Caring for your disabled adult child – what can go wrong !! In an earlier article I addressed what can go wrong in failing to properly plan for the continuing care of your disabled adult child if you should die.
In this second part I will explore the continuing crucial theme of proper planning for yourself and your child in the event of another increasingly common event – being unable to care anymore because of frailty or even losing your capacity to manage your own life let alone that of someone else.
Living longer sounds great but it comes with downsides, particularly adverse medical events. A common one arises from an inevitable fact – longevity – once we pass the magic age of 80, there is a 1 in 4 chance that we could suffer from dementia or some other debilitating physical or mental condition. If you have been caring for an adult child, an inability to continue to do so combined with a failure to prepare or plan for that, creates a major family crisis that can lead to all sorts of calamitous consequences.
Here is a recent example. Betty was 82 and her husband had recently died. She had 4 adult children, 3 of whom were independent, well established and prosperous. Her fourth child, Bonny, aged 58, had been borne with severe down syndrome. Bonny had lived in the large family home with Betty (and her late husband) all her life and was totally dependent on her parents. Bonny received a disability pension but Betty’s financial circumstances (a self-funded retiree) meant she did not receive any social security assistance.
Despite all her previous good health indicators, one day, suddenly and unexpectedly, Betty suffered a stroke and spent some 10 days in hospital. When she was due to be discharged, she had lost the power of speech as well as most of her decision making capacity. The extent of the sudden crisis management demands on the family became clear when it was realised that:
1. While Betty had made an Enduring Power of Attorney, she had only appointed her husband as her Attorney and he was now deceased.
- This meant that Betty had no Enduring Attorney and no one else who was legally entitled to make financial decisions for her
2. She could not return home and had to be admitted to an aged care facility
- This required the payment of a large refundable accommodation deposit of $400,000
3. Bonny was now living in the family home alone
- The other children had to work hastily on an agreed roster to be with Bonny in shifts throughout the day and night
- There was even discussion about having Bonny move in with one of their families
4. More permanent arrangements for Bonny’s accommodation and care needs were now paramount
The other children were now faced with an unenviable series of decisions and actions that were required to be addressed immediately to protect Betty and Bonny’s welfare. Here were some of the conundrums they had to face:
1. Financial decisions were needed to be made for Betty including how to pay the $400,000 to the aged care facility
- The most immediate way to do this was to sell the family home which would then leave Bonny high and dry
2. With no one entitled to make financial decisions for Betty, someone had to apply to the Queensland Civil and Administrative Appeals Tribunal to be appointed her Administrator
- Trouble was this would take time and to make matters worse, none of the children could agree as to which of them should apply
3. Financial, lifestyle and personal decisions now had to be made for Bonny as well
- Further trouble arose on this aspect when it was realised that Bonny had never made an Enduring Power of Attorney appointing anyone formally to make decisions for her because it had not been needed before and, in any event, Bonny did not have the requisite capacity to make such a document
4. As Bonny could not live in the home by herself, where was she going to go and who was going to pay for the costs of alternative accommodation and care?
These were just some of the pressing issues confronting this family that were almost guaranteed to inject a high degree of tension, stress and anxiety in all of the remaining children and could potentially result in the implosion of the family.
Needless to say, from an objective view, the scenario was not entirely unexpected and to some extent was almost inevitable. Yet none of the family had the foresight and motivation to actually plan for it and do something about it beforehand.
Some of the things that we would have advised needed to be addressed before the crisis occurred would have been:
1. Betty should make a new Enduring Power of Attorney after her husband’s death
- It would not be any old EPA but rather it would contain special terms and directions that Betty could insert including what should happen to Bonny if Betty lost her capacity to make her own decisions and decisions about Bonny’s welfare
- This might include, for example, a special clause to require her Attorneys to use so much of Betty’s money as is necessary to ensure that Bonny’s care and accommodation needs are met
2. Betty should make a new Will in which she would be advised to incorporate what is known as a Special Disability Trust for Bonny that would enable Bonny to have the benefit of a share of Betty’s estate and at the same time preserve her disability pension
3. Betty should obtain some good financial advice to address the potential financial demands that would arise from the very scenario that ensued
These are just some of the issues we would have raised with Betty. If she had confronted them before the crisis hit, the transition in her family’s circumstances would have been far smoother and, from my experience, may even have been crucial in keeping the family together. As it was, in avoiding the future realities, Betty has effectively assigned her family to disharmony and disarray, something she would never have wanted.
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