1. Life, not numbers … The story so far… Rupy Kaur NUS Disabled Students’ Officer

2. 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)

3. 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

4. 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

5. 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

6. How was the report researched? Enough quantitative data collated by other organisations for disabled people NUS focus on qualitative research focus on students’ experiences using in-depth interviews – users’ views on the current system and how they would like to see it improved

7. 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!

8. 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

9. 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

10. Steering group From a steering group we decided to focus on two of the recommendations from the report To establish a National Advocacy Service To carry on campaigning for portability of care packages

11. 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.

12. National Advocacy Service – different to Disability Support Services? Yes Unbiased as not associated with University Students may have several options when choosing a course and should not be pressured by any institution

13. 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 knowledge Not just advice but advocacy

14. What would the service look like? Website – ‘Know your Rights’ Signpost – telephone/email Advocacy

15. The Big Society!!!!!!!!!

16. ‘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.

17. Portability of care packages Skill Keeping a close eye on bills Longer-term aim Links to other issues e.g. employment Building relationships with other organisations and trade unions for one big campaign Make your life as a social worker easier

18. Questions… Rupy Kaur – NUS Disabled Students’ Officer Rupy.kaur@nus.org.uk