Planning for a Time When You Can’t Care for Your Child

It’s scary and overwhelming to think about what will happen to your child when you’re no longer able to care for them.

It’s true that no one else takes care of your child the way you do. But your child can still get great care from loving and kind people who have their best interests at heart. It will be different, but different doesn’t have to be bad.

As you and your child get older, chances are that someone else will need to be in charge of their care. Planning for this is often gut-wrenching and tests you on many levels. But if you don’t make those plans, someone else will have to figure it out without your wisdom and expertise.

One reason that some parents build a personal network is to have people around who will support and care for their child when they are no longer able to or have passed away.

The thought of building this network can be very overwhelming. So, how do you get started? We’ve talked to other parents of children with disabilities or special health care needs. They’ve told us about some great choices they were able to make for their children. This page includes many of their ideas and tips.

Understanding Your Feelings

Working through your own feelings is an important first step towards building a plan.

“A lot of us get to the question of who will take care of our children when we die, and we just stop,” says Laura Warren of Texas Parent-to-Parent. “It’s emotionally paralyzing.”

“I hear parents use words like ‘fear,’ ‘anxiety,’ and ‘uncertainty’ when they talk about planning their child’s future,” says Rosemary Alexander of Texas Parent-to-Parent. She leads workshops on helping children transition to adult life. She says, “It’s okay to have these feelings. They might not go away, but at some point, you need to take action anyway.”

If you have had any of these feelings, you aren’t alone. Many other parents have the same concerns and fears that you do. Our page on Accepting, Grieving, and Adapting to Life has more about the feelings many parents have when thinking about their child’s future.

So, know it’s okay to be afraid. And then, begin looking for small actions and steps that will help you and your child plan ahead.

Small Actions

If you’re stuck, even a baby step is important progress. Here are some ideas for taking that first step:

Talk to a trusted friend or family member about your fears and worries.
Invite a friend or family member to spend time with you and your child. Let them see the joys and needs in your child’s everyday life.
Go to the Texas Parent to Parent Pathways to Adulthood web page-- it has tools, webinar videos, and information on in-person workshops.
Connect with other parents who are going through the same thing as you or who have already set up a network of support for their child.
Find out more about your options. You can read our pages about building a personal network, transition planning, legal tools, and accepting, grieving, and adapting to life. You can also learn more on our Legal Options for Age 18 and Beyond page.

Any of these actions will start the ball rolling. And, hopefully, each step makes the next one easier and starts you and your family on the path to building a community of people that will support and care about your child into their adulthood.

What if I Don’t Have a Plan?

What if you aren’t able to care for your child anymore, your child can’t care for themselves, and you don’t have a plan? Most of the time, someone who knows and loves your child will step in to take care of them. If your child doesn’t have a family member or friend to take over, the state of Texas must make sure your child has care.

Texas Department of Family and Protective Services (DFPS) staff might check on your child’s care. DFPS might place them in foster care, a group home, or a state-supported living center. These new caregivers might not know your child’s needs, history, or the systems that you’ve put in place for their care. But you can do things today that will help.

You are the best expert on how to care for your child right now. You can give your knowledge to a network of people to support your child, write a letter of intent, and set up wills and trusts to help make sure your child will be well cared for in the future.

Planning Tools

Sometimes, having a plan is the best way to face the future. Here are a few resources to help you and your child:

Person-centered planning (PCP) is a way to put your child at the center of creating a vision for their future so the people caring for them know what that vision is. You can read PACER Center’s web page on the PCP process. If you want to find a person or a workshop to help you and your child with PCP, you can call or email the Institute for Person-Centered Practices.
The books A Good Life and Safe and Secure by Ed Etmanski offer planning tools for adults with disabilities.
Planning Alternative Tomorrows with Hope (PATH) is a future planning tool by The Arc of Texas. Many children and young adults can use it for themselves.