A week of advocating for our family

In New Zealand right now it is a critical time for the disabled community. Late last year our government announced that there would be a Ministry for Disabled Persons (MDP) starting from 01 July 2022. The name has not been finalised yet, so for now, I will refer to it as the MDP. The vision of the Ministry is to lead the realisation of a true partnership between the disability community and government, and to help drive ongoing transformation of the disability system in line with the Enabling Good Lives (EGL) approach. The EGL approach has been trialed progressively in three areas of New Zealand, (Waikato, Christchurch and Mid-central), since it was introduced 9 years ago. You can read about that in full here. https://www.enablinggoodlives.co.nz/

It’s a world first for a country to dedicate a Ministry to the welfare and needs of the disability community. It makes me proud to be a New Zealander that this step towards equity has been taken. Just as New Zealand women worked hard to get the vote first back in 1893, the disabled community have worked tirelessly to push government to make this happen. I appreciate and respect those who have worked hard to make this a reality.

The timing of the MDP has been synched with other governmental changes, as the Labour government devolves the District Health Boards and introduces Health NZ and the Maori Health Authority. These are bold, brave moves that mean big changes, a lot of cost to restructure the current system and a lot of fear and worry for families as to how they will be affected. As Rachel Hunter used to say in the Pantene ad – “it won’t happen overnight, but it will happen”. However, while I can be patient and know there is not a magic wand, my experiences watching the Establishment Unit have Ieft me and other families concerned that family will not be represented well enough once the Ministry is operating.

We are told that our supports will continue and not to worry. The first step in establishing the Ministry is to simply move over ONLY the existing contracts for our Disability Support Services (DSS). This means different services for different families. There are families using carer support, residential care, ACC funding, ORRS funding, High Needs, and Very High Needs funding, EGL, Supported living payments (SLP), Child and adult disability allowances, and many other supports administered via the Ministry for Social Development or Ministry of Education. It is truly a minefield! Many of these funding streams are not part of DSS. Long term, they are saying there will be better collaboration, but right now there just seems to be short term confusion.

For us, we have funding support from the DSS and from Counties Manukau DHB (CMDHB). Plus, Mitchell has support from the Ministry for Social Development in the form of supported living payment (SLP) and he would have a disability allowance, if I ever got the paper work finished. When he changed from being a child to adult, everything changed and I have not kept up with all of the administration. It does mean we don’t receive a benefit he is entitled to, but sometimes it’s just too hard keeping up with it all and that is what worries me about adding another ministry to our list of people we have to deal with. I mistakenly thought that the idea was to bring all the funding streams together – but hey, ho, because Mitchell’s cause of disability is ‘health related’ we will still sit partly under health and partly under disability. Go figure.

We are not the only ones who will be left with separate funding systems – we have had this for years with the Accident Compensation Corporation (ACC) being responsible for the rehabilitation and care of those who have a disability because of an accident. The systems and processes for ACC clients are different to those who have an impairment from a congenital or chronic health need. Needs assessments, consumables, care, respite, it all differs depending on the cause of the disability. And guess what, this new Ministry will not be addressing that either. Go figure – again!

It feels like that witticism often accredited to Einstein – “Insanity is doing the same thing over and over and expecting different results.” Is building this new Ministry really going to create transformational change or is it just going to add to the burden of those caught up in a system? I do realise that the Ministry is not just about funding – it’s main vision and purpose is to remove barriers for many disabled people and whānau so that they can achieve ordinary life outcomes. The government have acknowledged that “supports can be fragmented and difficult to navigate, and multiple eligibility criteria for different services makes it difficult for disabled people to know what support services they are entitled to”. https://www.msd.govt.nz/about-msd-and-our-work/work-programmes/disability-system-transformation/ministry-for-disabled-people-establishment-unit/index.html

Yet, they are not listening to the people using the system. As always with government, they are taking an inside out approach, rather than looking at service transformation from the outside in. Instead of real transformation they are building another system around existing systems that are broken and impractical. In our case, we need to access supports around 20 different agencies, health professionals, hosts, services, e.g. NASC, DHB, Home Care, Dual Disability, Youth Respiratory service, GP, Incontinence service, Pyschologist, Special Ed school (with physio, SLT, OT), Dietician, Individualised Funding Host, MSD, Accessable, Wilson Home Respite (WDHB), Invacare, Oxygen service (BOC), Orthotics and Talklink. This does not include organisations that I join or check out to keep up with what is going on – AutismNZ, Rare Disorders, Complex Care Group, Disability Connect, NZ Disability Support Network (NZDSN) and Office for Disability Issues (ODI). It goes without saying that to keep up with all the updates from these places is a full time job on top of caring for your child with complex issues.

I do all of this on Mitchell’s behalf because he does not have the intellectual capacity to do it for himself – I don’t do this because I want to control his life, harm him or make his life difficult. I do this because he needs our help to make his way in a world that does not accommodate his needs. He is unable to speak for himself, and we have an unique method of communicating with him to find out his desires – this involves a lot of hand movements, an assisted talking device, pecs and interpretation of body language and facial expression. I use my voice to explain his needs to a world that doesn’t understand them and that is the reason I have been so upset at the oversight of the Establishment Unit of Ministry not including enough family voices in and on their community and steering groups.

When the steering and community groups were appointed, there was disappointingly only one person on the groups who represented a family voice. Disabled persons want (and rightly so) to govern the Ministry that is for them – just as a Ministry of Womens affairs or Ministry for Maori Affairs would want appointments from the group they are representing. I don’t disagree with this sentiment, but among disabled persons, there are people (like our son) who are unable to voice their own opinions or speak for themselves. These people are most often advocated for by their families. There are many reasons why they can not speak for themselves. Firstly, disabled children (under 16) fall into this category, secondly, intellectually disabled may not be able to express their ideas fully, thirdly, there are groups of disabled who are unable to speak or communicate in a regular way.

Within one of the Individualised Funding groups that I participate in on facebook it became obvious that others were equally unsettled about the lack of communication and the exclusion of the diverse voices of families during the establishment of the Ministry. For this reason, a fellow parent set up a new group for us called Whanau for Voices. The aim of this group is to create an action of protest to Ministers of NZ to ensure inclusion of whanau in the establishment unit and subsequent Ministry for Disabled People and their Whanau. I have volunteered as an admin for the page and have been representing our group at a series of meetings with the Office for Disability Issues as we are trying to work with other groups that have a common desire for families to be recognised as disability allies.

I must say it’s not easy getting our voices heard among the many groups vying for attention and recognition. But for me right now, I feel it is critical to do this work so that other families in the future are not excluded from decisions and supports that are essential for them. Don’t get me wrong I am very grateful to live in a country that has a health and social welfare system that supports those in need- but it’s the system I get angry at. There is so much repetition, bureaucracy and inequality to deal with and the system is very complex to do deal with. There is a lot of money spent on consultation and strategy, but the strategies don’t seem to get actioned. It’s disheartening waiting for something to be actioned that seems so obvious from the users viewpoint.

The migration of EGL around the country will go someway to changing the culture of disability from a medical model to a social construct, but it is not the full solution. Other families before us, have made some changes to the system with the most notable being the resident family care funding. We are the benefactors of that, but it doesn’t end with this. Right now, New Zealand faces a crisis in terms of a shortage of trained and effective support workers in our community and a serious shortage of choices in respite for those caring for children and adults with complex needs. These two issues are a priority for families caring for their disabled dependents and it is for these reasons that I have become for active in fighting for what families need.

I really, really hoped when the new Ministry was introduced that there were going to be positive changes on the way for Mitchell and our family. Hope for our family is a key emotion to staying on the right side of wellbeing. Feeling hopeless or without hope are flashing light indicators of depression. I don’t want to lose hope and it seems the only way forward for that is to be vocal about what we need. My families future is about to be directly affected by the work of this Ministry and I hope that we families who represent our disabled dependents are able to be a part of this change and have our outcomes improved as a result. Shortly, the groups working with the ODI will be sending a letter to the incoming Chief Executive of the MDP. The letter is to ask for our needs to be heard and met. By working with other groups I hope that we can present a united family voice that is able to be heard.

I realise today’s blog post is a step away from the usual home and crafty life blog posts, but my blog is about my ‘passions’ and at this point in time this is one of those. One day, I hope to see that the voices of families are valued equally in the conversation about disability policy and that parents wellbeing is recognised as a major contributor to the wellbeing of our disabled dependents. There is a long way to go.

Cherie 🙂

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