Creating an estate plan for parents with a disabled child

Key points:

• Estate planning can include legal documentation outlining future support options for your child with disability after you are gone

• Many parents like to use their estate plans as a way to safeguard their children with disability in the future in case of an emergency

• Your lawyer will be able to handle all the legalities so you can figure out what your assets are and make arrangements for your child

By having your affairs in order, you can make sure your child can continue to receive the quality support they need to live a happy, healthy life after you are gone.

Your estate plan can be tailored for a loved one with disability around their financial, legal, accommodation, lifestyle or medical needs.

What is estate planning?

An estate plan is a series of legal documents that express your wishes for what you want to happen to your estate if you die. It can also cover you for when you lose the legal capacity to make decisions for yourself, including medically, legally or financially.

A properly organised estate plan will legally make sure your rights are upheld if you die or lose capacity to make decisions.

Many parents like to use their estate plans as a way to safeguard their children with disability in the future in case of an emergency.

Sometimes immediate family and primary carers provide the main source of income and support for a person with disability.

If you’re an older carer of a person with disability you may be having concerns around what would happen to them if something happens to you.

Estate planning documents include:

• Wills – A legal document that contains all of your wishes on how you want your estate, like property, money and personal assets, to be distributed after your death

• Power of Attorney (POA) or Enduring Power of Attorney (EPOA) – A POA is a legal document that gives power to another person to deal with your assets or financial affairs temporarily while you are still alive but have lost the capacity to make decisions for yourself. Whereas an EPOA is for when you permanently lose the legal capacity to make decisions and is an ongoing document until your death

• Guardianship or Administration – A Guardianship and Administration role involves a trusted person being able to make personal decisions on your behalf if you do not have mental capacity. This could be around lifestyle, accommodation, health care or access to services, or finances

• Trust funds – A trust is an arrangement that leaves a third party, known as a trustee, with assets on behalf of a beneficiary (like a child or relative). A trust can minimise your estate taxes and provide certain benefits to the beneficiaries. It is best to engage a lawyer to sort out what trust is ideal for you and your personal situation

• Advance Care Directives (ACD) – An ACD is a document that outlines your requests for future care, including your beliefs, values and goals that you want to achieve if you are no longer able to make medical decisions for yourself

Each State and Territory has its own rules and regulations around estate planning documents, so what your estate plan needs to contain will differ depending on where you live.

Make sure to engage with a lawyer in your State or Territory to understand your options and secure your estate plan.

Additionally, get your estate plan in place as soon as possible, since you cannot organise an estate plan if you have become legally unable to make decisions.

Organising your estate plan

Natalie Wade, Founder and Principal Lawyer at Equality Lawyers in Adelaide, explains that all Australians should have valid estate planning in place, even though the whole process can be quite confronting to parents.

“Often parents of children with disabilities – adults and minors – can face some complications when doing their estate planning because it is really the document that they use to put down what they want to happen when they pass away. And often parents are responsible for their children’s quality of life. In a way, for a longer time than other parents,” explains Ms Wade.

“So for some families it’s about making sure the division of assets, the inheritance, is given out to support their person with disability to have a quality of life that they want. And for other parents, it’s about making sure that the support and services continue to be in place to make sure their loved ones have and continue to have a great quality of life.

“Often I find for parents of people with disabilities, it is about maintaining a status quo to a degree. Making sure those people with disabilities that they love and care for are able to continue to have the great quality of life they had whilst their parents have been alive.”

Sitting down with a lawyer is the best way to make sure your estate plan can cover all the difficulties that can arise when trying to safeguard your child with disability.

Ms Wade says to let the lawyers figure out what is the best option for your individual circumstances and instead focus on what you have in your estate.

Some families want to leave their family home to their person with disability so they can always live in the house they know.

While other families want to make sure that their person with disability has enough money in the bank to go on holidays and enjoy all the great things in life that are often not funded through schemes like the National Disability Insurance Scheme (NDIS) and cannot be paid for on social security payments.

Ms Wade says, “I think parents need to not worry so much about the legal instrument, let the lawyers do that, and instead really focus on what is their version of success for their estate”.

“What is the legacy they want to leave to ensure their loved one with a disability has the life that they would be proud for them to have?”

Safeguarding your children once you are gone

While you can never account for all changes in the health and wellbeing of your person with disability, you can try your best to have the best providers and support frameworks in place so your person with disability is best represented once you are gone.

Special requests you can mention in your Will for a child with disability could include:

• Physical needs and assistance

• Accommodation

• Support of any kind

• Social interaction and inclusion

• Lifestyle, like hobbies and interest support

• Health care

A huge part of estate planning for disability rights lawyers is to make sure that the family has the right support in place so family members can assume certain roles within the life of a person with disability if they need it.

This could mean having a clear plan in place so everyone in the family knows what they will be doing if the main carer passes away.

For example, who will be managing the Trust if there is a Trust? Who will be checking in on the person with disability to see if they are safe in the services they are receiving?

Ms Wade says some families in Australia may not have the strongest family framework in place to help with this.

“We definitely recognise that the lived experience of families [with disability] to date has been very isolated, that families have often lost a lot of friends and close networks through caring for their person with a disability. And so it can be a really daunting prospect to face some of those questions about, ‘If not me, who?’,” explains Ms Wade.

She says that some great initiatives have been started to assist families in situations like this, like Community Living Project’s Circles of Support.

The initiative connects families with other families that are facing challenges planning safe and secure futures for their loved ones with disability, and puts in place extra infrastructure for families who are isolated so they can do estate planning safely.

Taking the first steps

It can be really hard for parents to come to terms with death and dying, especially if they are leaving behind someone that relies on them for care, advocacy, and unconditional love.

Ms Wade says, “For some, it is simply overwhelming to move through the legalities of those arrangements. I think everyone can relate to that sense of technical overwhelm when you are moving through a process that you don’t normally move through.

“But for a lot of our families that we see, it is one of the first times that they have really considered in a very out-loud way how they will ensure, and how can it possibly be ensured, that their loved one with a disability will be safe and secure without them.

“It is actually really confronting because they have spent their entire life dedicated to ensuring that that person has an incredible life and have fought a lot of systems and a lot of instructions and a lot of things to get them to this point. And I think it is a really confronting thought for parents, understandable. ‘Who will do this when I am not there?'”

However, it can be better for parents of children with disability to start preparing estate planning sooner rather than later so their child has a secure future plan in place.

If you want, you can include a child with disability in the estate planning process, even if the child with disability doesn’t have legal capacity.

Usually estate planning is quite personal, but when it includes future care and support for people with disability, it can be nice to include the person who it is helping.

It also allows the child with disability to have some say in any care or supports they want to continue, or need to continue, after their main carer has passed.

How do you intend to protect your loved one with disability after you die? Tell us in the comments below.

Related content:

Estate planning for people with disability
The complaints process for the NDIS
Your rights as a person with disability