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Parents the unseen heroes when caring for children with complex health needs

I want to acknowledge and applaud Cliff Robinson who has lobbied and advocated for families to be recognised financially as they care for their adult children with complex health and disability needs. In the recent media coverage (Waikato Times May 26) Cliff explained that he wanted the payments for family carers to be his legacy.

Currently The Health Ministry do not pay family members who provide their own home-based care.  There has been a recent Court of Appeal decision which ruled that parents of disabled children are being unreasonably discriminated against by not being allowed to be paid carers because of their family status (Waikato Times May 26).

Previous to this, families won a case in the Human Rights Tribunal in 2010 after a hearing in 2008:“Nine people have claimed in the courts that a Ministry of Health policy excluded them unlawfully from payment for the provision of disability care services to their disabled adult children that they would otherwise be entitled to.Following a hearing held in September 2008, the Human Rights Review Tribunal found in January 2010 that the nine people were discriminated against by reason of their family status because of the Ministry of Health policy.Seven of the plaintiffs are the family of disabled people. The other two were adult disabled people who wished to live with a parent and have that parent provide them with the necessary support services. The decision only applies to adult disabled people cared for by family, however the policy also relates to disability support services provided to spouses and other resident family members.The Ministry of Health appeal on the decision to the High Court was dismissed in September 2010. The Ministry of Health then chose to take the appeal to the Court of Appeal where there was a hearing in February 2012. The Ministry of Health’s appeal was dismissed in a decision released 14 May, 2012”. (Human Rights Commission, May 14, 2012).Currently under ministry policy outside caregivers can be paid to look after their children, but family members cannot.There are many families, who struggle day after day, not only with the complexities of their children’s health needs, but the financial strain and isolation that health and disability bring to their lives.Many of us do not know what it entails to live with a child with complex health and disability needs.  The time that it takes to get that child and others in the family set for the day and out the door for school or other activities would certainly give us reason to pause with admiration and awe.  Cliff highlighted a ‘typical’ day for him as he cares for his two adult children who live with a neurodevelopment disorder.  This is not unfamiliar to the many families that True Colours supports.

The advanced medical knowledge and technology of today has many positive benefits, but it has to also be acknowledged that families are now caring for children in the community with more complex health needs than they once did.  Oxygen concentrators, suction machines, CPAP and BIPAP technology in the homes is no longer a rare occurrence, and that’s not mentioning the physiotherapy, night care and administration of medications that parents are now responsible for.

As this population group of children grow older it becomes more difficult to access the appropriate care required to effectively meet their needs.  Families are already stretched physically, emotionally and financially.  I endorse Cliff Robinson’s work, and other families alongside him, who continually speak out for what should be theirs by right to make sure adequate care is supplied to their children.

The lobbying by Cliff and families like him are paving the way for other families who have children who are likely to require specialised care as they reach adulthood.  It is often the preference of families to care for their ‘children’ at home rather than to have them cared for by outsiders.  Therefore this needs to be recognised at a funding and Ministerial level so that families are well supported to care for their own loved ones.

Health care policy and provision should be continually led by the families who provide such amazing care to their children.  To directly target the needs required to care for children with complex health and disability we have to listen to what it is that families are saying so they gain the support they require not what organisations and policy makers think is important.


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