There was a time when few children with significant developmental and/or physical disabilities reached adulthood and outlived their parents.  However, that is no longer the case.

Provisions need to be made for the adult with disabilities to ensure a good quality of life after parents are no longer able to care for that person. 

For the present, this page will focus on the Letter of Intent, a powerful tool in caring for the loved one with any significant disability, including mental illness.

After reading the explanatory article, parents or caregivers will want to return to this page and examine the outline below. 

This outline can also be downloaded as a file that can be reproduced and used as a template for examining the issues involved in making sure that adults are cared for their entire lives.

A Letter of Intent is intended to describe the life of your loved one and express your hopes and wishes as parents and caregivers, particularly in the event of your death or inability to continue in the caregiving role. The following are some key areas to think about and describe in a Letter of Intent:

I. Daily Care

1. Feeding, clothing, personal care and hygiene - What assistance is needed?
2. Environment - How do things like noise, temperature, stimulation affect the person?
3. Assistive devices - glasses, hearing aids, wheel chairs, special computer

II. Medical

1. Diagnoses - What medical testing has been done? What is known?
2. Medications - Daily medications, plus what is given for common ailments
3. Therapies and interventions - past and present

III. Behavior

1. Day-to-day issues - What approaches are consistently effective?
2. Stress and transition times - How to help the person cope?
3. Gentle Teaching - stressing a non-violent, non-aversive approach

IV. Faith and Values

1. Relationship to Christian community
2. Family Values

V. Living arrangements

1. Current residential and respite services
2. If something should happen to you tomorrow, where will your son or daughter live? 
   

VI. Education

1. Strengths and capabilities
2. Level in school of school completed? Anticipated?
3. For adults: What other learning opportunities do you envision?      
   

VII. Employment

1. Activities the person enjoys and the skill level in those activities
2. Goals, aspirations, limitations, that the person has

VIII. Socialization

1. Ability to socialize and interact with others
2. What activities make life meaningful? What activities are enjoyable?
3. Who are friends? How are friendships cultivated?
   

IX. Financial situation

1. How your estate is to be handled, where your will is kept
2. Guardianship, power of attorney, trustees
3. Insurance, government assistance, funeral arrangements for the person with special needs
   

X. Support System

1. Contact Information for key relatives, friends, supporters
2. Is there a special support group? An advocate or guardian?

What Happens After We're Gone? Estate and Life Planning for Families in which a Dependent Member Has a Disability or Mental Illness. By Duane Ruth Heffelbower. A classic booklet, originally published in the 1980s by Mennonite Central Committee Department of Developmental Disabilities. 2nd edition printed in 1996 by MMA is now out of print. Watch for a new revised and updated version in July 2011!

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