Planning For Your Child with Special Needs’ Future, Without You

My mother died of cancer almost 23 years ago. It was a terrible experience for us as a family. Her departure was just another stage of suffering after many years of agony we endured together. By relating this life experience as a child to my current experience as a mother, I can only admire her strength and clarity when it came to accepting her fate while focusing on building my future as her daughter.

My mom believed in me, and a very vivid memory I have of her took place on a random morning in which I opened my eyes to find her sitting by my side. She said, “I know you’ll be alright. You are prepared for the future, but your brother is still a little boy. I trust you to take good care of him.” I didn’t say a word in response. I just accepted the fact that my mom had made peace with her destiny and I knew I had to as well.

Among the many things I inherited from her, I was given a higher than average probability of having cancer. For that and according to the American Cancer Society, I’m supposed to have yearly mammograms. I can’t deny how scary this is. This year, at the age of 39, my mammogram was inconclusive, and I had to go through a breast ultrasound and live through the agony of the waiting for the test results.

My test results came back clear, but during the process of waiting, I reflected a lot about my children’s future. I realized that in my case, I couldn’t rely on my children’s abilities to survive on their own due to their disability; therefore, it is time to take action out of love for them and concern for their futures.

Which are the most logical steps to take when planning for your child with special needs’ future, without you? In case you are not there for them?

  1. Learn more about Pooled Trust accounts. These are dedicated accounts protected under the law for people with disabilities. Once you open an account for your child, not even you can remove the money unless there is a proven emergency. Obviously, if you are a parent like me, who makes an average income, you may not have large amounts of money to deposit, but the earlier you start, the more you can save.
  1. Buy a life insurance policy. That money can protect your child’s future if you are a victim of a car accident or a terminal illness. Better yet, it can be used in combination with the pooled trust account, which can protect and administer the money to assure your children’s needs are covered. There is a monthly maintenance charge for this type of account but it’s worth the investment.
  1. Designate a legal guardian or medical decision maker in the case of emergency. Yes, it’s time to talk to the ones you love and trust about this. Hopefully, your children or child has another responsible parent who will take over, if you are not there anymore. If that’s not the case, think about the next person you trust to take care of your children, and in this manner, make a small list of individuals you think may be willing to take on this commitment, if necessary.
  1. Work on prevention. Not only attending medical appointments yearly or as needed, but think of wellness as the result of a balanced life. Feed yourself and the ones you love with good stuff, physically and spiritually.

Think about it, because even if we do everything right, we are sometimes victims of our fate and for that, we need to have a plan in place for our loved ones, especially those with special needs or a disability.

It’s a gift we hope they never need, but one that simply must be there should they find themselves without you.

About the Author

Named as Best Latino Advocate 2015 Through the Use of Technology and Social Media, Eliana creates awareness about the possibilities of people with disabilities through her social media channels and bilingual posts. This past October, her son, Emir, was a guest of honor to the White House, along with other 10 geniuses in technology. For the first time a person with intellectual disabilities was included to represent his community. Her daughter Ayelen is growing up while representing diversity in her role as a model for several brands in the U.S.

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