Providing for disabled children after parents can no longer do so is a major problem for many families.
Financial provisioning for Australians with disabilities has pushed its way on to the national agenda, courtesy of the National Disability Insurance Scheme.
But families with a member whose disability necessitates life-long care continue to struggle with their own arrangements.
Social worker and mother of three, Gabrielle Fakhri, 61, says her support is inadequate. Providing 24-hour care for a high-needs individual has left little time or energy for long-term planning, and even less money to set aside.
Fakhri's eldest son Simon, 39, has a severe intellectual disability, autism and bipolar disorder, and lives at home with her, her husband and Simon's youngest brother Charbel. Middle son Joseph is married and lives next door.
Simon receives a Centrelink Disability Support Pension that covers his daily expenses, taxi fares, excursions and day placement costs, but his care needs have restricted Fakhri's ability to work.
"It's a struggle," she says of their family circumstances. "Financially we still have a mortgage, so I don't have a great financial plan for him."
The Fakhris' battle is in common with many families. About 314,000 people accessed disability support services provided under the National Disability Agreement in 2010-2011, according to the Australian Institute of Health and Welfare.
The recipients' median age was 33, and 30 per cent had an intellectual disability. More than half required assistance with independent and community living activities.
The family home is Fakhri's only asset, and it is willed equally to her three sons, with the proviso that Simon receive a greater share if it is needed to help fund a residential placement.
Determining how to split assets fairly between disabled children and their able siblings can be confusing for families, says Fakhri, who has received conflicting advice on the subject. One solicitor advised bequeathing everything to Simon, while another suggested leaving him nothing, as he would be cared for in a government institution after she died.
While her younger sons favoured the first option Fakhri feels this would be unfair, given that both have contributed to the family financially when she has been unable to work.
"My sons adore their brother," Fakhri says. "I showed them the will and they both said, 'Mum, leave it all to Simon'."
Simon has been on a priority list for residential accommodation for seven years, and seeing him settled in a permanent home would remove many "what-ifs" from the planning equation says Fakhri, who describes her attitude as "fatalistic".
"I'm hoping the government pension is enough to cover his needs in a government-funded placement ... I don't want him to live with my other children," she says.
"Financially, I haven't put it in my head ... I'm living in this dumb world where I think something will happen for the best."
Having independent living arrangements in place for a disabled person can alleviate the pressure on parents and siblings, says the principal adviser at Lighthouse Financial Group in Sydney, Anthony Newton.
Families usually begin to plan when the disabled person reaches adulthood or their parents are approaching retirement age, Newton says.
Parents are increasingly using their wills to allocate part of their estate to a Testamentary or Special Disability Trust (SDT), rather than leaving a lump sum to their disabled child, who may not be capable of managing it.
Uneven asset splits in favour of disabled children are common but can be a source of conflict, Newton says; SDTs allow up to $596,500 to be set aside to help fund care for a severely disabled individual, without affecting the recipient or the parents' entitlement to social welfare benefits.
Trusts work best when capable family members are willing to become trustees and take long-term responsibility for managing the financial affairs of the disabled beneficiary.
"A committee of siblings, another family member and a trusted professional person may also be effective and create safeguards and accountability for how funds are spent," Newton says.
Having the right person in charge is vital, says Stephen Booth, a lawyer specialising in estate planning for families of children with disabilities who works with the law firm Coleman Greig.
"I think getting this as right as possible is the crucial decision because it is not wills, trusts, government departments or organisations which protect people," Booth says.
"People protect people - so whatever structure or arrangements people establish, it is critical they have the right person managing it, if the right thing is to be done by the son or daughter with a disability."
If there are no suitable personal options, trusts can be managed by institutional trustees - either private companies or the state's trustee and guardianship body.
When this occurs, having someone who is actively involved in the life of the disabled person to advocate for them is vital, Booth says.
Former community worker Pamela Raeburn says her son Nathan, 28, is ready to step up to the plate when she is no longer able to manage the affairs of his younger sister.
Victoria, 26, was born with a chromosomal disorder, cleft lip and palate, hearing impairment and intellectual delay. She and her husband, who also has a disability, live with Raeburn.
"Nathan said from an early age he would take care of things when I pass over," Raeburn says.
She counts herself lucky that her children have always shared a close bond, despite Nathan enduring some childhood bullying due to his sister's disabilities.
Victoria has attained some independence but struggles with budgeting and is easily taken advantage of financially.
"Money is a real issue with her and her husband," says Raeburn, who takes money from the couple's Centrelink pensions to pay their private health premiums and bills.
Like Fakhri, she says supporting someone with high medical needs, coupled with becoming a single parent in her children's teen years, has left little to spare. Disability trusts and specialist legal and financial planning advice are academic propositions families like hers just can't afford.
Post-divorce, she "didn't have two cents to rub together", and her family stepped in to help her buy a home, Raeburn says.
What she does have to leave will be split equally between Nathan and Victoria, she says.
"It wouldn't be fair otherwise."
What is the NDIS?
The National Disability Insurance Scheme (NDIS) is a proposed new support scheme for about 410,000 Australians with significant long-term disabilities, being trialled from this year.
It aims to deliver certainty of funding and more tailored support for disabled people and their families. To be administered by a federal agency, the NDIS is expected to add an additional $6.5 billion to current government expenditure on disability services of $7.1 billion.
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