Planning a future for our intellectually disabled, epileptic, special, autistic, handicapped, beautiful son.

BECAUSE THE LABELS DON’T MATTER – BUT HE DOES

     

Dear Fellow Parent,

Planning for the future is never easy. It’s doubly hard – no, make that ten times as hard – when the planning relates to somebody who is severely intellectually disabled and who therefore will never have the mental or legal capacity to manage his own affairs after we are dead. Much as we would like to, we can’t reach out from beyond the grave and keep steering our son Mike’s ship for him (not his real name). The best we can do is to fashion a craft that might be equipped to ride out the storms, brief the crew, cross our fingers, and then launch it on its journey with our blessing.

Easy to imagine, but the snag is that we’re not the equivalent of boat-builders either. So where did we start?

Boat drawn by “Mike” (not his real name)

The truth is that for a long time we didn’t. We just put it off “for a bit longer”. But about a year ago, as I fast approached my seventieth birthday, I finally made the decision to begin the process and, at the very least, to commit some goals to paper and start looking for practical solutions. This is the story of what went wrong, and how we learnt to put it right. I hope that some of the information might be of use to you too.

By 2016 it was becoming increasingly clear that the support and love that we give our son is not quite enough on its own. We felt an additional duty to try and ensure that his future had some security, however modest the plans. I’m sure that many other parents know that feeling.

So we bought a book. A book about planning for just such a future. It spelled out every conceivable pitfall and problem that parents of disabled children can face. Unfortunately, the book felt more like an unnecessarily long and wordy exam than a simple and friendly tool. It was over 150 pages long and, unexpectedly, it left me depressed and annoyed.

Depressed because it threw up things that I hadn’t even thought to worry about yet, and annoyed because it didn’t seem to shine enough light on affordable and practical local solutions. Perhaps I’m just impatient, but I didn’t want yet another lengthy review of the problems. I wanted some quick clear answers.

So I wrote my own list. It didn’t go on for page after page or try to analyse every aspect of Mike’s life. It just said:

  1. Home.
    Where will Mike live after we’re gone, and who will look after him?
    Quick Answer: Explore the options for Mike to eventually move into a Group Home. Preferably one run by Crosslinks, who he knows well and is very comfortable with. (Caution: This is not an automatic service from Crosslinks).
  2. Money.
    Will Mike be able to afford a reasonable way of life?
    Quick Answer: Leave some money to pay for some extras in his life. A little cash to top up the essentials where needed and also to put a little sparkle into his day.
  3. Support Group.
    Who can be an Advocate for him if needed?
    Quick Answer: Make sure that at somebody who actually knows him
    well is involved in future decision making about his life. If it is more than one person then so much the better. If it can be people that actually love him, even a little, then that would be ideal.

And that was it. How hard could that be? But how do you convert those simple goals into a practical working format?

The first aim- a future home for Mike – is not currently urgent. He may not need to move for many years, but we’re actively keeping an eye on the situation. We would rather start looking early than delay for too long and leave him at the mercy of whatever emergency government housing was available when we die. Ideally he will stay with us for a while yet and then move into a Group Home whilst we’re still capable of helping him settle in. We just need to get the timing right.

So then I looked at the second goal – to leave some money for him. OK – but how? He’s legally a sort of non-person. Not allowed to have a bank account in his own name, not allowed to grant Power of Attorney over his affairs, not eligible to hold a driving licence, and not allowed to sign any sort of document in the normal manner. He also has limited processing skills and cannot be relied upon to understand complex issues or accurately communicate his wishes.

We considered two options:

  1. Leave a bunch of cash to somebody else with a request that they spend it in his best interest.
    This sounds risky, and of course it is. But in some circumstances it’s still a valid option. If a disabled person has brothers and sisters who can clearly be trusted to cherish and care for their sibling then some parents will leave their estates to their more able children – perhaps with a few strings attached. That could mean asking them to do anything from visiting at a care facility and acting in an advocacy role, all the way through to providing a lifetime of care in their own home. But that can be a big responsibility to hand over. And, anyway, Mike is our only child and we have no relatives living locally.
  2. Set up a Trust and, put some money into it – either now, when we die (or both).
    The tricky part would be finding an appropriate person with the necessary ability to operate it as Trustee. A person who knows him well would be ideal but they would preferably need to be immortal or at least guaranteed to outlive him. OR find an organisation who manages Trusts. They would be better equipped to provide continuity, but would also charge ongoing fees that could steadily erode the cash. And the people involved may also have had little or no contact with Mike himself.

So there was some serious head scratching and number crunching to be done.

We had already been given a taste of these problems by our local bank. When Mike was attending the Ed. Support Unit at the nearby High School, the aides would take a group of intellectually disabled children into the bank and they would go through a weekly ritual of paying $5 into a passbook savings account. This all went well until he tried to withdraw $5 after he had left school. Despite the presence of an aide, who could easily have been consulted, the bank teller took it upon herself to “correct” the withdrawal form that we had filled out and get Mike to deposit another $5 instead!

Not long after that we decided that it was time to close the account. But the bank wouldn’t let Mike withdraw his money. Not legally capable you see….. But apparently they weren’t too fussed about his legal capacity to deposit
money! So, as his father (and the person who had opened the account in the first place, not to mention providing all the $5 notes to deposit) I asked if I could withdraw it. I’m sure you can guess the reply….

No. “Because, he’s over eighteen you see, so you don’t have automatic guardianship rights any more.” They suggested we get Power of Attorney from Mike. A completely stupid suggestion – somebody who cannot legally operate a bank account clearly does not have the legal capacity to grant Power of Attorney. So the bank then suggested that we apply for official Guardianship instead. And all this just so that they could hand back a measly couple of hundred dollars.

Having a bit of a think…. Mike loves to draw.

Onwards and Upwards…

So the search began. “Enduring Power of Guardianship “ sounded good – until I started reading the kit. Just like the Enduring Power of Attorney, it’s designed for people who have the legal capacity to grant it. So that ruled Mike
out again. The next stop was the State Administrative Tribunal (SAT). And there I found a wealth of interesting information and a glimmer of hope:

http://www.sat.justice.wa.gov.au/G/guardianship_and_administration.aspx

We could apply to attend an interview and present our case to be officially appointed as Mike’s legal Guardians. But apparently there were some downsides – apart from the two month wait for an appointment. When I rang their help lines I was advised that granting Guardianship was neither automatic, nor permanent. It was more usually granted in cases where there there was a problem that couldn’t be solved any other way. Problems such as
a family dispute over who should make decisions, or perhaps the need for somebody to grant permission for certain medical procedures, and so on.

I was told that we would only be granted Guardianship for a limited period. Up to a maximum of five years but perhaps for as little as one year. And I was warned that once it was granted we would be subject to strict reporting conditions on issues such as how we spent any Mike-related money. The pleasant woman on their Help line advised us not to apply unless we had really hit a wall that couldn’t be dealt with any other way. That was something of a surprise. So I rang again some weeks later and spoke to another person who gave me the same advice. Hmm….

We had received similar advice from other agencies. The general tone was “Don’t rock the boat unless you have to”. “Don’t end up in the Too Hard Basket if you can avoid it”. “Slightly bent is better than completely broken”…. Etc. For instance, Centrelink will pay a Disability Pension into a bank account that doesn’t belong to the Pensioner provided that the account holder is seen as the bona fide representative of that person and has been registered with
Centrelink as their nominee. There is generally a willingness to let common sense rule, provided that you can keep any potential crap from hitting the fan blades and ruining a perfectly good working arrangement. Continuing a parent nominee arrangement after a Disability Pensioner has passed the age of eighteen seems to be one such case. However, it’s good to be aware that such a setup could possibly be challenged if some kind of dispute
arose.

Fortunately, Mike’s bank account was still linked to me online so I was able to empty it out and then get the bank to close it. The immediate problem had been solved but various other cans of worms had been opened along the way.

Although Guardianship was not an essential strategy for us at that stage, it’s still a valid option for many parents. Sooner or later, one way or another, somebody may require you to become involved in irritating stuff such as attending reviews, filing regular reports, and filling out forms. Setting up a Trust is another such situation.

Even if you decide to avoid or delay the issue of applying for Guardianship it’s well worth exploring the State Administrative Tribunal’s website. It explains Guardianship and the roles of the Public Advocate and the Public Trustee. (The link is above).

Mike draws every day. He uses felt pens, paper, scissors and Sellotape to create composite pictures. We need to ensure that his supply of materials continues in the future.

Public Advocate and Public Trustee

Should you die without having made any other arrangements for your disabled son or daughter, and there are no other suitable candidates for the job, then the default position is that the State will step in. Broadly speaking, the job of the Public Trustee is to manage their finances and – to quote the site – “the Public Advocate may be appointed by SAT as Guardian of Last Resort.”

Depending on who you speak to, the Public Trustee might be seen as a principled government run agency who you can rely on to be there in the future, regardless of individual staff turnover. OR you may hear stories of how tight-arsed and bureaucratic they can be and how driven by restrictive sets of rules. One such instance that was related to me involved a disabled person who lived in a Group Home. This person had a very large sum of money held in trust by the Public Trustee. The staff at the Group Home knew that he loved to do simple cooking, so they applied for the funds to buy him a barbecue. The request was denied – not because he didn’t have the money or because it wasn’t appropriate for him to buy one, but simply because it wouldn’t be for his “exclusive personal use”. Others at the Group Home might use it too. That’s a sad tale, and may not be representative of all their decision making. But it does indicate what can happen when an organisation can only operate within a strict set of rules and can’t have an intimate knowledge of all their clients, or their late parents’ wishes for them.

I also spoke to a very nice woman who was one of the people who act in the role of Public Advocate. I can’t remember the exact figure, but I was stunned by how many individuals there were whose interests she represented. Somebody with such a large case load is unlikely to have much time to devote to individual clients. Their role would be more of a problem solver than a substitute Mum.

It’s worth having a look at the Public Trustee web-site to get a feel for whether they would be suitable for you. Despite the bureaucratic image you can feel confident that things will be done “by the book”. You can actually choose to nominate the Public Trustee to work on your behalf and they provide a number of services for a range of fees.

https://www.publictrustee.wa.gov.au

For example, they can help you organise a will. Even if you don’t use them it can be useful to check out their costs and see how they compare to other options on the open market.

https://www.publictrustee.wa.gov.au/_files/will_and_testament.pdf

Apparently, 40% of Australians die without leaving a will. For the sake of your child, it’s worth being one of the 60% who do make one. Don’t try and dream up a will that will cover every possible eventuality, or you’ll never get it done. Just get a reasonable version of your current wishes down on paper and then be prepared to review it every few years.

Contrary to popular belief it is not essential to use a lawyer to draw up a will, although it’s undoubtedly prudent to do so if your situation is complex and/or if there may be disputes after your death. You can buy basic will forms and guides from the Post Office, or download examples from the internet. For instance, an organisation called State Trustees sells kits to suit individual States, but I have not seen what they contain. I can’t comment on
the merits of any particular kit.

Buy a Kit – Western Australia

More detailed information can also be found at the WA Legal Aid site:

http://www.legalaid.wa.gov.au/InformationAboutTheLaw/BirthLifeandDeath/Mattersafterdeath/Pages/Willsandrelatedmatters.aspx

There is also a fact sheet and a video at the WA Citizens Advice Bureau:

http://www.cabwa.com.au/get-help/make-a-will?highlight=WyJ3aWxscyJd

The key point is to make sure that each page of your wishes has been signed by you, dated, and also signed by two witnesses. In the absence of a proper formal will your executor may even refer to any other clear written statement of your intentions. So it’s good to write your thoughts down – preferably in a will.

Taking the Next Steps – Exploring Trusts:

By this stage we had collected a lot of information – most of which related to things that either couldn’t work for Mike or were just not options that we would choose at that time. We were drifting along on relatively calm seas but still had no clear map drawn up.

So I went back to the book. The book recommended setting up an All Needs Protective Trust and possibly also a Special Disability Trust, either while you were still alive or as a stipulation in your will (A “Testamentary Trust”). The two Trusts differ in several key ways.

Resolving to keep searching for solutions and not chicken out…

An All Needs Protective Trust is just another name for what’s known as a Discretionary Trust. Such Trusts are not limited to only being used for disabled people but can be used in a wide range of circumstances to hold money “in trust” to be used for the good of a Beneficiary or Beneficiaries at the discretion of a Trustee or Trustees. Much like Mum or Dad getting to decide how much pocket money the kids get, and what they get for Christmas. You can appoint a friend or relative as a Trustee, engage a professional organisation to do the job, or you can even take it on yourself. Naturally, there is a necessary legal format to follow.

The big advantage of a Discretionary Trust is that you can spell out what you want it to be used for – accommodation, furniture, clothes, education, medical bills, holidays, outings, presents or whatever. The Trustee(s) then have the power to decide which things to spend it on and when.

By contrast, the Special Disability Trust was designed especially to cater for people who are permanently disabled. They need to pass certain criteria, but if they are registered with Centrelink then you can find out if they qualify or not. The original terms of the S.D.T. required that the money was to be used only for “Care and Accommodation”. This made it more restrictive than an All Needs Protective Trust but the terms were very generous to eligible family members who wished to donate money to the Trust. By contrast, the normal
rules for gifting are far more strict.

A family member can put up to $500,000 dollars into a Special Disability Trust and the donated money would all be wiped from their personal asset total at Centrelink. This could make the difference between their getting an Aged Pension and not getting one. For a normal Trust the comparable figure is only $30,000 over any five year period. You can give more but Centrelink will still count it as “your” asset. The only problem there was that we don’t have a spare half a million right now. Who does? And, realistically, we are never going to have enough money to buy Mike a house to live in and provide all the other necessities as well. Our plan is for him to move into a Group Home run by Crosslinks, who have done a wonderful job taking him out into the community and who have deservedly earned his absolute trust. The job of an S.D.Trust for Mike would be to pay for any “extras” such as outings, dental work, replacement furniture, art materials and so on.

So we paid a lawyer to set up an All Needs Protective Trust for Mike. A fine piece of legal mumbo jumbo that could allow us to open a bank account in the Trust’s name and start paying the occasional bill from it. Rather than try and leave the job to whoever is executor of our wills, we would like to run a Trust ourselves for a few years. The idea would be to eventually hand over a working system to the next generation of Trustees who could then see exactly what sort of things we have used it to pay for.

It all seemed good. For a very short while. Until I started to trying to find out from Centrelink and the ATO (Australian Taxation Office) exactly how I should keep accounts and submit reports to them. Or if indeed I was even allowed to do any of it myself. I rang their respective “Help” lines and patiently waited to speak to somebody who might guide me….
…and waited….
….and waited…
…. and waited…… and on the rare occasions that I finally got past the canned music and recorded messages and through to a human… none of them had ever heard of an All Needs Protective Trust. However they had heard of Special Disability Trusts and suggested that perhaps that’s the way I should be going.

So I did some more research about Special Disability Trusts. And it turned out that since the book we’d been consulting was written (in 2008), significant changes had been made that rendered the advice about Trusts out of date and no longer correct… oh dear… Some parents may still need two Trusts, but definitely not us. Chalk it up to experience and start again…

Donkey, horse and zebra by Mike. The embarrassed expression on the donkey’s face is because he’s just found out that he set up the wrong kind of Trust…

In 2011 important amendments were made to the legislation governing Special Disability Trusts, with the intention of making them a great deal less restrictive. In response to widespread criticism of their inflexibility, the rules had been broadened, including allowing an annual ‘discretionary’ amount that could be spent on things other than direct care and accommodation. Things like dental, furniture, outings etc. In fact all the things that we wanted to use a Trust for. A sort of mini Discretionary Trust contained within a widely recognised Disability Trust that was specifically designed to help parents like us. The initial amount allowed for items other than direct care and accommodation was $10,000 but it was to be regularly updated. At the time of writing in 2017 it’s now up to $11,500 per year which is way more than we would need to spend on Mike. Perfect.

And unlike All Needs Protective Trusts, there was a wealth of information freely available about Special Disability Trusts. Documents, guides, and Help lines that actually helped.

Special Disability Trusts

At last some good news.

Centrelink have a dedicated Special Disability Trust Team. They’re unlikely to be available directly on the phone but you can leave a message and they will ring you back when they get time. Ring 1800 734 750 or, better still, visit the link below first and start exploring. Click on both of the headings and all the little + signs. There’s a ton of useful information there. And you can email the SDT Team. Again, don’t expect a quick answer but when you do get a reply it should be worth the wait.

https://www.humanservices.gov.au/customer/services/centrelink/special-disability-trusts

If you feel confident that a Special Disability Trust is the way to go, you can even download a template that gives you all the required legal wording. It’s not for the faint hearted but you can actually do the necessary amending and re-writing yourself. However, if you do get it wrong you risk invalidating the Trust, so the safest course of action is to find an Accountant or lawyer with Trust experience who can assist you without charging an arm and a leg. If
you don’t already have a suitable person in the role of Family Accountant or Family Lawyer (and we had neither) then shop around.

Relevant documents (Warning: the Trust Template is 23 pages long):

https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/model-trust-deed-for-special-disability-trusts

And the form that Centrelink clients need to fill in to inform them about a new S.D. Trust. The introductory notes give details of what is required in the way of reporting. You will need a qualified Accountant to do the annual reports.

https://www.humanservices.gov.au/sites/default/files/documents/modsdt-1403en.pdf

Current rules for Special Disability Trusts:

https://www.humanservices.gov.au/customer/services/centrelink/special-disability-trusts

You will also need to apply to the ATO (Australian Tax Office) to get a TFN (Tax File Number) for the Trust. They sent us out the form but, again, an Accountant should be able to assist you with that. Currently it’s form NAT 37799 – 07.2016 but sadly they do change the number from time to time. It has the catchy title of “Tax file number – application for companies, partnerships, trusts and other organisations “

When I began the process of looking at Trusts I naively imagined that I would be able to keep the books and do the reporting myself. After all, as a single income family for the past thirty years I had always done our home accounts and many of our tax returns. And we were planning a very simple Trust. But I was wrong. I can be a Trustee for an S.D. Trust and keep the books, but the official annual reporting to both Centrelink and the ATO needs to be done by a qualified person. Fair enough.

I never did get through to anybody who could tell me the rules about Discretionary Trusts but in light of the rules for S.D.T.s I imagine that the position is similar. I may not have been allowed to do all the work, however neat or competent I might be.

So we found a local Accountant to help us. And frankly that was a huge relief. Whatever it costs in the short term, and for the annual reports, it will be money well spent. I can let go of the stress and the worry involved in trying to do it all myself. And as my short term memory, and capacity for precision work, slowly sinks in the west I can at least feel that the legal requirements for Mike’s Trust will be properly catered for.

We now felt that two of the three most important issues had been addressed:

  1. Where Mike would live. We looked into the possibility of his remaining in our family home and seeing if it could become a Group Home of some kind, but the technical and legal barriers would be too great. For a number of reasons, it was just not a suitable solution. He will stay with us as long as we are capable of looking after him but we will continue to keep an eye out for a place in a suitable Group Home, preferably run by Crosslinks who now know him well.
  2. A Special Disability Trust as outlined above.

The third piece of the jigsaw is to establish a small Support Group who can look after Mike’s best interest in the future. The roles are intended to be mostly advisory with no responsibility for day to day care.

Support Groups

Ideally, a disabled person will have a group of people who are prepared to look out for their best interests, visit them, etc. This could be relatives, friends, salaried Carers, or all of the above. And if that is too hard to organise reliably, then paid services are available that can fill the gap. The Future Living Trust (set up by Activ) is one such provider. Look under Services at the link below. They are a small organisation that strives to keep costs to a minimum but they offer many useful paid services. They can also email you sheets outlining various services and costs.

http://www.futureliving.org.au

As mentioned before, if all else has failed, a Public Advocate may be appointed. But our preference has always been to have a small group of friends and relatives who actually already know Mike. But that’s easy to say and not so easy to organise. Many of our friends have volunteered to help but most of them are our age and would be expected to die well before Mike does. Mike is only 24 at the time of writing and may live for another fifty years
or more. We don’t have any immortal mates, and none of our relatives live anywhere near Perth.

We were initially reluctant to approach the younger generation of friends, and children of friends. Being an advocate and supporter for Mike might sound like a pretty serious load to take on. But when it became known that we were doing some planning we were delighted to get a number of offers. So we invited a few friends to belong to an informal Support Group. Ages are mostly in the 30 – 60 range and none are Mike’s direct relatives. Most of them have known him for twenty years, and some now have children of their own who have always known Mike.

We know that we cannot guarantee that the group will stay intact over Mike’s life – indeed he might outlive them all. But we do believe that if we can build a solid base then the group should be able to grow along with Mike, and add or replace members along the way.

The group size was determined by the most people that we can have for dinner at the same time. If we put two tables together we can seat ten comfortably or twelve at a pinch. So, allowing for the three of us, including Mike, that leave seven or eight places. Three of the current group are in their thirties, one in her twenties and some are closer to our own ages.

We plan to meet once a year for a feed and a good chat. They’re all good talkers. When the Trust is up and running I’ll present them with a simple outline of what Mike’s costs have been for the year – key items that his pension was spent on and what the Trust paid for (if anything). Nothing complicated – no more than a single sheet of paper.

We can also discuss any important events in Mike’s life – progress made, funny stories, and so on. The aim is to create an atmosphere of a cheerful social gathering of friends, and not some kind of serious review panel.
When the time comes when we are no longer capable of performing the duties of Trustees then (as Appointors for the Trust) we can formally hand over the job to one or more of the group. By then there will be a clear trail to follow and the new Trustees won’t need to have to wing it from the start and make difficult decisions from scratch about how to spend the cash.

Of course, no plan is foolproof but we feel that we’ve done the best we can for now. We can let go of the stress and worry and, with the help of our friends, set a sound course for Mike’s ship. We also have great confidence in Crosslinks to continue to do a caring and professional job with Mike.

All the very best with your own journey. Start soon but take it in small steps!

From Mike’s Dad.