Planning For the Future

by Anat Sichel

When I became editor of "New Developments" for the first time in 1996, my son was only five years old. Then my concerns were about language and toileting, as well as the finances it takes to raise a child with special needs. Now, again the DDR newsletter editor, after a seven year hiatus, my financial priorities linger, while different concerns for my family and my son with autism, have emerged. I know that I am not alone in pondering subjects we would sometimes prefer to ignore.

What happens as our children, and we ourselves, grow older? Where will our children live and who will they interact with if there is no family around? Organizations are developing all over the world with the specific intent of helping families prepare for the future by addressing legal, financial, family and social issues. All of these elements go into what may be described as a "good life."

What is a "Good Life? Each person’s view of a good life varies, but certainly includes home, work, play, security, safety and love.

As a parent, I found all of these questions daunting and overwhelming. I was grateful to learn that someone outside the immediate family can help.

Enter: Planned Lifetime Advocacy Network

Planned Lifetime Advocacy Network (PLAN) is a Vancouver-based non-profit organization that provides assistance with all of the above areas. They also provide guidance about will and estate planning, home ownership, adult guardianship, as well as legal and financial issues. In short, they are a one-stop-shop for families who need direction and reassurance about the future.

PLAN’s most distinctive service is the provision of a facilitator. The facilitator is a person who works with each family to develop a network of volunteers -- a circle of friends. Because it can be difficult to request help for your loved one, the asking, recruitment and maintenance of this network is the responsibility of the facilitator. Each member brings his or her expertise to the group; your child can rely upon each and every one after you are gone, to maintain your version of "the good life." By bringing together a circle of friends, the facilitator makes it possible for people who might otherwise be trapped in institutions – or in their own bodies – to lead enriched lives. The PLAN facilitator provides and continuously re-evaluates this service throughout your child’s life.

David’s Story

David is a 45 year old man with autism. He is verbal, but is limited mentally and physically. He is learning to cook from a woman in his seven-member network. David attends stamp club meetings regularly, and has worked in the local library for 11 years. For the past three years he has shared an apartment with another young man. He visits his parents, both senior citizens, on weekends. They have set up a trust fund for him, which takes effect when they die. His two brothers, neither of whom live nearby, will be trustees along with an independent financial planner.

David’s parents, like other parents of children in PLAN, know that it usually takes more than one person to watch over him – not hovering exactly, but making sure he can function with as much or as little help as he requires. It doesn’t take a village, but it does take a circle of friends.

Possibilities for Those with Special Needs

David is a good example of a productive future for our loved ones when we prepare ahead. Life is good. Today, groups like PLAN are cropping up in the United States and all over the world. At the most recent leadership training, held in March in British Columbia, I met representatives from Kentucky, New Hampshire, North Carolina, and Washington, a variety of provinces in Canada and two from Holland. All gathered to learn about the exciting possibilities and gain the tools needed to start their own local organizations. I am in the process of starting the first one here in New Mexico. Maybe you would like to get one going in your state. For more information about PLAN, go to its website.

Anat Sichel, is Editor of "New Developments" and mother of Lance, age 13. She lives in Tijeras, New Mexico. You can reach her by email

[Initially published in New Developments: Volume 9, Number 3 - Spring, 2004]

All material in this web site is given for information purposes only and is not to be substituted for advice from your health care provider.


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