A mother explains why the Ministry of Health's base model for caring for the disabled is based on factual error and discrimination.
In the world of work I don’t have many formal qualifications. In the world where I am the parent of a 25 year old disabled woman of high needs I am highly qualified to discuss policy re payment to family carers. Many of us are now familiar with the Human Rights Commission case against the Ministry of Health (The Ministry v Atkinson 2010), which resulted in the government announcing a policy to pay some family carers in its recent budget. Whether or not you agree with the high court's decision that family carers were discriminated against and should be employed in the same manner as outside help, the fact remains that the entire base model of this new policy is built on factual error.
The Ministry of Health has been underproviding care for disabled people for many years and through successive governments. My own daughter currently receives between 23 and 30 hours per week of paid care, but actually requires assistance/supervision for around 140 hours per week. The Human Rights Commission took the case for seven families on the basis of family status because there were no other options open. Successive governments have refused to look at the fact that the base model is incorrect. The allocated amount of household help and personal care hours bears no relation to the real world model of care requirements, so when I saw that the government had settled on a figure of “up to 40 hours per week” of payment at the minimum wage I was filled with dread. In the context of zero residential care alternatives and a lack of decent modified housing, the option is a soul destroying continuum of caring.
In 2008, faced with a mind numbing future as the single parent of a disabled person, I decided to complete a BA in Anthropology and Politics, one paper at a time. Around the same time as my decision, the training incentive allowance for DPB-CSI recipients was withdrawn and my case manager informed me that in order to qualify for the benefit I really shouldn’t be having more than 5 hours per week of external contact for training or work. On the basis of this I made my own submission to the Human Rights Commission, stating that as far as the Ministry of Social Development were concerned, I was already employed to look after my daughter. Yet I had none of the rights of an employee. I do, however, have to pay secondary tax on a paltry extra $100 per week of earnings.
It is still unclear whether the government’s intention to pay 40 hours per week at the minimum wage is in addition to the assistance already provided. Family carers are being further punished by a lack of information on how it will be assessed and by the exclusion of spouses and the parents of moderately disabled adults. What is clear is that the commitment by the Ministry of Health to only pay the minimum wage to some family carers compared to around $16- $25 per hour to formal employees is still discrimination. Peter Humphreys, one of the original complainants in the Ministry v Atkinson case commented in response to the government’s recent budget announcement that “the horse has bolted”. Unfortunately, the reality is that the bureaucratic merry-go-round actually continues on unabated.