Carers Ask Where's the Detail in the Disability Levy and the NDIS

Catholic Communications, Sydney Archdiocese,
3 May 2013

Maree and her disabled son Alex

Carers and families of profoundly disabled loved ones have welcomed the public's positive response to a DisabilityCare levy. But they say the Government's announcement raises more questions than answers.

In fact many remain deeply concerned at the Gillard Government's lack of detail and transparency about its planned scheme to support people with severe disabilities. They are also upset that although assessments are being made for the initial trials due to start in just eight weeks time, they have no idea of the criteria being used to decide on who will be eligible for the trials and who will miss out.

The Government's draft legislation for the NDIS, now renamed DisabilityCare is planned to be rolled out in 2018-2019 but under its proposals, it is the bureaucrats and providers who take precedence - not those who need the support and care.

"The proposed legislation is inflexible, top heavy on bureaucracy and fails to recognise the rights and importance of family-carers and the integral role they play," says Maree Buckwalter, the Sydney-based Founder and President of the Carers Alliance and the mother and carer of her 27-year-old severely disabled son, Alex.

Instead under the scheme planned by the Government, family-carers of people with significant disabilities needing full time care have been sidelined with the draft bill proposing Canberra bureaucrats take over decisions about individual care plans for the family's son, daughter, wife, husband or parent with a profound disability and needing around the clock care.

"The draft legislation deigns to recognise, acknowledge and respect carer-families and then relegates them to observer status, ignoring their expertise and input and excludes them totally from the decision-making process," Maree says. "You would think it would be obvious how crucial input from family carers would be in any decision-making about the care of those they look after. These are the people who understand their needs, know them better than anyone else and who for many years with little help or support, have been caring for them 24 hours a day."

For decades family-carers have been the backbone of the informal support system helping to forestall the complete collapse of Australia's formal disability system, she says. However under the proposed DisabilityCare legislation they have been excluded and decision-making about the care of their loved ones handed over to strangers.

Funding for new disablity scheme still not released by
the government

The draft bill for DisabilityCare has been put together in an ad hoc way by bureaucrats and a Government more interested in election slogans than in making a genuine difference to the lives of carer families and the profoundly disabled men and women they care for, she says.

Maree is also impatient that less than four weeks was given by the Government for consultation and submissions from carer families and those at the coalface with most input coming instead from bureaucrats and service providers rather than the people it is supposed to help - the disabled themselves.

Mary Lou Carter, another Sydney mother who has cared for her profoundly disabled  22 year old son Nicholas since birth, is scathing about the consultation process and response to submissions from the Carers Alliance and others involved with caring for family members with significant disabilities.

Secretary of the Care Alliance, the advocacy group established five years ago to advocate and fight for the support and care of the disabled, Mary Lou is sceptical of the Government's motives and what she describes as "Prime Minister Julia Gillard's confected concern for those with disabilities."

"When it comes to consultations we were given a 'Claytons' one, the sort you have when you are not really having a consultation but just giving the impression you are," she says. "The Government had no interest in listening to us, hearing our concerns and suggestions, or discovering what might really be needed."

Carers such as Mary Lou and Maree are also unhappy with the way the DisabilityCare scheme has been promoted to the public. Even the branding is far from the intent of the scheme, they say.

"The ideal of the Productivity Commission was based on care as being a fundamental human right with people provided with the resources to access communities and to make choices, exactly like all other Australians. By branding the scheme as DisabilityCare the Government has led the national conversation away from empowerment towards a welfare model," Maree says and points out that empowerment of those with disabilities was the key reason the Productivity Commission wanted  financial resources for the scheme to come out of consolidated revenue.

"As far as the Government is concerned it is all about the vote. The PM and her Government are trying to use this as wedge politics when it should be simply about Australian citizens being given the resources in line with broader community expectation of what a good life is," Maree says.

NDIS has no funding certainty and no criteria for eligibity for Australia's severely disabled

She is quick to add how she, other carer families along with the entire sector of people with disabilities have been heartened and inspired by the positive generous response from Australian taxpayers to the proposed increase of 0.5% in the Medicare levy to fund part of the planned disability care scheme.

"The general public genuinely want to see people with disabilities given the support they need to lead a good life," she says and accuses the Government of smoke and mirrors, using emotional speeches and photo ops of the Prime Minister with disabled children and men and women in wheelchairs to prevent hard questions from being asked.

"We still have no idea how the additional $3 billion-plus needed on top of the $3.5 billion raised by the increased Medicare levy will be raised or who will be eligible for the scheme when it is finally rolled out," she says.

Maree is also unhappy about continued misinformation given by the Government such as yesterday's claim that the criteria for participating in the trials had already been legislated.

Not only is this not the case but the trials which begin on 1 July will have just 10,000 participants, a tiny fraction of the 410,000 Australians with profoundly disabilities the scheme is ultimately meant to cover. The $1 billion funding provided by the Government over the four years of the trials which will be expanded to include 10,000 more participants next year, is considerably less than the $2 billion per year recommended by the Productivity Commission.

In addition only two of the trial sites will be able to provide any meaningful and critical data to inform the design of the scheme prior to the full scale roll out in 2018-19.

The trials set for Tasmania or South Australia, although touted with much fanfare by the Federal Government, will add little to the data needed to fine tune DisabilityCare for the majority of those it is meant to help. In SA those taking part are children of seven or under and although Early Intervention for children will planned to be covered under part of the scheme, the amount of money needed is far less than the accommodation and support of adults with profound disabilities, which is the major focus of the scheme.

In Tasmania trial participants are adolescents aged from 12 to 18 and the same factors apply. However in the ACT while participants will cover people of all ages, the data will be of little use as the cross section and numbers are too small for a representative sample at a national level.

"This approach clearly disadvantages these states and diminishes their input into the way the  scheme is developed. As a consequence the sites in the Hunter Valley in NSW and in Victoria will be the sites that will determine how the scheme is finally designed and implemented," Maree wrote in submission by the Carers Alliance to the Government last year.

Mary Lou Carter with her son Nicholas who has a severe intellectual disability and needs full time care

It is also worth noting, she says, that of the $1 billion the Government is giving over the four years of the  trials - an amount reduced by $2.4 billion in last year's Budget -  three quarters will not go to participants but instead be put towards administration and what the Government call "set up costs."

In other words the burgeoning bureaucracy in Canberra which has already been increased by more than 20,000 since the Rudd-Gillard government came to power, will be increased even further.

An additional concern from family-careers and the Carers Alliance is the Government's claim that revenue from the Medicare increase will be quarantined and used only for DisabilityCare.

Under Commonwealth law all funds from taxes must go into Consolidated Revenue. This is why many critics say the levy is really another tax and cite the fact that not all funds raised by the Medicare levy are used for Medicare. 

So for the next five to six years, if the increase in the Medicare levy passes into law, the Government's coffers will expand by as much as $17.5 - $20 billion before the scheme's national roll out in 2018-2019, giving a false but extremely positive reading for the Government's forward estimates and struggle to get back into surplus.

From the beginning Opposition Leader, Tony Abbott and the Coalition have expressed support for the Productivity Commission's recommendations for a National Disability Insurance Scheme (NDIS) and he along with Shadow Minister Mitchell Fifield, Shadow Minister for Disabilities, Carers and the Voluntary Sector have responded to concerns of many family carers with personal letters and phone calls, Mary Lou says.

She also points out that at a COAG meeting in June last year, the Premiers of every state and territory gave unanimous support to a levy to fund an NDIS scheme. But the PM turned this down, insisting she would not introduce a levy. 

Now she has changed her mind.

Although the Opposition Leader and the Coalition have given their support to an increase in the Medicare levy, and called for the legislation to be brought before the current sitting of Parliament, they have insisted on a proviso that in addition the Government introduce the full NDIS package including legislation on how it will work and who exactly will be eligible.

"The assessment tool of the NDIS Launch Transition Agency to be used to determine participant eligibility should be released prior to the levy legislation being introduced to provide maximum transparency for the parliament and for potential scheme participants and service service providers. This is so people with a physical impairment, sensory impairment or intellectual impairment know whether they are in or out," Mr Abbott said.

In addition before any vote is taken on the levy and scheme, he said the Government must outline how the remaining 60% funding shortfall would be provided. He also called on the establishment of the DisabilityCare Australia Fund to hold levy proceeds and said this must be legislated in the current Parliament and overseen by the Guardians of the Future Fund to prevent the raiding of this fund as occurred with the Higher Education Endowment Fund.

Maree is in complete agreement. "Many of us who care for those with disabilities fear the assessment tool used under the scheme will not be based on the social model but instead on the medical model. If this is the case, services will be deficit-driven rather than socially driven, which in turn will have enormous implications on a blow out in the costs of the scheme," she warns.

According to Maree, the draft bill is a "back to the future" piece of lawmaking making people with significant disabilities once again become captives of the care system and accuses the proposed section dealing with "informed choice" for those people with disabilities who need to rely on outside decision-makers as smacking of the old "we know best brigade."