I could be wrong, but I feel many families with disabilities fail to plan because doing so seems daunting – adding one more thing to an already overfilled plate (at least that’s how it feels to me sometimes). I don’t think it’s very clear what exactly a “plan” is either, although I don’t think this issue is specific to families with disabilities.
For example – I hear the term “Estate Plan” and I immediately used to think about how expensive it would be, how I didn’t have anything worth doing one for, etc. After living through my wife’s illness and electing to take her off life support I regret not having created one; yet it still took me almost a year after her death to put one in place. Yes, estate planning can be intimidating and it may be pricey, but I would consider it an investment into the future security of your family rather than an “expense” (like cable or eating out).
So I’m going to share what I believe a plan is, at least from my perspective. A plan is nothing more than a guide to your life, it’s not meant to be set in stone and will need to be updated frequently as your priorities change and “life happens”. It shouldn’t be complicated, because we need to be able to understand and implement it. Doesn’t mean our lives aren’t complicated (wouldn’t that be amazing?!); it means whoever helps you build your plan breaks things down as simply as possible.
At it’s core a plan should be what you want to happen while you’re alive and when you are gone. It doesn’t have to be a 200 page book, it can be on a single page (although the supporting documents to execute the plan may be much longer – i.e. Will or Trust). It should help you prioritize what you want to do, and help clarify when you will do things.
Start small – if you’ve never done a plan before please don’t start by trying to map out the rest of your life. Instead, focus on what you want to get done by the end of this year – picking NO MORE than (2) things. For example, getting your estate plan done or finally doing something with those old 401(k)s. Don’t worry about what you should do first, gaining momentum is more important.
At Planning Across the Spectrum we help our clients craft their plans at their pace. For those comfortable doing it on their own, The Arc United States’ Center for Future Planning may be a good resource. Additionally every state has attorneys specializing in helping families with disabilities – two great resources are the Academy of Special Needs Planners and Special Needs Alliance.