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How to Talk to Family About Long-Term Care for Sibling With Special Needs

August 26, 2020


My 30-year old brother, Edward, has autism. He lives with my parents, and they are not in the best of health. I am 45 years old, and I have two other siblings. We all have families and are all concerned about what will happen when my brother is no longer able to live with my parents due to their failing health or when they pass away. What do we do?  How do we bring up the topic to our parents without sounding selfish?

How to Talk to Family About Long-Term Care for Sibling With Special Needs

I wish you were not in this situation, and I wish I could tell you that the position you are in is unique.

I hear from adult siblings quite often with your specific concerns and questions. My first suggestion is to be lovingly honest with your parents.

I know with 100 percent certainty that they are thinking about how to bring up the topic with you and your other siblings. They are struggling, as you are, with the best way to approach the subject of your brother’s future care.

It can be a fear-drenched topic for parents, and at this point, they most likely need your help in bringing the questions to the surface, so as a family, you can discuss the future together.

Here are some conversation starters:

  • Mom and Dad, is it okay with you if we talk about Edward’s future?
  • What are your thoughts about where Edward will live when you can’t care for him or when you pass away?
  • If Edward can discuss his own desires, have you asked Edward about his wishes in where he would like to live?

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As you open this dialogue, there are some logistical questions that need to be asked and that most families will need in place. To create a proper plan, asking questions will not be enough, and you will need the help of special needs planning professionals to ensure the proper framework is built and is logistically sound.

Some questions that need to be discussed surrounding the proper framework are listed below:

  • Depending on where Edward lives now, and where he will live in the future, how will his government benefits and services transfer if he moves from one state to another, or to a different part of the same state?
  • Does a Special Needs Trust exist for any financial resources that your parents will be providing for Edward’s future support needs?
  • If so, who is the trustee? Does that person or organization understand the distribution rules of a Special Needs Trust so that they do not inadvertently use it incorrectly and jeopardize Edward’s government benefits (which could be a monthly income, daily support, and his healthcare)?
  • Is there a secondary trustee listed?
  • Have your parents listed a guardian for Edward in their will? Does that person know their responsibilities?
  • Have your parents calculated the cost of Edward’s lifetime support needs so that the proper amount of resources is left in his Special Needs Trust? If not, you and your siblings may be financially responsible for your brother’s care.
  • Is there a professional support team in place for you and your siblings when you assume the role of support provider for your brother?

The questions above provide your family with a great starting point to develop a solid plan for your brother. As you begin this journey, there will be other details that will need to be discussed and decided upon; however, those details can be filled in as you create your overall family plan.

This article was featured in Issue 103 – Supporting Emotional Needs

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