A letter to Parents and Professionals
From Denise Allshouse, Founder and Past President of the Board of Directors
Down Syndrome Association of Central California and mother of four children with developmental disabilities
In the past few years, Mike and I have struggled with the process to plan for the certainty of the day that we would no longer be able to care for our children with disabilities. We worried that no one would know them like we do, their likes, idiosyncrasies, habits, hobbies and the list went on and on. Simply admitting to ourselves that our time here on Earth is finite was a huge step in moving forward with planning. If something were to happen to us, we wanted our children to know that there was a plan in place, and that they would not be alone to face their particular challenges when Mom and Dad die.
As we decided on a guardian if we die before they turn 18, developed a will and began formalizing our plan, I felt a great weight lift from my shoulders. I don’t like the idea one bit that I won’t be able to care for my children for their whole lifetime but it is a reality. I could sleep better at night, knowing I had done everything within my power to insure their long term comfort even as they worked through the grief process of losing a parent.
The details of wills, special needs trusts, etc. that we put in place were just the tip of the proverbial iceberg as it related to the information I thought it was important for future caregivers to know about my guys. After a survey with our Central Valley Regional Center case managers, it became evident that they too saw a need for some type of education series where parents could not only learn about their planning options, but also have a record for personal information about the person they care for. Hence, the CAP (Creating A Plan) program was born.
We hope that you will join us and use the Footprints for the Future workbook to begin the journey to peace of mind that the Allshouse family enjoys.