How to Plan for the Future of Your Child with Special Needs When You’re Gone

I watch Speechless. It makes me feel like I’ve got comrades-in-arms in Hollywood somewhere. Somebody thought the story of a kid with cerebral palsy and his eccentric family was worth telling. I agree. And Minnie Driver holds my heart. On one of the more recent episodes, the siblings of JJ (the eldest with cp) bring up the future with their parents…the future when those same parents who fight for JJ’s rights in school and home and arrange for therapies and apply for financial aid are no longer there.

It’s something to think about. And not. I don’t like envisioning a future where my son is here but I am not. It seems impossible. But in fact, it’s highly probable. He’s perfectly healthy and I’m not getting any younger. So, we’ve begun planning, taking the necessary steps to bubble wrap his future for when we are no longer a part of it. If you are in this same boat, the one that will set you out to sea before your child, here are a few questions to ask yourself and a few steps to follow once you know the answers.

Questions to Ask

  1. Will my child be able to live on his/her own?

This is a hard one for us. More than likely, our son will not be able to live on his own. His physical and developmental disabilities are such that he will not be able to navigate his environment without someone there to help him. He will need help dressing, help with his wheelchair, help getting to and from places.  Obviously, nothing is written in stone, but if you have an idea of the level of independence your child might have, this will give you an insight into his living arrangements.

  1. Will my child be able to earn an income?

Earning a living wage is hard enough for the general population (says the high school English teacher). So, ask yourself if your child will be able to sustain a job that can pay the bills for life’s basic necessities. What are his or her gifts and talents and areas of excellence? Could these lead to a long-term job? There are many opportunities for adults with special needs in the job force. Research what’s in your area and find out now what kind of wages your child might earn.

  1. Do I have relatives or trusted friends capable of taking care of my child?

This is a big one. When the time comes, do you have people in your life that could and would be willing to take up the mantle of caring for your child? Go ahead and let yourself feel all you need to feel when thinking of anyone else trying to do what you do. It squeezes my heart beyond belief to think of someone trying to communicate with my son like I do (that mom-son wavelength we share). But someone’s going to need to try. And it might not be who you think. If the closest relative is not the right fit, discuss with your spouse who would be. Who would have the heart and understanding to do what you do, even if they would do it differently than you?

  1. Can I count on governmental financial aid (Social Security or Medicare)?

When you are gone, will your child receive any assistance from the government? This ties back it to question #2. If your child will, in fact, receive aid that could supplement his or her income, it’s quite possible that independence is a choice for the future. Find out how much your child qualifies for once he or she hits adulthood and factor that in to your plans.

Once you’ve thought through some of the big issues, here are some steps to take to laying down future tracks for your child.

 

Steps to Follow

  1. Make a will.

We have begun this process a dozen times. The questionnaire is daunting and will make you consider every worst-case scenario. But that’s kind of the point. You want a will that provides for your child in every circumstance no matter what. Don’t wait on this one. Even if the questions are hard and the idea seems morbid, you are creating a future for your child, which is actually the most hopeful act a parent can do.

  1. Name a trustee.

Whether you have a lot of money and can slide down a pile of gold like Scrooge McDuck or just a little, name someone to manage it. This person is in charge of supervising assets, trusts and any other financial safe-guards you have put in place. It could be a family member, a friend or a lawyer. My sister-in-law specializes in estate law and manages many special needs trusts. We are lucky to have both a professional and someone who loves our son in the family.

  1. Name a guardian.

To pick the person to walk in your footsteps is not an easy task. Before you do, think about how much time you spend in care taking. How many hours of your day are devoted to your child? And then think of someone who could manage the load. Who already has a bond with your child? Are there siblings that could or would want to help if they needed to? This might be the longest conversation and action step on your list. Because it’s the most important.

  1. Set up and begin contributing to a 529 ABLE Account or Special Needs Trust.

These two types of accounts for people will special needs are slightly different and deserve your research. The 529 ABLE account is new and might be better for those in the lower-to-middle income bracket, while special needs trusts often involve higher amounts of money. For more information read this: Meet the 529 ABLE Account

  1. Explain the plan to family.

Once you’ve had all the talk with your spouse and walked through all the steps that have led you to a solid plan (as solid as it can feel when trying to predict the future), talk to your family. Explain to those closest to you what you want for your child, what you hope his or her life can look like without you. Those in-person conversations are crucial—for you, so you can explain and talk through your choices, and for your family who will want to know their roles and ask any questions when they can. This can be a hard conversation, but it can also be uplifting. It is your call-to-action, your summoning of the troops, your Bat-signal that brings together all the ones who love your child so that they can do it better and with purpose.

 

We are not done having these conversations in our house. We may never be done. As our son continues to change and we continue to change and age, certain things may need to be amended. But just knowing that we have a plan in place, as imperfect as it is right now, is a comfort. It lets me know, in my mom-heart, that I will still be parenting from afar.

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