Answering That Terrifying Question: “What Will Happen to My Special Needs Child Without Me?”

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For autism parents, especially those parenting someone on the severe end of the spectrum, the future in general is a scary prospect. But there is one worry that, for many parents, tops all other worries: “What will happen to my child after I am gone?”

It’s a big question, and a tough one to answer. However, there are steps you can take during your lifetime to ensure your child is provided for once you are gone. We’ve gathered some helpful tips for you to scroll through below—make sure to read through to the very end to learn about your various options!

6. Help Your Child Seek Out a Career Path

close up shot of hands holding each other

Everyone on the spectrum is different, and everyone on the spectrum has varying degrees and capabilities for independence. But as one adult on the autism spectrum, Lydia Wayman says, “Don’t ask if your child can do something—ask how he or she can do it. Find the bridge (support, skill) that will span the gap between now and the goal. Some goals seem impossible, but the surest way to keep it out of reach is if the adults give up.”

Consider using her advice in terms of future job prospects for your child. Think about what s/he likes to do or what his/her special interests are, and how it could potentially translate into a future career. Then help your child reach that goal—even if it doesn’t seem plausible at the moment.

If that doesn’t work out and you simply can’t foresee your child holding down any sort of career or job, a great alternative is volunteer or community work. It doesn’t have the pressure of a paying job yet it can help your child feel like a valuable, contributing member of society. Not to mention volunteer help is often in very short supply, so it’s always appreciated.

5. Create a Circle of Support

Meeting Of Support Group

Therapists, doctors, some caretakers, and other professionals in your child’s life are very important. However—though they may care very deeply about your child—remember that you also need to build a circle of friends. These caring individuals can get to know you and your child and care about him/her on a purely intrinsic level. Along with minimizing the sense of isolation that often pervades life with autism, creating a circle of support gives your child a group of people who can be there for him/her. And as one autism mom put it, “We cannot depend on a governmental safety net to provide the support, love, and community our adult children need.”

4. Create an Estate Plan

An estate plan is a plan for what will happen to everything you own and your children after you die (as well as you, if you become incapacitated and unable to make decisions on your behalf). It may include things like a Living Will (what medical interventions, if any, you would like to receive if you are unable to make decisions for yourself), a Living Will and Testament (which covers allocation of inheritance and allows you to name a guardian for your child), a Healthcare Power of Attorney (who you want to have make medical decisions on your behalf if you can’t speak for yourself), a Financial Power of Attorney (similar to a Healthcare Power of Attorney, but regarding finances), a Letter of Intent (instructions to your child’s future guardian, outlining everything they need to know about your son or daughter as well as the way you want him/her to be cared for—medically, financially, and personally), and a Special Needs Trust (we’ll talk about this next).

We strongly recommend that you create an Estate Plan with the help of a special needs attorney.

3. Set Up a Special Needs Trust

Senior Couple Meeting With Financial Advisor In Office

There is something important you need to know if you foresee your son or daughter needing government assistance from programs like Medicaid or other support services: if you set aside a bank account with a certain amount of money or give your child a certain amount of cash directly, s/he will lose eligibility for many of those programs and services. Unfortunately, those are the rules for people with disabilities. However, that can obviously pose a problem, as your child may not be able to live off government programs alone.

That’s where a Special Needs Trust comes in. It’s a way to avoid disqualification from these helpful programs and services while still providing a monetary cushion for your son or daughter. Someone other than your child—a trustee—manages the trust with the ability to pay for various goods and services on behalf of the beneficiary (AKA your child). Thus, the government doesn’t see the beneficiary as actually owning the assets in the trust, and his/her eligibility for programs remains unaffected.

A Special Needs Trust can be set up at any time (again, we strongly advise you to consult a special needs attorney for this, as it can be very complicated). You can also buy life insurance through it, and anyone else, like family or friends, can put money toward it (so hey, that’d be a fantastic Christmas or birthday gift for extended family to give to your child!). Just remind relatives that the funds are not being given directly to your child—they are going toward the trust itself. That’s very important!

It is also recommended that you place any inheritance funds into the Special Needs Trust—instructions that can be specified in your Last Will and Testament.

2. Consider Appropriate Housing Options

New Homes, UK

This doesn’t have to be a “planning for when you’re gone” step; it can also be good to think about for when your child ages out of the system.

There are several different options. Your child can live…

  • In adult foster care—like foster care for kids, your son or daughter would live with a foster family, who would be reimbursed by the government.
  • In institutionalized care/a home for people with special needs
  • With you at home (this is obviously an option for when they age out of the system and you are still able to provide care)
  • In a group home with other differently-abled individuals
  • Independently on his/her own
  • On his/her own with help from a support worker

1. Cultivate Social Skills

Dr. Krysti DeZonia believes that, out of all the skills you could teach a child with autism, social skills are the most important, even more so than behavioral skills or communication skills. Why? Because it will allow them to make much-needed connections with people in the future. “Believe it or not, when your child is 40 years old, there are plenty of people (usually staff who work in the field) who will want to spend time with him even if he doesn’t talk and even if he hits them,” she says. “This is because they have found a way to connect.”

People with autism need relationships just like anyone else, and cultivating social skills can help them with this.

(Important Note: The Autism Site is not a substitute for legal advice. We recommend that you use this article only as a starting point to explore your options. For further information and resources, please seek out a legal, financial, or other relevant professional.)

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A. Stout received a Bachelor of Arts in Writing through Grand Valley State University, graduating Magna Cum Laude in 2015. In addition to being a passionate autism advocate, she is a member of various fandoms, a study abroad alumna, and an animal lover. She dreams of publishing novels and traveling all over the world someday.
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