The ALS Association, ND and SD Chapter, Jack Norton Family Respite Program

Innovative (2020):

The ALS Association of  North Dakota and South Dakota pays a partnering home care agency to provide a professional caregiver in the home of families caring for a loved one with ALS. The Jack Norton Family Respite Program was developed by a man when he was in the early stages of ALS. He wanted to make sure that his wife had supports in place as his condition worsened. The program was developed on the understanding that the knowledge and supports required as the disease progressed required ever-increasing help for caregivers. Trained, professional care providers can assist the loved one with activities of daily living such as transferring, bathing, eating, and toileting so that family caregiver feels safe to leave the care recipient at home while receiving respite. If the care recipient requires skilled care such as suctioning, trach/vent care, etc., the organization will cover a nurse in the home. The agency connects the caregiver with the respite provider and pays for up to 18 hours of respite per month.

Since the respite service was recognized in 2020, they have implemented a free training course.  People living with ALS require specialized caregiving support to address the complex, everchanging nature of the disease. Because ALS is a progressive illness, responsibilities of the caregiver will change over time. Learners can register for this free course and participate as time allows, working at their own pace to achieve greater understanding and therefore greater confidence in caring for someone living with ALS. A Certificate of Completion is available when all 11 modules have been completed. Access the training.

Replication Resources

Jack Norton Family Respite Program Procedure Manual

Website

Programs are reviewed every three years to assess their status. Following their review, recognition of  the Jack Norton Family Respite Program at The ALS Association, MN, ND and SD Chapter as Innovative was extended to January 1, 2027.