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Choice and control in a time of limited resources – can it be used against the disability community?

Individualised Funding, and similar approaches, allow people more choice and control over their disability supports. Instead of people having to go to providers, who are directly-funded by the government, people control the funds themselves. They can choose what to do with the funds, including shopping around for a provider or hiring support workers themselves. This is roughly how Enabling Good Lives and the Australian National Disability Insurance Scheme works too.

Individualised Funding has got to be a good thing right? More choice is good and the disability community has long campaigned for more control over their lives and supports. Real choice and control, however, relies on more than just the formal ability to make decisions. The options to choose from must also be adequately resourced and actually able to meet people’s needs. This is where the United Kingdom equivalent of Individualised Funding is currently falling down.

In the United Kingdom, disabled people are, on paper, being given more choice and control over their supports. At the same time, however, funding for support is being cut. The real result is not more choice and control, but less. Disabled people have to take responsibility for their own support and lives without adequate resources. Funding cuts happening alongside individualised support might not be a coincidence either.

Overseas research has warned that widespread moves to more individualised support might decrease the advocacy power of disabled people. Disabled people might then become more vulnerable to funding cuts. Individual people might have less power to oppose funding cuts than providers might. While the government may be giving disabled people more control over the details of their supports, the government still controls overall funding levels. The overall funding levels will have a big impact on disabled people’s quality of life, regardless of how much control they have over their supports.

Adding to the potential issues, individualised models of support are sometimes being sold to governments on the basis that they are cheaper and more efficient. The available evidence does not support this. 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 paid support options (Such as residential care) are unappealing.

Many governments in the west are openly talking about reducing the size and scope of the state, including in New Zealand. While the thought of less bureaucrats and bureaucracy is appealing, what might this actually mean in practice for disabled people and their families, especially those that rely on government support for everyday life? An individualised model of support may make it easier for the government to reduce its support and responsibility for disabled people.

As well an individualised model of support, especially one with inadequate funding, may struggle to properly address the social barriers disabled people face. The Social Model of Disability focuses on the role society plays in creating disability. In the Social Model, disability is discrimination imposed upon people with impairments. Disability is not what you have, but what you experience in society. Because individualised models of support focus on individuals, they may be less effective at creating wider change and addressing the disabling barriers in society.

We are big advocates of more choice and control for disabled people. People should have control over their funding and the supports/services that they wish to have/purchase. There does seem to be some potential big risks from individualised models of support though. If individualised models of support lead to less funding, they could actually reduce equality and social justice for disabled people.

We remain supportive of Individualised Funding as a way for disabled people to take more choice and control over their lives. At the same time, we are becoming a bit more conscious of the risks and unintended consequences of Individualised Funding. We need to go into this era of more individualised models of support with our eyes wide open. We need to link our call for more choice and control to a call for adequate resources too. We should not let the government force us to choose between choice and adequate resources.

Peter Wilson
National Manager Partnerships & Projects

Sam Murray
National Policy Coordinator

11 Responses to “Choice and control in a time of limited resources – can it be used against the disability community?”

  1. Vicki Terrell says:

    Well done Pete and Sam a complex issue about individualised funding and resourcing. The same debate has played out in deinstitutionalisation and mainstreaming in education. We need to take both the principles of choice, autonomy and issue of resourcing properly. Thorny issues and let’s keep talking about it.

    • Thanks Vicki, we do need to focus on making sure real choice and autonomy is available, which means looking at resourcing.

  2. Isolation is a real risk and increases some people’s vulnerability – needs to be thought about carefully.

    • Thanks Anne, isolation is especially a risk if there are few resources to support people to get out and about in their community.

  3. AllanHall says:

    INDIVIDUALISED funding at least as an idea has been around for some years but the real issues are adequacy of funding and the ability of providers to meet needs- as well as to lobby for better conditions- removing the barriers. Ialso expect that in smaller communities and towns there may be inadequate providers

    • Thanks Allan, individualised funding has indeed been around a long time. Alongside providing choices, there is also a need for adequate funding and advocacy to remove barriers. You are right that ensuring good choices are available can be more difficult in smaller communities.

  4. It’s good to see a thoughtful, well-researched article on these issues. I’m also concerned about the lack of long-term plans to help individuals with IF become more independent. From what I’ve seen and heard, most funding is aimed at maintaining the status quo, e.g. hiring a support worker to give someone a shower, rather than providing equipment and therapy so that they can learn to shower themselves. Of course, this is a problem with other funding models too, but I do think IF is focus on the “here and now” too much.

    • Thanks Kerry that is a great point. The funding should definitely be available for equipment and other innovative solutions. The funding needs to be more flexible. Otherwise we can get stuck with the status quo. Upfront investment can reduce people’s support needs.

  5. It would be a good time took look at the genesis of IF, from the old days of Discretionary Funding for those pesky disabled folk who simply refused to fit their lives around the timetables imposed on them by contracted providers.

    Or were simply sick and tired of unreliable, inadequate and sometimes abusive care from those providers.

    Around about the time that disabled people were demanding their rights and seeking REAL autonomy.

    These people often had to become professional squeaky wheels, until the MOH threw some $$$ at them and said…”sort yourself out and bother us no more.” (sort of)

    And, IF really works well for many people.

    IF Hosts have not always provided the training and support clients need to make a success of IF, and it was great to hear some positive stories about IF at the hui on 16 July,organised by Auckland Disability Law and the Public Service Association.

    I am sure that some were surprised to hear that IF clients are paying their support people up to $20 per hour…way more than the contracted providers pay their staff.

    And the potential employment relationship hazards that prompted the hui can be mitigated by better IF Coaching and a recognition that BOTH parties are vulnerable, and this is NOT a typical business relationship.

    As for using IF to fund equipment…surely that’s Enable?Accessable’s job? The funding for equipment should be separate…but much more flexible and transparent. For instance, if a client sources a piece of equipment(or a modification to existing gear) not in the ‘book’, that meets their needs, and is approved by an OT and is similar in cost to a comparator…then the system should be flexible enough to supply funding. MOH make it so difficult.

    IF will not be for all.

    But, for those it does suit…it can be life changing and liberating.

    Of course the thorns will be in the NASC assessment and allocation process which has always, since inception, been inconsistent and often unfair. There needs to be an Independent Appeals Process, with the ability to address complaints in an transparent fashion, in good faith. The NASC process needs to include a test of reasonableness when deciding the level of “natural support” family are expected to provide.

    I applaud CCS Disability Action for providing a forum where these issue can be discussed.

  6. Choice and control is more easily lost where people have impairments that affect their ability to communicate, including dementia. Careworkers who are bossy, over-controlling, or who scold or argue with people with dementia, are not only compromising the autonomy of the person with dementia, but are actually creating a situation in which resultant frustration, anger or self-loathing can boil over into resistant or aggressive behaviours or actual physical violence.

  7. Allyson Hamblett says:

    Having more choice and control about the way our
    support is delivered is a very good thing. I enjoy
    being able to employ my own support workers, but have
    found the gaps, and nearly fallen through the gaps,
    particularly when trying to find new support workers,
    getting the contracts signed off, and then, after a period
    of time, the support worker starts work. maybe an advocacy
    / support service that IF could fund would be a solution
    – so the in between times could be minimised.

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