By: Patric Barbieri
(This article was originally published in 2016, there will be three parts to this post over the next month)
It was always understood by our family that I would be my sister’s guardian when something happened to my parents. It was always in the back of my mind—a mere conceptual thought—but we never had a formal discussion about it. “Yes, of course, I will be the guardian,” I would say to my parents, but I figured this would be much further into the future. What we didn’t expect was that both my parents would pass away within five months of each other this past year. My sister has Down syndrome and turned 40 years old over the summer. Our lives were about to change significantly.
If you want to learn about the reality of special needs planning, this article is for you. There will be no fluff—just the facts, the brutally honest truth of what I learned, and the mistakes our family made. Let me start by saying that developing a “special needs trust” is not the planning I am speaking of. Interestingly, this is the first thing I was curious about because I heard of the importance of developing one. Well, forget that. A financial trust is but a small item in a long list of planning considerations and decisions that need to be made. It is necessary, but you should certainly not think that it is a priority in any way, shape, or form. The real planning is starting the discussion with family members who will be taking care of your son or daughter in the future, what role the siblings will play, what they will need to know, and what decisions they will need to make.
This is a personal story that illustrates the reality of special needs planning. When will you need to confront these facts? It could be in 10, 20, or 40 years, but eventually, the time will come, and someone will need to be responsible for the care of your son or daughter when you cannot do it any longer. Siblings play the most significant part in this planning, and it is essential that they have the knowledge, information, and understanding regarding what this will entail. To parents and siblings, I implore you to start planning now. We made the mistake as a family of not doing this. Siblings, your lives will change when you take over the responsibilities. My hope is that by the time you finish reading this article, your family will be motivated to start a discussion and start planning as if it were a 50-year plan. Believe me, it will be a lot easier in the future if you do this now.
In 1978, I was 14 years old and was attending a sibling support group at the Shriver Center in Waltham. It was the first sibling group facilitated by the Shriver Center. If you would like to read the Shriver Spotlight Magazine “Siblings” article they did with me, click here: https://patricbarbieri.files.wordpress.com/2012/10/shriver-spotlight.pdf. My mother wanted my brother, sister, and me to understand what we were going to be experiencing with a sister who has special needs. She wanted us to connect with other peers who had siblings with special needs. This was a good start.
About nine months ago, and at 52 years old, I started the process of acquiring guardianship over my sister, who just turned 40. I was very involved in her life, but I never realized the amount of work my parents were doing to take care of her! It was simply amazing. As parents and guardians, you know this all too well, and you are still trying to figure it out. But who is going to take all this on after you? You will not be here forever, and you never know what can happen, so planning needs to happen sooner rather than later. Think about all the hours, days, and years you have been working on the care of your child with special needs. Not many people can understand how much work this involves unless they have been through it.
At my mother’s funeral services, William, my sister’s housemate, approached me to offer his condolences. I thanked William for coming and he responded, “Of course, we are a family, and we support one another!” When you hear something like that, you know my sister is in the right place. Her group home is her sanctuary, her support, and the place where she wanted to be during this difficult time. We asked her, “Why don’t you come live with us for a while?” and she said, “Absolutely not. This is my home; this is where I want to be.” We are fortunate in that we have family members who all help out with the care of my sister. She has been living in a group home for the past seven years, and although this is not an article about housing, I don’t know how we would have survived if my sister had been living with my parents at the time they passed away.
My sister has a part-time job at T.J. Maxx, attends her community day support center on the days that she does not work, and has a wonderful social life. We have an ideal situation. You would think everything is taken care of, so what do we have to worry about?
My parents didn’t want to burden us with everything that was involved in the care of my sister, and perhaps, for them, it was just something they did for so many years that it became routine and they were planning on sharing it at some point. As a family, the mistake we made was not starting the conversation sooner. The planning and sharing of the details of my sister’s life should have been a gradual process, and when the time came, we would have had all the knowledge of what was going on in her life. But we just don’t think about this because we always believe we have plenty of time in which to do it.