All too frequently for my comfort I see a Facebook announcement from parents saying that they have just been granted the Child Disability Allowance (CDA) and that, by the way, their child is three or four years old or possibly older.
The parent then often follows their announcement with the question – ‘Can I have it back dated?’
Why does this statement make me so uncomfortable?
For years now a number of people in the disability sector have lobbied for one organisation to take responsibility for and be accountable to the government for making sure that children entitled to get the Child Disability Allowance do in fact receive it.
At the moment, no one appears to have that responsibility.
It should not be like this. A system should enable a person to get help not make it so awful that people didn’t want to go back.
So families who could well use the money to support their disabled child in the very early years, go without. It seems parents have to stumble over the CDA entitlement in order to receive it, because no one has ever thought to say to them ‘your child could get some support’.
If those parents are well-connected to a parent group, or they have a great GP, or a friend or therapist, then they may have been told. You can see the problem - too many opportunities for a family to fall between the cracks.
I don’t care who takes responsibility for doing this but is it too much to ask for one government organisation please put their hand up and say, “We’ll do it.”
I’ve talked to parents who have had their child at school for 16 years and then were asked the question as to whether they had been receiving the CDA – they were devastated. “Why didn’t anyone tell us?” they shouted. A shrug of the shoulders followed by the all too often statement, “We thought you knew…”
So is that the plan? Make it so complicated, so challenging that people simply give up?
Many people receive a diagnosis for their child at the time the child is born; others wait some years before that happens. Regardless, it is often with a great deal of trepidation that a parent approaches the desk at Work and Income, form in hand ready to be interviewed about their needs. As a parent it is a hugely sensitive time. You are raw, often with grief, with uncertainty, with fear for the future. You expect some compassion, understanding, and kindness.
That doesn’t always happen.
In 2016 the Child Poverty Action Group worked in Otara trying to discover what the barriers were to the uptake of the Child Disability Allowance. It makes interesting reading. Parents and caregivers spoke about the ‘unpleasant interactions with Work and Income staff and difficulties in getting supporting documents for their application’ along with challenges of filling in complicated forms. In essence the ‘system’ defeated them.
It should not be like this. A system should enable a person to get help not make it so awful that people didn’t want to go back. The reason - they felt humiliated!
I too know that feeling. I too have been humiliated when a Work and Income person informed me that I was not the ‘agent’ for my son. I am his mother but apparently not his agent; even though all the correct forms had been filled out. They, as in Work and Income, had it somewhere on their computer but could not locate it. Humiliating! I need to say that word again – H U M I L I A T I N G!
We talk all the time about being a country where children get a great start in life. But if you are disabled, it seems that getting a small allowance each week is just an added burden.
So is that the plan? Make it so complicated, so expensive because you have to pay the doctor for verification that your child has a disability, so challenging because you have to take time off work to fit in with Work and Income hours.
So people simply give up?
Well maybe it is.
The other very interesting fact that the Child Poverty Action Group researchers discovered was that in 2009 just over 45,000 children received the CDA but by 2015 that number had dropped to under 35,000. This is a 32% decline in the numbers of children getting this allowance. Really!
How strange, especially when the methodology for diagnosing an impairment has got that much slicker. Accordingly, the money numbers dropped from $100 million being spent to just on $80 million. A saving of $20 million. It makes you think, ‘Does this mean that the number of children with disabilities in the community is less?’
I think not. And where is wellbeing of the disabled child in all of this?
We talk all the time about being a country where children get a great start in life. We talk about how much we care for our children. But if you are disabled, it seems that along with all the other challenges you face getting a small allowance each week is just an added burden onto all the other areas of struggle that you and your family have to contend with.
So, calling all government agencies, which one of you is so wedded to making New Zealand a great place for children, of ridding families of the poverty stigma that you are happy to put up your hand and say – “I’ll do it.”
Is that an echo I hear?
This blog was put to the Ministry of Social Development for a response.
Colleen’s blog raised a number of issues about the Child Disability Allowance and we appreciate the chance to respond to them. The Child Disability Allowance (CDA) is open to anyone who has a child who meets the criteria, the allowance is not income tested. Depending on your circumstances you may be able to get both the Disability Allowance and the CDA. If your child is 16 or over they may be able to get the Supported Living Payment. Our latest figures show that the numbers of people receiving CDA is going up (34, 968 in 2013 compared to 37,095 in 2018).
We really care about our clients and want to make sure they get everything they are entitled to. Our case workers work with our clients individually and our goal is listen with respect and compassion, be open and fair. We are always looking to make thing easier for clients. So when we hear about experiences clients have had where things have not gone so well, we want to put that right. If you think your child qualifies for CDA or other related payments, please contact us. Check out our new eligibility guide on the Work and Income website firstname.lastname@example.org which is an easy way to find out what payments you might get.