Life, not numbers …

The story so far…

Rupy KaurNUS Disabled Students’ Officer

Personal Care Packages

• The services that local authorities provide to disabled people who need assistance

A care package can consist of:• Equipment and the provision of personal

assistants to provide non-medical care• The funding to purchase such services (direct

payments)

The current system and its flaws• Fragmented, complex and bureaucratic• Exploits disabled students by relying on a system of

assessment that allocates personal care support• Lack of portability preventing students from moving

freely to achieve their potential breach of human rights

• It causes choices about education to be made on the bases of accessibility and financial concerns

• ‘Confusion’ about responsibility

Background to the Personal Care Campaign

• Research for ‘Life, not numbers,’ started February 2009.

• March 2010 a motion was passed to carry out a Personal Care Campaign

Research title became ‘Life, not numbers’Reasons:• Assessments bureaucratic, intrusive and patronising e.g. care

assessed on how many times a person uses the toilet and for how long

• Personal care users want to enjoy all aspects of university life • Still multiple barriers to overcome before this aim can become a

reality

Life, not numbers

How was the report researched?

• Enough quantitative data collated by other organisations for disabled people

• NUS focus on qualitative research focus on students’ experiencesusing in-depth interviews – users’ views on

the current system and how they would like to see it improved

Quantitative data showed…

• 10 million disabled people in the UK (the Department for Culture, Media and Sports 2010)

• In 2008/09 there were 86,000 disabled people receiving direct payments in England and 3,017 in Scotland

• 95 disabled students using personal care packages in higher education in 2008/09 (Higher Education Statistics Agency [HESA]) – obviously incorrect!

Qualitative data

• 13 interviews – allowed for in-depth case studies

• Data saturation was reached• The responses were discussed in the

light of other research to ensure a balanced argument was presented

What students need…

• A National Advocacy Service • Portable care packages• Clearer and more widely available advice, information

and guidance about care packages• Further personalisation in the provision of care

packages giving disabled students more choice and control over the services they receive

• Universities, local government, health authorities and government must work together to find solutions

Steering group

From a steering group we decided to focus on two of the recommendations from the reportTo establish a National Advocacy Service To carry on campaigning for portability of

care packages

National Advocacy Service • To expand current advocacy and advice services to include

disabled students• A service to assist disabled students to access their entitlement

• This is vital due to:

• Lack of IAG• Reduce anxiety and stress • Removes burden off student• Specialist knowledge – as far as we are aware there is no other

service like this • Skills helpline• Other organisational support – including OIA and evidence to

show that there is a gap.

National Advocacy Service – different to Disability Support Services?

YesUnbiased as not associated with

University Students may have several options

when choosing a course and should not be pressured by any institution

National Advocacy Service – different to Citizens Advice Bureau?

This would be a national service and the service user would only have to go to one port rather than different CAB’s

More direct and specialised knowledgeNot just advice but advocacy

What would the service look like?

Website – ‘Know your Rights’ Signpost – telephone/email Advocacy

The Big Society!!!!!!!!!

‘Life not numbers’ - Petition

http://www.ipetitions.com/petition/national-advocacy-service/

The above petition calls for a National Advocacy Service for which disabled students have called for in the ‘Life not numbers’ report. Please take time to read and sign the petition as your support is crucial in helping us win this argument. Thank you.

Portability of care packages

Skill Keeping a close eye on billsLonger-term aimLinks to other issues e.g. employmentBuilding relationships with other

organisations and trade unions for one big campaign

Make your life as a social worker easier

Questions…

Rupy Kaur – NUS Disabled Students’ Officer

Rupy.kaur@nus.org.uk