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Building human rights into disability policy: lessons from The Equipping Inclusion Studies.

Building human rights into disability policy: lessons from The Equipping Inclusion Studies. Authors: Natasha Layton & Dr Erin Wilson Centre for Health and Social Exclusion (CHASE) Deakin University, Burwood , Vic. March 2011. Overview of presentation.

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Building human rights into disability policy: lessons from The Equipping Inclusion Studies.

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  1. Building human rights into disability policy: lessons from The Equipping Inclusion Studies. Authors: Natasha Layton & Dr Erin Wilson Centre for Health and Social Exclusion (CHASE) Deakin University, Burwood, Vic. March 2011

  2. Overview of presentation • Why is the notion of human rights relevant to Victorians with disabilities? – Don’t we have basic human rights? • How does the UNCRPD focus our practice? I will: • Propose a rights based / social change practice • Present a case study of this approach re Assistive Technology policy

  3. United Nations Convention on the Rights of Persons with Disabilities (enforced 2008) The principles of the present Convention shall be: 1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; 2. Non-discrimination; 3. Full and effective participation and inclusion in society; 4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; 5. Equality of opportunity; 6. Accessibility; 7. Equality between men and women; 8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. (Convention, Article 3).

  4. United Nations Convention on the Rights of Persons with Disabilities Content areas: • Key rights: equality, access, emergencies, justice, freedom from abuse, freedom of expression, privacy, access to information etc • Living independently • Being included in the community • Mobility • Home and family • Education • Health • Employment • Standard of living and income • Political and public life • Cultural life • Recreation, leisure and sport

  5. Is it relevant?Have we fully realised human rights for people with disabilities in Australia?

  6. Indicators of social exclusion – ‘participation poverty’

  7. Health related quality of life (AQoL)(Layton et al 2010) Highest score possible is 1. Lowest score is 0. Data on people with disability from small case study set (Layton et al 2010)

  8. Have we fully realised human rights? Examples from research participants: • Rationing of basic support needs • ‘I give up having washes so I can go out’ • ‘One shopping afternoon to live my life a week’ • Full restriction on life activities • ‘I desperately require a [home] modification… as it is I am virtually housebound’ • ‘I spend a lot of time on my own and get depressed as I cannot go anywhere by myself…’ (Layton et al 2010)

  9. Have we fully realised human rights? NO!

  10. What can we do?Use a rights approach in our practice to create change

  11. Key element of a rights based approach: UNCRPD understanding of ‘disability’ ‘In the Convention, the focus is no longer on a perceived ‘wrongness’ of the person, with the impairment seen as a matter of deficiency or disease. On the contrary, the Convention views disability as a ‘pathology of society’, that is, as the result of the failure of societies to be inclusive and to accommodate individual differences. Societies need to change, not the individual, and the Convention provides a road map for such change.’ (NavanethemPillay, UN High Commissioner for Human Rights, in Office of the Commissioner for Human Rights (2010) Monitoring the Convention on the Rights of Persons with Disabilities. Guidance for Human Rights Monitors.Professional training series No. 17. New York & Geneva: United Nations, p. 05.)

  12. This has key implications for our practice… ‘Thus, monitors should be asking what society has done or not done which is obstructing the full enjoyment of …[persons with disabilities’] rights – not how their physical or mental impairment has affected the enjoyment of their rights.’ Office of the Commissioner for Human Rights (2010) Monitoring the Convention on the Rights of Persons with Disabilities. Guidance for Human Rights Monitors.Professional training series No. 17. New York & Geneva: United Nations, p. 48.)

  13. Key question of social change practice: • ‘What is wrong with society? What social, economic, political and/or environmental conditions need to be changed to facilitate the full enjoyment of all rights by all persons with disabilities?’ Key practice is: • the creation of conditions that allow meaningful participation Office of the Commissioner for Human Rights (2010) Monitoring the Convention on the Rights of Persons with Disabilities. Guidance for Human Rights Monitors.Professional training series No. 17. New York & Geneva: United Nations, p. 09.)

  14. Summary of social change / rights based practice Social change practice focuses on: • Holding society accountable for the quality of life of people with disabilities • Taking action to foster changes in society at all levels, to overcome barriers to the full enjoyment of rights and quality of life.

  15. Social change / human rights practice Requires a focus on barriers in society: policy, programs, attitudes, infrastructure etc. • Monitoring human rights requires us to look at policy – do policies and programs limit rights of people with disabilities? • Intent: Are the policy and program guidelines consistent with UNCRPD? • Implementation arrangements: Are the financial and other arrangements adequate to effectively implement the policy/program?

  16. 1. Intent: Are the policy and program guidelines consistent with UNCRPD? According to UN Convention obligations, States must: • Not limit rights (via policy and programs) • Establish coordination mechanisms within government to facilitate actions across sectors and at different levels (Office of the Commissioner for Human Rights (2010) Monitoring the Convention on the Rights of Persons with Disabilities. Guidance for Human Rights Monitors.Professional training series No. 17. New York & Geneva: United Nations, p. 28, 41)

  17. 2. Implementation: Are the financial and other arrangements adequate to effectively implement the policy/program? According to UN Convention obligations, States must: • Take measures to the maximum of their available resources… • Ensure a minimum essential level of enjoyment of each economic, social and cultural right • Allocate and spend sufficient funds to realize the right in question. (Office of the Commissioner for Human Rights (2010) Monitoring the Convention on the Rights of Persons with Disabilities. Guidance for Human Rights Monitors.Professional training series No. 17. New York & Geneva: United Nations, p. 27-29, 42-43.)

  18. Case study: Review of program policy – Victorian Aids and Equipment Program Aims: • ‘Provide people with a permanent or long-term disability with subsidised aids, equipment, vehicle and home modifications to enhance independence in their home, facilitate community participation and support families and carers in their role.’ (Department of Human Services 2010)

  19. What is Assistive Technology (AT) and why is it important to human rights?

  20. Defining AT • Range of definitions of AT 'AT is an umbrella term for any device or system that allows individuals to perform tasks they would otherwise be unable to do or increases the ease and safety with which tasks can be performed' (WHO 2004, p 10). • 3 broad components: • Device (aids and equipment) • Environmental interventions (home and community modifications) • Personal care (paid or unpaid) • Recent research is proposing the notion of an ‘AT solution’ that recognises the combined interaction of these three elements (Assistive Technology Collaboration n.d; Layton et al 2010)

  21. Why is AT important to human rights? 2 reasons: • It is an explicit requirement of the UN Convention: • Explicitly stated in 8 Articles of UNCRPD Eg. In Article 4: [States obliged:] ‘To undertake or promote research and development of, and to promote the availability and use of new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost’ • Implicit in achievement of all 2. AT as a critical enabler of human rights. • Research evidence to show that provision of AT enables people to achieve human rights and lack of AT prevents achievement of human rights

  22. Research evidence to show AT an enabler of human rights and inclusion • Range of international research on outcomes of AT showing outcomes in: • Preserving independence • Maintaining occupational roles • Enabling activity and participation in life areas • Enabling community life • Improving quality of life • Victorian research: The Equipping Inclusion Studies (Layton et al 2010).

  23. The Equipping Inclusion StudiesAssistive Technology Use and Outcomes in Victoria (2010) authored by Deakin Universityauspiced by Aids and Equipment Action Alliance funded by William Buckland Foundation.

  24. Research evidence to show AT an enabler of human rights and inclusion The Equipping Inclusion Studies: • Conducted by Deakin University 2008-2010 • Sample of 100 Victorian adults with broad range of disabilities who use AT • Online survey AND selection of detailed case studies. • 2 studies: • The Equipment Study (Focusing on experiences, outcomes and issues of AT users) • The Economic Study (Focusing on economic analysis)

  25. Research evidence to show AT an enabler of human rights and inclusion Findings of The Equipping Inclusion Studies: • AT achieves outcomes - supports participation in all areas of life • 100 AT users reported more than 900 instances of participation enabled by AT. ‘I did a University degree off campus using the Blind mob’s talking books. I wrote and produced a play. I write a lot on computer – something that doesn’t need carers. I write for myself – I participate in a communication advisory group.’ ‘I have paraplegia… I live in a rented flat in Melbourne, with a shower transfer bench to wash, and a padded toilet seat… I drive to work daily with hand controls. We have an accessible toilet at work. On weekend’s I go to my parent’s farm, and use a modified quad motorbike to get around… and my dad made up a hoist to get me into a boat…’ • Each device or ‘AT solution’ leads to outcomes across multiple life areas

  26. Research evidence to show AT an enabler of human rights and inclusion Findings of The Equipping Inclusion Studies: • Lack of AT prevents participation in life and achievement of human rights • High level of unmet need for AT relating to all areas of life (74% of sample) • Priority areas of unmet need for AT relating to personal life (68% of respondents), social life (48%), recreation and leisure life (38%) • 138 instances of UNCRPD rights not attained from sample of 100 people • 114 instances of DHS ‘life areas’ (Quality framework) not attained from sample of 100 people

  27. Lack of AT affecting human rights • 138 instances of UNCRPD rights not attained due to lack of AT solution (from sample of 100 people) • 32 instances re Accessibility (article 9) • 25 instances re General obligations (article 4) • 23 instances re Living independently and being included in the community (article 19) • 18 instances re Standard of living and social protection (article 18) ‘At the moment I do not have any of the aids and equipment that would make it possible for me to join in socially without assistance from others.’ ‘Access to all public buildings would make a great difference. My local MP has a step up to his office; landlord will not allow a permanent ramp. His staff are very good, if they hear me they bring out a portable ramp, however the council will not allow it to be left set up while I am visiting!!!’

  28. Lack of AT affecting participation in life areas • Analyse data against the DHS Quality Framework – sixteen ‘life areas’. • 114 instances of participation in life areas not attained due to lack of AT solution (from sample of 100 people) Most common areas of failed achievement: • Moving around (34 instances) • Paying for things (15 instances) • Having fun (15 instances) • Exercising rights and responsibilities (13 instances) ‘[With the provision of AT] I would just be more independent and like any other 21 year old’ ‘It is so stressful to have nothing- if only I had a mobile… less expensive mobiles will not work with the Connie [refreshable Braille peripheral]. A mobile phone will enable me to contact the person I am meeting if I have an emergency… if I am sick or have been attacked, if the electricity is out I’m unable to contact anybody, the mobile would get rid of all those barriers. We need to argue with the government that it is our right to have equal access to communication.’ (deaf blind respondent)

  29. Summary: AT enables human rights • Provision of AT critical to achievement of human rights • Lack of provision of AT leads to denial of human rights

  30. If AT is a critical enabler of human rights then does government adequately support the provision of AT to people with disabilities?Does the Victorian Aids and Equipment Program foster or hinder human rights? Present analysis of some elements of policy

  31. Are the implementation arrangements consistent with a rights approach? VAEP is a subsidy program • Subsidy programs based on idea that recipients make co-payments Problems with a subsidy program • Recipient group (people with disability who are users of AT) experience extreme financial hardship • 74% of study sample is unemployed • 75% dependent on government income support • 67% earn less than $21,600 p.a (almost all earn less than $58,000 p.a) • Most require multiple elements of AT (up to 13) and therefore need to make multiple co-payments • Can’t afford co-payment or self funding

  32. Are the implementation arrangements consistent with a rights approach? Making a subsidy program support human rights: • Level of subsidy set to be relative to capacity of recipients to pay remainder • Identification of ‘equity’ or priority groups who are eligible for increased subsidy / support • Safety nets or co-payment caps are common mechanisms

  33. Are the implementation arrangements consistent with a rights approach? Level of subsidy compared with real cost of item: • VAEP subsidy is 66% or less of actual cost of item • 27% shortfall for walking frames • 42% shortfall for manual wheelchairs • 31% shortfall for beds • 35% shortfall for portable ramps • 49% shortfall for pressure care equipment • 78% shortfall for home modifications (and only ‘once in a lifetime’ funding available) • Average bathroom modification costs $17,500 - $23,000 in total, VAEP supply $4,400 leaving shortfall of at least $13,100.

  34. Are the implementation arrangements consistent with a rights approach? • Range of AT eligible for VAEP subsidy • List of eligible devices - only 13% of devices available (in ISO 9999) are eligible

  35. Are the implementation arrangements consistent with a rights approach? Range of AT eligible for subsidy (continued): • 13% of available AT devices (ISO9999) are eligible • Ad hoc exclusion of devices even in categories where other items are eligible for funding (eg mobility, communication etc) • Exclude all ‘standard household or personal items… and generally regarded as the community norm for the person or their family to purchase’ (VAEP /SWEP policy) • ‘Generic’ items excluded (lap top, mobile phone etc) even where critical part of customised AT solution • Key AT not funded • Not comply with UNCRPD requirement to promote new technologies or give ‘priority to technologies at an affordable cost’ (article 4) • Barrier to achievement of human rights

  36. Conclusion: barriers to human rights in-built into policy implementation • The list of eligible AT is too narrow. This prevents life participation. How can this be justified? • Subsidy approach is not relative to people with disabilities’ capacity to co-pay. • People with a disability are not treated as an ‘equity’ group in terms of AT policy, despite: • proven that they not meet basic economic rights (low incomes etc) • proven they not meet basic social rights (high levels of participation poverty)

  37. Key criteria for rights based policy • Policy design must match the demographics of its target group • The outcomes identified by policy should be those valued and prioritised by the target group • Policy needs to support the known elements that lead to valued outcomes • Significant attention needs to be paid to the ways to manage insufficient budget allocations • Policies must be tracked through into program guidelines • Policies must be streamlined and co-ordination across them actively managed by government Full discussion in Layton & Wilson (2010) Doing disability policy better: learning from research and policy change activities for The Equipping Inclusion Studies. In C.Bigby & C. Fyffe (eds.). State disability policy for the next ten years – what should it look like? Proceedings of the Fifth Annual Roundtable on Intellectual Disability Policy, Bundoora: La Trobe University

  38. What’s the point? • People with disabilities do not enjoy full realisation of their human rights • UNCRPD requires a rights based / social change practice that: • Asks ‘what is wrong with society …?’ • Creates the conditions that allow meaningful participation • A key step is to review policy and program guidelines • Who is doing this work to realise these rights?

  39. References AT Collaboration (n.d.) AT Solution. Downloaded June 2010 from www.at.org.au Commonwealth of Australia. (2008). Developing a national disability strategy for Australia. Access, inclusion, participation. Discussion paper for consultation. Canberra: Commonwealth of Australia. Department of Human Services. (2010). VAEP Program Objectives. Retrieved May 2010, from http://www.dhs.vic.gov.au/disability/supports_for_people/living_in_my_home/aids_and_equipment_program ISO9999. (2007). Assistive products for persons with disability — Classification and terminology. ISO. Layton, N. & Wilson, E. (2010). Doing disability policy better: learning from research and policy change activities for The Equipping Inclusion Studies. In C.Bigby & C. Fyffe (eds.). State disability policy for the next ten years – what should it look like? Proceedings of the Fifth Annual Roundtable on Intellectual Disability Policy, Bundoora: La Trobe University. http://www.latrobe.edu.au/socialwork/attachments/pdf/2011-state-disability-policy-next10years.pdf Layton, N., Wilson, E., Colgan, S., Moodie, M., & Carter, R. (2010). The Equipping Inclusion Studies: Assistive Technology Use and Outcomes in Victoria. Burwood: School of Health and Social Development and Deakin Health Economics, Deakin University. For download at www.aeaa.org.au Office of the Commissioner for Human Rights (2010) Monitoring the Convention on the Rights of Persons with Disabilities. Guidance for Human Rights Monitors.Professional training series No. 17. New York & Geneva: United Nations State Government of Victoria. (2002). Victorian State Disability Plan. Melbourne: Disability Service Division, Victorian Government Department of Human Services. United Nations (UN). (2007). Convention on the Rights of Persons with Disabilities. Retrieved July Fifth 2010, from http://www.un.org/disabilities/default.asp?id=1 WHO. (2004). A glossary of terms for community health care and services for older persons.

  40. Contact details Erin Wilson erin.wilson@deakin.edu.au Natasha Layton natasha@footy.com.au

  41. Discussion questions? • Whose doing this social change/rights based work? • How can we partner with, be included in this work? • What is needed in the sector in order to more of this work? • What are the barriers to this kind of work in the sector? • What policies and programs are priorities for this kind of monitoring?

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