Source: The Bulletin [VINCENT MORELLO]

"...HEALTH CRISIS: Federal and state governments agree more should be done for the disabled.

It's just that each wants the other to pay for it.

While they squabble, millions go unspent, needless suffering multiplies and the lives of those who do most of the caring unravel. And it doesn't look like changing any time soon..."

Parents call it soul-destroying; those who can speak for themselves describe it as the most demeaning of experiences. It may result from genetic irregularity, traumatic brain injury sustained in a car accident, or from the hypoxia of a near-drowning. Or it might creep up stealthily, starting as a numbness in the limbs that eventually becomes multiple sclerosis.

Whatever the origins, severe or profound disability affects more than 650,000 Australians under the age of 65 - people who require daily or constant assistance with self-care, mobility and communication. Last year, $3bn was spent nationally on disability services. Some received the help they needed; most didn't and kept quiet; and some got nothing. They all acknowledge that living with disability is a lifelong battle but it's the begging for government assistance they find most soul-destroying.

Drowning on land, asthmatics call it, and for Jen Masson it happened on July 2002 when she was just 25. She was at a friend's house, went for her puffer and asked to be rushed to hospital. She never even made it to the car. When the ambulance arrived, she still had a pulse, but was barely breathing. At the end of the day, not only did Masson's parents, Keith and Gloria, have to deal with the shock of their eldest daughter having sunk into a coma, they also learned she had stopped breathing for 10 minutes. Jen Masson is now completely paralysed and cannot speak.

Their eyes tell the rest of the story. The hospital offered little hope. Then came the meetings at the Massons' home in Nowra, NSW, where Department of Ageing, Disability and Home Care representatives put forward their only offer of a nursing home. It was a typical outcome really, given that aged-care facilities are funded by the Commonwealth, while in-home care and staffed disability accommodation are funded by the states. This government buck-passing has been going on for years, but what a nursing home meant for Masson was that she would receive the same limited care normally accorded to people three times her age in the final year of their lives. Not surprisingly, the family declined.

Like all states and territories, NSW has few community-based accommodation facilities for people with disabilities and almost none for people with Masson's complex needs. Only 9500 of these spaces exist in Australia, meaning her chances were one in 70. No nursing home meant Jen Masson would have to come home.

The family has had to spend $50,000 on modifications to their house, including converting their patio into a physio area. Although Keith Masson, a machinist, and his mates did all the work, it was still a huge financial burden. And in order to become her daughter's 18-hour-a-day primary carer, Gloria Masson had to give up her job.

The in-home care and equipment was an additional experience. DADHC baulked by delaying decisions, perhaps hoping the Massons would consent to their daughter entering an aged care facility.

"We had to fight for everything," Gloria Masson says. Her daughter now receives six hours a day of physio and bathing services from government and only received items of crucial equipment - such as a wheelchair and custom shower chair - in May this year after her mother's daily phone calls.

Jen Masson is not brain dead, nor is she in a vegetative state. Her eyes are as bright as they were in her high school formal pictures. She'll even smile or cry when she's happy to see you. It's just that she's trapped inside her own body. And American and Australian studies have both shown that only appropriate surroundings and rehabilitation will determine if she will regain any of her mobility. Many people with brain trauma often do.

The Massons have a long way to go but the end may be sooner than expected. Their chemist bill is $900 a month. Their phone and electricity bills have doubled. Worst - and like many government-funded programs - their daughter's in-home care is "temporary" funding. Every 13 weeks DADHC reviews her situation and "could pull the rug out at any time", Keith Masson says. But he is sure of one thing. "We're going to hit rock bottom soon. The money is going to run out but we're going to go as long as we can."

Two years before Jen Masson's accident, the Commonwealth and the states pledged additional budget funds to people with disabilities. The money was committed to addressing what is called unmet need and was spent over the two fiscal years from 2000-2002. But one state came up short. The Australian Institute of Health and Welfare reported that the 2000-01 NSW budget increase was at least $39m below the figure previously agreed on. This conservative estimate did not include the usual 10% annual budget increase that is considered separate from the unmet need funding. DADHC explained this by saying that departmental restructuring had resulted in the "merging of three different financial systems" and that "the accounts for the new department have not yet been audited".

The AIHW did not track the second and final year of this ancillary agreement but the states and Commonwealth report that same expenditure to the Productivity Commission. NSW came up short again. This time it was $80m under foreshadowed expenditure for 2001-02. And again, no mention of the normal 10% budget increase seen every year from 1995 to 1999.

Conservatively speaking, at least $119m in funding for people with disabilities in NSW appears not to have been spent - or at least not to have been accounted for in any way that provides a transparent insight into expenditure levels in this area. But there is petrol that goes with this fire. All disability services are funded on a recurrent basis. Governments cannot decrease budgets from year to year since a person's level of disability almost never diminishes. And though accounted for on a yearly basis, state budgets are determined for five-year periods. DADHC would not release its recent 2002-07 numbers to The Bulletin. But if the same rate of assumed underspending were projected into the next five years, the discrepancy would grow to at least $600m.

Neither the AIHW, the Productivity Commission nor the NSW Ombudsman could cast any light on this anomaly, while the NSW Council of Social Services told The Bulletin it was almost impossible to confirm when and where disability funds were being spent, based on DADHC's public accounting methods.

Some 6069 young Australians with disabilities find themselves stuck in nursing homes. Contrary to the aspirational language of state and Commonwealth disability acts, they are not getting the care they need - yet it's just one result of a score of deficiencies within all state disability departments.

Jen Masson represents a growing number of people with acquired brain injury (ABI). Asthma, car accident, assault, drug overdose, tumour, infection, stroke and even a fall are all potential causes. ABI sufferers don't fit the system because their needs are often both unique and age-specific.

A lifelong intellectual disability can develop at birth from genetic irregularity. Most will never develop their intellect beyond age three and have very limited - or no - communication skills. They may also acquire a host of other conditions such as hyperactivity, autism and eating, sleeping and skin disorders. Many have physical disabilities. Down syndrome is the most prevalent but there are many others. Governments expect - and many parents agree - that home is the best place for these children to grow up. But due to planning and budget shortfalls many have lived at home for 30, 40 and even 50 years.

Margaret Edgar, who lives just outside of Perth, has only two complaints after caring for her son Ken for 44 years: "I have no social life. I have no family." Ken Edgar acquired a brain injury during birth and was left intellectually disabled. He also has "horrific" epileptic seizures and an eczema condition that requires twice-daily care. Edgar's husband died six years ago and she receives a fortnightly carer's pension of $80. She is getting a bit worried, though. Unlike other states, Western Australia requires a person or their family to re-apply for services every four months if they are not selected. Fortunately, the disability department automatically resubmits her application based on the fact she is 71 and on Ken Edgar's needs. Unfortunately, if someone more desperate - and there are many - applies in the meantime, the Edgars' wait continues.

It's taken 10 years and 30 attempts at WA's Disability Services Commission to try to get Ken Edgar into staffed, community-based accommodation and his mother is still waiting. "I cry when I get the results," she says. "I want to see him settled before anything happens to me, like a stroke. I've written nearly a book if anyone has to break into my home, and I've explained in detail how he's to be cared for."

Governments have counted on the goodwill of 300,000 family members to provide what would amount to $15bn a year of unpaid, informal care to younger people with disabilities living at home - an amazing five times what governments actually spent last fiscal year. Many more still are yet to formally identify their role. Governments have also counted on their patience and their frailty. Their children cannot speak for themselves and the parents often lack the time, energy and confidence to speak out, fearing the loss of what little help they do receive or any they may be waiting for. Typically, they only speak out when they are right at the brink.

By 2013, one in three family carers will be over 60. At present, 70% are women and more than 40% reported to the Australian Bureau of Statistics that they had no other choice. They stated that government care arrangements were not available, alternative care was too expensive and no other family member was willing or available. More than 35% have a disability of their own and a third have been physically injured or have acquired some level of depression while acting as a carer.

In the 1970s, attention was drawn to the plight of those with disabilities and their institutional living conditions in a way that horrified Australia. Families of children with disabilities, advocates and public servants all agree that much has happened in the 30 years since. Families receive in-home care. Children and adults with disabilities attend school and work programs. And for decades, they have received some type of disability pension. But the story has changed in recent years.

Since the early 1990s, governments have failed to accurately estimate the funding needs of disability programs - or have deliberately under-funded them - in an attempt to "deinstitutionalise" the supposed "hell holes" and instead support people in appropriate, family and community-based settings. However, instead of adequately researching population-based estimates of how many people will need assistance, state governments have bickered with the Commonwealth over how much the other should contribute. Consequently, while the increase in the rate of disability outpaces that of Australia's population growth, disability departments have just approved a decrease in funding for the next five years in real terms.

To date, the only document of its type in existence underestimates what is popularly known as "unmet need", effectively giving states the right to not collect, to not report or to partially report their own lists of people waiting for help. The AIHW produced Unmet need for disability services: Effectiveness of funding and remaining shortfalls in 2002. It was commissioned by the national disability administrators with the intention of influencing the most recent five-year funding agreement for disability services.

The analysis began with 157,300 people in the category of unmet need for in-home assistance and staffed accommodation. In the end, however, an estimate of 12,500 was arrived at after a multistepped exclusion process. Hard to believe, since Disability Services Queensland furnished an eligible waiting list of 10,000 - and this from a state comprising just 19% of Australia's total population.

The Bulletin learned through the report and the AIHW that only two states provided the required information. NSW provided almost none since it does not keep a waiting list. Neither does the ACT nor the Northern Territory. And the 20,100 young people still languishing in institutions, nursing homes and blocking beds in hospitals were not included.

People who gave up trying for services are invisible. There is also no data for indigenous people or those from non-English speaking backgrounds. AIHW representatives say: "The estimates are low, but we wanted a number governments could agree on. They only gave us three months to produce the [260-page] report."

Victorians Guido Vilano and Paul Christoff have never met. One lives in Bundoora, the other in Preston. Both are married with children and both were diagnosed with multiple sclerosis 20 years ago. They've fought hard, and so have their wives, who now both have chronic back pain. But both recently gave ground and asked Victoria's Department of Human Service for help.

Vilano, who is confined to a wheelchair, initially received three hours per week of morning assistance until his funding was cancelled last September. Two months later he found temporary funding from another provider. His condition worsened and Vilano went on the DHS list for its Home First program, where recipients receive up to 36 hours of permanent, weekly assistance. After almost 2 1/2 years of persistence, he was accepted just a fortnight ago.

Christoff took a different approach. Two years ago, he tried to get evening assistance for just seven hours a week. DHS approved only three. He responded with a letter, two visits to the minister's office and a threat to ring local media if he had to resort to a nursing home. In the end, he got the seven hours only after his wife was diagnosed with depression.

"Why should I have to compete with another person in my situation when we're both just as needy?" Christoff says. "All we're really looking for are the basic necessities in life to survive. I can cope in my home, which is less of a burden on society. The need is there. It's not a matter of who needs it more. But when the system is in crisis, that's how they have to choose."

All states and territories have their crises. In addition to huge queues that can exclude those in dire need or who just go unreported, they have often reacted by placing, or leaving, people with complex needs in vulnerable, neglected and abusive living situations.

Queensland has between 2000 and 8000 people with complex needs inappropriately living in boarding houses. They are not on their waiting list of 10,000. These are privately run, licensed and unlicensed, accommodations that take 50% to 90% of a person's pension and provide little or no services. "They might be lucky to get a small room on their own and a couple of meals a day," says Kevin Cocks, director of Queensland Advocacy Incorporated.

QAI completed an inquiry into 38 Queensland boarding houses and hostels in September of 2003. A 107-page report, Legislation and Life, catalogued grotesque conditions. One hostel worker reported: "Residents pay $30 per month extra for toiletries yet they have a communal soap, comb, shaver and sponge." And when a mother visited her son who had been moved to another residence, she found him naked, lying in urine and comatose.

In November 2003, South Australia's Department of Human Services was the subject of a parliamentary inquiry. The committee found that SA "has the highest proportion of people with disabilities still living in institutions and the lowest proportion in community-based supported accommodation of all the states". And there is no end in sight.

"It's a huge problem," says Dr David Caudrey, director of DHS Disability Services. "I've actually got graphs that sit on my wall that show me the number of eligible clients for disability services has gone from just over 5000 in 1995 to over 10,000 today."

Parents, advocacy groups, government watchdogs and even parliamentary inquiries have been mildly successful in affecting change over the years. Disability departments provide limited information about additional funding, although Sheila McHale, the minister responsible for WA's Disability Services Commission, contests this, saying the state is open in its disclosure of information about its processes, the number of individuals funded and total funds allocated.

Six state and territory disability departments declined to be interviewed for this story. SA and WA were the exceptions. But one state disability department stands alone. It has withstood repeated government and ombudsman inquiries and has adopted the lowest media profile of all over the past three years. Impressive, since it's Australia's largest disability organisation.

In 1999, the former Community Services Commission (now a department of the Ombudsman) launched a parliamentary inquiry into the then-NSW Ageing and Disability Department. Its findings were summarised accordingly: "We present evidence and information which shows that the current structure is inefficient and costly, does not provide good outcomes even for those able to access services, fails to meet the needs of a vast number of individuals, causes stress and angst for families, and lacks the capacity (in its current shape) to address unmet need and future demand."

Government responded and in 2001 created DADHC, encompassing ADD, the Home Care Service of NSW and the disability services provided by the Department of Community Services. In 2002, the NSW parliament turned up the heat and launched its own three-part inquiry into DADHC led by its standing committee on social issues. Its 207-page report, Making It Happen: Final Report on Disability Services, painted just as dire a picture as did the CSC including this telling observation: "We recognise that people with disability are disabled more by the inability of the community to provide the support that they need than by their actual disability."

Once such a report is tabled in parliament, the department under review must respond in six months. DADHC did so and submitted a 19-page response in August 2003. Most of it simply restated the 61 original recommendations put forth by the standing committee on how to address the problems and inefficiencies. In the little space left, DADHC provided short responses that began with statements including, "[The department] is seeking to establish, has recognised, is committed to, [and] is continuing to improve." Jan Burnswood, head of the standing committee on social issues, confirmed that neither the department nor parliament was responsible for subsequently verifying that the situation had improved.

Carmel Tebutt, director-general of DADHC, declined to be interviewed. Marianne Hammerton, the former director-general (1999-2001) and a current employee of the premier's office, also declined. Jane Woodruff, director-general from 1995 to 1999, said: "DADHC and the government don't know what the solutions are in the disability area and that's kind of a depressing situation to be in, and that's when you start to deal only with the crisis. Then you tend to go into a downward spiral where things actually get worse ... Just about every program they've got was a mess."

No matter the position, the sentiment is the same. "It was awful because all you're doing is turning people away all the time," says a recent former DADHC case manager who asked not to be identified. "It was so frustrating because of the lack of funding and the lack of growth funding. It meant some people never in their lives got onto programs before they ended up in nursing homes. It's the most constipated organisation I've ever worked for. Everything went in, but nothing came out. The people were great but the department was hopeless."

Who is to blame? Both the Commonwealth and the states fund disability services. The Commonwealth is governed by the Coalition, while the state and territory governments are uniformly Labor - and they continue to point the finger at each other. The problems have been ignored for so long that it's not just this crop of politicians who are culpable.

"Historically, families have become so used to asking and being told, 'Maybe next time', they eventually stop," says clinical psychologist Dr Mark Rapley, whose academic focus is in community psychology and how people relate to others with disability. "Politics coalesces around a target and if there isn't an easy one to point to, then it's really hard to get traction."

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