Workspace #1

April 27, 2022 @ Verne Cox Multipurpose Center, Pasadena, Texas

Overview

The meeting was opened by Heather sharing the inspirations for the Caregivers Workspace.

• As a special need parent, I have learned and learned and learned things related to my children. But it is often hard to find time to implement what has been learned.
  • Which is why this is a workspace… I am setting apart a time and place each month for 1 year for you and I to focus on things we need to get done.
• I know it is hard to focus on tomorrow’s needs when today is very full. But it is very important to the future of your Loved One. So my role in this workspace will be to simplify creating a Life Plan for your Special Needs Loved One and a Death Plan for Yourself.
• I described 3 experiences I have observed:
  1. The death of a mom who spent the months before her death preparing documents to insure her husband and her son’s paid caregivers knew all about him, and his services. Her son’s life was able to continue with his needs attended to without added stress while he grieved his mom’s death.
  2. The death of a mom who didn’t communicate if she had made preparations for her son after she died. Family came from far away and had to juggle the son’s care and digging through her home to try to locate and access information about resource for him. They had to spend their own funds to stay in the area for 2 months, and still were only able to settle him in a traditional setting.
  3. In a store, I saw cards with artwork being sold by an organization helping individuals who are homeless. And the artist pictured had Down syndrome.
• This spectrum of how a special needs individual is effected by the preparation made by their family made a strong impact on me,

Then we proceeded with introductions and each person shared what they came here to accomplish. Here are some of the answers:

• I need to figure out the tasks that need to be completed as my child transitions into adulthood.
• I need information about accessing Medicaid waivers.
• I want to complete a Life Plan about my son’s care and Death Plan so I leave my resources in order.
• I want to do a will and a trust.
• I need to document all that I do to care for my son so someone else could take over if needed.

Tools

We reviewed a couple tools that can be used determine what tasks spend Workspace time on.

Tools for Organizing Your Own Task List

Make a list of individual concerns, figure out what tasks go into addressing that concern, and prioritize what is more important.

Tools for Life Plans and Legacy Plans

Activities

1. We started by reviewing the Emergency Plan Section in the Life Plan for Loved Ones document.

• Power of Attorney included is from the DRTX “The Right to Make Choices: Supported Decision-Making Comprehensive Toolkit“

2. We had individual time to look over the Tools, writing down things that are on our mind, and marking off tasks we have already done on the Life Plan Task List and the Legacy Plan Task List.