Access by Various artists

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

http://action.greens.org.nz/education

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

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?

Autism

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.

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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? 

The New Zealand Paralympics swimming team is returning home with a haul of medals.  Sophie Pascoe and Mary Fischer have a bucket each and this is of course a fantastic achievement.  These two and other athletes that compete with a disability are game-changers. They break down stereotypes of what living with a disability means and they also make us proud as a nation.

But I don't want to perpetuate the myth that because someone is a disabled person, or disabled sports person, for that alone they are to be idolised or deemed worthy of admiration.  Obviously, Oscar Pistorious was phenomenal on the track but a violent villain off.   

In this blog post I want to note moments in time and people that have been or are "game-changers". Certain moments and people have changed the world somehow just by being themselves but also by being challenging and brave. And actually our own behaviour and attitudes to sports have the power to change hearts and minds on attitudes to diversity.   

A few game-changers that come to mind are dyslexic Muslim, anti-war boxing champion Muhammad Ali; former decathlete, transgender Caitlyn Jenner; and most notably NZ’s rugby world cup champion, and now mental illness champion for the “Like Minds" programme, former All Black John Kirwan.  

By acknowledging his experience of mental illness,John Kirwan,  changed the rules on what it is to be a Kiwi bloke. We don’t always have to harden up – we can seek support.  He has helped to reduce stigma and discrimination, and possibly saved lives.  HE changed the game.

But JK experienced a lack of tolerance for his depression.  Towards the end of his provincial career, and before he "came out", he would come onto the field minutes after his teammates and seconds before the kick-off whistle, presumably because of mental illness-related anxiety.  Because of this, the crowd would unsportingly harass and "boo" him.  

Christchurch, Fijian rugby player, Sake Aka has suffered racist abuse from spectators. My colleague, the Race Relations Commissioner and world champion squash player Dame Susan Devoy, called the racist abusers on their behaviour and urged the spectators at that game and on sidelines around the country to not be bystanders – to stand up against these abusers.

Even blind people like me can be armchair sports critics rather than supporters, and like others I have my view on special moments where matches are won and lost.  But by supporting sports people of all abilities and races we too can be game changers. The "home ground advantage" due to the overwhelming crowd support illustrates this effect.

I remember during the 2011 Rugby World Cup final, the critical moment was when the fifth pick for first five, Stephen Donald (whose previous performance for the AB’s was not a winning one) was about to run onto the field to replace an injured player.  Half a dozen spectators in different parts of the ground started a welcoming cheer that the whole crowd followed and amplified.   The unlikely hero stepped up and delivered.  But I think that any less of a welcome could have undermined the new player’s and the whole team’s confidence and cost NZ the world cup. 

I have blogged previously about game changer Robert Martin, the Kiwi with a learning/intellectual disability who went to the United Nations, exploded a few myths himself, and changed the world. Prior to this, his first adventure onto the world stage was as captain of the NZ Special Olympics soccer team.   He wears his badge so proudly.

 I have heard athletes talk about the fun they have, the quality of life participation in sport gives them, and how, having performed to the applause of a packed stadium, they come away from the games with a sense of dreams fulfilled.  It is the support that so often makes the difference.

My call to action is to at least be brave in our attempt at including all people without prejudice, in our schools, workplaces, and communities, giving everyone the chance to win, and be a game changer. 

Paul Gibson, Disability Rights Commissioner

A century on from our first polio epidemic and 50 years after our last, many New Zealanders still live with the after-effects of the disease. Finding appropriate and timely services and support is as hard for them as any other impairment group.

However, they tend to be older and more stoic than the younger generation of disability advocates and their needs and stories are often overlooked. We don’t know how many New Zealand survivors are left, but many of us have family and friends who are affected.

From the first epidemic in 1916 until the last in 1961, polio was a feared disease, as it mainly affected children and young adults. Initially known as Infantile Paralysis, it struck randomly, had no cure and peaked in regular epidemics. There were about 10,000 reported cases in NZ over 50 years.

But by 1960 both the Salk and Sabin vaccines were available in New Zealand and new cases diminished apart from those infected overseas. Many years after their original infection, survivors started reporting new symptoms and in the 1980s the condition of Post-Polio Syndrome was identified. Internationally, the battle to eliminate polio continues, with fewer than 40 new cases reported so far this year.

‘Poliomyelitis’ means grey marrow and ‘itis’, inflammation – so the condition more commonly known as polio is an inflammation of the spinal cord, or central nervous system. Polio is a highly contagious viral illness which enters by the mouth or nose then travels down into the gut.

There are three types of poliovirus. The virus spreads from the gut into the blood and lymph system to the spinal cord. It attacks nerve cells or motor neurons in the spinal cord, disrupting their pathways, although other neurons can sometimes take over and form new pathways. The virus is present in the faeces of an infected person so can be spread by hurried hygiene, or via infected mucus.

The incubation time in the body is usually about one to two weeks. Symptoms can include digestive upset, fever, stiff neck, muscle and nerve pain, and sensitivity to light (similar to meningitis). It often manifests as a mild cold, or flu like symptoms, for several days following which muscles suddenly become extremely painful and fever intensifies. Commonly affected are the arms, legs and lower body; most serious is bulbar polio which damages muscles around the diaphragm, lungs and throat, threatening breathing and swallowing.

More than 90% of people infected have mild or no symptoms while others experience temporary pain and paralysis. Fewer than 1% of those exposed to the virus are permanently impaired. So it can be widespread in the population but only a tiny proportion of those infected will be left paralysed.

Polio paralysis is different from spinal cord injury as the feet and hands still have feeling, such as feeling the prick of a pin. Some neurons and muscles can regrow if not too badly damaged. Immobilisation of the affected limb is thought to encourage muscular atrophy (withering) while massage and physiotherapy may help muscle cells regrow.

There is evidence that polio has been around for centuries. But the first reported cases in New Zealand were in 1880 and the first recorded cases in 1914 in the Otago Southland area, and that outbreak led to polio becoming a notifiable disease.

Polio provides a canvas for evolving theories of epidemiology and interventions. One theory for why it started to increase in the early years of the 20th century with the first big epidemic internationally in 1916 is that as hygiene improved and diseases like diphtheria and dysentery decreased, polio took hold.

It was assumed to affect only children, because some believed that the germs which caused the condition lived close to the ground and thus only infected small people. However, natural community immunity probably meant at first only children were affected. By the mid-20th century more young adults were becoming victims.

Polio scared families and communities, as it struck apparently randomly and crossed class lines. It caused considerable stigma for affected families. Schools were often closed for several weeks and families confined to their disinfected homes to prevent further contamination.

While many infected children and adults were sent to one of the many polio hospitals across New Zealand, often for months at a time, others were treated by GPs or small local hospitals, where knowledge about polio varied. Survivors commonly recall being sent away from family for weeks or even years for hospital treatment and rehabilitation.

Although there were New Zealand polio cases intermittently through the years several epidemics of over a thousand reported cases each happened in 1916, 1925, 1936-7, 1943, 1947-8, 1953 and 1955-6. 1961 was the last and the smallest. It is likely that over the years cases were underreported, with suggestions that only about 20% were actually notified. More than 800 New Zealanders died from polio between 1916 and 1961. Epidemics peaked over summer and some survivors remember a pool swim as their point of infection.

By the 1930s, standard treatment was immobilisation of the affected limb initially with plaster, often for long periods. A calliper (also known as irons), consisting of a metal plate under the foot laced up around the leg, provided permanent support.

Elizabeth Kenny, an Australian nurse who served on transport ships in WW1, developed an innovative treatment. She pioneered work in muscle rehabilitation using regular application of sharply contrasting temperatures, and massage. After she moved to the US in 1940 her treatment became widely used. Her advocacy of massage and opposition to long term immobilisation became the basis of the new science of physiotherapy.

For those unfortunate enough to have impaired breathing as a result of the polio infection mechanical help was required. Treatment consisted of lying in a negative pressure ventilator known as an iron lung – a coffin-like structure enclosing the whole body apart from the head – which stimulated the breathing reflex. The patient might stay in that box for weeks or even years. There was a high mortality rate for those affected, as pneumonia was a constant risk in the days before routine administration of antibiotics.

Philanthropy has played an important role with polio over the decades. During the Depression it was particularly tough for many families struggling to support their affected child.

Orthopaedic surgeons, frustrated at the lack of services for polio victims who couldn’t afford hospital care, therapy or aids, started lobbying. Surgeon Dr Alexander Gillies spoke to the Wellington Rotary Club as early as 1930 about the needs of the estimated 5000 ‘crippled’ children in New Zealand – those with polio and other conditions such as spina bifida. In 1935 Dr Gillies and Charles Norwood of the Wellington Rotary Club launched the New Zealand Crippled Children Society.

The CCS was gifted a large home in Takapuna, Auckland, and major donations, including £10,000 from Mr and Mr Wilson. The Wilson Home became a hospital for physically disabled children, including those with polio.

With help from Rotary, CCS branches were set up around the country to provide home support, travelling clinics, advice and aids and appliances. War experience provided valuable training to orthopaedic surgeons such as Dunedin’s Major Renfrew White, who brought his Second World War experience of fixing up injured servicemen into civilian work with polio.

In the mid-1940s another philanthropically-minded landowning couple, Thomas and Jeannie Duncan, established a trust to treat polio. They founded a polio hospital in Silverstream near Wellington, later relocating to Wanganui. The Trust paid for several health professionals to go to the United States for training in the Kenny technique.

Elizabeth Kenny’s nephew Bill Bell, later helped by his son, worked at the Wanganui hospital until its closure in 1979. Children and adults from across New Zealand attended the hospital for treatment and lived there for months or years, or returned regularly. The therapy consisted of daily intensive heat pack treatment, followed by long and sometimes painful physiotherapy sessions to stretch and strengthen muscles.

The arrival in New Zealand of the first vaccine in 1958 was a major event and few people here have contracted polio since 1961. But years after their initial infection, many adult survivors experienced new symptoms of pain, fatigue, muscle weakness and atrophy. One theory was that the nerve ends or motor neurons which grew extra ‘sprouts’ to compensate for the earlier damaged ones have a limited life. This condition is known as post-polio syndrome.

The vaccine story

The polio vaccine story is fascinating. President Roosevelt was apparently a polio survivor. He was 39 when he became paralysed in 1921, presumably by polio, although he was older than most victims. Paralysis permanently affected both his legs but his impairment was hidden from the public and for each public appearance there was an elaborate effort to prop him upright with heavy metal callipers.

One of only three known photos of Roosevelt in a wheelchair. Here with girl wearing a leg calliper. (Wikpedia)

Roosevelt’s interest in polio was widely known and before he became president he established a rehabilitation centre in Georgia. It apparently had a ‘whites only’ admission policy on the assumption that polio only infected white people.

In 1938 he established a foundation to fight polio. A well-known entertainer suggested people donate dimes (10 cent pieces), and the foundation then known as the March of the Dimes provided funding and advocacy for a vaccine. Meanwhile, it seemed black people could indeed catch polio and in 1941 a polio research centre was opened in the black university at Tuskagee, Alabama, to train black doctors and physiotherapists.

Early researchers attempted to develop a killed vaccine from monkey spinal cords. But the first person to conduct a human trial for an attenuated oral polio virus (OPV) was Polish born American immunologist, Hilary Koprowksi, in 1950. An attenuated virus is a live virus diluted to safe enough levels to cause an immune response, but not illness, in humans. Animals are often used for the attenuation process ‒ in this case rats, later monkeys.

After first taking it himself, Koprowski tested his attenuated Type II (one of the three strains) OPV on one child in a New York state institution for children with intellectual disability. When that child seemed OK, he tried it on 19 more. The practice of testing drugs and other experimental interventions on institutionalised disabled children and adults was common. Some thought the testing, particularly of a live virus, premature. Fortunately, none of the children became ill and all developed Type II antibodies.

Then the prolific HeLa cells became available. Henrietta Lacks was a black woman who died of cervical cancer in 1951. Her HeLa cancer cells had the rare property of reproduction in the laboratory and became the basis of modern medical research, including polio. Science writer Rebecca Skloot’s story The Immortal Life of Henrietta Lacks, of how Henrietta’s cells were exploited without thought to ethical principles or any compensation for her family, is one of our modern treatises on the intersection of clinical research, ethics, race and gender. But in 1951, the rush was on for a cure for polio.

Koprowski’s live virus proved difficult to prepare in the quantities required. Jonas Salk, a US virologist, instead developed vaccine from the HeLa cells for all three polio strains from the dead virus which could be injected. He then found some captive intellectually disabled children in institutions on whom to test his vaccines in various combinations, and found they produced relevant antibodies. A massive trial then immunised more than a million US children in 1954, and the vaccine was licensed in 1955. In a magnanimous gesture, Salk never patented the vaccine. Immunisation via the IPV (inactivated polio vaccine) injection came to NZ in 1958 with much publicity.

Three men holding a carton of Polio Vaccine, standing outside the Tasman Empire Airways Ltd office. 1958 Evening Post newspaper. Ref: EP/1958/1019-F. Alexander Turnbull Library, Wellington, New Zealand.

Meanwhile, another Polish-American medical researcher, Albert Sabin, adapted Koprowski’s live virus to develop vaccines for all three polio strains. He had spent years attenuating the polioviruses so that they would induce immunity but not be iatrogenic, meaning the vaccine would not itself cause disease.

Sabin worked with Soviet health officials who were interested in a cheaper alternative to Salk’s vaccine. His OPV was given to 10 million Soviet children in the mid-1950s. It had several advantages over the Salk vaccine: it was delivered orally so did not require an injection; it went through the digestive system in the same way as the virus, and human excrement containing vaccine remnants helped create weak immunity in the community. A risk was that the live virus could also revert to the virulent form.

The US Surgeon General recommended licensing of Albert Sabin’s live Type I poliovirus vaccine in 1961. Vaccines for Types 2 and 3 followed and a 1963 vaccine combined all three. Vaccination against polio is now part of the immunisation schedule for all New Zealand babies, as it is in most countries.

Despite the availability of a safe vaccine for more than 50 years, the story of polio infection unfortunately continues. Rotary International took on the cause in 1979 with its End Polio Now campaign. They named 24 October as World Polio Day to commemorate Salk’s birthday in 1914. The Bill and Melinda Gates Foundation also funds campaigns.

By 2011, polio was almost eradicated globally with only three countries still reporting cases: Pakistan, Afghanistan and Nigeria. However, politics intervened. That year, the CIA used a hepatitis vaccination programme as cover to help locate and kill Al Qaeda leader Osama bin Laden in Pakistan. Several polio vaccinators – many of whom were women earning precious money by giving out drops – as well as security personnel, were then attacked and killed. Rumours abounded that the vaccine contained pork or was a plot to sterilise Muslims. The Taliban banned vaccination in their area of Pakistan near the Afghan border.

So in 2014, polio was spreading again in Africa and Middle Eastern conflict zones. Many of the new infections in Syria were young children who had missed their immunisations due to the war.

In April 2014, the World Health Organisation met to consider how to contain the spread of endemic poliovirus (already present in the population) and wild poliovirus (usually spread by adult travellers). The WHO declared the spread a Public Health Emergency of International Concern. Such warnings are very rare but it appeared to be effective and the last resistant area is the region around the Afghanistan-Pakistan border. In May 2015 the World Health Assembly adopted a resolution to finish polio once and for all. Only 34 new cases have been reported this year – 28 in Pakistan and six in Afghanistan. But there is still risk, particularly in conflict or disaster zones, as one case can mean 200 people are infected.

The polio story is not over yet.

Zero is the amount of privacy in my life.

Zero privacy within my family – and pretty close to zero as a family to the outside world. At least it can very often feel like that.

I have a 16 year-old who still feels entitled to enter any room at any time with no warning and no consideration for what might be happening on the other side of the door.

Those awful toddler days of chatting on the loo, being interrupted on the phone and unwelcome bed guests are with me still.

Even her 12 year-old brother, in the throes of puberty and its crippling need for privacy has to put up with Claudia sitting on the loo shouting at him while he's in the shower. Poor boy.

Until we find another house (with two bathrooms) Claudia attempts to enjoy all our most private moments with each of us, at her whim.

As a family we are also exposed to the scrutiny of others.

People with clipboards and checklists coming to see our spaces, judge our faces, rate our places, manage our "cases".

Often I see Claudia being routinely ignored in the assessment processes.

In the early days there was a someone on our house with a clipboard and a list and a job she could see a career path in, and we were just a young family with a disabled child and she asked me – without averting her eyes from the task at hand "Can she dress herself?"

A few moments passed where I wondered if I was actually there, right there right then, hearing this- or if I was dreaming – and the silence grew and her eyes lifted not from her clipboard – until I said:

"She's right behind you – propped up against cushions because she can't yet sit up. Do you think she can dress herself you unbelievably stupid girl, turn around and see for yourself!"

Except I didn't actually say that. In real life I just said '"Um. No." and hoped that didn't count against us.

But who would know?

As if other people routinely expecting to know the details of life within our four family walls isn't bad enough, technology, excellent as it is for Claudia, can now conspire with her to expose us even more fully.

As Claudia explained earlier this year on her Facebook page:

That's right, I was in the unholy position of confirming to Claudia's teacher that yes, we did know the man taking his clothes off in the pictures, yes it's her Dad, no we're creepy or weird just very, very, very embarrassed now.

But who know photos taken for a laugh on my phone would end up on Claudia's iPad? Well, yes now we know!

My sister has referred to her as "I,Claudia" ever since, Steve has still not been brave enough to appear at school and iCloud has since been disabled on her iPad.

Being assessed and judged by others is pretty awful, especially given the fact the scrutiny is usually to determine some level of support.

So with ORRS (school funding levels) applications and many others, we are advised to stress the disability in order to be clear about how difficult it all is, which is of course, depressing.

Other people surround themselves with positive affirmations on post-it notes on their fridges and monitors ; "You're Beautiful!" "Make Every Day Count!" "I Deserve to look Good in a Bikini!"

For a long time it seemed as though our daily mantras were a ceaseless round of "Our Life is Hard !– So Very Hard!" "We Cannot Do Things Other Families Do!" "We Are Doomed To A Life Of Struggle!"

So we try to consciously surround ourselves with only positive people, use our finely-honed bullshit detectors to release people who are draining and find optimism where we can.

We try to acknowledge and appreciate the things Claudia contributes to our life .

And these are significant ; we listen to a lot of music, Neil Diamond, John Denver, Muse, The Wiggles, Radiohead, Nick Cave, bagpipes and brass bands – she loves them all equally loudly.

Nick Cave's 'Red Right Hand' and the Headless Chickens' 'Gaskrankinstation' get her extremely excited and she stomps around clapping excitedly.

'Silent Night', John Denver's 'Sunshine' and Radiohead's 'No Surprises' make her cry, which is moving and sad. But she insists on sitting through them with tears the sliding down her face.

We have seen every Muppet movie repeatedly and still get to enjoy Chitty Chitty Bang Bang and The Italian Job (the original). We can park in the disabled parks.

We have a family vernacular thanks to her: at night the "mops" come to fly at the lights, we have our friends "Din" and "The Hons"

We have sentences ; "who's that phone?" "because why?" and a unanimous alarmed "ahhhh!" in her exact F# pitch when something goes wrong.

She even named her brother Jasper "Zabba" which has turned out to be pretty passable as far as nicknames go.

These words and phrases created by Claudia are used by us all now – that's our family lingo.

Some of the people necessarily in our lives have been lured in with money (pitiful as these rates usually are); employed to be her babysitter, support worker, friend.

They have to be friends with all of us, they have to be not more insane or more needy than we are, be flexible and fun, tolerant and discrete.

These people are hard to find, and we've had some of the bonkers ones.

But they have been made up for with the truly life-saving gems who we now count as family and on whom we rely.

So while it's undeniably annoying our family doesn't get the levels of privacy others do, and that we still have someone, now adult-sized, appearing at our bedside, throwing back the covers, climbing in with her pointy elbows and demanding a "tickle back", it's just our lot – and that's okay.

Because it's much worse to think of a time when we won't be here to hug her in the night or she won't be with us to demand it.

Which is why it's worth not closing ranks or obsessing about our lack of privacy.

Because if some of the people who arrive in her life stay interested in her life to ensure she has the support she needs, then that is peace of mind. And it will all be worth it.

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Fiona Mckenzie blogs at My Perils of Wisdom.