Day of General Discussion on Article 19 - Submission to the Committee on the Rights of Persons with Disabilities [2016] NZHRCSub 4 (28 February 2016)

Last Updated: 4 June 2016

Committee on the Rights of Persons with Disabilities: Day of General Discussion on Article 19

28 February 2016

Introduction

1. The New Zealand Human Rights Commission (“Commission”) welcomes the opportunity to make a submission to the Committee on the Rights of Persons with Disabilities (“the Committee”). The Commission is New Zealand’s National Human Rights Institution (“NHRI”). It is accredited as an “A” status NHRI. It is an independent Crown Entity pursuant to the Crown Entities Act 2004 and derives its statutory mandate from the Human Rights Act 1993 (“HRA”). The long title to the HRA states it is intended to provide better protection of human rights in New Zealand in general accordance with United Nations human rights Covenants and Conventions.

2. The purpose of this submission is to provide input into the Day of General Discussion on Article 19 that the Committee will be holding on 19 April 2016. We understand that the outcome of the Day will inform the drafting process of the Committee’s General Comment on Article 19.
   
3. The social model of disability, which underpins the Convention on the Rights of Persons with Disabilities (“CRPD”), constructs ‘disability’ as a consequence of the interaction of an individual and an environment which does not accommodate an individual’s differences and limits or impedes an individual’s participation in society.^[1]

4. The realisation of Article 19 of the CRPD is fundamental to the ability of disabled people to fully participate in society. State Parties must promote enabling and inclusive environments for all and people with disabilities should have ‘choice’ and profile in those communities. The importance of this is demonstrated by the following quote by Robert Martin, a person with an intellectual disability who was institutionalised for much of his life: ^[2]

I competed in the Masters Games in cricket, table tennis and soccer and won medals at times. I loved being part of the team, chatting over a beer at the aftermatch and meeting some of the great sports people from the past. But it wasn’t just about the fun. It was important for me to do all of this. I wanted to be visible in the community and have people realise that just because I had a disability it didn’t stop me from achieving what I wanted in life. It just took me a little longer. With support my dreams could come true.

5. Robert was deemed “too disabled” to belong in a family and was institutionalised as a child. The evidence from Robert and many others on the impact of institutionalisation on disabled children, including the impact of the widespread abuse, indicates the need to prioritise the ending of institutionalisation of disabled children.

6. The Commission believes that the following principles should underpin the interpretation of States’ obligations under Article 19:

1. States must do more than simply abstain from measures that might have a negative impact on disabled people. Article 19 imposes a positive obligation on States to progressively take steps – to the maximum of their available resources – to ensure that disabled people are fully included and fully participate in society and live in the community, with choices equal to others.^[3]
2. States must acknowledge the reality that for many disabled people enlisting the support of a family member is the best way to make their rights real and enable a good life. In doing so States must provide adequate funding for family carers and ensure that robust supported decision making processes are embedded in policy and practice to support these arrangements.

100. States must ensure that eligibility for funding of disability support services – including family care situations – is flexible and responsive to an individual’s circumstances and is not linked to criteria which create barriers for disabled people.

4. States must ensure that disability support services are responsive to the cultural needs of diverse communities.
5. The youth justice framework must not be used as an alternative to the provision of appropriate supports in the community for young disabled people.
6. States must also ensure that mechanisms are in place to protect disabled people from the risk of abuse and neglect in care situations.
7. Supports for people with disabilities, (particularly those with neurodisabilities), to make decisions must be tailored to the individual and be competent and objective – particularly for matters of a financial nature.
8. States must ensure that disabled people have access to adequate, accessible, visitable and affordable housing.
   

7. Through examples from the New Zealand context, this submission highlights why the above principles are central to Article 19.

Family Care (Art 19(a))

8. For many disabled people, the most practical way of making their rights real and enabling a good life, is through enlisting the support of a family member. This requires a supported decision-making process.
   
9. While family members provide much of the support and play a key role in enabling disabled people to live fulfilled lives, this can incur a financial cost to family members, particularly if they have to give up paid work to care for their disabled family member(s).

10. New Zealand is an ethnically diverse country. For cultural reasons, Māori and Pacific disabled people are more likely to choose support from within their whānau, aiga or family.

11. For Māori, living in the community involves all aspects of Te Whare Tapa Whā – physical, mental, spiritual and whānau health. Support structures/service delivery needs to take this holistic model of health into account and provide Māori and Pacific people the level of rangatiratanga or choice to which they aspire. For example, New Zealand’s Ministry of Health (MoH) currently provides some services for people with a disability which are delivered by Māori providers or other organisations offering services specifically for Māori.
12. Having access to funded disability support services to assist disabled people in their everyday lives is a key aspect to living independently and being included in the community. Until recently, government policy meant that individuals were not eligible to receive funding for the provision of care to disabled family members.

13. This policy was held to be discriminatory by the Courts and in October 2013, the MoH introduced a Funded Family Care (FFC) policy. This permitted a small number of disabled people aged over 18 with ‘high or very high needs’ to receive funding to employ family members with whom they live (excluding spouses or romantic partners) to provide some disability support services.^[4]

14. An evaluation commissioned by the MoH to assess the FFC policy’s impact and effectiveness at the end of its first year, found the policy had a number of positive impacts. These included improved finances for family carers, improved health for both the disabled person and their family carers, and more opportunity to get out in the community leading to a better quality of life.^[5] As one parent stated:

I think for [disabled daughter] being able to get out and about, it’s a plus. We did Christmas in the Park. We’ve gone to [larger town] shopping. Days like that shows her the bigger, wider world is a reasonably friendly place for people with disabilities.

15. The evaluation did find that the FFC policy could be improved. Under the current policy, people receiving support are required to give their informed consent to take up the funding and have a number of responsibilities as an employer of their family member(s) providing care. The evaluation found that it was likely that the majority of those eligible would lack the capacity to comply with these requirements.^[6] This was reported as a reason for the limited uptake.^[7]

16. The level of payment was also an issue, with the majority of families viewing the minimum wage rate as unfair given non-family carers get paid a higher rate to do the same work.^[8]

17. The Public Health and Disability Amendment Act (No 2) 2013, passed shortly after the court determination that the previous policy was unlawful, prevents anyone from making claims of unlawful discrimination to the HRC, Human Rights Review Tribunal, or court, in relation to the policy on a number of grounds, including disability and family status unless the complaint was lodged before 15 May 2013.^[9] That the legislation currently prevents people from bringing unlawful discrimination claims is of concern.

18. People with learning difficulties/neuro-disability are living longer. The numbers of older people with learning difficulties in New Zealand is difficult to quantify but likely to be underreported (due to a lack of disaggregated data). In the United Kingdom, one estimate suggests that by 2030 the number of adults aged over 70 using services for people with learning disabilities will more than double.^[10]

19. Longer lives also mean increased risk of people with disabilities outliving their primary support people. This means State Parties need to consider what services/support are needed to fill this gap. State Parties also need to consider the needs of people who develop disabilities later in life. We would appreciate clarification from the Committee that the CRPD coverage of people with "long term" impairments includes older people who, late in life, acquire impairments expected to last more than, say 6 months.

20. In general decision makers should not jump to narrowing service delivery criteria for people who have high or complex needs but rather take an approach that recognises the potential of every person. For example, we need the State to invest early in families in order to support them to encourage aspirations for any disabled children, to build community and natural supports and to support disabled children to become independent.

Protecting disabled people from the risk of abuse and neglect (Art 19(b))

21. Care structures need to receive adequate support themselves in order to be safe and supportive for disabled family members and reduce the risk of neglect or abuse. In addition to the physical, emotional and sexual violence that is too often experienced by non-disabled people in care situations, “locked in” and “silencing” violence can also be specifically directed at disabled people.

Younger people with learning difficulties receiving services in a youth justice framework (Art 19(c))

22. International research suggests that there are likely to be large numbers of young people currently in secure settings who have undiagnosed neurodevelopment conditions which have directly contributed to their offending behaviour.^[11] It is vital that young people with neurodisabilities receive appropriate services at an appropriate time outside of, and earlier to a justice/detention context.
    

Effective ‘supported decision making’ (Art 19(b) also cross refer Art 12)

23. Living independently does not mean living alone or in isolation.^[12] People need the advice and support of other people. Many people with disabilities struggle to replicate/access the informal web of community and familial supports/advice that others take for granted. While recognising the financial challenges of doing so, the Government is in a position to financially assist the provision of support for people living in communities. Supports for people with disabilities, (particularly those with neurodisabilities), to make decisions must be tailored to the individual and be competent and objective - particularly for matters of a financial nature.
    

An informed approach to ‘reasonable accommodation’ needed (Art 19(b) and (c))

24. In practice a lack of understanding of the need for reasonable accommodation and the lack of competence to apply the principles of reasonable accommodation remains an issue and is at the heart of many complaints and enquiries in both the public and private sector.^[13] Given that many decision makers struggle to apply the concepts of ‘reasonable accommodation’, it would be useful for agencies to consider how they can better train/support their staff in this concept.
    

Housing (Art 19(a))

25. Having access to quality accessible housing is a key enabler to disabled people living independently and being included in the community. However, disabled people in New Zealand face significant barriers in accessing suitable housing. A project on housing and disability in New Zealand commissioned jointly by the Centre for Housing Research and the Office for Disability Issues in 2007 found that there is considerable unmet need for accessible, safe, warm, and comfortable housing people with mobility impairments of all ages.^[14]

26. The report noted that the demand for such housing is likely to increase as disability and mobility impairments increase in the population and recommended that accessible and universal design principles be incorporated into ‘ordinary’ mainstream housing.^[1] A push towards universal design and an increasingly high proportion of the housing stock being accessible allows more disabled people to visit friends and family in the community.
    
27. Despite the recommendations being published more than eight years ago and a lack of current data, multiple media stories suggest finding suitable housing is an ongoing issue for disabled people across the country. The report highlights that disabled people and their families are forced to ‘make do’ in inaccessible, unsuitable accommodation, and about 500 disabled people of working age live in rest homes due to a lack of housing options.^[15]
    
28. A report by the United Nations Human Settlements Programme notes that people with disabilities face a range of ‘exceptional’ barriers that prevent their enjoyment of the right to housing guaranteed by Article 11 of ICESCR and expanded upon by Article 28 of the CRPD.^[16] These barriers include discrimination in legislation and policies, environmental barriers, lack of participation and access to resources, and a lack of monitoring and complaints mechanisms.^[17]

Conclusion

29. The extent to which State Parties work with persons with disabilities and their families to provide meaningful, targeted services at the right time and context is a key determinant of how well people with disabilities will be able to live independently and be included in their communities. In New Zealand, we continue to advocate for better data and the political mandate to adequately address these issues.

Contact person:

Douglas Hancock
Team Lead (Disability)
Ph: [phone]
Email: [e-mail]

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^[1] OHCHR ‘Monitoring the Convention on the Rights of Persons with Disabilities’2010
^[2] Robert Martin in John Mcrae ‘Becoming a Person’ 2014
^{[3] CESCR General Comment No 5: Persons with Disabilities adopted in 1994 p3
[4] Ministry of Health’s Funded Family Care Policy at} http://www.health.govt.nz/system/files/documents/publications/evaluation-funded-family-care-aug15.pdf
^{[5] IbidP.4-7.
[6]} Ibid P.20.
^[7] Ibid P.37.
^[8] Ibid P.25.
^[9] Public Health and Disability Amendment Act (No 2), s. 70E.
^[10] British Institute of Learning Disabilities Factsheet 2012
^[11] ‘Nobody made the connection’ Report of the UK Children’s Commissioner 2012
[12] HRC ‘Thematic Study on the right of persons with disabilities to live independently and be included in the community’ 2014 page 5
[13] Human Rights Commission Response to the List of Issues of 22 August 2014 paragraph 22
^[14] http://www.chranz.co.nz/pdfs/housing-and-disability-future-proofing-new-zealands-housing-stock-for-an-inclusive-society-bulletin.pdf

^[15] See for example: http://www.stuff.co.nz/dominion-post/news/67925111/Disabled-dumped-in-rest-homes; http://www.stuff.co.nz/national/health/64958628/Special-needs-family-face-life-in-tent; http://www.stuff.co.nz/marlborough-express/news/65347648/Lack-of-suitable-housing-for-people-with-disabilities; http://www.stuff.co.nz/national/65485571/long-wait-for-modifications-forces-boy-to-shower-at-stadium; http://www.stuff.co.nz/national/health/8256621/Disabled-seek-alternative-to-rest-home-life; http://www.stuff.co.nz/auckland/local-news/auckland-city-harbour-news/8537743/Home-access-appeal/; http://www.stuff.co.nz/auckland/local-news/eastern-courier/8413511/Auckland-needs-mobility-friendly-housing
^[16] http://unhabitat.org/books/the-right-to-adequate-housing-for-persons-with-disabilities-living-in-cities/,P. xi.
^[17] Ibid P. Ix.