In 2015 my friend Jill asked for volunteers for her class’s therapeutic horse back riding lessons. Jill is a special education teacher and works in a very small school district in West Michigan. I was surprised to see so many kids coming through. 4-5 groups of 5-6 kids each. After a few weeks of doing this, I began to ask my friend, other faculty and some of the parents that came to watch some questions. What concerns do they have with planning for their child’s future? Where do they go to get help with their specific questions, and how easy it was to find help.
I was surprised by what I heard. The biggest concern that I heard about initially and still hear to this day, is who will take care of their child after they are gone. More surprising to me was they found very little resources available to help them with that question and all of the other questions they had. And they had a lot!
The internet can be our friend, and google is a phenomenal tool when there is a specific answer to a question. Who was the 10th president of the United States? John Tyler. Google tells me that. Google also tells me that John Tyler still has a living grandson today. More google knowledge! However, there is not a specific answer to this question: How do I plan for my child with special needs’ future? Every family situation is different, and so are their goals and resources.
Again, I have been in the financial services industry for a long time, and I’ve worked with hundreds of other advisors. I did not know anyone that specialized in this type of planning, I did not even know there was a course of study to focus on this. After these conversations was when I decided to make this my focus and develop a program to focus on this level of planning.
After getting my designations, I began having conversations with anyone that I could find that wanted to talk about this. I was surprised at how willing people were to talk about this. The reason was, nobody in my line of work every did this before. My first presentation was at Mary Free Bed in a few months, and I decided that I needed to stop talking to people. Everyone I talked to told me I needed to talk to this person and that person. I didn’t have the time. I had to build a presentation from scratch as well. There wasn’t one that I could piggyback off of.
Now, I am going to go back further and explain why I feel the way I do about this.
When I was 7 or 8 years old, I was playing little league baseball, and my dad was the coach. We had a boy on our team named Joseah. I went to school with Joseah worked with him in the special education room. Joseah was not a great baseball player, but he was happy to be on the team. The rest of the team unfortunately did not always feel the same. Joseah was big kid at 7 or 8, but lacked coordination and very seldom even put his bat on the ball. The other teams and coaches also knew this and played different defensively when he was up.
One game, that all changed. Joseah smashed the ball past the outfielders that were already playing shallow. I don’t know who was more surprised, the other team, our team or Joseah! Furthermore, Joseah was so surprised he didn’t remember what to do! Everyone was yelling; Run, Run Run! He finally took off, and missed first base by about 10 feet. He continued to run though as the outfielders were still chasing after the ball. Joseah rounded 2nd, 3rd and scored before the ball was even back in the infield. A Home Run! He ran into the dugout to hugs and high fives and then to his mother and while hugging her we could hear him crying with joy and excitement!
The other team however knew he missed first base and began talking to the umpire about this. Nevermind that is not the procedure for appealing a missed base. It was little league and even today, I doubt little league umpires would know how an appeal works. I coach little league for my kids and umpired high school baseball for a number of years. Trust me on this, they don’t know.
Anyway, during this discussion, Joseah and team began to realize this home run may not count and he would be out for missing the base. His joy turned into immediate sadness. But my dad went out and began talking to the other coach and umpire. To this day, I don’t know what was said, but I do know the home run counted and the team and Joseah erupted into more screams!
The compassion that was shown that day has stuck with me, now almost 35 years later.
Sadly, the world is not filled with compassion. Families struggle with feelings of isolation and helplessness. I believe kids today are treated differently then they were growing up. Imagine being a heavy kid with the last name of Light. It wasn’t fun. But once school ends, so do a lot of options. So does a lot of the compassion. Life isn’t easy, and for some it’s even harder.
How can I talk this passion I feel and the knowledge I have from working in the financial services industry for almost 25 years now and help these families. How can I be google for these families and answer the questions that they all have. How can I help these families plan for their child’s future.
This level of planning is different today than it was back then. Medical advances and technology, as well as levels of care have changed so much. For example, Down Syndrome used to have a life expectancy in the 30s back in the 1980s. The reason, institutionalization. This wasn’t designed for the betterment of care, but to keep a group of people isolated and supervised. Today, the life expectancy is almost 60 years old.
This is great news, but it creates different concerns for financial planning.
I am here to help families answer their questions, and I wake up every day feeling the same passion and happiness that Joseah felt 35 years ago.