A few weeks ago I wrote a column with respect to teacher aids, particularly those working with special needs children. Not long after that I received an invitation to meet with parents of disabled children and young adults to discuss the hurdles, hoops and bureaucratic brick walls these parents need to get over, through and around to enhance the lives of their kids and maintain their own sanity.
I was reminded of a situation I helped with a few years ago, where a child disabled through medical misadventure on delivery was about to start school. The ridiculous level of red tape and nonsense that had to be negotiated in order to get the child started at school was incredible. It seems to be that a child born in those circumstances is diagnosed on day one of their lives.
The difficulty in raising that child was foreseeable -- as was the obvious fact that that newest citizen of this First World country we call Godzone, was going to need ongoing help for the rest of their life.
This help was going to come not only from family but also the state.
You would think that on diagnosis of a debilitating condition, government agencies would have a co-ordinated chain of resource and case-management that would lead parents through the assistance available and the requirements -- legal, societal, education, medical and welfare -- into the future.
The birthdays that trigger levels of education, for example, are all known and fall on the same day every year. The date the child will start and probably leave school are virtually set in stone. Why, then, is it that the biggest help to parents who find themselves caring for disabled children are put through so much hoo-ha to achieve the most basic of parental duties like finding a suitable school? Why is it that the biggest help in these circumstances is another parent who has been through all the same stuff before them? Surely there is one agency that can be charged with walking though these processes by opening the doors and making the introductions agency by agency.
Here is another example: At 16 a disabled person requires a bank account if government support is going to be paid for them. The bank requires a signed authority, which is usually the account holder's signature. But some disabled children cannot sign, and if they could there might be not legal weight with that signature because they don't understand what they are signing. The parents are not allowed by the banks to open an account on behalf of the child without a court-sanctioned Welfare of Property Guardianship. This costs about $1500 and needs to be renewed every three years. That amount of money would take the family away for a holiday for a week. Surely an affidavit from the parents would suffice, but the banks say no.
Then there is the maze of benefits, such as Supported Living, provided by MSD. The documentation that runs with these is immense and the ability to know all the available entitlements is a jargon all of its own.
I spoke to a woman who has been waiting six weeks for a tray to fit on to her daughter's wheelchair because the agency to provide this hasn't returned her call.
The very disabled child can stay at school until the age of 21 but after that there is not always readily available day care or respite care as a replacement for school where she can learn, be cared for and socialise.
Another couple had to create a "business" so they could employ a carer for their child and have this business registered with Inland Revenue, even though they made no product, provided no service and had only one recipient for government assistance, their child.
Life is a struggle for those caring for the disabled.
Dealing with the myriad government agencies and social services seems to be a minefield that needs careful and clever negotiation.
Most parents of able-bodied children look at parents in that predicament and think "There, but for the grace of God, go I", so we should make it much easier for them.