Access by Various artists


How many agencies does it take to change a light bulb?

by Angela Hart

Halfway through October, my family had the experience of a planned power outage and it led me to wonder what people generally think the provisions are in New Zealand for medically dependent people, and if my expectations are unreasonable.

What happened was a simple planned power outage set for 11:30pm to 4:30 am on a week night, to do essential network maintenance and timed to cause minimal disturbance for most people in our neighbourhood.

We were initially informed by our electricity retailer, Powershop, in an email which said those requiring electricity for medical purposes should phone them to discuss their options. I did that, and was told that there were no options; it was out of their hands, nothing they could do, it wasn’t them it was United Networks, their supplier.

Next we got a letter in the post. Two identical ones actually, in separate envelopes. This was from Vector (who own United Networks) to tell us about the outage. The letter said to contact our health provider in case of reliance on electrically operated medical equipment.

I have a family member who needs a Bipap machine to breathe whenever she lies down. Back in the day there’d have been a tracheotomy and a ventilator. These days, with the advent of BiPap, respiratory conditions can often be managed in a less traumatic and invasive way, and life goes on without any great fuss. She isn’t medically dependent to the degree that she’d die in minutes if the BiPap machine stopped working, like this person, but there would be serious medical consequences.

So I contacted the respiratory department of the hospital responsible for our machine, explained about the planned power outage and asked if they could supply a battery for the machine. No was the answer, but you can come in to hospital for the night.

For many reasons, the thought of another night in hospital was singularly unappealing, so I continued to explore our options, from spending the night in a motel or staying up through the power cut, to hiring a generator.

I phoned two of the agencies involved in supporting us by channelling Ministry of Health funding. Manawanui in Charge, our Individualised Funding Host, told me that Vector wasn’t allowed to cut our power off (both untrue and unhelpful). Taikura Trust, our Needs Assessment and Support Co-ordination agency said the same thing and went so far as to phone Vector on our behalf. I was surprised by the stance taken by these two support agencies.

Subsequent discussions with a representative of Vector ended with an emphatic “this is not our responsibility, if there is medical dependency, responsibility lies with the medical people, we’ve given you advanced notice so that you can sort something out with them”.

From Vector’s perspective, planned outages are a fact of life, you can’t do some of the essential maintenance on live equipment, and there is no guarantee of supply. Perhaps there should be (except for unforeseeable events).  Maybe the power companies should be made responsible. I don’t know.

Phone calls continued.  I was repeatedly treated like an idiot, asked if I’d rung the power company, and surely I must have friends or family who could put us up for the night (friends and family with spare beds and wheelchair-accessible homes?).  I was told to go and see our GP (at whose expense? And what could he possibly do?).

I rang a hire company and checked out the cost of hiring an inverter generator that could run this expensive medical equipment safely. $104 - surely a lot cheaper than a night in hospital and considerably less difficult for us. I should explain that a night spent anywhere but at home involves packing, unpacking and setting up  an array of essential equipment, (twice, once there and once back home) on top of the stress and fatigue of the journey and the experience. It isn’t just throw a few clothes in a bag and go.

I contacted the Ministry for Social Development. They said they might be able to lend us money to cover the hire cost – if we could provide written proof that no one else would help – but it would have to be paid back.

I booked the inverter generator and sent a couple more emails, one of them to a CCS Disability Action policy co-ordinator. He offered to look into the issue when he had time but suggested I contact my MP. Why hadn’t I thought of that?

Well, my previous MP was Paula Bennett. My dealings with her office were unproductive. It just hadn’t occurred to me that my MP might be willing and able to help. I thought why not, can’t hurt, and sent a quick email to Phil Twyford, the incumbent for Te Atatu. Blow me down, he responded within a couple of hours and was on to it.

He spoke with management at my local DHB, they contacted me and agreed to reimburse me for the hire cost and to work with me to produce a clear plan for future outages. I haven’t yet been reimbursed or been involved in any planning with the DHB, but we all know how slowly the wheels do turn.

It was a good outcome for us, because $104 is a significant proportion of the weekly Supported Living Payment that my family member lives on, and I don’t think it is fair to expect a person on this level of income to have to pay this sort of cost for this sort of thing.   This planned power outage gave us yet another disability-related cost for which there is no provision, this time an urgent one.

It seems to me that better plans need to be in place and communicated to people. Not all medically dependent people will have to have continual electricity. People using oxygen concentrators, for example, can be supplied temporarily with small portable oxygen cylinders. But the back-up plan for medically dependent people needs to be workable, clear and known to all parties. And I don’t think taking up a hospital bed when there’s a simpler and cheaper option is sensible. What do you think?


Social media, disability activism and community inclusion

by Hilary Stace

Sometimes it can be very lonely in the disability sector. It feels like nobody understands, the world is against you and everything is a battle. However, many people are using the power of social media to fight back against this isolation.

When my son was diagnosed with autism in the 1990s I didn’t really know where to go for support or more information. I was given a folder of material which included a contact phone number of the local Autism NZ branch. I rang the number, left a message, and eventually met a small group of parents who became my knowledge base for autism and support network. We met regularly and sometimes got speakers along. Our children were at different ages and stages and it was very helpful for me – but the expertise circle was small. There were some books available on autism but they weren’t about New Zealand.

These days a parent of a child newly diagnosed with autism can go straight to one of numerous autism-specific Facebook groups and find information, ask questions and receive help and support 24/7 from a local and global community. The parent can ask about school support and behaviour issues or just talk about how tough things are in the middle of the night with a child who won’t sleep. They can ask about the numerous therapies or interventions which are offered on the internet and whether people have used them and had good or bad experiences.  There are often questions about what is out there for school support and how to access it.

Within minutes someone will usually type a reply and others will follow. These groups are usually well moderated by other parents or like-minded people who keep an eye on comments and try and keep them supportive. People who act as trolls – who try and subvert the generally helpful tone, or promote particular therapies ‒ are often quickly silenced. Things are generally pretty safe if you join and comment on well moderated sites and they usually have some rules displayed.

This connectivity in a community that is often geographically or socially isolated is really valuable. There can also be cross over with mainstream media. It is all part of that important relationship building that keeps us going.

My son is an adult now but a lot of our experience is still relevant to those just starting out. I also know how things are supposed to work so can tell people about aspects of our complex system such as NASC. There is a lot of misinformation out there and people not getting the support they are entitled to. For example, many people don’t know about things like the Child Disability Allowance, or that their child is legally entitled to go to the local school all day even without a teacher aide.

Busy Facebook sites I belong to (and for some a request to join is required) include Autism in NZ, Autism Action NZ, Aspergers Syndrome NZ and ViPs Inc NZ. The Disabled People’s Association (DPA) NZ Facebook page provides regular information about the Convention on the Rights of Persons with Disabilities and other disability topics locally and internationally – again it is well moderated and safe.

Social media is also linking with mainstream media in with community activism. Here’s an example.

In May 2013 there was a shocking headline and article in the Sunday Star Times‘Boy left to eat grass at horror home’.

This was a report on extensive and ongoing abuse at a disability residential provider in Pukekawa. It was a major investigation by Kirsty Johnston. As health reporter, she started reading reports from the Health and Disability Commissioner and doing some investigating and asking questions of the Ministry of Health, and before long found that a lot was not right in the disability sector. She wrote a series of articles for the paper.

As a keen social media follower with an interest in disability policy I retweeted and shared these articles. I sent her an email thanking her for her work, as combatting disability abuse is a passion of mine. I often respond to journalists, particularly when they write articles about disability issues. There is often an email address with their byline. Usually I commend them but sometimes I gently chide them for disablist language or promoting disability as heroic or tragic. Kirsty eventually won a major journalism award for her work but by then was off on her OE.

By mid-2015 Kirsty was back and working at the NZ Herald. She was given the education round. It didn’t take her long to realise special education was a minefield as she heard regular reports about children who had missed out on funding or support. She found there had been significant underspending on special education by the Ministry of Education, and that there also just been an ‘update review’ on special education for the Ministry, although it had mainly involved professionals.

As we had had earlier contact about disability issues, she emailed me to ask for stories from parents in the special education system about how things were going for them. It was good journalism to try and find out what special education policies actually meant to families on the front line. So I offered to put her request onto some Facebook autism parent groups. She gave her contact details so people could contact her directly.

Straight away many angry parents told her how hard it was to get support.  Here is one of the first articles. Many schools were asking parents to pay for teacher aides or wouldn’t let the children come to school. It was hard to enrol disabled children in preschool. The stories kept coming. Kirsty wrote several articles in New Zealand’s biggest-circulation newspaper and the stories were taken up by other media. By the end of the week the head of the Ministry of Education had to respond.

In the background were ongoing rumblings on Facebook about the special education update review and lack of parental engagement. Some parents made appointments with senior people in the Ministry of Education’s Special Education and asked for the consultation to be extended. The Ministry eventually agreed, particularly now it had become headline material.

The dates, venues, background material were posted on Facebook and parents, teachers and other educational professionals reported back on the meetings as they were held around the country. The mood of the well-attended Wellington meeting that I attended was sad and angry. Some wrote their own letters to the Ministry and posted them online too. Hundreds of people attended these meetings over a few weeks. Progress will be reported back on those pages – and the review will not be forgotten.

Now there is a select committee review on some special education issues. Catherine Delahunty, the Green Party MP on the Education and Science Select committee, has been pushing for a review for several months. She was successful in getting an Inquiry into the identification and support for students with dyslexia, dyspraxia and autism. Kirsty Johnston has now analysed the first of these submissions  to go online.

But this is not the first select committee on special education that has been instigated and supported via social media activism.

Before we had Twitter and Facebook there were blogs and websites. And there was one called Humans started by our own Russell Brown. In 2008 the National Government won the election and straight away passed the legislation for National Standards without public scrutiny. Some of us were worried about the effects National Standards would have on children with autism and had a little campaign, reported on Humans, to get the Education and Science select committee of politicians from various parties to investigate. The committee asked Ministry of Education officials to report.

Eventually the committee recommended merely that they keep monitoring, and several years later our concerns have been proved correct – National Standards are not a good measure for the teaching and learning of autistic kids, and can be detrimental. National Standards results for all students including those on ORS have to be reported to the Ministry and schools are not allowed to indicate if any of the students have learning disabilities. So the league tables from the less inclusive schools look better. Blog sites like Humans are archived and here is my post about it from 2011 covering the select committee’s report.

This Access blog is another way to talk about disability after the Humans blog outlived its format.  Anyone can send in a blog post to Access on a disability topic. I have found it good way to report my research. There have been long discussions about disability policies such as Funded Family Care from people who are at the front line of these things and know the details. There is some great critique of Ministry of Health policies and wonderful personal stories. All communicated to an online audience including those who might not know much about disability issues but are now allies.

So there are numerous blogs and ways the disability community is connecting and sharing concerns, information and activism. Many organisations such as IHC with its Hot Issues e news and CCS Disability Action share information electronically about disability issues – which can then be further shared though social media.

It also doesn’t matter what your impairment is, as social media can generally be made accessible. One of the most active social media people I know is a young man in a wheelchair who uses blink technology to tweet and Facebook and post YouTube videos. There are, of course, still barriers for many New Zealanders such as lack of access to the internet, which is a political issue.

There are other social media tools developing, for example Loomio, which is a New Zealand social media initiative which came out of the Occupy movement, and is an easy way for many people to discuss specific topics.

So social media can play a big role in disability inclusion. Participation in social media is like posting on a public notice board. For those new to it, I would advise them to only interact with sites which have good moderation, anonymously if they prefer, and not to give out information they don’t want others to know. To share posts and material that they find useful or interesting. To keep things brief and not argue with trolls. To use social media to overcome isolation and promote inclusion.


The First Day

by Fiona Mckenzie

Friday was the last day of the holidays. Not just the holidays – my holidays. After 17 and a half years of raising a child with special needs, I’m returning to full time work today.

So. This is it. That unimaginable day.

On Friday, I felt I should be tripping hand-in-hand with my children around all the holiday activities on offer in Christchurch. But Jasper was away with a friend having a lovely relaxing lakeside holiday and Claudia was still recovering from her latest general anesthetic, three days ago.

She’d been pretty much sleeping and dribbling ever since, eating (spaghetti, yoghurt, weet bix) but not drinking. My last day as a stay-at-home- Mum was spent bribing her with the iPad-for-sip-of-water trade off and a shit-load of washing. Also Typical. For us. Normal. And nothing like a blimmin’ holiday.

The offer of full-time work came suddenly and unexpectedly. I blinked for several moments and then in a miraculous moment of clarity realised that yes, I could.

Since moving to Christchurch we have been slowly but surely lining up the Claudia-transitioning-into-adulthood-ducks. That included moving into the individualised funding model of support and finding a wonderful support worker independently of an agency. Because we’re grown-ups now!

What Claudia’s increased independence from us has meant is that my time could be more my own again and I heard myself assuring my prospective employers that yes, I could indeed take up this, I was ready to return to work full time and things at home will be fine.

Looking back, this is a point we have been vaguely working towards – and here we are, with perfect timing.

And it has caused me to look back.

Raising a child with disabilities is bloody hard work.

Its physically and emotionally hard. It’s relentless.

It limits everything about your day – you are never in control of your own time when you are managing another whole human body in addition to your own.

It’s unpaid.

Most families need two incomes to live comfortably these days.

You’d need to be earning a huge amount to make paying someone else to care for your difficult child while you work worth everyone’s time and effort.

And coming home to a disabled child after a hard day’s work simply means you still have a night's work ahead of you.

Disabled kids are hard on relationships. Ordinary stresses; money, siblings, time, exhaustion are amplified through disability because there is no escape. You can’t change the one thing which would need to change to make things different.

Some sites quote stats as high as 80-90% divorce when a child has a disability.

How Steve and I have managed to stay together through all the usual stresses plus blended families and then disability is amazing. We may have dodged that statistic because we never married!

It is perfectly usual to find teacher aides at schools who are solo parents of children with disabilities. If they want to work and they’re not teachers themselves, it is a job which suits their own families and at which they are expert.

But they’re notoriously underpaid and, importantly, don’t get the break from disability that we all need.

Parents of children with disabilities are not supported enough. They’re just not.

Don’t tell me about how lucky we are in New Zealand because someone in England gets nothing like this support. That’s sad for them but nothing to do with here and I live HERE.

Don’t tell me we’re lucky it’s not the “old” days where “kiddies” like ours got put away because, ghastly as the old days were about many things, we’re not there now and I live NOW.

Don’t even tell me it’s lucky there’s two of us because I can tell you that when one of you is working full time and stressing about earning enough to support a large and demanding family – the division of labour becomes very traditional indeed!

And don’t tell me I’m lucky to get to be at home every day, because it’s not through choice.

I would have happily exchanged being able to do the work I love, adult company, work problems and some money for days at home washing faces, sheets and bums.

Families like ours need more help.

They need to be able to accept that help with dignity.

They need to be able to enroll their child at school without people wondering aloud how the normal children will cope with it.

They need the respite hours they are entitled to be allocated not according to how badly they present their situation, but by the actual reality of their conditions.

They need to be assessed by people who don’t make them feel judged and they need any allocated support to be actual minimum wages for people, not just a “contribution towards”.

Otherwise, what should be real support just becomes real extra money families have to spend to supplement the wages of people who they can’t actually afford to employ.

And these people are not just babysitters, because these families have members whose needs are usually complex and sometimes severe and always require high levels of attention and who are all more than usually vulnerable. For ever.

It’s hard to find people to fill that role for less than the minimum wage.

Families who live with disability need to have it understood by families that don’t live with disability that they don’t get breaks – so if you can give them one, do it, just them give them a bloody break.

Income splitting would go a long way to help families on a single income.

It wouldn’t be hard to manage; we’re all in the system anyway and it would be one instant way to help families manage better. But while people have talked about it, nothing has ever got done.

Like so many who end up representing us, in government, on councils, advocacy groups and school boards – so many people come in, fill in their time and then go.

And while they talk about real, positive change, the only thing that ever really changes is that those people move on, the next lot come in and begin their rounds of consultation, their reports that confirm we’re stressed and the systems are failing, then they argue about money, then they leave and the next lot come in and the process starts again.

And the families are still sitting there growing more cynical. Can you tell?

And the worst of it is that looking after someone with disability and not working for yourself and having a generation of strangers representing agencies coming to you to judge you and your family and your situation is just so bloody demoralising that I can only express all of this now it’s over.

Now I have a job of my own back in my chosen career, the opinions of those others matter less.

Their judgements matter less because I feel less beholden now and that’s staggering to me because I hadn’t realised how vulnerable we all have been through our vulnerable daughter.

Wish me luck for today! It will be a massive change for our family – but one we’re ready for.

Fiona Mckenzie blogs on family life at My Perils of Wisdom. This post is adapted from an original post there.


Safe schools for everyone

by Catherine Delahunty

In my seven years in Parliament working on education I have been approached by students, parents, and teachers about the endless problems that they face with getting learning differences identified early enough in schools. The other major issue that has been raised is getting the right support that includes all students. A quality education system is committed to equity and meets the needs of all of its children

The Green Party has initiated a Parliamentary Inquiry into dyslexia, dyspraxia, and autism spectrum disorders in schools in New Zealand. The Education and Science Select Committee has agreed to a request of mine to investigate the identification of and support for students facing these significant challenges.

Recently 104 Northland principals took part in a survey on Special Education and Behavioural Concerns, with more than half of them saying there are not enough resources or assistance provided to deal with the issue.

As far as we know:

• 13,000 children between 2-14 have been diagnosed as being on the autism spectrum disorder (including Asperger’s syndrome),
• autism is estimated to affect 40,000 people,
• dyslexia is estimated to affect 70,000 people, and
• dyspraxia is estimated to affect 70,000 schoolchildren.

These figures are speculative because the identifying of these learning issues has been so contentious. There need to be strong processes and support in place to enable these learners to make the most of their educational opportunities. Investigations at an early level of education are important before students may become discouraged from education at higher levels.

Of particular concern has been the inequality in access to support for these conditions. Decile 10 schools are seven times more likely to get Special Assessment Conditions assistance than students in Decile 1 schools. It can cost well over $700 to get these special assessments done. Some parents can afford to get their kid assessed or get the extra support from school, but there are too many families that are missing out.

We need to stop the underfunding, and get on with building safe schools where all tamariki can all learn. Genuine inclusion does not have “benign” neglect, or bullying of students with learning differences. It is about our attitudes to learning difference improving, as well as the Government needing to invest consistent resources into schools. A decent society starts with decent and fair access to education.

I urge a wide range of parents, schools, and teachers to participate and engage in the Select Committee process that is going ahead. You know what works best for kids and their learning difficulties so we need to hear from you. Your experience is important so let us know what you need.

You can make a submission to have your experience heard using our submission guide

Other Ways to submit to the Committee

  • Submit online at Parliament’s website here.
  • Email your submission as an attachment to . Include your contact details and whether you’d like to speak in front of the Committee in the body of the email.
  • Freepost two copies of your submission to Committee Secretariat, Education and Science, Parliament Buildings, Wellington 6011

Just think of the children

by Hilary Stace

September 2015 marks 76 years since the passing of the 1938 Social Security Act. This act, which was passed at the end of the first term of the first Labour Government, was incredibly popular with the public who had endured the economic Depression of the 1930s. Indeed, for many people life had always been tough.

The Act established the "cradle to the grave" welfare state. Although various types of pensions and other assistance had been available before then, this wide-ranging Act developed a comprehensive package of welfare benefits and a free-at-the-point-of-use public health system. The Family Benefit became universal and reached most families with children (and remained until dispatched by Ruth Richardson in 1991). This was all financed by a tax of one shilling in the pound, or 5%. The Act also established a Social Security Department to administer monetary benefits while medical care benefits were administered by the Department of Health.

I’m a great fan of the idea of the welfare state and socialised medicine. I like the idea that we collectively care about those who may be or become vulnerable and pay taxes so the state can look after them – from each (person) according to ability (to pay), to each according to need.

An immediate effect of the Act was that people started using the free health system and flooded the hospitals and medical services. Many were addressing long neglected health needs. Ongoing expectations of health care subsequently rose and have continued to rise over the decades.

The passing of the 1938 Act was largely due to Minister of Health and Education Peter Fraser, soon to become Prime Minister. He would also have a significant role in the development of the United Nations. He and his wife Janet were from the generation born in the 1880s who had seen and endured social, economic and health deprivation in their native Scotland and had immigrated separately to New Zealand early in the 20th century. They were among the founders of the NZ Labour Party. Once they held political power, the establishment of a welfare state reflected decades of activism and idealism from their generation.

Unfortunately, in the 1980s another Labour Government began to dismantle the welfare state. Then the 1991 National Party’s ironically named ‘Mother of All Budgets’ cut the universal family benefit and numerous other benefits and was effective in destroying many of the principles and effects of the welfare state. Sadly, few remnants remain today. Health funding is ring-fenced and tightly contracted for targets, not needs.

Aside from its gradual dismantling, the public health system of  the "cradle to grave" welfare state has also been challenged over the decades by three conditions experienced by children: intellectual impairment, child cancer, and autism. There are lessons to be learnt from these conditions about making a public health system sustainable over time.

Intellectual disability

In 1938, children with intellectual impairment were not expected to live long or to need much support. Care responsibilities fell either on the family (mainly the mother), or on the state through institutionalisation. However, by the early 1950s World Health Organisation best practice advocated community support and services for children and the growing numbers of adults with ID. New Zealand parents wanted such services, and for the new United Nations Declaration on Human Rights to apply to their children too.

Keith Anyon was born with Down Syndrome in Wellington in the 1930s. For years his parents battled for his education, community participation and employment. They worked with other parents to found the organisation that became the IHC, now the main advocacy NGO for intellectual disability, in 1949. Unfortunately, the government of the 1950s not only denied their requests, but instead went in the opposite direction by advocating the existing institutions expand into large ‘mental deficiency colonies’ and that parents send their children to them from 5 years old and forget about them.

Although the last of our large institutions closed in 2006, the remaining welfare state still struggles with the provision of appropriate support for our 30-50,000 citizens with ID. Life expectancy is about 20 years less for people with ID, than those without.

The state has largely failed them and their families.

Child Cancer

Next, let us consider child cancer. I expect that cancer killed children pretty quickly in 1938. It was considered a terminal illness into the 1980s when children began surviving following improved and expensive interventions, such as radiotherapy, chemotherapy and bone marrow transplants. Today about 150 children under 15 each year are diagnosed with cancer and about 80% can expect at least a five-year survival rate (which, unlike adult cancer, is similar across ethnicities). Today there is expectation of treatment, and increasingly of cure.

So a child diagnosed today with one of many possible cancers is likely to be subjected to treatment that may take several years. It may involve complex chemotherapy or increasingly precise radiotherapy. Apart from the cancer treatment itself, there is likely to be cognitive and other functional testing, and ongoing checks for long term effects.

However, increased expectation of a cure has also meant ever-increasing costs. In the 1980s New Zealand had five tertiary child cancer centres – today we have only two. Charities, such as the Ronald McDonald houses and the Child Cancer Foundation, are expected to provide much of the additional support and psychosocial costs, but the bulk of it lands on families.

Is that what the architects of the 1938 welfare state would have envisaged?


Leo Kanner (an Austrian living in the United States) first named autism as a separate condition in 1943 (five years after the SS Act). Prevalence was assumed to be very low until the 1990s when several things happened: it became to be seen as a ‘spectrum’ and umbrella name for a range of previously rare conditions; the DSM-4 named a new condition called Asperger Disorder which did not have co-morbid Intellectual Disability; and in NZ a mother killed her autistic daughter, which led to public focus on the condition. We now have a conservative estimate of about 50,000 New Zealanders, across the age range, considered to be on the autism spectrum. However, support from the state is limited.

One reason is that in the early 1990s responsibility for disability support services went from Social Welfare into Health (which is why in NZ we refer to our ‘health and disability’ system) and a gatekeeping process of needs assessment and service coordination was developed. Support criteria covered those only with physical, intellectual, or hearing/vision impairment. A separate process was developed for those with mental health issues. But a condition such as autism without co-morbid ID simply fell through the gaps, and did until 2014. Meanwhile numbers of people diagnosed have escalated.

A decade of policy work went into developing the comprehensive New Zealand Autism Spectrum Disorder best practice guideline published in 2008, with more than 300 recommendations. However, seven years later only a tiny proportion has been implemented. So the remnants of the welfare state continue to fail many people with autism and their families.


So what happened? Why didn’t the 1938 Act future proof the public health system for the needs of future children? One conclusion – and we see the evidence in many areas ‒ could be that children are not politically powerful. In contrast to adult men, perhaps. For example, many major health and disability initiatives, from the concept of rehabilitation, the treatment of Post-Traumatic Stress Disorder, the development of plastic surgery and assorted technology, to the Accident Compensation Commission, came about because men, including politicians, were injured in wars.

So focussing on children is an ongoing policy challenge

In summary:

  • New Zealanders will continue to expect the best and latest of what the medical world offers.
  • Expectations of support and health care for expensive-to-treat groups such as disabled children and elderly people will continue to rise.
  • New conditions of childhood continue to be identified  (eg Fetal Alcohol Spectrum Disorder, Auditory Processing Disorder) but there is little policy preparedness to support these children and their families.
  • Children are not politically powerful.
  • When we aren’t collectively vigilant political decisions will allow health disparities to increase.

How can we reinvigorate and sustain the welfare state so it can provide the best treatment and support for children and families, regardless of any health or disability conditions they might face? Where are the Frasers of our age? How do we encourage and nurture a new generation of social reformers to establish and future-proof the health, welfare and disability support needs of children?