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Fair choices and equal resources

We are passionate about all people having fair choices and opportunities in society. Why?  Simple, we respect and value people’s autonomy and freedom to choose. We are also passionate advocates of inclusive options for disabled people and their families, options such as inclusive education in mainstream schools or independent living in the community. We believe people will generally choose inclusive options when they are done well and are adequately resourced.

We have good reason to believe people will choose inclusive options when they are done well. In the recent Choice in Community Living pilot people living in residential group homes were given the opportunity to live more independently in the community with an equivalent amount of support. Not surprisingly, people chose to live in their community more independently, and the results have been positive. Unfortunately, it remains difficult for people to access good inclusive options, such as Choice in Community Living.

Too often disabled people and their families are faced with unfair options and are effectively pressured into decisions. Currently, some options are better resourced or easier to access than others.  There can be more support available if people choose a segregated option, such as a special school or residential group home (which is not to say that these options are necessarily adequately resourced themselves).  Resourcing for independent living or family-based options can be far less. Resourcing of supports outside of segregated options is generally contributory or subsidy based, rather than providing full funding. Other family-based supports such as Funded Family Care are very difficult to access.

Because resources are more limited and less support is available, disabled people and their families in independent living or family-based situations are often placed under financial and emotional pressure. They can feel pressured to pick a segregated option instead and this is a really difficult decision for them. We saw this pressure in our Families Choices research, which looked at disabled children and their families choosing schools.

Unequal resourcing can also result in inequality between cultural groups. Cultural groups that prefer more family-based options are deeply disadvantaged by the current focus on segregated options.  For example, Pasifika peoples (We note that Pasifika is a very diverse and broad cultural group, but it is a category the Ministry of Health uses) underutilise residential services because they appear to prefer family-based options (See pages 24, 30, 40, 45 and 51 of this report). As a result, Pasifika peoples are overrepresented among users of carer support, which are limited in terms of availability and include subsidies rather than fully-funded supports.

The lower level of support for family-based options is likely to increase poverty rates among Pasifika families who have a family member with a disability. Pasifika people who use disability support services are the mostly likely cultural group to live in deprived areas. Fifty three (53%) per cent of Pasifika people who use Ministry of Health disability supports are in deprivation deciles 9 or 10, which have the highest levels of deprivation (See page 14 of this report).  The ongoing lack of resourcing for family-based and independent living options is having real negative effects on disabled people and their wider families.

The inequality between funding for segregated and more inclusive options can be resolved. There is certainly enough desire for change. People are unhappy with the current cracks in the system which reinforce inequality. These cracks could be seen during the Paid Family Carers cases and in the current Carer Support Subsidy case. The pilots and demonstrations, some of which allow more equal resourcing of independently living and family-based situations, are adding to the pressure and expectations for change. Based on history, I doubt the government can keep a lid on the pressure for much longer.

Sam Murray
National Policy Coordinator

6 Responses to “Fair choices and equal resources”

  1. Thanks once again for such a sensible thoughtful blog.
    Are the bureaucrats reading it?

  2. catherine says:

    How about the bureaucrats taking care of some of our children 24seven to really see what it takes. Really they have NO IDEAL. A real great blog.
    We must not give in to them keep the fight up!

  3. Fiona Weston says:

    We have had issues with being under demonstration or pilot schemes – the details of which were not explained or advised. What does a demonstration actually mean? For us it has meant we were set up by a NASC and a contracted provider , a funding package was delivered under criteria of use that seemed to be meaningful and initially a means to actually improving our day to day lives. But, having carefully budgeted how to use those funds , the criteria suddenly “reviewed” and effectively removed without advance consultation or communication by either the provider nor the funding agency. How does this is anyway amount to individualised funding support, the ability to choose how best to use funding to enhance your life due to your individual disability ….all it does is mean your life and choices can be changed by someone else at no notice so your choices are removed.

  4. […] Individualised models of support may be less expensive for some individuals but, in fact, may be more expensive overall because they are more attractive to disabled people. Currently, some disabled people and their families rely heavily on unpaid support because existing […]

  5. If we have social obligations to protect the opportunity range open to individuals, as some general theories of justice, such as Rawls’s justice as fairness, claim, then we have obligations to promote and protect normal functioning for all. Providing universal access to a reasonable array of public health and medical interventions in part meets our social obligation to protect the opportunity range of individuals, though reasonable people may disagree about what is included within such an array of interventions, given resource and technological limits.

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