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What will happen to my disabled child if I die?

What will happen to my Autistic or disabled child if I die is a question that every parent of a disabled child will ask themselves.

If you do have a child with a disability, it is important to give some thought to this issue. Who will have guardianship of my child if they are under 18, or how and will assets be divided to safeguard your child’s future?

Preparing a will and your estate in preparation for your death can be quite confronting. However, if you have a child with a disability, it is essential that you make plans to ensure your child’s future as soon as possible.

The Words, Free National Autism Directory. 
What will happen to my disabled child if I die

Estate planning.

Establishing an estate plan as soon as possible is important; updating it regularly is vital. It involves determining how your assets will be preserved, managed, and distributed after you pass away or if you become incapacitated. It is more than just a will.

You will need to consult with a Solicitor or Lawyer to establish an Estate plan. Below are some things you may wish to consider.

Your Will

Writing a will is a difficult thing to undertake. And there is far more involved than just dividing up financial assets. If your child is under 18 you will need to consider guardianship and custody of your child/children. You should discuss the possibility of guardianship with the nominated individuals before officially nominating them in your will. Start the conversation early and be realistic and honest.  

You may wish to consider a few things before appointing a Guardian for your child. Does the person you choose have similar values to you and your family? Does your child feel safe in their presence? Would they feel comfortable taking responsibility for your autistic or disabled child? This is not an easy decision to make. Please give it some thought and engage in an open and honest discussion with the individual you wish to ask.

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Division of assets

Give some thought to the assets you own. Property, cars, jewellery, Superannuation and heirlooms.

If your child is under 18 years of age

You can provide for your children in your Will in any manner you wish. Children under 18 years can’t legally hold most property, so assets and property will be held in Trust on their behalf until they turn 18, or an age you specify in your will. Generally, your Executor will be the one who acts as Trustee and holds the asset for your child.

If you child is over 18 years of age

When a child is 18 years or older, there are several ways assets may be used to support your Autistic or disabled child. If your child is unable to make decisions of their own accord or has an intellectual disability, they may benefit from the inclusion of a Special Disability Trust in the Will. Generally, you will need to appoint a Trustee to look after the funds.

Trustees of a Special Disability trust are able to do all of the following:

  • pay for your child’s dental and medical expenses, including membership costs for private health funds.
  • pay the maintenance expenses of the trust-property assets.
  • spend up to $13,000 for the 2022-23 financial year on discretionary items not related to the care and accommodation needs of the beneficiary. This expenditure should remain compliant with the legislative requirements of a Special Disability Trust.

If your child does not qualify for the Special Disability Trust, then your assets can pass directly to your child. You may consider making previsions with family or friends to ensure your child has trusted people to look out for them and advise them on major life decisions.

What will happen to my disabled child if I die

The executor of your will

You will need to appoint an Executor of your will. Your executor is appointed to fulfil your final wishes as outlined in your will. When you die, your executor becomes responsible for managing your estate. Therefore, it is essential that you appoint someone you and your child trust.

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Enduring powers of attorney

An enduring power of attorney is an individual who you appoint to make decisions for you when you are unable to make decisions yourself. This may be due to a mental health issue, serious injury or illness.

It allocates the responsibility to another trusted person, chosen by you, to make decisions on your behalf. This may be to manage your financial affairs or making medical and personal decisions about your care. This may be helpful to reduce the need and stress of your adult Autistic or disabled child. Having a trusted person to make complex and difficult decisions may be vital to the wellbeing of your child.

Again, it is important that your child knows and trusts this person. It is also advisable to have an open and honest discussion about your wishes before appointing this person. Where appropriate, include your adult child in discussions.

Funeral instructions

At this time, it may be wise to plan the funeral arrangements. Again, you are reducing the stress and responsibility for your autistic or disabled child. While it is essential for your child to have input into how they wish to farewell you, arranging the basics beforehand may minimise trauma and pain.

Letter of Intent and Social Story

While not legally binding it is important to outline all important and relevant information about your child and your estate. There is no doubt that your child will be destressed and disorientated when you pass. It is essential that all relevant medical information be on hand and be easily accessible.

It may include medical information; NDIS plans and details. Allied health and therapies and trusted individuals your child feels safe with. Along with school details if applicable.

It might also include a social story on your passing. A picture board of important people that your child will be seeing and speaking to in the days after your passing. This may include the Guardians you have appointed, your solicitors’ friends and family and even the priest or pastor who will be conducting your funeral. Ensuring that you may be able to reduce the overwhelm a little on your passing.

This document should be updated regularly and may be very useful to future caregivers. It can also be helpful for siblings who may be taking on the carer role when you pass.

No one wants to think about death. However the question of What will happen to my disabled child if I die is an important question we all should be asking ourselves.

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