Life can change in a moment. One day my family became a family with a special needs person. I had been out of the country (and at that time relatively out of touch without cell phone connections) and arrived home to hear increasingly troubled voice mails. “Call your brother.” “Call your brother the second you get home.” “Call your brother at the hospital!”
My nephew, who was 12 years old at the time, had been diagnosed with bone cancer. (Let me give you the good news first.) My nephew is now happy and healthy and living a full and rewarding life. But he faced 18 months of surgeries and chemotherapy. He faces lingering, but thankfully, very manageable disabilities. My brother and sister-in-law faced the challenges of medical insurance that was, temporarily, inadequate; the emotional upheaval of dealing with the situation and the desire to make sure all their kids remained emotionally and financially secure.
We are blessed with a close family–then and now. I’ve never been more proud of my entire extended family: parents, grandparents, sisters, brothers, cousins, nieces, nephews and close friends. All answered the call and the family emerged from the immediate crisis whole. And my nephew was a champion throughout.
From that moment on I have always been sensitive to the demands placed on families with a special needs person. I felt the fear, and it was fear, that my brother felt when he realized the medical insurance they had wasn’t adequate to provide my nephew with the care he needed. I felt the relief and joy when we were able to acquire top line health insurance for my brother’s family–including coverage for my nephew. With that taken care of, the family was able concentrate on the medical crisis and not let immediate financial issues control the situation.
We made sure that my brother, who was the primary earner in the family, had adequate life insurance coverage. If something happened to him we needed to be certain that the income he brought in to support the family was still coming in, without interruption. We also made sure there would be sufficient funds to help pay for ongoing care in the event my nephew needed that type of financial support.
We ensured that my brother and sister-in-law had put in place proper estate documents, spelling out how to care for all the children and how the money that might be left to the children would be split. When these documents were initially drafted, a testamentary special needs trust was established that would have held the funds for my nephew. The trust would have protected his ability to qualify for government funds and programs while making funds available to assure the quality of his life was secure. When, over time, it became clear that he would not need that kind of ongoing support, the documents were redrafted.
In the moments after a special needs situation occurs, the emotions can overtake you. It may feel impossible for you to address the triad of issues–emotional, financial and legal–that you now have to deal with. Try these tips to help you navigate the situation:
- Don’t try to do it alone.
- Reach out to your reliable family and friends.
- Get recommendations to put a team of trusted advisers together.
- Be sure your advisers have worked with special needs situations.
- Put the Internet to work for you–but do be careful to always test the information you are getting online. Make sure they are recent posts and reliable sites–preferably sites that have been referred to you.
I know it may be difficult at times, but be proactive, and if you can’t because of caregiving demands, try to have your family and friends help you out in those moments. And finally, as a caregiver, be sure that you are taking care of your own health and emotions. Your special needs person relies on you, your family relies on you–you owe it to them to take care of yourself.
The use of trusts involves complex tax rules and regulations. Consider enlisting the counsel of an estate planning professional and qualified professional legal and tax advisors prior to implementing such sophisticated strategies.