill.org.uk
Opening times for national Information Services vary. Please see
our website for details.
Skill’s Information Service can provide information and advice on
post-16 education, training, volunteering and support finding
work.
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The Snowdon Award Scheme
Unit 18, Oakhurst Business Park, Wilberforce Way,
Southwater, West Sussex RH13 9RT
Telephone: 01403 732 899
Email: info@snowdonawardscheme.org.uk
Website: www.snowdonawardscheme.org.uk
Social Services
Social Services are part of the local council. Their address and
numbers can be found in the phone book (under the council
name) or contact your local library or Citizens Advice Bureau.
Updated January 2011
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