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Consultation on Paying Family Carers to Provide Disability Support - Submission to the Ministry of Health [2012] NZHRCSub 11 (6 November 2012)

Last Updated: 27 June 2015

6 November 2012


Family Carers Consultation
Ministry of Health
PO Box 5013
Wellington 6145

familycarersconsult@moh.govt.nz


Greetings

PAYING FAMILY CARERS TO PROVIDE DISABILITY SUPPORT

Thank you for the opportunity to comment on the Consultation on Paying Family Carers to Provide Disability Support.

The Human Rights Commission (the Commission) is New Zealand’s National Human Rights Institution. The Commission’s functions are set out in the Human Rights Act 1993 (HRA) and include commenting on draft legislation, policy and guidelines that may have an effect on human rights. It also has the right to intervene in court proceedings under s.92H HRA if it considers that doing so will facilitate the performance of its functions in s.5(2)(a). Section 5(2)(a) refers to advocating and promoting respect for, and an understanding and appreciation of, human rights in New Zealand society. The Commission intervened in the Atkinson case in this role.

In addition the Commission is part of the monitoring mechanism set up by the Government to report on the implementation of the Convention on the Rights of Persons with Disabilities (CRPD) in New Zealand.

This submission draws on the Commission's experience as intervener and in administering its statutory complaints mechanism, together with information from the consultations it has undertaken as the monitoring mechanism in preparation of its annual report to Parliament for 2011-2012.

Countries that have ratified the CRPD undertake to work towards ensuring the realisation of all human rights and fundament freedoms for disabled people on an equal basis with others. In the context of this consultation article 19 (living independently and being included in the community) is particularly relevant as it emphasises the:

Article 3 outlines the principles underlying the CRPD. Art 3(a) specifically refers to respect for the inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of disabled persons. Together, articles 3 and 5 emphasise equality and non-discrimination. Overall the CRPD is designed to ensure that disabled people have control over the support they receive and the lives they lead. The Commission recommends that this autonomy should be the underlying principle in deciding support how support is provided to disabled people.

The consultation undertaken by the Commission in its monitoring role indicates that living independently and being included in the community is a key concern for many disabled people. The barriers to fulfilling this identified during the monitoring process include the:

The Commission recommends that the processes chosen to implement the Court’s decision move towards the human rights approach of the CRPD and the removal of the barriers identified during the monitoring process. This is particularly important as the paper states that the outcome of the current consultation it to “establish a framework for considering policy options” for other services and groups of people.

The Commission recognises that a replacement policy has to be implemented as soon as possible and cannot wait for an overhaul of the disability support system as a whole. However, any system that is introduced needs to be compatible with a rights-based model. For example this should involve:

One effect of the Court of Appeal decision is that family members of the appellants should be treated as persons willing and able to provide any of the disability support services in issue. It follows that the payment of family caregivers for these services should reflect the same range of options that are available to non-family members who provide the services.

The consultation document appears to suggest that because the potential providers of services are family members different payment options should be considered. The rationale for this is not obvious and it has the possibility of further family status discrimination cases if the same choices are not available to family members as non-family members providing the same services. From a human rights perspective, a disabled person should be able to choose his or her carers based on a suitable assessment. Those choices should not be affected by artificial constraints imposed simply because potential carers are family members of the disabled person.

As a way of deciding whether family members should be considered as carers, the High Court considered the experience of ACC in purchasing home support services from family members. In this context the court considered the potential difficulties identified by the Ministry of Health in employing family care givers, and concluded that:

This suggests that the problems identified by the Ministry are not insurmountable and the ACC experience in employing family members to provide support services to disabled relatives could be used to inform the design of any system.

With regard to the specific questions in the consultation document the Commission supports any service being subject to an external audit to ensure that it is of good quality.

The payment for family members should not be limited to predetermined targeted categories of funding but available as widely as payments to non-family members. It is not necessary to predetermine how family carers should be paid. Being employed by a service provider, setting up as a service provider, being employed via an individualised funding arrangement or receiving an allowance are all arrangements that might best fit a particular set of circumstances. What is essential is that the assessment should enable the disabled person and their family to decide what option is best for them and how this can be realised, with the method of payment being decided accordingly.

The Commission also considers that any system established to pay family members should involve the least disruption to disabled people and their families as possible.

Underpinning the consultation paper is the inference that paying family carers may cause cost blowouts, and compromises to outcomes for disabled people and families need to be made elsewhere. Had the ministry moved faster in implementing the recommendations of the Social Services Select Committee Inquiry to the quality and Care of Services Provision for disabled people, we would be on track to a more efficient, effective, support system. International evidence suggests by shifting away from assessment and moving towards a system where facilitators know their communities, and get to know and build trusting relationships over time with the people they support and their families. Also they provide information and connections with the community, insure no individual carer is overburdened by "natural support", and build a vision of a good life for the disabled person and the family. That individuals good life is less dependent on paid services, and the good life for family members is less likely (but still may possibly) involve being a paid carer.

Attempts have begun to achieve such a change. What is now required is to pull all the support reform initiatives, including the "Families as Paid Carers" work, into a coherent package of reform under a single board comprising key departmental CEs (starting with health, social development, and education) and representatives of the disability community. This would align with international best practice and the principles underpinning better public services. Such a group could ensure the reform agenda progresses coherently, is well informed by lived and community experience, and could dismantle what isn't working while ensuring vulnerable people are kept safe. This is what disabled people and their families, as well as providers of services, are asking for through the “enabling Good Lives” initiative.

If you would like further information about this submission please contact Bruce Coleman, Senior Policy Analyst, Ph 03 353 0952 or BruceC@hrc.co.nz

Yours faithfully

C:\Users\JudeW\Desktop\Paul Gibson signature.tif


Paul Gibson
Disability Rights Commissioner
Kaihautu Tika Hauatanga


[1] Paragraph 245 [2010] NZHC 2401; (2010) 9 HRNZ 47
[2] Ibid para 264
[3] Ibid para 267


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