Conference Speech Sept 07
Judy Turner, MP
Deputy Leader, UnitedFuture
Brentwood Hotel, Wellington
Embargoed to 10.30am, Saturday, Sept 1, 2007

If a good and just society is measured by the way it treats its most vulnerable citizens, then surely it stands to reason, that the way we treat those who care for our most vulnerable citizens is of equal importance.

The theme for this conference is ‘Supporting Those Who Support Others’ and this morning you will hear from people who do just that. You will hear about the people they support and what it is that government could and should be doing in regard to these people they serve.

A few weeks ago we released our discussion document seeking feedback on a range of policy initiatives that affect families. We want feedback from parents and organisations that support parents regarding which ideas they consider would be of greatest benefit to NZ families with dependent children.

The document covers matters like affordable housing options, how family tax rates can be better calculated to reflect not just what you earn but how many children you support, family health, parent education, strengthening marriage and relationships options, and Flexible work options. It is a great discussion starter, particularly with people who need reminding about the many ways their everyday life interfaces with government policy, and who may want to have an opinion about that.

It also asks for feedback from parents who have additional hurdles to overcome as part of their everyday life at home. Families caring for elderly or disabled members, kinship care givers like Grandparents Raising Grandchildren, those parenting children over several households and those families with difficult to resolve disputes that require Family Court involvement.

Thousands of NZ families face additional significant barriers that we need to be turning our attention to.

One of the traps that politicians fall into is that they become obsessed with their own success and survival, and progressively distracted away from those very people and causes that first motivated them to pursue political solutions.

UnitedFuture plays a defining role in the NZ parliament. We continue to make MMP work, and continue to lead others in exploring all the potential that MMP includes. The Hon Peter Dunne at last year's conference signalled a change in the way we would relate to other MMP parties.

These were not empty words, and Peter has followed through; facilitating discussions between the leaders of other MMP parties to discover what issues we can jointly champion and reaching agreement on a code of conduct. There are many unexplored opportunities that our form of democracy offers, and Peter Dunne is providing clear cross party leadership as this develops.

However making MMP work, while it is a hugely positive contribution; is not what gets me out of bed at 5:30am most Tuesdays to fly to Wellington, and I know that it is not what has motivated Peter to invest 25 years of his life to Parliament.

Stable government is a noble outcome and is rightly credited with supporting a flourishing economy, but it does not automatically deliver outcomes for our most at-risk citizens. Who am I referring to?

Immigrants, the elderly, disabled, mental health patients, teen parents and their children, victims of crime and offenders … particularly inmates due for release, children taken into care by the state, children whose day to day care is subject to parental dispute, those relying on our Family Court system for a ruling that determines their contact with their family,

Rabbi Jonathon Sax once defined a good society as one that offers its members equal access to hope.

It stands to reason therefore that where ever we find New Zealanders marginalised, dependent, and stigmatised; when ever we find people relationally disconnected, and contending with very real barriers to their ability to fully participate, then we have people with limited or possibly no HOPE. We still have too many NZ’ers whose family lives are characterised by chaos, neglect, violence, isolation, addiction, or by a lack of genuine autonomy.

When HOPE is in short supply for these most vulnerable, then those that care for them are condemned also to this state of hopelessness.

UnitedFuture has built a reputation as ones who have advanced through Supply & Confidence arrangements with the government policies that support resilience in families.

I’d like to introduce you to James

James lives with his Mum and Dad and baby sister and attends a special needs school. He has a dual diagnosis of Global Developmental Delay and severe Autism. This qualifies him to be categorised as having high and complex needs in disability terms. James does not talk and is in nappies.

So what sort of support does a boy like James and his family get here in NZ? How do we ensure that the level of care James needs is provided in a timely and age appropriate way? How do we ensure that his parents can enjoy a quality of life so that their availability to continue to support James is not undermined by exhaustion?

Recently without any warning the two hours a week household management that parents with children with high and complex needs get was cut for families in Auckland with children under 16 yrs with high and complex needs. UnitedFuture is following up on this matter and I have written to the funding agency and to the Minister to demand a reason for this cut in service.

But while James’s parents will miss this support, their survival is more reliant on the once a month respite breaks, when James goes into overnight care. This respite care is their one chance a month to go out for an evening or get a better night sleep. However they don’t want to see their teenager cared for in an aged care facility. It is not appropriate.

Our Human Rights Commission identified disabled people as some of the most vulnerable to abuse of human rights in NZ.
This is because despite having a world-class policy document called the “NZ Disability Strategy”, the gap between policy and practise is enormous, more so in the government sector than in NGO’s.

Funding models and contracts don’t in any way reflect the intention of the strategy. Workforce planning, training and remuneration are seriously inadequate. Service providers are suffering from audit fatigue and it is questionable as to whether there is any serious measurement of client satisfaction with the services they receive.

There are huge gaps in service provision. James inconveniently turned 13 recently and his parents discovered that the respite care they rely on for a break once a month only caters for teenagers up to the age of 15. James used to receive respite once a fortnight, but the carer who had him every other fortnight has had to pull out for family reasons and James parents have not been able to find a replacement.

There is no one pro-actively advocating for James and his family. They have to find their own solutions every time they hit a brick wall. To date they have found a provider some distance away, who is willing to cover the respite shortfall in the mean time, but there does not seem to be anyone in their area who provides respite for teenagers with high and complex needs.

Listen to some snippets from a book James father is currently writing about what their life with James is like

We have been waiting for this day for countless weeks now. If the truth be told for many months. Boxing Day. Respite Care Day. The big one for the year - ten straight days without James. More than anything else this is the time that we long for the most.

As I pull together the forty nappies James will need for this years stay my mind ponders as to why there are only three beds in the unit for children needing radical respite. I wonder why this haven is not supported in a greater way by those political people who make all the important decisions. Clearly they have no idea what it is like. Obviously they haven’t experienced it for themselves. Parenting a child with extreme physical and intellectual disabilities that is. Caring for a thirteen year old body held captive by a six-month old brain. Week-in-week-out, week-in-week out…the squealing; almost constant from when his day starts at 6:30am through to it’s end at around 9pm when he finally decides its time to sleep, the care; being dependant on us for all his needs from entertainment and play to changing the soiled nappies, the coffee table; not being able to enjoy the simple acts like placing my hot drink down without the fear of it being knocked over, and being socially limited; watching the Chronicles of Narnia at the movies, attending the local church’s Christmas morning service, meeting the rest of the family for lunch at Café Servo’s, using a family pass to Cirque du Soleil, indulging in Christmas eve brunch around a friend’s table, sitting in the terraces at Eden Park watching the Black Caps top order collapse yet again – none of these are possible with a son like James…week-in-week-out, week-in-week out.

Oh, I have longed for today – Respite Care Day.

With the bag now packed and waiting by the front door I decide to sit down in the lounge and wait. It is only 3 o’clock; James cannot be dropped off until 4. I observe James as he lies on the floor, spinning an empty Coke bottle, watching the new Hi-Five DVD that he received as a present the previous day. As I watch him I am amazed at how quickly the euphoria of my day disappears. Depression starts to overwhelm me and the tears begin to well up in my eyes. It is clear that I am grieving.

I begin to imagine what other families, and father and sons, might be doing on Boxing Day. I know. Today they would be down at the local courts trying out the new tennis racquet or heading with thousands of other New Zealanders to the Malls to use their gift vouchers in the big sales

Families supporting disabled members often talk about “discovering” that they are entitled to funding or a service, having often gone without basic support for years. Parents often are just too tired to fight for funding and services to overcome the next barrier.

UnitedFuture continues to be a party that measures itself against family outcomes in terms of our policy gains. What we need to do is to ensure that our gains at a political level deliver results to our most vulnerable family members. This conference affords us the rare chance to hear from a range of people and organisations that support those in need of support. Not all the solutions are political, but where they are, we need to ensure that our policy is well focused and that the deal we strike with whoever is heading up government after next year's election seeks to deliver help where it is most desperately needed.

Grandparents raising Grandchildren should not have to rely on the unsupported child benefit when we would happily pay a non-family care giver full foster care benefit with all the extra allowances. They also should be entitled to funded respite. I am thrilled to have Dianne Vivian and her team here today. These grandparents give up a whole season of their life to protect and nurture at-risk children and we should support the work they do at both a community and political level.

We have to develop more substantial ways of responding to and supporting victims of crime and we are long overdue for an intelligent consideration of both imprisonment and reintegration of offenders in NZ. If we limit our approach to sentencing; to just building more prisons, and if we don’t view this as an opportunity to do more than heap consequences on those who break the law then we will continue to have an unacceptably high incarceration and re-offending rates. If we spent some of the money tagged for new prisons on a better Courts system so that offenders were dealt with in a more timely way so that what ever intervention a Court dished out at least had some sense of consequence, then I think we could re-look at the length of time Corrections needed to be involved in peoples lives. It is a privilege to have Kim Workman here today, and Kim we look forward to all you have to say.

Immigrants coming to NZ face complex and uncertain treatment by our immigration services that are costly and time consuming. Today we will hear from some one who has worked with immigrant families about the areas of immigration policy that she believes needs re-thinking.

We will also hear from the Wellington City Mission and from Every Child Counts, about the people they support and what political answers they are looking for.

UnitedFuture has a strong belief that a healthy society depends not just on its political and economic structures but also on the community resources that care at a personal level. We believe that there needs to be a greater sense of partnership between government and the community and voluntary sector.

The current state of this relationship is not positive. Contestable funding, onerous application mechanisms, short-term contracts, audit fatigue and a lack of regional collaboration sees money wasted and the safety net that should characterise local communities compromised.

UnitedFuture in this conference wants to demonstrate both a listening ear and responsiveness to these challenges. Regardless of who is government after the next election, we want to be part of that mix to ensure that the voice of this sector is well represented in parliament.

ENDS

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