Case for Children with Diabetes Being Lodged Today
Human Rights Case for Children with Diabetes Being Lodged Today
Diabetes Youth New Zealand (DYNZ) is lodging a case with the Human Rights Commission today (Thursday Nov 16) seeking to end the discrimination that excludes families with children with diabetes from seeking disability support.
DYNZ says its case centres on the Ministry of Health’s definition of disability, which excludes children whose disability arises from a “personal health” condition. This meant families with children with hearing disorders or learning difficulties could access support denied to families with high “personal health” needs like diabetes.
As a result of this discrimination, which had been “patched over” in some regions but not in others, DYNZ said access to a Carer Support subsidy designed to provide relief for full-time carers of children with special needs was totally inequitable. Families with children with diabetes living in Northland, Auckland, and most of the South Island could access support whereas families in Nelson/Marlborough and most of the North Island could not.
DYNZ, a patient support group run on a voluntary basis by parents, says there was no such discrimination when the funding for Carer Support assistance was held by the old Social Welfare department, but that it had occurred as a result of the funding being transferred to the Ministry of Health 12 years ago and being ring-fenced as Disability Support. Health reform had then confused the issue as different health authorities had been inconsistent in providing ongoing support for families with medically fragile children.
DYNZ president, Adrian Coombe, said the Government had recognised the inequity for years, but had so far failed to resolve it despite an explicit promise to do so more than two years ago, and was now dragging its heels in even talking to the patient group.
“Nobody has been interested since the election. We can’t even get a meeting with the Minister to discuss it,” he said.
The Government that introduced paid parental leave, and had wiped HIV as a barrier to entry for Zimbabwean refugees, could not address support for parents caring full-time for needy children, he said.
Adrian Coombe said there were more than 3,000 children and youth with diabetes in New Zealand. Almost all had Type 1 diabetes – an auto-immune disorder that cannot be prevented or cured, and had been diagnosed in babies as young as six weeks old. The condition had to be managed with multiple daily blood tests and insulin injections with a carefully balanced regimen of diet and exercise.
“Managing type 1 diabetes is stressful and relentless, and it can lead to medical complications in later years if not managed rigorously,” said Mr Coombe.
“Young people with type 1 diabetes grow up learning to take remarkable responsibility for their health and well-being, but they need the support of their families, schools and wider community around them – and this may require support for their families too when they are in distress.”