Being a Care Connection Coordinator

Ideally, the Care Connection Coordinator should be a close friend or family member, but not a primary caregiver of the person with ALS. Some groups have two coordinators and are able to divide the duties. Find what works best for you and the family you are helping.

The Coordinator is responsible for managing the Care Connection team, and helps the ALS family create a list of potential team Participants and caregiving tasks to be completed by the team. The list of caregiving tasks will be unique to the person with ALS and the specific needs of their family. As ALS progresses, these needs will change, as will the list of tasks. The Coordinator will remain available to assist the family in redefining these needs and reassign Participants as needed. The Participants will be trained by the Coordinator, and will commit to following established procedures for completing tasks or finding a replacement for their accepted tasks.

How to Run a Care Connection Group

1. Meet with the ALS Family to list what they need help with, and identify people who may be willing participants. Consider and plan for any logistical issues. Click here for an outline of what to cover in the ALS Family Meeting.
2. Arrange a meeting time for prospective Participants and send out invitations.
3. Have a meeting to train and gain information from Participants. Click here for an outline of what to cover in the Participant Meeting. Click here for a Participant Training Presentation.
4. Keep track of team Participant commitments and changes.
5. Stay in touch with family needs and changes.
6. If needed, have a Second Meeting with Participants to discuss issues that have arisen. Click here for an outline of what to cover in the Second Meeting.
7. Arrange a Closing Meeting for Participants, if desired. Click here for an outline of what to cover in the Closing Meeting.

Resources for the Care Connection Coordinator

Points for Coordinators to Consider Logistics to Consider The ALS Family Meeting Finding People Who Care Letter Sample List of Activities & Examples of Tasks Important Numbers Form

Participant Meeting Participant Training Presentation Participant Information Form (paper scheduling) Telephone Tree (paper scheduling) Task Sheet (paper scheduling) Second Meeting Closing Meeting

General Resources

• Questions and Answers about ALS
• Why do Families Need Respite
• The ALS Family Meeting
• Symptoms of Caregiver Burnout
• Impact on Families
• Emotional Balance
• Grief and Loss