The biggest worry for any parent of a child with special needs is, “What will happen to my child after I’m gone?”
It’s difficult to imagine a world where you’re not with your child, but it’s very important to have a long-term plan for your autistic child. The unique needs of children with autism mean parents need to plan ahead to make sure their child continues to get the support and care they need if something happens to them.
When planning for your autistic child’s future, parents in Malaysia should consider the following:

1. Will

A Will is a legal document that specifies how you would like your property and other assets to be distributed after your death. By writing a will, you can decide exactly how your assets will be distributed to your beneficiaries, including your autistic child after you pass away.
Keep in mind that getting a grant of probate (where one dies with a Will) may take 6 months or more and a letter of administration (where one dies without a Will) may take years. Therefore, a Will cannot address your child’s immediate needs.

2. Letter of Intent

You can also add a letter of intent to your Will. This letter serves as a mini-biography and personal guide for your child with autism, detailing their daily routines, preferences, medical history, ongoing treatment, and medical needs.
It will be very helpful for your child’s appointed care partner or guardian after you are no longer around. This letter can be attached to your Will.

3. Guardianship

If a trusted individual is willing to care for your child in your absence, it is wise to appoint a guardian to your child with autism in your Will. Please ensure that you have the consent of the individual to be appointed as a guardian before you name them in your Will.
Guardianship is a legal relationship where a guardian is appointed to make important decisions for your autistic child. This includes, but is not limited to, decisions about medical care and where your child will live.
If you have specific wishes about guardianship, you must include them in your Will. If you want to set limits on the guardian’s financial authority, that also needs to be clearly stated in the Will.

4. Trusts

If financial circumstances allow, parents of children with autism may consider establishing a trust in addition to a will. This will help make sure the child is taken care of and has financial support after the parents pass away. Trusts can be set up for a child, whether they are an adult or still a minor.
You can appoint a trustee – an individual person or trust company – and specify how the trustee should manage your assets. This can include details about your child’s needs, which include but not limited to:

• Education
• Daily needs
• Medical needs
• Investments
• Entertainment
• Other specific needs

A trust company is a public company registered under the Trust Companies Act of 1949 to act as a trustee. It can manage estates, property of minors or mentally incapacitated persons, and other similar duties.
The main benefit of using a trust company is that it is permanent, doesn’t age or become unable to perform duties, and can outlast the trust creator or beneficiaries. Trust companies are also more reliable in fulfilling trust responsibilities, but they charge a fee based on a percentage of managed assets.

The downside of trust companies is that they may lack a personal relationship with the beneficiaries and can be expensive, which might be out of reach for most families. An individual trustee can sometimes provide emotional support and encouragement, which can be equally, if not more, important than just financial matters.
A solution to this issue is to separate the roles: appoint a guardian for the child’s day-to-day needs and a trust company to handle the financial aspects. The trust company would manage and invest the trust assets and provide funds to the guardian for the child’s expenses.
The trust can start not only after your death but also if you become incapacitated, go missing, or other specified events occur. The trust can last for as long as the child lives or until a specified event. You can also decide what happens to the trust funds after the child’s death, such as donating to charity or giving to surviving siblings.

In other countries

Non-profit trust companies have been set up to provide affordable trust services for persons with disabilities and provide financial security for persons with special needs after their parent or caregiver passes on.

5. Government benefits for persons with disabilities

Register your child as a Person with Disability (OKU) to provide them with additional safeguards and access to government
benefits such as housing, education, and financial aid.
For more information on the OKU registration pathway in Malaysia, please go to Government Aid and Financial Assistance Schemes for OKU.
What is best for your family depends on your specific situation and your child’s needs. It’s important to understand the benefits and limitations of each option. Planning for your child’s future can be complicated and painful, but it’s possible to ensure a fulfilling and comfortable future for your child even after you pass away.

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