Ministers, mother of disabled man in court over employment relationship

The mother of a severely disabled man is taking government ministers to court about the way she and other family carers like her are treated.

Christine Fleming, who has cared for her son Justin for 40 years, is taking the Minister of Health Andrew Little and the Minister for Disability Issues Carmel Sepuloni to Employment Court asking it to consider if the employment relationship imposed on family carers in order to get funding is legal.

The case before the chief employment court judge Christine Inglis is set down for five days.

What is this case about?

It looks at the way parents and spouses who care for their severely disabled family members are funded - like Christine Fleming who cares for her son Justin, who is 39 years old.

Justin suffers from Williams syndrome, requires 24/7 care and cannot be left alone. It's mundane in its relentlessness. But families say it is made worse by the myriad of rules and regulations, which they say puts up barriers to people like Fleming accessing funding.

Christine is not funded through the Ministry of Health because she is financially better off on a benefit. Although because she has to work for it, she regards it as a wage, rather than welfare.

This is at a time that the Ministry of Health (MOH) says it acknowledges the provision of disability support services provided by these families by way of funding families.

Justin and Christine have had two attempts at accessing what was then the Ministry of Health's Funded Family Care scheme (FFC), which pays parents to look after their disabled adult child. On each occasion, the MOH's allocation was less than the amount Christine receives on the Supported Living Payment, a weekly payment to help those who have or who care for someone with a health condition, injury of disability.

Under FFC, after repeated appeal's Christine was found only for 22 hours a week of funding, even though Justin requires full-time care. Christine says if she could receive 40 hours a week - and which the MOH describes as the maximum allocation - she would accept it. Even though it would have meant accepting Justin as the employer and all the obligations that come with that.

The Crown says its approach provides choice and also allows the disabled person to stay in their own home. It says FFC was based on the needs of the disabled person, not the potential family carer. And, it says, it was Christine and Justin's decision not to accept FFC.

It also points out they receive other government assistance in the form of 60 days of carer support and $9580 a year for respite care.

Christine wants the court to decide; can there be an employment relationship between her as a parent and her son, as the intellectually disabled person? And if not, who is the employer?

The Crown opposes these declarations and denies the factual assertions contained within them. Broadly, it denies Christine's allegations and says much of what she claims is not relevant to the ministers who are named in the action.

Sounds easy enough, right? Wrong

In 2017, the Court of Appeal heard the case of Shane Chamberlain a middle-aged man who is profoundly disabled. His mother Diane Moody, challenged the 17 hours a week of funding she was allocated to care for him.

Diane had to have an employment relationship with Shane in order to get funding. Even though the Crown freely admitted during the case the employment relationship that existed for Shane, and others like him, was "mere fiction".

In its decision, released in February 2018, the court noted the distinction that existed between services which met an essential need, which are funded; versus those termed 'natural supports', which are not. The court found supervision and intermittent needs should be included in the terms 'personal care and household management'.

The Crown disagrees, saying the Chamberlain decision needs to be read in its entirety and the court only ruled supervision was an 'essential need' if it meant the disabled person needed it to stay in their own home. It also says the only government department involved in the Chamberlain litigation was the Ministry of Health.

The case traversed the large range of documents and practices criss-crossing both the needs assessment process (which is used to determine how many hours of funding families receive) and the funding mechanisms which determine how families like Shane and Diane are paid. It's so complicated lawyers and judges struggled with it, saying the policies "verge on the impenetrable, especially for a lay person."

Its judgment concluded with the following remarks: "We hope the ministry is able to find an effective way of streamlining the regime, thereby rendering it accessible for the people who need it most and those who care for them."

What happened since then?

According to the independent disability advocate Jane Carrigan, not much. She assists and represents 23 families and individuals under the MOH disability system, including Christine and Justin.

She says all have been traumatised by having to deal with the MOH assessment process and which results in outcomes that, on any reading, fail to reflect high and very high essential needs. She says hopes of an improvement to the system as a result of the Chamberlain case and the Atkinson cases of 10 years ago, have come to nought.

In Christine and Justin's case, all they got was a face-to-face assessment. Justin was allocated a small number of respite associated hours (and which because of Covid he has had trouble accessing) and 15.5 FFC hours of funding for his mother. Months of appealing got that increased to 22 hours. Yet Justin's intellectual disability still isn't recognised.

And Carrigan alleges since the damning decision of the Court of Appeal in Chamberlain there have been minimal structural changes to how the person's needs are assessed or how the MOH determines the outcome of that needs assessment.

How the disability support services provided by family are administered and how families are treated has not changed in principle. There have been some tweaking at the funding mechanism level, but the frustrations and unfair outcomes remain.

Christine is arguing the Ministry of Health continue to exploit the love and lack of choice of the disabled person's family and friends relying on what the MOH refers to as their natural supports.

The assessment system still only assesses people for the physical time they need in help with the narrow areas of personal care and household management, the MOH will fund.

Carrigan has identified 26 documents which set out a range of the ministry's operational policies/ guidelines/ forms that cover the needs assessment process and which incorporates the "natural support" of the family.

Carrigan alleges this precludes MOH practices and which are not committed to written documents and which the judges in Chamberlain noted with alarm.

Yet since the Chamberlain decision was handed down, she says there's been no substantial changes to any of these policies. Nor has it publicised the decision.

The Crown says it addressed the concerns about the employment relationship by scrapping the FFC scheme. It says by offering families the option of going to a third-party service provider it doesn't place any employment obligations on the disabled person.

End of Funded Family Care

In March, the ministry wrote to family carers telling them FFC would end in September. If Christine accepted the 22 FFC hours she would have the choice of either working for a ministry contracted service provider, known as Home and Community Support Services (HCSS), or she would enter into an employment relationship with Justin under the Individualised Funding (IF) regime.

The Crown says IF is a distinct funding mechanism from FFC and represents "the expansion of an existing separate policy to replace FFC". Meanwhile, the Minister for Disability Issues Carmel Sepuloni says she is not responsible for the development, implementation, administration or funding of HCSS or IF.

Christine says there is no employment relationship between people with disabilities and their family caregivers either under FFC or IF because it isn't a true employment relationship, it's not possible to impose an employment relationship without the consent of the employer and employee.

The Crown says FFC required an employment relationship and IF may also require one, but denies this means it is improperly continuing to impose an employment relationship on families.

But Carrigan says families must agree to an employment relationship in order to receive funding.

Why are two Crown ministers defendants in the case?

Christine argues the care and support she provides for Justin is work that the minister for disability issues and the minister of health, are responsible for funding.

They would pay residential care service providers if they had too, or visiting care support workers, if they had too. They would pay for respite if they had too.

Instead, they rely upon the system they have created to make it difficult for family to access these services knowing that if the family cannot access help they will provide the disability support services themselves, and they will do it without it costing the government anything. Christine and parents like her call this exploitation.

Christine says she is effectively their employee providing a very high level of disability support services and should be paid as such. By failing to do this the Crown is benefitting financially.

Christine's lawyer, Paul Dale QC is also arguing that the disability policies these ministers rely upon in avoiding paying families a fair wage are contrary to the findings in two previous Court of Appeal decisions who have been very clear in their instructions to government.

It's the first time the minister for disability issues has been cited as a defendant called in a case involving family carers, but Sepuloni says disability policy isn't her responsibility and all previous litigation by family carers has involved the Ministry of Health.

Behind the Sepuloni and Health Minister Andrew Little, Justin is the third defendant because had he and his mother received Ministry of Health funding, he would have been expected to be the employer. He has his own lawyer at the hearing to represent his interests.

The Crown believes the Employment Relations Act, which the plaintiffs are relying on, isn't the appropriate piece of legislation to determine whether there is an employment relationship and says it shouldn't be heard in the Employment Court.

Instead, it suggests the case should be heard in the High Court as a judicial review, as the Chamberlain case was. Carrigan says what Chamberlain should have addressed was completely ignored by the MOH, "why would we put ourselves through that again".