Remembering Terry Lynch

Terry Lynch was a wonderful man who showed how the principles of independent living apply to everyone.

Authors: Simon Duffy

The first time I met Terry was at a conference on self-determination in Detroit. He was an inspiring man who knew how to tell a good story with grace, humility and good humour. He was the first person I had met who understood how the principles of independent living and the values of inclusion apply to us all as we age. 

We formed a friendship which never faltered, even when divided by time and the Atlantic Ocean. The last time I met him was in his wonderful home town, Racine, where he took me to his favourite cafĂ©, Wilson’s Coffee, and we discussed the state of the world.

I was also lucky to be connected to Terry in his very last days in the hospice. His friends helped him to reach out via text messaging. I was busy running around Australia at the time, working on the NDIS. I had been thinking about Terry and wondering how he was and then I was sending my odd little messages and photographs from wherever I was. His last direct message was passed on as:

“Terry sez, thanks for the pics. Keep on making money from everything I taught you.” with a cheeky laughing emoji.

Knowing Terry was a joy and a privilege.

You can read many of Terry’s ideas on the Citizen Network website, please follow the links below. 

Lynn Breedlove shares some of Terry’s great achievements

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, neighbours 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:

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.

Terry’s official obituary

Terry Lynch passed away peacefully at Agrace Hospice in Fitchburg, Wisconsin on September 10. He was 84. Terry was a remarkable man: Athlete, Sports Fan, Scholar, Army Reservist, Public School Teacher, Advocate, Federal Civil Rights Official, Author, Consultant, Trainer and Cat Lover.

He grew up in Racine, Wisconsin, where he learned to play golf with his dad, worked in his dad’s shoe store, and played basketball at Washington Park High School. He studied at University of Wisconsin-Madison, earning a Bachelor’s Degree in Economics and a Master’s Degree in History and Education. He entered Basic Training in 1960 and served in the Army Reserve for 6 years. He taught high school Social Studies in Neenah, Wisconsin from 1963 to 1966.

From 1968 to 1973, Terry worked for the U.S. Dept. of Education in the Civil Rights Unit. He was part of a team which visited school districts in the South to confirm that they were complying with federal law in their education and desegregation of low-income students, most of whom were African-American. It was dangerous but important work, and Terry was proud of what he and his colleagues were able to accomplish.

From 1978 to 1985, Terry was the first Manager of the federal Developmental Disabilities Protection and Advocacy Program. In that job, he was involved in developing the policies that would shape this program in every state. He also got to know many disability rights leaders throughout the United States.

Terry returned to Wisconsin in 1985 to coordinate the in-home care his mother Leila needed to continue to live in her own home and not have to move into a nursing home. With Terry’s loving care, Leila was able to remain in her own home for the last 10 years of her life, significantly healthier, happier and more connected to her community than would otherwise have been possible. He learned many important lessons from that experience which he incorporated into the book he wrote in 2008: But I Don’t Want Eldercare. This also marked the start of the next chapter of his career, in which he provided consultation and training to agencies, local governments, and individual families across the United States and in the United Kingdom on how to maximise the quality of life for older people living at home or in the community, and help people stay out of an institution. Terry also served on many local, state-level and national Boards and committees.

Notwithstanding his professional accomplishments, Terry’s greatest gift and his most important legacy is the amazing number and variety of long-standing friendships he established with people across the country. This became especially clear in the last four years of his life when many old and dear friends, first in Racine and then Madison, came together to help him find the best medical treatment and care possible and to share time, bourbon, coffee, beer, music, sports, laughter and memories. 

In the last two weeks of his life, a steady stream of visits, calls and texts was a testament to the positive impact he had on so many people.

We, at Citizen Network, greatly valued Terry's work and friendship, and we remember him with love.

Article | 07.12.23

Community Health, health & healthcare, Inclusion, It's Our Community, social care, USA, Article

Terry Lynch


An American leader in the innovation of supports for older people

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