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Planning for The Future for a Child with Special Needs

Jim McKinley

Having a child with special needs comes with unique concerns and extraordinary worries for the future. Who can you trust to care for your child if you become ill or pass away? In addition to who, you’ll likely be worrying about

what the cost of that care will be and how will it be paid for. To ensure your child is protected and cared for, you’ll need to be able to answer important questions, which will create instructions to pass on to family members, caregivers, trustees and anyone else who will be responsible for some aspect of your child’s care.

Asking Who: Who will care for your child?

Create a last will and testament that names a list of caregivers and guardians for your child. Be sure to talk with the people you choose ahead of time so that this commitment won’t come as a surprise. You’ll want to be very specific about beneficiaries so there’s no dispute about who cares for your child and the assets they are given to provide that care.

Asking What: What kind of life do you want them to have?

Every special needs child is different, and setting them up for the most successful life possible is the goal of any parent. Make sure to write out a detailed life care plan, which includes each and every feature of your child’s day-to-day care. You can explain special dietary needs, anxiety triggers and activities to do or to avoid. It’s also important that it includes additional services your child receives, like after-school programs or a service dog.

Asking When: When do you need to have this all set up?

Talking to a lawyer is the first step in getting your plan in place. The important thing to recognize is that planning for your special needs child’s future isn’t a one-time event. You’ll need to update the life plan as he or she gets older, adjust your will if you have other children, and change designated beneficiaries if people pass away or financial situations change.

Asking Where: Where will they live?

Your special needs child will have options for living arrangements. You may want them to stay with a family member, but if no one is capable of providing the right kind of care, then you should consider arranging for residential needs. You’ll need to secure a home that is accessible for any equipment your child uses, like a wheelchair, and any physical therapy they must do on a regular basis.

Asking How: How will it all be paid for?

This is when you should consult a lawyer. There are a few ways you can safeguard your child’s finances for a happy, cared-for life after you’re gone:

  • Establishing a special needs trust

  • Buying a life insurance policy and a burial insurance policy

A special needs trust provides funds for caregivers, education, travel and medical expenses that are not covered by Medicaid or other government programs. There are laws and government agency rules that apply to special needs trusts, as well as some costs associated with establishing and managing one. Life insurance is another important way to financially secure the future of your child with special needs. This can cover the cost of daily life that you and your partner would normally pay for your child. On top of that, it’s wise to look into a burial insurance policy, which is designed specifically to cover the cost of your funeral and other final expenses. While it’s an added investment, having one ensures that all of the funds from your general life insurance policy will go toward the cost of care for your child.

You should double check with your lawyer, but in many cases, you shouldn’t have your life insurance payout made directly payable to your child. Regardless of their age, they may not be able to manage it properly, and could be at risk of someone taking the money from them. In addition, Medicaid, Social Security and other types of government funds have income limits for eligibility. That means if you leave your money directly to your child, they may not be able to qualify for those benefits. In many cases, you can name your special needs trust as the beneficiary.

Planning for the future is always a little stressful, but if you start early, your mind will be at ease, and your focus can be on giving your child the care he or she needs now and always.


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