Remembering Terry Lynch, a Wisconsin Self-Direction Pioneer         

                                                                           -Lynn Breedlove

Terry Lynch moved back to Wisconsin in the 1980s to help his elderly mom Leila stay in her own home. Long before the IRIS program, he worked with his mom’s county case manager in the Community Options Program to cobble together a homemade version of self-direction. He called it “The Campaign” to keep Leila out of the nursing home, in spite of her increasing mental and physical frailty. As her only child, he recruited friends, neighbors and home care workers to join The Campaign.

It worked. Leila’s workers became her family. Leila’s health declined and her dementia increased, but she never set foot in the nursing home. She had some medical crises, but Terry and Leila’s team consistently overcame them. At her memorial service, her home care workers sat in the family pew.

Terry took the lessons he learned from that experience and wrote an excellent book, But I Don’t Want Eldercare. He also supported families, IRIS consultants, and self-advocates to help make self-direction work in the lives of many older people and people with disabilities in Wisconsin and other states and countries. He was one of the founding Board members of In Control Wisconsin.

30 years later, Terry needed long-term care himself. Just like his mom, he wanted to keep living at home as long as possible (in the same house he had shared with Leila). He enrolled in IRIS and stayed at home until his long-term care needs outstripped the supports the system was able to provide in the midst of the workforce crisis. He spent 1.5 years in three different nursing homes until he passed away on September 10.

The Terry and Leila Story contains several important lessons, which reflect many of the core principles in Terry’s book. Here are some examples:

• “Tap into the Power of Community” (say Yes to friends and neighbors who offer to help – Terry and Leila did that a lot)
• “Be open to finding Allies among paid providers of services” (Terry and Leila developed close friendships with their paid caregivers - that positively impacted service quality and kept staff turnover low)
• “Age is Not a Diagnosis” (when the doctor told Terry that his mom was losing her balance “because she’s old”, he insisted on getting more tests to find the true cause, which turned out to be her medications)
• “Rehab is not only for the Young” (Terry advocated for aggressive physical therapy for his mom and later for himself, even as his physical abilities declined)
• “Preoccupation with Safety can be Risky” (Terry was willing to take some risks to stay in his own home – he considered that to be part of self-direction; if safety had been the highest priority, he would have had to move into a nursing home much earlier)

Terry and Leila live on, through the example of their tenacious determination to keep living at home as long as possible; due to Terry’s deep belief in the power of self-direction; and with the legacy of the practical and timeless wisdom contained in Terry’s book.