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18 minus 64: Milestones for Parents

18 minus 64. The math doesn’t add up. It does not make any sense. What kind of financial planner comes up with a negative number anyway? And why take the time to write about it?

There are key times in our lives as families with a member with a developmental disability. For some, it’s the first year of school. For others, it’s the leap from middle school to high school and the enormous change that entails. There are other timeline dates that come up and include expected medical procedures, the drive to independent living, and preparing for our own aging.

For me, right now, the next major milestone comes when my daughter turns 18 and that happens 64 days from when I am writing this (but hey, who is counting?). 18 years minus 64 days. A lot needs to happen in those 64 days.

Most of my articles for Exceptional Parent offer financial planning tips and techniques on how to get important planning steps in place even as we fight our fears, behaviors, and worries about doing so. This one is a little different – and if you’ve been through the planning steps and transitions that come when your family member turns 18 and have some advice to share, please send comments to the magazine or to me.

One reason I am so passionate about people taking the time to get their estate and financial plans in place is that it frees up emotional and mental space to enjoy life and focus on any new challenges or needs that arise. It’s hard to put energy into something new when your mind and heart are tied up with stress and worry.

Yesterday, parents of a child with developmental disabilities were in my office. We started working with them two years ago and they were committed to their planning. They met with an attorney and updated their estate plan to include special-needs provisions. They dedicated themselves to saving and their accounts now have more money in them than they thought they’d be able to save, ever, and they only just started. Huge wins. They were more relaxed about their financial life and have been able to embrace the rest of their lives – parenting, career, moving to a new home – as a result.

It’s exciting to watch a family make progress and to know that by doing so they can create the life they want to live today and prepare for the future.

My work begins this month on my next set of planning steps. Math and money vex my daughter with Down syndrome. She does not know the value difference of a dollar or twenty or hundred dollar bill. She lacks the ability to understand medical terms and to make decisions about her health in a consistent way. So, for now, she will need her parents as guardians. Maybe that will change as she matures and I hope it does.

The next steps for me are to apply for guardianship with the court here in Colorado, apply for SSI so she has her income benefits, and by doing so preserve her Medicaid for health insurance and community supports.

These are major moments in our family’s life and important steps to take so that my daughter can live a fulfilling life. SSI provides her needed income until such a time when the job market embraces her unique talents. There has to be a role in companies for someone who loves to sing and dance and greets people with compassion and joy. She won’t have employer-provided health insurance and Medicaid will fill that role.

Ideally, she lives independently at some point even as I support her as I can. Our family will benefit from local nonprofits that can help her learn life skills, check in on her, and be involved when I cannot or am no longer capable.

We look forward to her turning 18 and graduating from high school (go class of 2021!). It’s a time filled with new challenges and fears and with new opportunities for growth as she heads into her next phase of life.

18 minus 64. I am not sure what this will add up to. I do know that, unlike the basic arithmetic, it will be positive for our family.