Planning for future needs

If you are caring for a child with a disability, by planning ahead and putting in place certain legal and financial arrangements, you can feel secure in the knowledge that your child will be cared for after you are gone.

If you have a disability or are caring for someone with a disability, you can make health decisions now that will ensure you receive the health and medical treatment you need should you lose the ability to care for yourself.

Planning for a child’s future needs

When you are planning for the future needs of your child with a disability, it is important to think carefully about their life goals as well as their ongoing health needs before putting a plan in place.

Talking through all the issues with your family, friends and health professionals will help you get a plan that everyone is happy with. To avoid confusion or conflict in the future, make sure that everything is written down clearly and any legal documents are prepared correctly.

Putting together a future plan for your child

When putting together a future care plan, take it one step at a time. If you are careful in your approach, you will have a better chance of building a solid foundation for the person you are caring for. Things to keep in mind:

• Keep focused on the family member with a disability and involve them in the planning process as much as possible.
• Talk to other family members, friends and trusted health professionals about your plans. Their insights will help you find the best way forward.
• Work through the different steps you need to achieve the goals and include them all in your planning.
• Do your research – gather information and professional advice to help you work through the various options.
• Think about what you or your child will need as they move through the different stages of life. They might be a teenager right now, but their needs will change dramatically as they move into adulthood.
• Think about the big picture, including financial planning, practical considerations and lifestyle factors, as well as how the person with a disability will be able to fulfil their hopes and dreams.
• Build a support network, which will help take care of your family member and maintain your vision in the long term.
• Think about your financial needs and long-term goals, before getting any legal or financial advice.
• Be ready to adapt when your situation changes.
• Review your plans regularly so that any new information, family situations or technological aids can be included in your planning.

Preparing for unexpected illness or injury

Although you might be planning to care for your child for as long as you can, it is important to think about what you might do if you were suddenly unable to care for them. Prepare a plan so that your child can be cared for if you no longer can and discuss your plan with other friends and family members.

Setting up a guardianship

You can nominate a financial manager or guardian to make decisions on your child’s behalf if your child is under 18 years of age or unable to manage their own affairs due to an intellectual disability. Financial managers deal only with financial issues while a guardian can make life decisions relating to health, treatment, lifestyle and accommodation.

Setting up a medical power of attorney

In the event of your death, you may choose to nominate a close friend or family member as a substitute decision-maker for your child with a disability using an enduring power of attorney (medical).

An enduring power of attorney (medical) is a document made in consultation with a lawyer so it is legally binding. In it, a person can nominate a substitute decision-maker to make treatment decisions on their behalf.

For more information see: Making healthcare decisions for someone else and Medical powers of attorney.

Preparing your finances

Making sure your child has the financial capacity to care for themselves once you are gone is one of the most important plans you will have to make.

Preparing to talk to a legal or financial advisor

It is good to have a clear idea of what you or your child will need before you speak to a legal or financial advisor. If you are clear in your mind about what your child wants, you can ask the right questions and find a solution that works for everyone.

Things to think about before your legal or financial discussions include:

• What are your child’s hopes and dreams for the future?
• Are they able to communicate their needs?
• What kind of housing situation will they need or want?
• What do they need to stay in touch with their support network and local community?
• Does your child have any career or creative goals?
• What are their interests, including music, food, movies, etc.?
• What do they require to continue their education?
• What are their other special needs?

Making a will

Whether you need to make special financial arrangements for your child will depend on their condition, level of independence and ability to manage their own money.

If your child is living with a physical disability, they may have no problem making their own decisions and managing their own money. In this instance, writing a will enables you to leave money to them and they can manage their own care and treatment. However, if they are living with a serious intellectual disability or have serious communication issues, you may want to put special plans in place.

Some families choose to set up informal arrangements where all the money is left to a sibling who agrees to care for the child with a disability. However, these situations can lead to miscommunication and conflict. It is much better to use a will to set out exactly how you would like the funds to be allocated or use a trust to pay for ongoing health treatment.

If you leave financial assets in your will to your child after your death, such as a large lump sum payment or the family home, this may affect their ongoing disability support payments. Talk to your solicitor or financial advisor and the Department of Health to find out about the potential implications any financial changes will have on your child’s income support payments.

Setting up a trust

Using a legal entity like a trust will make sure that your child continues to receive money to pay for disability support services or care for themselves at home. You can set up a trust through your will that will take effect when you die.

A trustee will make decisions relating to the management of the money on your behalf. It is important to nominate a trustee who understands your family situation and agrees with your views on how your child is cared for.

For more information visit the Department of Social Services website.

Planning for your future health needs

Whether you have a child with a disability or have a disability yourself, thinking about how your own future health needs might impact on your family will make sure you receive the care you need without being a burden. Put plans in place ahead of time to cover you in the event you get ill or injured and are not able to make decisions relating to your care. If you have a condition that will require a high level of support in the future, talk to your family about it. If they know what to expect, they can plan their response and make sure they have the resources to help care for you.

Advance care planning

Advance care planning can help the people close to you and those caring for you know what is important to you about the level of healthcare and quality of life you would want if, for some reason, you are unable to join the discussions. Having the conversation and writing down your wishes for future care will help the person you choose as your substitute decision maker to feel more comfortable about the decisions they make on your behalf.

For more information see Advance care plans.

Thinking about getting support at home from a support worker

If you have a disability or are caring for someone with a disability and your condition worsens, or as you get older, you may experience problems with getting around, taking care of household chores or caring for someone else. If things are becoming difficult but you wish to remain at home, accessing supports such as support workers could be a good option for you.

Talk to your doctor or healthcare professional about local services and what they think would be appropriate for you.

For more information see Support to live at home.

Thinking about moving into supported accommodation

Leaving behind independent living and moving into an aged care or supported residential services facility can be a difficult transition.

There is a wide range of supported residential services available throughout Victoria. Many people with disabilities move into residential aged care facilities. However, these facilities are not ideal for young people. Talk to your doctor or Disability Information and Referral at the Victorian Department of Health about local disability support services.

For more information see Planning for future aged care needs and Housing and accommodation support.

Thinking about end of life

There are many health and lifestyle decisions that you will need to make as you get older. How long will you continue to live independently? What to do if you lose your partner? When do you move into supported accommodation? These are all questions that require careful consideration.

Talk to your family about your needs and find out what support they can provide. By being honest and open with each other, you might find a solution that works for everyone.

For more information see Making plans and decisions for the end of your life.

Where to get help

• Your GP (doctor)
• Your healthcare team
• A lawyer
• A financial advisor
• Palliative Care Advice Service