Charities Commission Registration CC22512

Carers Alliance chair's report to Carers Summit – September 2009

It is a privilege to present this report to you in my role as the Chair of the Carers Alliance. The Carers Alliance is five years old this year, and there is good reason to take stock of the achievements of this alliance of 46 not-for-profit groups, very ably led by Carers New Zealand.

Top of the achievements list is the Carer Strategy approved by government in April 2008. This was a very important milestone, a really big deal in fact, because it was the first occasion when the role of carers has been explicitly recognised and valued in government policy in New Zealand. It is a high level statement of principles that will guide future policy work and the significance of achieving that recognition from government should not be underestimated, especially in such a short time since our Alliance was formed.

In this year's budget there were specific announcements of additional funding for respite care services, but unfortunately little else, so there is clearly a lot of work to be done to realise the good intent of that strategy. Disappointingly there was no funding for the Carers Information Centre which we hoped would be established, but there is still a general consensus in the Alliance that in these tight economic times it is good to have what we got.

It is also good to have the commitment of the new government to the Carers Strategy, and the personal support of the Prime Minister, and Minister Tariana Turia, for the strategy.

Development of this strategy and getting it put in place so quickly has demonstrated the value of groups working together and achieving collectively from our combined benefit, things that would have been very difficult to achieve as individual groups. This shows perhaps a new model for effective non-government activity. Compare this to the work of the Access to Medicines Coalition which is a network of 26 groups that has achieved a Medicine Strategy, and other measurable outcomes in the form of increased funding for medicines, and a commitment by government to do a special review of access to high cost medicines. It seems clear that the achievements in policy and funding for medicines and carer issues have come about sooner because of this collective action.

But in each case there also needs to be good leadership to make these things happen, and in respect of progress with carer issues this is an appropriate moment to specifically mention the vision and leadership of Laurie Hilsgen and the team at Carers New Zealand, and the support of the core team in the Carers Alliance executive, in making these achievements possible.

The Carers Alliance is certainly not stopping its work there. This is just the end of the beginning for progress on carer issues. The executive has new initiatives in place and these include work towards nationally consistent policy and services for incontinence, and developing the case for a review of policy and practice for carer support subsidy payments. Papers on both these issues have recently been delivered to government.

So let us celebrate our achievements to date, and note the issues we need to keep working on, before I finish on a different note, with a challenge to politicians and officials involved with carer and disability support issues.

There have been many frustrations felt by many carers for many years. We are faced with inflexible and cumbersome systems that make our lives much more difficult and complicated than they need to be. There have been many calls to fix the problems, including the petition organised in 2005/06 that resulted in the Health select committee inquiry into disability support services.

That select committee report in 2008 found some serious problems:

• A lack of accountability for overall provision of disability services.
• People feel they have little control over services they receive.
• Funding is relatively inflexible.
• Ministry and Needs Assessment agency approaches are bureaucratic.
• There is waste of resources in over-assessment and in allocation of services that are not needed nor requested.
• There is an inability to carry funds forward or use funds flexibly.

But there are systems that can work well and efficiently.

• My dad gets money for his gardening and housework assistance paid into his bank account, and he organises and pays the help he gets.
• My mother-in-law gets similar efficient arrangements for the home help and disability related costs she has.

In both cases they are trusted by the system to make their own decisions and mange the supports they get.

Likewise, the working for families package delivers income assistance directly into pay packets of tens of thousands of families each year, with a standard and simple eligibility criteria, and with the family empowered to make choices about how best to use that income support.

By contrast:

• Ministry and District Health Board carer and disability support is often dished out like 1930s charity - pedantic and patronising, demeaning and disempowering, as well as inefficient.
• There is a lack of imagination and creativity among those who administer the programmes.
• There is a lack of political direction to solve these problems.
  

The questions and the challenges for the politicians and the officials are:

• Where is the action plan to fix the problems in carer support and disability support systems?
• Is there even a commitment to do so?
• Why are there threats of criminal action against those who use their support flexibly?
• Why is individual choice and empowerment not the cornerstone of these systems, as the other core state support systems are?

Please, please, let now be the time that is the beginning of the end for these awful current practices.

Start putting things in place that provide choice and dignity along with support, and do that in a way that respects and trusts families and disabled people.

John Forman
Chair
NZ Carers Alliance