Caring for their future

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					ADVOCACY
DISABILITY
MULTICULTURALISM



Caring for their future
PLANNING NOW




                           AGEING CARERS OF
             ADULT CHILDREN WITH DISABILITIES
                                             Caring for their future
                                                      PLANNING NOW




Please note:

The information contained in this booklet is a guide
only to possible options that may assist your personal
circumstances. You should also seek advice from a properly
qualified person before making decisions involving the use
of Advance Directives, Wills or Trusts.

The information contained in this booklet has been
checked in September 2010, but MALSSA Incorporated and
its employees accept no liability for any errors or omissions
that may be contained herein or for any acts undertaken as
a result of the information provided.
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The United Nations Convention on the Rights of
Persons with Disabilities (Article 12)

The United Nations Convention on the Rights of Persons
with Disabilities (Article 12) promotes equal recognition
before the law, and supported decision making for all
people with a disability.

Because a person has a disability does not mean they
have lost their legal rights. In 2009 Australia ratified this
United Nations Convention. This means that all agencies
and service providers have a commitment to make all
‘reasonable accommodations’ when assisting people with
disabilities so that they can use and explore their legal right
to exercise their capacity.

Many people with a disability require assistance to exercise
their rights and may need support with their decision making.

When planning for their future it is important to discuss
with your son or daughter the decisions that will affect
their lives.
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Contents
What you need to know about planning now                          4

Planning for the future                                           4

Informal Arrangements of Care                                     5

If your adult child has capacity                                  6

If your child does not have capacity and it is not                9
possible to continue the Informal Arrangements

Making a Will                                                   11

The creation of a Trust or Testamentary Trust                   15

Centrelink ‘Special Disability Trusts’                          17

Advance Directives                                              18

Anticipatory Direction                                          24

Further Information                                             25
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What you need to know about planning now

You and your family can decide in advance who is best
suited to make decisions about the care of your adult child
and what form it should take.

It is important to plan for the future maintenance and
support of your adult child with high support needs as
soon as possible. The laws that deal with Wills, Trusts and
Advance Directives such as Enduring Powers of Attorney
and Guardianship will assist with putting future care
arrangements in place.

Planning for the future

Choosing the right option for a son or daughter who has
high support needs is a first step to safeguarding their
future care. There are many things to think about such
as making a Will, creating a Trust or Testamentary Trust
(which can be created in a Will) and deciding about their
care, health and finances.

If you are caring for a child with high support needs it is likely
that you already have informal arrangements in place to assist
you in their daily care. The question and concern for many
parents in your situation is what arrangements can be put in
place now to prepare for the time when you can no longer
continue to provide for your son or daughter.

There are several ways to plan for the future that deal with
money and day-to-day living (caring) arrangements for
your adult child with high support needs.

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Informal Arrangements of Care

One option is to continue the way your adult child is cared for
with the current informal arrangements. However a plan
must be in place to ensure that this will happen when the time
comes that you can no longer take this responsibility.

The plans you need to make are:


    1.   Discuss with family and friends the best way to
         continue the current arrangements of care and
         money management for your adult child. It is
         important to include your son or daughter in
         these discussions if at all possible.

    2.   Make your Will.


    3.   Talk with Centrelink about the Special Disability
         Trusts and other types of trusts which are
         detailed later in this booklet.


    4.   Complete legal documents called Advance
         Directives for your future decisions.
         This will involve:

             a) Appointing an Enduring Power of Attorney
                for your own financial management.
             b) Appointing an Enduring Power of
                Guardianship for your health and personal
                decisions.




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If your adult child has capacity

Mental capacity is the ability to understand what a
document is and what it does. If a person has mental
capacity he or she can sign legal documents that will
express their wishes and appoint decision makers.

Because a person has a disability does not mean they
cannot understand and give consent to decisions that
will affect them. If your son or daughter can understand
the decisions to be made, the choices involved, and
the consequences of those choices then they should be
encouraged to express their wishes and appoint someone
they trust to assist them when their parent (or current
carer) is no longer able to assist them with their finances,
their medical treatment and their care.

It is important to have a doctor assess whether your adult
child with high support needs has ‘mental capacity’.

If your child has capacity and is over the age of 18 they
should be supported to:


 1.     Make a Will.


 2.     Complete documents called Advance Directives for
        their future decisions. This will involve:

            a) Appointing an Enduring Power of Attorney
               for their own finances.
            b) Appointing an Enduring Power of
               Guardianship for decisions about their medical
               treatment, care and living arrangements.

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Even if an adult child has a disability they may still be
able to make these documents with proper support.

How do we best support our adult child with high
support needs if they have the ‘capacity’ to make
these decisions?

Your adult child will need to be assisted to think about
the issues involved with making a Will, Enduring Power of
Attorney or Enduring Power of Guardianship.

In particular, your adult child will need to be assisted to
identify the people who they wish to be their Enduring
Guardian and Enduring Attorney. If they are making a Will,
they will need to identify beneficiaries and one or
more Executors.

You can obtain the information we suggest from the
groups and individuals listed, including the Legal Services
Commission. You can also begin the process of talking to
family and friends to find out what, if any, role they may
play in the future. Then use this information to begin
communicating with your adult child about the people and
issues that we mention, so that they can provide you with
their view about how the future should be.




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Once the views of your adult child are known, you can have
documents prepared by a private lawyer recommended by
the Law Society or have Public Trustee make them. You can
seek advice from any of the organisations we list to assist in
this process.

You can obtain the legal papers for Enduring Power of
Attorney and Enduring Power of Guardianship from the
Legal Services Commission or ServiceSA. If you plan to have
your adult child sign these ‘Do-it-Yourself’ kits, it is always a
wise idea to speak to the Legal Services Commission or the
Office of the Public Advocate to make sure they are filled
out correctly before signing.




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If your child does not have capacity and it is not
possible to continue the Informal Arrangements

It is important to:


 1.     Discuss with service providers about future care
        and living arrangements.


 2.     Discuss with the Office of the Public Advocate and
        the Guardianship Board about future decision-
        makers for your son or daughter.

 3.     Make your Will.


 4.     Talk with Centrelink about the Special Disability
        Trusts and other types of trusts which are detailed
        later in this booklet.


 5.     Complete legal documents called Advance
        Directives for your future decisions.
        This will involve:

             a) Appointing an Enduring Power of Attorney
                for your own financial management.
             b) Appointing an Enduring Power of
                Guardianship for your health and
                personal decisions.
If our adult child does not have capacity to make
decisions and we can no longer care for them at a
time in the future, what will happen?

While informal care arrangements exist, it is very important
to make sure that your adult child is involved with
appropriate support services, wherever this is possible. This
will ensure that a number of workers within those support
services know about the specific needs of your adult child
and will be able to inform others if the need arises.

If you feel that informal arrangements involving yourself or
others cannot continue, it is important to seek advice from
the Office of the Public Advocate. It may be necessary to
make an application to the Guardianship Board asking for
a Guardian and /or an Administrator to be appointed. An
Administrator can look after your adult child’s finances.

The Guardianship Board will always consider how adequate
the existing informal arrangements are, and whether
it is necessary to change them. Formal orders from the
Guardianship Board are considered a last option when
other alternatives are not available or adequate to ensure
the care of your adult child.

Where there is no-one able or willing to continue the
informal decision making role, the Guardianship Board may
appoint the Public Advocate to be guardian of your child,
but this is as a last resort. If there is no one willing or able
to look after your adult child’s finances, the Board may
appoint the Public Trustee to do this.



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Making a Will

Can I make a Will and can my adult child also make
a Will?

It is most important as a parent of an adult child with high
support needs that you make a Will. A Will allows you to
decide how your assets and money will be divided after
your death, and whether the money can be distributed
over a long time through the use of a Testamentary Trust
for the benefit of your adult child. For the sake of your
adult child do not risk dying without a Will.

If your adult child with support needs is over the age of 18
and can understand the purpose of a Will, then they have
the right to make their own Will with assistance.




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Why should I make a Will when my family can take
care of things when I die?

Making a proper Will is the only way to be sure that your
property and money is divided up in exactly the way
you wish after your death. By making a Will you provide
instructions and directions to your family and friends.
A Will is the best way to ensure that there is no time
and money wasted in putting your affairs in order and
maintaining care and support for your adult child.

What happens if I don’t make a Will?

If you die ‘intestate’ (without a Will) it can take much longer
before money or assets can be transferred to relatives and
there are legal restrictions to the distribution. Making a valid
Will is the only way to be sure that your money goes to the
people you chose. A valid Will gives you the ability to decide
exactly how your estate is to be managed and divided, and
this is essential if you have an adult child with high support
needs. Not having a valid Will can create many problems
for your surviving husband or wife, as well as for your
immediate family with care and maintenance needs.

What does an Executor do?

At least one Executor is nominated in your Will. The
duties of an Executor include identifying the property in
your estate, as well as the payment of debts, outstanding
taxes and funeral expenses. After these things have been
completed, your Executor can distribute the money and
property to those people you have specified.


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I do not read English very well.

A Will made in any language can be accepted in South
Australia, but it needs to be translated into English before
the court can accept it, so it is best to have your signed Will
in English to start with, and a personal translation by an
accredited person if needed.

What difference does it make if most of my assets
are held jointly with my husband or wife?

Land or a house that you jointly own with another person
such as your husband or wife does not form part of your
estate because your interest automatically passes to the
survivor in the event of your death.

Where should I go to have my Will prepared?

Your Will can be drawn up by a lawyer who speaks your
language. The Law Society Referral Scheme can advise you
about lawyers near to your place of work or residence. You
may also have your Will prepared by the Public Trustee or
any one of a number of private trustee companies.

It is important that your Will includes the full name, date
of birth, family relationship, address and occupation of all
the people to be named in your Will.

What is Probate?

Probate is a legal process in the Courts that formally
recognises your Will and allows the Executor to attend to
and finalise the matters of your estate.

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Where should I keep my Will?

Your Will should be stored in a safe place. Your Executor
should be able to access a copy of the Will, and instructions
about where the original is held. Trustee companies,
the Public Trustee and some law firms will offer a secure
depository for your Will.




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The creation of a Trust or Testamentary Trust

What is a Trust?

A Trust is usually an amount of money that has been
set aside in a special legal ‘structure’ for the benefit of
someone else. A Trust is a means of safely securing money
or assets to be made available in certain ways or for
certain purposes over a length of time, and it is managed
by a Trustee or several Trustees. A person who receives a
distribution of money or assets from a Trust is referred to as
a Beneficiary.

What is a Testamentary Trust?

A Testamentary Trust is a Trust which is created in your
Will and which is designed to operate after your death. An
example would be a Trust fund designed to allow for the
care and management of a dependant family member.

What is the role of a Trustee?

A Trustee is obliged to put into effect the terms of the Trust
(such as paying for the maintenance of a dependant family
member). The Trustee is at all times required to act in the
best interests of the Beneficiary who may be your adult child.

Can a Testamentary Trust ensure that my son or
daughter with a disability is properly taken cared for?

Your Trustee has the ability to make decisions about
the amount of money which should or can be provided


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from the Trust to your adult child, and the frequency of
payments. This can greatly reduce or prevent the risk that
your adult child might spend money unwisely, or be taken
advantage of by others. It should be remembered that your
Trustee is bound to preserve the assets of the Trust for the
benefit of your adult child with high support needs.

The limit of the Trustee’s ability to make decisions is
determined by the terms of the Trust which are set out in
your Will or in a separate document that is referred to in
your Will.




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Centrelink ‘Special Disability Trusts’

Centrelink has introduced special rules that allow for a
certain amount of money to be exempt from an Assets Test
assessment for those who contribute money in trust to the
care and welfare of a family member with a disability. This
means that if you put money in trust to help your son or
daughter with a disability, that amount of money will be
taken into account when Centrelink assesses whether you
can obtain various benefits.

There are many conditions and things to think about if
you wish to do this. You should contact Centrelink to find
out more. You will also need to seek professional advice
from someone such as an accountant once you have
received all the necessary information from Centrelink.
To find out more about this, you can call the Centrelink
Special Disability Trust Team on 1800 734 750. To speak to
Centrelink in languages other than English, telephone
13 12 02 (TTY 1800 810 586).




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Advance Directives

a) Enduring Power of Attorney for Financial
   Management

What is an Enduring Power of Attorney?

An Enduring Power of Attorney is a legal document in
which you can appoint a trusted person to manage your
money and business affairs if and when you are unable
to make your own decisions (that is, if you lose mental
capacity). It is important to discuss how you would want
your finances to be managed with the person you appoint
while you are able to do so.

When should a person make an Enduring Power
of Attorney?

It is a good idea to make an Enduring Power of Attorney
as soon as possible as you never know when an accident or
illness may affect you. It is advisable for all people over 18
to make an Enduring Power of Attorney.

How can a person make an Enduring Power
of Attorney?

It is quite simple, but needs to be done properly. There
are a number of ways – you can see a lawyer who speaks
your language, or seek assistance from the Legal Services
Commission, the Public Trustee, or Service SA. You can also
buy a ‘Do-it-Yourself’ kit from these places.



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What happens if I don’t have one?

If you lose your ability to think about or understand
your finances and have not made an Enduring Power of
Attorney, it will be too late for you to do anything about it.
Those close to you would need to make application to the
Guardianship Board to appoint an Administrator.

Who should I choose as my Enduring Power of Attorney?

Your Attorney should be a trusted person capable of
making important decisions about your money and
keeping proper records of those decisions. You must be
confident in the ability of your appointed Attorney to
perform the role. It is also important to consider the age
of the person that you appoint. If at all possible, your
Attorney should be someone who is likely to outlive you.

What if my Attorney takes my money?

The law imposes criminal penalties for the misuse of power
by an Enduring Power of Attorney. To minimise the risk of
misuse of this power by your Attorney, safeguards can be
included in the preparation of the document. You should
get further advice in relation to this.

Must I have an Enduring Power of Attorney?

If you do not appoint an Enduring Power of Attorney, it is
not against the law, but it is likely to make it more difficult
and uncertain if in future you have an accident or illness
which prevents you from making decisions for yourself
about money and assets.

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Can I make an Enduring Power of Attorney for my
adult child with a disability?

You will only be able to assist your adult child to make an
Enduring Power of Attorney if they have mental capacity.
In other words, they must have the ability to understand
what the document is and what effect it will have. He or
she must be able to sign it themselves.

What happens if I own land or property and want to
appoint an Enduring Attorney?

The Lands Titles Office (LTO) will require the Enduring
Power of Attorney document to be lodged whenever there
is any need to deal with land or houses. There is a fee
associated with the lodgment of the document.

b) Enduring Power of Guardianship for decisions
   about health care and lifestyle

What is an Enduring Power of Guardianship?

An Enduring Power of Guardianship is a legal document
signed by you appointing someone you trust to make
medical, health care, accommodation and lifestyle decisions
for you if you are unable to make your own decisions (that
is, if you lose mental capacity). It is important to discuss
your values and what is important for your life with the
person you appoint while you are able to do so.




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When should a person appoint a Guardian?

It is a good idea to make an Enduring Power of Guardianship
as soon as possible as you never know when an accident or
illness may affect you. It is advisable for all people over 18
to appoint a guardian. It is particularly important if you are
caring for someone with high support needs.

Must I have one if I already have an Enduring Power
of Attorney?

It is recommended that you have both an Enduring Power
of Guardianship and an Enduring Power of Attorney. Your
Guardian can make decision for you about your medical,
health care, accommodation and lifestyle needs, but cannot
make financial or business decisions for you.

Can my Enduring Power of Attorney also be
my Guardian?

Yes, you can choose to appoint the same person to be both
your Guardian and your Enduring Power of Attorney for
financial matters.

Can more than one Attorney or Guardian be
appointed?

Yes, you can choose more than one Guardian and more than
one person as your Enduring Attorney. Depending on the
way that the legal documents are written, each Guardian
or Enduring Attorney may make decisions alone or jointly
(together with others who have been appointed).


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Who is the best person to be appointed an
Enduring Guardian?

Anyone who is over 18 can be appointed as an Enduring
Guardian, but careful thought must be given in advance
to the suitability of the person. The appointed Guardian(s)
should be familiar with the day-to-day routines and needs
of the person. They should have a genuine interest in and
desire to see that the person receives the most appropriate
quality of care available in all aspects of their life. The
question that should be foremost in their mind is “what
decision would this person have made before they suffered
mental incapacity, and how can I best achieve this now?”

Why don’t I just let the government make decisions
if they need to?

One of the great advantages of having an Enduring
Power of Guardianship in place is that you can provide
instructions as to who the Guardian must talk to and
consult with before decisions are made. The Guardian
will be legally bound to follow these instructions. In the
example of your adult child with a disability, this would be
an important reason to talk to them to find out who they
wished to be part of the process of decision-making about
their lifestyle.

Can I send my children to do these documents
for me?

It is recommended that you have a conversation with
your immediate family about your future decisions.


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Adult children may be able to assist in preparing these
legal documents for their parents. However, as both the
Enduring Power of Attorney and the Enduring Power of
Guardianship are important legal documents that give
considerable power to the person(s) appointed, you must
sign the documents yourself. Your children cannot do so on
your behalf.

Is it expensive?

The value of having an Enduring Power of Attorney, an
Enduring Power of Guardianship, a valid Will or any of the
other Advance Directives that have been referred to in
this booklet cannot be measured in monetary terms alone.
However, as costs are often a consideration, you should not
hesitate to ask your professional advisor about this aspect
at the outset.

It is important to remember that ‘Do-it-Yourself’ kits
for Enduring Power of Attorney and Guardianship are
available from the Legal Services Commission and ServiceSA
for a small fee. If you intend to fill these documents out
yourself and have your adult child sign them it is wise to
have the Office for the Public Advocate check that they
have been filled out correctly and provide the best level of
protection to safeguard the future of your adult child with
high support needs.




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Anticipatory Direction

What is an Anticipatory Direction?

It is a legal document in which you can record your wishes
about the medical care and treatment you want or do not
want when you are near the end of life. It is sometimes
called a ‘Living Will’ and can assist others in knowing your
wishes if you are no longer able to communicate. It can be
made at the same time as the Enduring Power of Attorney
and Enduring Power of Guardianship.




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Further Information

The Legal Services Commission of South Australia
has advisers who can provide advice on all the matters
addressed in this booklet. Enduring Power of Attorney
and Enduring Power of Guardianship kits are available to
purchase, and you can make a free half-hour appointment
in order to complete the documents correctly, have them
witnessed, and discuss any additional matters. If you live in
country SA, ask about the location of regional offices.

The Legal Services Commission of South Australia
82 - 98 Wakefield Street, Adelaide SA 5000
GPO Box 1718, ADELAIDE SA 5001
Telephone Advice Line: 1300 366 424

Public Trustee of South Australia can advise you on
Wills, Trusts, Enduring Powers of Attorney and Enduring
Powers of Guardianship; including what you need to
consider, preparation of all the necessary paperwork, and
explanations for you in your own language. Public Trustee
will be able to assess your situation and recommend
whether a Testamentary Trust is suitable for your
circumstances as part of a Will.

Public Trustee of South Australia
211 Victoria Square, Adelaide SA 5000
PO Box 1338, ADELAIDE SA 5001
Tel: (08) 8226 9200 | Email: pt.enquiries@sa.gov.au
The main Reception office is located on the south-western
corner of the building facing Wakefield Street, City.



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The Law Society of South Australia Legal Referral
Service. You can find a lawyer who advises on Wills,
Trusts, Enduring Powers of Attorney and Enduring Powers
of Guardianship.

The Law Society of South Australia
124 Waymouth Street, Adelaide SA 5000
GPO Box 2066, ADELAIDE SA 5001
Tel: (08) 8229 0288 for the Legal Referral Service

The Office of the Public Advocate can advise and
answer questions about Enduring Powers of Guardianship
and Enduring Powers of Attorney. It has an enquiry service
9am- 5pm Monday to Friday where you can leave your
details for a call back with the answers you need.

The Office of the Public Advocate
Level 7 in the ABC Building,
85 North East Road, Collinswood SA 5081
PO Box 213, PROSPECT SA 5082
Tel: (08) 8342 8200 or for country callers 1800 066 969
www.opa.sa.gov.au

ServiceSA Government Information outlets provide
forms for Enduring Powers of Attorney and Enduring
Powers of Guardianship.

Tel: 13 23 24 (TTY 13 36 77) for your nearest location.




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Disability SA can provide assistance and guidance about
support services available for your adult child. Remember
that it is very important to have appropriate support
services and workers in place in case you are unable to care
for your adult child for any reason in the future, in addition
to seeking advice from the professional organisations
we recommend.

Disability SA
103 Fisher Street, Fullarton, South Australia (Main Office)
Tel: (08) 8272 1988 | Email: disabilitysa@dfc.sa.gov.au
www.disability.sa.gov.au

There are many suburban and country Disability SA offices.
Please contact the number above or consult the website for
further details.




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Please use these pages to write down information given to
you by a professional advisor.

NOTES:
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If you require further copies of this booklet or an audio
version of this booklet please contact MALSSA:

Tel: (08) 8351 9500 | Email: malssaadmin@malssa.org.au
Funded by:
Department for Families and Communities
Office for the Ageing
Tel: (08) 8207 0522
www.familiesandcommunities.sa.gov.au




Printed in October 2010