Newsletter – August, 2001

**Companion Resources Newsletter**

edited by Paul D. Leichty

Volume 3, No. 8 August 2001

“Planning” is one of the new links I’ve added recently to the left-hand column on the Companion Resources web site (https://companionresources.org). Last month I mentioned some topics I was assisting parents and family members to think about at a retreat. In this issue, I would like to present an overview of “Life Planning” for persons with special needs and an important tool to consider.

Life planning can mean many things depending on the situation in which the family finds themselves. Typically, for families who raise a child with developmental disabilities, there are a number of big issues, particularly as that child approaches adulthood. We’ll look at specifics in a moment.

Here, then are the major issues in life planning:

* Residential services

Where will the person live when it is no longer appropriate or possible to live with parents? What kind of supports will be needed (that up to now have been provided by parents) so the person can live a peaceful, meaningful life?

* Educational / Life Skills

How does the school system prepare children with special needs to become adults that are equipped to do meaningful work to the greatest extent possible? How do parents and teachers maximize the school experience so that it is truly helpful for the child with special needs to cope with our modern capitalistic economy?

Work / Daily Activities

How will my adult child move from the school to work or daily activities that are wholesome and meaningful? What kind of supports and encouragement will there be? How will he or she be encouraged to grow and live fully?

* Financial considerations

We should neither avoid this topic nor become obsessed with it. But how long should an adult child be dependent on parents for daily caregiving? What help should we seek and expect from the government? How will my child be prepared, protected, and provided for when we as parents are gone?

When we think about life planning, we usually think first of financial planning. Indeed, providing the money is an important ingredient in making any plan work. To do that, a well-prepared will by a lawyer who knows your situation is invaluable. Likely, many families will get into the issues of special needs trusts as well.

But the big question is how this money is going to be used. Because of the legal complication involved in government benefits for persons with special needs, a will cannot say too much. However, a “Letter of Intent” can say what a will or trust cannot.

A Letter of Intent is intended to accompany a will and any trust tools that are used to provide for a child (whether minor or adult child) with special needs. The Letter of Intent describes the life of the loved one, and expresses the hopes and wishes as parents and caregivers, particularly in the event of death or inability to continue in the caregiving role.

The format for doing the Letter of Intent can be as simple or as fancy as you want. It can be hand-written, typed, or kept in an electronic file. It can be put in a notebook which can be updated as situations change.

Each family will need to decide on a procedure for doing this. It is not something that is easily or quickly done. It might start with a family meeting involving all family members who want to be involved. Families are encouraged to involve the person with special needs to the extent that they are able to participate.

After gathering data and sample outlines from several sites, I have proposed my own sample outline that can be helpful in this planning process. This outline is found at https://companionresources.org/planning/intent.html. I encourage anyone concerned about the future of a loved one to take a look at this outline. [Note of 12 January 2007: This link is no longer good; hopefully, I can re-establish this link in the near future. Thanks for your patience.]

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Life planning is a serious issue which needs to be worked on at each stage of life. Life planning cannot, of course, insure the future, but it can help us to be more prepared and flexible to respond in time of crisis for the benefit of our loved ones with the greatest needs.

There is no magic formula for making it happen. I’ll admit that I procrastinate as much as the next person. But a good family life planning process can bring a family together as they express their love to their most vulnerable members.

I wish you many blessings as you provide for those with special needs in your midst!

Paul D. Leichty

The Goldenrod Community

Middlebury, Indiana

PDLeichty@cresources.org

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