Genetically my child is one in a million — maybe one in 10 million or 100 million. At the time of writing, there is no diagnosis for her disabilities, though another round of tests are underway. In any case, her condition is extremely rare and it may even be a de novo condition: a new genetic mutation. Whatever it is, it has affected development in particular aspects of her brain, and given our child some interesting physical characteristics that are indiscernible to almost all but the trained eye (though my child’s general presentation in a wheelchair or walker and her behavioural characteristics are a dead giveaway of a disability).

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There was no dramatic diagnosis, but more a gradual unfolding over time. It was eight months after her birth when my husband and I discovered that our daughter had developmental delays, and almost a year before an MRI scan revealed low myelin (fatty insulating tissue) and underdevelopment in a part of the brain. Another two years later we came to terms with the fact that these, along with seizures, constituted significant and permanent physical and apparent intellectual disabilities.

Every state in Australia offers different services, and when my daughter was younger my husband and I seldom left our home for time together as a couple; we could not ask anyone to babysit when they would be responsible for a child with significant needs, which would entail first aid knowledge and the physical capacity to lift. Although we were theoretically eligible for a few hours of such qualified respite care, the service in the state where we lived was so under-resourced and with such stringent criteria that this became a very rare option. We ventured out for an evening twice in two years.

At the same time, necessary equipment was not a concern. A huge warehouse of disability equipment was available for permanent loan to children or adults who required it. It was old or pre-owned, but we could clean and alter it to be fully functional at little cost.

Also, we were able to access some limited therapies through state services, and we took our child to hydrotherapy and an early-intervention program off our own bat. The early-intervention program was largely staffed by volunteers, run on little money, and constantly under threat of closure due to the lack of funds.

After we moved to the ACT, our respite and equipment situation was reversed. We were eligible for a subsidised, user-pays respite care service — and we remain grateful for the 12 hours a month we generally receive to undertake activities by ourselves or with our other children who do not have a disability. Going to the movies as a whole family is simply not an option when one of our children grunts, groans, giggles, and gulps without warning; and going bushwalking or bike riding are not exactly wheelchair-friendly activities. Respite time, though the service is frustratingly unreliable, is instrumental to our marriage relationship and to our sense of being a typical family — and it is even more crucial to single parents of children with special needs.

Courtesy Moira Byrne

Caoimhe in 2011, at her primary school graduation.

Equipment is another story; here we pay for chairs and wheelchairs. We cannot consider a specialised and highly technical walker like the one our daughter uses at school because of its exorbitant price — even though we know that continual use would pay dividends for our child’s strengths and abilities (and our backs).

Unfortunately, most of these support systems, in any state, are tied to particular diagnoses. It’s the most vocal interest groups that get the most funding and the best programs — and the most organised groups form around diagnoses. So, it is not surprising that some families are given — maybe push for — inappropriate diagnoses of conditions in order to meet funding criteria. Of course, such haste and incaution can leave a person pigeonholed for life.

Without a diagnostic label for our daughter, we are unable to access many programs on offer.

Courtesy Moira Byrne

Caoimhe in 2005. Her condition is extremely rare, maybe even a new genetic mutation.

Another consequence of those diagnosis-based disability groups — which are enviably successful in applying political pressure, building membership and obtaining a media profile — is that policy programs get designed for their members, but only their members. For example, the well-intentioned “Better Start’’ policy of funded early-intervention is restricted to only the most common disabilities which have the largest pressure groups, and are subject to an eligibility threshold.

Many disabilities are extremely rare — but there is no mechanism that allows for those to get considered under diagnosis-specific policies. Our geneticist lamented the absence of professional expertise in determining which prescribed conditions were deemed eligible for support. While almost every policy has thresholds, often the criteria can keep out those the policies are designed to serve. Many fall through the cracks.

We want more for our child, no matter the profundity of her disability. And we are aware that we really do not know how much she actually understands. She is in high school now. Our child still does not talk (but communicates in a way we recognise) and walks with support in a walker at school.

She requires considerable lifting and constant assistance with eating and every aspect of personal care. When we go out, we use a wheelchair for her. Over time, we will require a hoist to continue personal care, so we have altered our bathroom accordingly; fortunately the expensive modification was partially subsidised under a disability-housing program. We have muddled along with all of these things, being thankful that we are both able to work in stimulating and stable jobs. Yet in recent times our attention has turned to our child’s future post-school.

Even among others dealing with many of the same issues, a parent can feel isolated. I attended a disability seminar on planning for the future a year or so ago where workers talked about how a highly functioning person with a disability was able to be placed in work. I became overwhelmed when I realised how few options there were for my own child, who is far removed from the functional ability of the celebrated examples. I resented being present in a disability forum and yet remaining an outsider. I wondered what options there were for my child. Day care options for young adults with physical and intellectual disabilities are very rare — and interactive, engaging and educational care programs even rarer. We do not have the money for a full-time care support worker for our child.

Courtesy Moira Byrne

Moira with her husband and daughter at six weeks old, a photograph labelled, “didn’t know what was coming”.

I see life in society contracting for my child, and, to be honest, for me too. Already, I grieve for possibilities that might have been for each of us, and the thought of life ahead fills me with dismay at times. Both my child’s and my life are rich through the relationships we have with others in our daily activities. The things that add joy, interest and fulfilment to my life — creativity, making a contribution, using my skills, building my career, opportunities, flexibility — could well collapse under the weight of “no alternative’’. I reluctantly admitted that when our child left school, I would leave the workforce: a practical choice as my partner’s income is higher than mine. I would care for, assist and accompany her involvement in society. In my better moments I focused on preparing for this future, knowing that although my own participation would be curtailed, I could at least hope to continue casual or contract work as opportunities arose.

Since then we have determined that ideally our daughter’s participation in society would be in our own business in which we could support our child to work. We see any work, however humble, as an important signal of contribution as well as an opportunity for our child’s personal development, and are considering options in this regard. This work would be a tangible step towards a valued social role, a vital factor in the societal acceptance and involvement of people with disabilities. Dr Wolf Wolfensberger’s Social Role Valorisation theory submits that if a person holds a role that is valued by others in society, they are much more likely to receive the wider benefits of society: respect, belonging, self-development, participation, and material well-being, to name but a few. I am aware that many other people’s economic circumstances would not permit them to even countenance initiating a business. This is a major obstacle amid the expenses of medical experts, medication, equipment, home modifications and personal care needs, as well as family expenses.

On a personal level, we are mindful that every dollar we spend to provide for our child with a disability is a dollar less to share with our other children and our home and family more broadly. While delighting in the wheelchair’s utility, I mildly begrudge the thousands of dollars which meant our plans to rebuild our decaying pergola were significantly delayed. Similarly, our priority for home extensions to accommodate our evolving family means that we cannot buy a wheelchair-modified vehicle in the foreseeable future. We also have opportunity costs: moving to a rural area, working certain jobs, attending particular activities are not viable options. All the while, I am reminded that many people with disabilities and their caregivers do not have the advantages that we do, in social networks, education, work, respite, and more.

These costs have other effects. One effect is social isolation because it is not a simple exercise for many to leave their house; I find this myself when a trip to the local shops for bread becomes a 45-minute exercise, mainly in practising my skills dismantling and reassembling the wheelchair. I can only imagine what leaving the house is like for others. A further effect is a lack of informal support networks, which in turn affects the physical and mental health of both people with disabilities and caregivers. Another is the limitations placed on freedom and opportunities to make choices and fulfil the potential of people with disabilities and caregivers, including working opportunities to bring increased income.

Such costs and effects are not understood by the community, even though anyone can easily become disabled or have a child with a disability. And while risks of disability are shared in motor vehicle accidents through compulsory third party insurance, medical malpractice through doctors’ medical insurance, and workplace injury through work safety insurance, there is no risk-sharing for disabilities caused by other accidents or illnesses or by the simple fragility of human reproduction.

Ella Rubeli/The Global Mail

The proposed National Disability Insurance Scheme (NDIS) would provide this insurance for those affected by disabilities that are not the basis for litigation. It also provides for people with disabilities based on the supports required to increase capability, rather than assuming welfare dependence of many people with disabilities and caregivers. The Productivity Commission proposes that people receiving support from the NDIS have a disability that is likely to be permanent, affecting self-care, communication, mobility and self-management. If implemented as designed, the approach is based on need rather than on a “tick-a-box’’ list that in the past has neglected rare, complex or undiagnosed conditions — frequently some of the most significant disabilities.

And this is one of the scheme’s greatest strengths. It evens the ground for people with disabilities, and the community at large, by providing for people with disabilities on the basis of necessity. While it is impossible to compare experiences of disability, it appears to me that many people receiving government support have the ability and the will to contribute. However, these people are left dependent through a combination of perverse incentives, a lack of policy innovation and inaccurate perceptions of disability and caregiving in the community.

More importantly, the NDIS should deliver some autonomy for those it is designed to serve. Rather than having services dictated by providers, those affected by disability will be able to determine their own service. Substandard, erratic or inefficient services and bureaucracies need not exist simply because they are propped up by government funding.

Until serious discussion of the NDIS took place, there was little hope that change would occur faster than a glacial pace. Critics of the scheme argue that the policy does not provide any extra funding for services for people with disabilities, and they are right — in the short term. But in my view, the scheme is an opportunity for a major overhaul and a chance to build a system from the ground. In the long term, this is better than a quick fix of funding to service providers that may not deliver on their remit.

Admittedly, the focus on the NDIS has detracted from other important disability reforms, such as widely accessible public forums and spaces and dismantling barriers to the participation of people with disabilities and caregivers in the workforce. Moreover, the scheme cements perceptions about disability from a therapeutic or charitable perspective of disability, rather than a social model of disability. In other words, it continues a perception of disability premised on deficit and dependence, rather than observing disability as a social construction and looking at the deficiencies in society that prevent the full participation of people with disabilities (and their caregivers).

We love our child dearly, and few others understand that depth of love is not conditional on disability. Our three other children are equally loved — and as an aside, they are amazing siblings to our disabled child, with wonderful attitudes of acceptance and generosity in interacting with everyone they meet. Like many who have been altered by disability, I would not reverse the situation now. My daughter’s disability has changed me for the better, even with all of the strains and some health effects.

I’m not sure I would have understood the issues faced by people with disabilities, or their caregivers. I am not certain I ever would have understood the impacts of current disability policy, as lived by those managing disabilities every day. I don’t know if I would have appreciated the importance of hearing directly from people with disabilities or their caregivers in the public sphere. I cannot say I would have agitated for change so much without this experience. And ironically, the decision my partner and I took to never refuse an opportunity on the basis of our daughter’s disability has meant that we have seized chances we may otherwise not have considered at all. My hope is that by the time she leaves high school, the NDIS will hopefully be in train to start nationwide, other disability reforms will be underway and every person affected by disability will be able to pursue their own opportunities.

Moira Byrne is the parent of four children including a daughter with significant physical and intellectual disabilities. She recently completed a PhD in political science at the Australian National University and works part-time in social policy and as a researcher.