It has been a while since I have blogged, certainly not because I have nothing to blog about but it is fair to say that the last month or so has been an extremely busy time on both the work and home fronts for a number of reasons.
It has also taken me some time to ponder this blog and its contents as some people who have never experienced something like this may struggle to understand…you may even think that it has nothing to do with safety and security…please continue reading as the contents of this blog may offer some of you insight into a situation that is being repeated across the country to a large proportion of families.
Before getting into the details I would like you to follow the link to a blog that was posted by a very good friend of mine. Philip Patston is a well known and respected social entrepreneur, comedian, public speaker, motivator and mentor who manages his own successful business…he is also disabled.
Some of you will be aware that I too am familiar with the disabled community. My son Keegan was born at 26 weeks gestation which resulted in him being diagnosed with Cerebral Palsy at 9 months and subsequent discoveries of epilepsy, autism and learning delays to name but a few. With respect to this Keegan has complex needs and requirements most of which are met by my wife Franky and I who have been providing care for Keegan 24/7 for the last 14.5 years without a break.
Early on in Keegan’s life we engaged the services of contracted providers funded by the Ministry of Health (MoH) to assist with Keegan’s supports in the home. This system over time clearly became unsustainable due to untrained staff and incompetence on several fronts which saw Franky having to step in to recruit, train and oversee staff on their behalf. As you will appreciated this regime created more stress and concerns for Keegan’s care and protection than doing it our self.
We then requested a funding package to be provided which we had direct control over (MoH provide funding direct to us to employ our own staff to assist with meeting Keegan’s complex needs). This funding is integral to enable us to keep Keegan in his home and to be cared for as best as he can…who better than the parents to do this. This system of funding has proven to be the best system in ensuring Keegan’s needs are met…and as equally important providing Franky and I with the assurance that Keegan’s welfare, safety, care and protection is unfaltering. This system for the last six years has proven itself to be the most cost effective way of providing a quality of life for Keegan that has been outstanding that clearly the likes of contracted providers and the MoH cannot do. This funding has been provided to Keegan for the last six years…until now.
The dictatorship as Philip referred to in his blog in my opinion is our Ministry of Health. The organisation that is responsible for the care and protection for those who are most vulnerable in our society fits the ‘dictatorship’ title perfectly.
Why do I say this?
In all its wisdom the MoH have elected to stop our current funding arrangement with little notice and put us back under the sub-standard service of contracted providers.
As quoted by Philip in his blog the traits of dictatorship are:
The dictator doesn’t listen: In this case the inattentive dictator is the “system” and the people who work (in) it – the Ministry of Health (we’ve said we’re not sick), Ministry of Education (we’ve said we’re not special), Work and Income (we’ve said we’re not invalids), Needs Assessment (we’ve said we know what we need). I won’t go on, it’s boring. People who experience disability continue to go unheard in our plea for coherent language, appropriate policy and competent practice.
Subjects are scared to talk: In my experience, very few disabled people have the confidence to speak openly if they feel they are not getting their needs met or having their rights infringed. Sure there are some who are vocal and agitate for improvement. But the overwhelming majority of people and families impacted by disability are grateful for the little support they have to survive, are afraid to lose what they have and, therefore, remain silent.
Subjects exhibit traits such as pessimism, cynicism, lack of self-confidence & self-management: Again, there are exceptions to the rule, but this element falls into two categories. Pessimistic, cynical activists and your everyday, average disabled person who lacks confidence and competence to do anything much more than claim a benefit and sit on a couch in their home, a home, or a day facility.
There is painfully slow innovation: You only have to compare computers and wheelchairs to witness the lack of innovation in solutions to mobility and assistive technology. If the same or equivalent levels of investment had gone into researching innovations in assistive devices as have gone into advancing personal computers to the iteration of the iPad, I’d be wearing my wheelchair as an accessory today, not lugging it into my car with a winch.
Subjects hesitate to speak up and stand up for themselves; if they do, they are very polite: Linked to fear of talking above, sadly in my experience a lot if not most people impacted by disability are terrified to speak out, complain and ask for more, for fear of neglect, victimisation and even abuse. The disabled community is unique in that we rely on the “system” to fund support for the basic necessities of life – shelter, food, cleanliness. People have so much to lose that they remain courteous to their detriment in order to avoid the risk of punitive consequences or withdrawals of support.
What has this got to do with safety and security I hear you ask?
Safety and Security for a large number of us is something that we tend to take for granted. When we are babies not only do we need safety and security but we also require care and protection. As we mature the need for care and protection diminishes but not so the need for safety and security. As we enter our more mature years we again require more care and protection as the toll of life catches up with us and we need assistance.
But what about those within our communities who require not only safety and security, but a high level of care and protection for their entire lives? Those people with permanent impairments require lifelong assistance. Imagine you can’t get out of bed by yourself, imagine you need assistance to get dressed, imagine you require assistance to have a shower and go to the toilet, imagine you need assistance to eat, imagine you require assistance to undertake everything that you wish to do on any given day. The reality is that Keegan doesn’t need to imagine this he lives it every day.
What if you needed this level of assistance? I am confident that if any of us were in this situation you would want the right type of people providing you with this assistance. Surely you would want people who have a genuine concern for your welfare…who better than your parents and those who have been recruited, vetted, trained and supervised by those that care for you more than anything in this world.
As a security consultant I provide training, skills and knowledge designed to keep people safe…this is my job, my passion and it is what I choose to do…but what if due to a dictatorship I am no longer in a position to guarantee the safety, security, care and protection of my own son. Due to the recent actions of MoH this is the frustrating situation I now find myself in…Keegans safety, security, care and protection is now greatly compromised…a situation I find totally unacceptable…but due to the MoH dictatorship I have no choice…I have no voice…I’m not being listened to…and I now have diminished control over who comes into my home to provide cares for my son.
I have always suggested to my clients in terms of their safety that there are always choices…we make choices that either put us at risk, or we make choices that keep us safe…in this case as with many other disabled people…given the dictatorship mindset and attitude of the organisation that we expect to look after us, our ability to choose has been taken away. More importantly Keegan’s ability to choose has been taken away.
I can now choose to accept this…or I can choose not to…I choose NOT TO. I will not stand back and allow a system full of bureaucrats who are so far removed from reality dictate to my family and I that they know what they are doing and they know what is best for us.
Experience tells me that the path they are taking is one that is going to get people hurt, it is a path that takes away people’s dignity, it takes away people’s right to choose and self-determination, it takes away the basic fundamentals of everyone’s right to safety, security, care and protection. As a father of a child who is considered to be society’s most vulnerable I find it appalling.
As a security consultant I find it totally unacceptable that a Government Department in a country such as New Zealand can even think about treating people like this….
I am at a loss.
I welcome your thoughts