This chapter is excerpted from a book forthcoming from the Academy of Special Needs Planners.

Someday my brother may have a family of one: me. Nathan is a 33 year old man with autism. He is high functioning but has severe apraxia and requires round-the-clock care.

Yesterday, my father and I brought him dinner from one of his favorite fast food restaurants. He didn’t eat with us because he won’t eat hot food until it has reached room temperature. I could tell he enjoyed our company because he asked questions, told us things he wanted, and laughed at my jokes to him.

I know I will have to take care of him. He will be my responsibility when my parents die. I had a sister who died but now there is only me, and all of our extended family lives out-of-state. I would like to move to another state to be with my fiancé but we plan on a long-distance marriage because Nathan needs me here. It is a big responsibility but I accept it willingly.

I know I will not be as selfless as a caregiver as my parents have been. I will rely on his paid caregivers to clean up vomit when he is sick. I will rely on those same caregivers to ensure that he gets out of the house regularly. But the buck will stop with me.

I am human and self-involved like most people, but I don’t resent the burden. I worry about my ability to handle it. As a single mom of twins and an entrepreneur, I pray my parents live a long time so that Nathan will not need me until after the twins are grown.

I think my parents understand what they are asking of me but I’m not sure they appreciate my willingness to do it. They take it for granted that of course I will do it. Sometimes I wonder if it would be nice to hear them say they appreciate the burden I have ahead of me and my willingness to take it on.

Nathan will never appreciate what I will do for him. He simply doesn’t understand how much is required to keep him in independent living. He loves my parents, I know, but doesn’t appreciate all they do for him. How could he? He didn’t appreciate it when I protected him from mean kids as we were growing up, but then he barely noticed their taunts.

As an estate planning attorney with a focus in special needs, it was only natural that I would create my parents’ estate plan. There is a special needs trust (SNT) and a revocable living trust that splits everything 50/50 between me and Nathan’s SNT. But my parents wanted to provide more for Nathan. I advised them to buy a life insurance policy payable to the SNT. Even though I am a special needs planner, even though I understand my brother’s limitations and my gifts, it would hurt my feelings if their trust split assets in any formula other than 50/50. So the life insurance policy is a good solution for us and for many of my clients.

I know that even with his SNT, Nathan will never enjoy the standard of living that I enjoy. He lives in a small one-bedroom apartment. I live in a spacious 5-bedroom house. He is dependent on others for every errand or outing. I have the freedom to follow my impulses and desires. But he has a freedom I never will: the freedom to take care of only himself.

The SNT and my care will provide Nathan with a much higher standard of living than he would enjoy without it. Without it, he could not afford his apartment. Without it, he would have to choose between food and rent. Without it, he would not be able to enjoy any of the extras that give his life joy. For example, Nathan loves to fly; he especially loves the take-offs and landings. The SNT provides that at least once or twice a year, Nathan is to take a lengthy plane trip with multiple takeoffs.

Without my care, Nathan would be left to the supervision of overburdened social and case workers. Without my devotion, Nathan’s SNT might not provide extras that are not explicitly listed in it.

This responsibility I carry is for life. I am only four years older than Nathan. He is healthy and should live to life expectancy. How will I care for him when I am in my 80s? What will happen to him if I die before he does? We have the same answers in my parents’ plan that I recommend for my clients: a corporate trustee with an advocate to oversee the quality of his care. But, like my clients, I know that will not substitute for family. It is a fond hope that my small children will grow to take over my role if that ever becomes necessary. But Nathan is not gregarious, fun and attractive. He is serious. He makes embarrassing noises in public. He has violent temper tantrums. Will they see through all his behaviors to the loving human being underneath who needs their love and care?

There are no easy answers. One thing I know: as they grow, my children will learn about Nathan’s needs. As they grow, I will share more with them about what my parents and eventually I need to do to keep him safe and happy. As they grow, I will let them know how much I appreciate every visit to his apartment, every gift they thoughtfully choose for him, every comment they make about his care and comfort. Perhaps my appreciation – one of the most powerful forces between people – will be enough.

The plan my parents and I have created for him will ensure that Nathan will always have food, clothing and shelter. He will never be homeless or hungry. But we want so much more for him. The limitations of purely legal solutions frustrate me. Only a combination of legal solutions and creative non-legal approaches can ensure that he always has food and never has a family of none.