CPSH is interested in your experiences about planning where your child with intellectual/developmental disabilities (IDD) will live when you are no longer able to care for him or her.  We need your stories about your concerns, even fears for the future of your child.  This could be due to any number of issues including the limited resources in Texas or your particular circumstance; that all the planning in the world may not be enough.

As parents, some of you may feel anxious, scared, numb or just plain sad when you think of your child with IDD having to live on their own or in a situation you have provided him or her, when you are no longer able to support and keep that child safe.   The reasons you can no longer care for your child could be your failing health, lack of resources, or imminent death. 

CPSH has seen that actual examples of parents trying to make realistic plans for their children are most effective to people interested in why our organization exists and what we expect to accomplish. CPSH will feature your story on the web, in publications, in letters to politicians that hold the purse strings, or anywhere that real stories of struggling parents can make a difference in helping our children have housing options and live their best lives.  Your stories will also help younger families understand the challenges of planning for their child’s future.

Specifically, we would like you to focus on

Where will your child live when you are not able to care for him or her?

We are looking for challenges you are experiencing, such as

·      Future guardians/foster parents/care takers are not in a location familiar to your child, and   this concerns you because….

·      Plans you had made to have your child live with someone specific, have changed, because…

·      You are making no plans, because…

·      You have made specific plans, and feel they are inadequate because….

·      What problems have or will come up no matter how much planning you do?

If you would share your story, we will keep your identity confidential, if you’d like.

Optional:  Here is a guide to create your story

·      Describe you child

·      Describe the situation you are planning for

·      Describe the initial plans you made

·      Describe the changes to the initial plans and why they changed (if applicable)

·      Describe your satisfaction or dissatisfaction of these plans.

Please send your story to me at rleogrande@yahoo.com  Be sure to include if you want your name omitted from the story.

This is a story only you can tell. It does matter, and it will help.