After years of court action, the Government has passed legislation to allow adult disabled people to employ family carers, but the new policy has left the sector seething. JUDE BARBACK reports.

The Government’s $92 million Funded Family Care policy came into play on 1 October this year and has been met with strong criticism from advocates of payment for family carers. The New Zealand Carers Alliance has described the new scheme as “flawed and unfair”.

Under the new policy, eligible adult disabled people are allocated Ministry of Health funding to employ certain family carers for the delivery of personal care and household management services.

Health Minister Tony Ryall says the funding, estimated at $23 million a year over the next four years, will enable around 1600 disabled adults to pay family carers.

Controversial legislation

On the face of it, Funded Family Care sounds like a vast improvement for family carers, who in the past have not been entitled to any payment. And it is. But it would appear the Government have a lot of ground to make up to appease family carers.

Aside from any deficiencies in the policy, it is the way the new policy came into play that has angered many. The fast-tracked legislation, seemingly to prevent the “me too” effect of other groups wanting in on the policy, has left a bitter taste in the mouths of those who expressed relief that the matter was no longer consigned to the courts and entered into consultation in good faith.

The new policy follows years and years of court action around the issue of payment for family carers. It came to a head last year when a landmark court decision confirmed that parents of disabled children were being unreasonably discriminated against by not being allowed to be paid carers.

Finally, the Government agreed to take the issue out of the courts and ask New Zealanders what they thought about family carers receiving payment, and to comment on policy options that would appropriately recognise their work. This sector was buoyed by this turn of events and prepared to engage in a democratic consultation process.

Following public consultation, the Government announced that it would pay 1600 parents of disabled adults – not children, spouses or partners – who have high-support needs the minimum wage for up to 40 hours per week.

While many have acknowledged this as a step in the right direction, others have expressed their disappointment that it only addresses a small proportion of family carers.

It appears to be the urgency with which the subsequent legislation was passed that has angered many. Chairman of New Zealand Carers Alliance, John Forman, believes this was to close down the possibility of payment challenges from other carers excluded from the new policy, such as spouses, carers of older people, and parents of disabled children.

Laurie Hilsgen, chief executive of Carers New Zealand, is also scathing about the process. In her opinion piece in the last edition of INsite, she noted, “While the Government has left the door open to expand its payment policy in the future, its Public Health and Disability Amendment Act (No 2) has angered carers, disability rights advocates, and the legal fraternity, which is turning a cold eye on government’s perceived over-use of urgent legislation to press ahead with controversial or unpopular policies.”

Hilsgen believes the urgent legislation is a symptom of a bigger issue: how our small country with its limited taxpayer population can afford world class supports and services for the growing number of New Zealanders who need significant help to live good lives in their communities.

This is a valid point. $92 million from an already stretched health budget is a sizeable investment, yet it is pegged to aid a relatively small slice of the number of family carers who feel they should be remunerated. There are simply not the funds available to pay everyone who feels entitled to payment for the work they do caring for their family members. The Funded Family Care policy, as it presently stands, is a nod at a better solution, rather than an answer to the bigger problem.

Impractical solution

Regardless of any tactics the Government might have employed to pass the legislation swiftly, carer advocacy groups have described the Funded Family Care policy as contradictory and impractical.

Forman believes the policy will pit disabled people against their closest loved ones, by introducing an employer dimension into family relationships.

“It takes no account of the fact that the 1600 carers who qualify are in many cases also the disabled person’s parent – putting the decision-making on the shoulders of a person who may be severely or profoundly disabled. In addition, there are so many service and compliance layers that it will cost a fortune to monitor,” said Forman.

One blog on the subject, Autism & Oughtisms, says the new policy is contradictory as it expects only the most highly disabled will even qualify to pay family members, but in order to get the funding they must do very many things that would be automatically outside of the capabilities of the severely disabled.

“For example, the disabled person must be able to understand all their obligations under the funding agreement and all key aspects of the agreement. If they cannot, the funding is not approved. Those obligations include all core areas of employment law since the way the scheme is set up is to make them the employer of their family member, as funding is deposited in their bank account which they are then responsible for using to do the following: pay the family member who is supporting them, pay ACC levies, pay tax, and pay the Kiwisaver scheme. The disabled person is explicitly put in the position of an official employer, and explicitly expected to be able to understand and meet all employer obligations, which are extensive and highly complicated in their own right.”

Another element that has been described as contradictory is that in order to meet the scheme requirements, the disabled individual must be able to “explicitly confirm” their preference for a family member to do the work.

“How can the scheme on the one hand acknowledge that individuals may have severe communication difficulties, but insist as a necessary requirement that the disabled individual must be able to explicitly confirm a desire for an employment relationship, and must be able to show an understanding of the employment relationship?” questions the blogger.

In answer to these sorts of criticisms, the Government has put in place support systems to help disabled adults make sense of the new policy. Five parties are involved in the funding set-up and ongoing review process: the disabled adult, the carer, the Ministry, NASC (Needs Assessment and Service Coordination) and the “host”.

But administrative aspects aside, why has the Government gone to such lengths to give control of the process to highly disabled people? Indeed, the policy allows for full and informed consent and heeds the rights of the disabled individual at the heart of the process. It appears to eliminate the possibility for any exploitation, which, it could be argued, is a laudable approach.

However, the nitty-gritty of the policy seems to be removed from the practicalities and realities for many families in which one family member is caring for another, and it is this aspect which has critics reeling.

Early days

With the policy barely two months old, it will be interesting to note how it unfolds. A check on the blogs reveals that it has not been straightforward for some.

One blog correspondent, Peter, shares that he has an adult son with mental illness who has been in a hospital rehabilitation programme for the last 18 months but will return to his father’s care in the next few months. Having reached retirement age and therefore no longer qualifying for the support benefit, he thought Funded Family Care sounded like the answer, but after enquiring with NASC and then the Ministry, he eventually was told that the policy is not available for the parents of adult children with mental disabilities.

The irony is that the Funded Family Care legislation grew on the back of the court action which involved – among others –parents caring for adult children with mental disabilities. It seems incredible that these people would not be eligible for the new scheme.

Hilsgen suggests one solution might be a broad social insurance scheme, an investment we all contribute to, and are beneficiaries of if we or someone we care about has significant ongoing support needs.

Forman believes a more workable solution would have been for family carers to be paid directly by the Government as independent contractors.

For now, however, the Funded Family Care policy is what is currently on offer to a limited number of families. It may be shrouded in controversy and it may be off to a swift and shaky start, but at least it is a step in the right direction. Things can only improve from here.

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