COFAR blog

Colleen M. Lutkevich, who advocated for 35 years on behalf of COFAR and served as its unpaid executive director for more than two decades, officially retired this month from the organization.

When she was 25 years old and pregnant with her first child in 1985, she first went to work part-time as a secretary for COFAR, which had only been established a couple of years earlier.

“People organized COFAR for the sad reason of having a loved one with an intellectual disability,” Colleen said in a farewell message to the Board this past week. “But they channeled their sadness into advocacy and made a real difference in people’s lives, and in the DDS system.

“I feel good about this decision (to retire) and I know that no one is irreplaceable!” Colleen’s message continued. “I remain willing to offer help and advice as needed and I wish all of you the very best in continuing  your work with COFAR.” She is continuing to serve as president of the Wrentham Family Association, an affiliated organization to COFAR.

She also is continuing to work as a high school guidance counselor in the Easton public school system, and raised three children with her husband, Paul.

Colleen Lutkevich (2nd from right) with members of her family at a Wrentham Developmental Center holiday party in 2012. With her are (from left) her father, John Sullivan; mother, Gladys Sullivan; and sisters, Laura Bradley, Jean Sullivan, and Joyce Wise.

Colleen followed in the footsteps of her father, John Sullivan, and her mother, Gladys, in advocating for better care for her sister, Jean, who has an intellectual disability. Jean has lived at the Wrentham Developmental Center for more than 60 years. 

John Sullivan, who was one of the founders of COFAR, was among the plaintiffs in Ricci v. Okin, the landmark federal lawsuit in the 1970s that led to major upgrades in care in the state facilities. John died in 2017 and Gladys died in 2016.

Johanna Smith, COFAR vice president, responded to Colleen, saying, “I am in awe of your wealth of knowledge and experience in this area, and your kind and patient wisdom in helping people deal with so many difficult and emotional situations.  You say that no one is irreplaceable, but you have been a wonderful and unique resource to so many people and I’m sure they would agree that your help was irreplaceable in their lives.” 

Anne Paulsen, a Board member and former member of the state Legislature from Belmont, wrote, “In the short time I have been associated with COFAR, I have learned that you are the linchpin of the organization.”

Joe Corrigan, a Board member, said, “COFAR is losing a lioness.” He said his sister Pat and late brother Jack “benefitted from Colleen’s devotion.” 

Wrote Board member Deb Cooksey, “You have dedicated countless years of your life to this cause, and I’m so grateful for your leadership. So many families with loved ones with ID are better off because of you.” 

Advocacy efforts began in the Ricci era

In recounting her start in working on behalf of the developmentally disabled, Colleen listed names of people, in addition to her parents, who were instrumental in the early days of COFAR and the Ricci case. She mentioned Phil Corrigan (Joe Corrigan’s father), Louise Johnson, Charlie Hart, Mary McTernan, George Mavridis, Richard Krant, Ed Orzechowski, Frank Every, and Ed Stefaniak, among others. 

It was those people, she said, who taught her how to navigate what is now the DDS system, and how to make the case for better care for its clients.

She said her father, in particular, served as an inspiration to her in her advocacy. “My dad worked and fought his whole life to make the system work for the least fortunate among us,” she said. “His advice was always, ‘never be afraid.’”

In the early 1980s, she said, everyone belonged to the Arc of Massachusetts, which her father had also helped to found.

But at the height of the Ricci litigation, a split developed in the Arc organization between those who wanted to close all congregate care facilities such as the former Fernald Center, and those, like Sullivan, Corrigan, and others, who believed the facilities should remain as an option for those needing the intensive care and services they provided.

In 1983, the pro-facility contingent broke away from the Arc and formed COFAR. Colleen later took the secretary job, but the organization was experiencing financial problems and was unable to pay even her nominal salary of about $7,500 a year.  So she continued to work without pay in the same position until 1995.

Although she ostensibly quit COFAR in 1995, Colleen came back to fill the then vacant executive director position in 1998. Once again, she accepted the position without pay, and continued to work as a volunteer executive director ever since.

Worked to stop involuntary placements

Colleen recalled that among the highlights of her work for COFAR were successful advocacy drives to prevent involuntary placements of persons with intellectual disabilities (ID) in mental health facilities and nursing homes in the late 1980s and early 1990s.

In the first case, she said, COFAR worked with legislators to pass a guardianship transfer statute, which stopped transfers of individuals with ID to mental health facilities against their families‘ will. The law required that an individual’s primary diagnosis be an intellectual disability if the individual was “dual-diagnosed” with both ID and a mental illness.

In the second case, Colleen worked with the then Governor’s Commission on Mental Retardation to prevent inappropriate placements of persons with ID in nursing homes. “We found that residents from facilities were being sent to nursing homes as community placements,” Colleen said. With the help of the Governor’s Commission, COFAR and other advocates “blew it wide open,” she said.

A subsequent lawsuit, which became known as Rolland v. Patrick, led to the cessation of the placements in nursing homes, and earned a number of residents the right to return to the Wrentham Developmental Center. Colleen said she was especially gratified when she found that one person, who had been moved back to Wrentham, started talking again, and was able to visit with his three brothers, all with intellectual disabilities and living in different DDS placements.

Process became more adversarial

In the past 10 to 15 years, Colleen said, she found that COFAR’s relationship with DDS and successive administrations changed. That change, from a relatively cooperative relationship to a more adversarial one, came as those administrations began closing Fernald and other remaining Intermediate Care Facilities (ICFs).

While six ICFs still remained in the state as of 2008, only two remain today – the Wrentham Developmental Center and the Hogan Regional Center.

More and more, Colleen said, she found herself fielding calls from family members living in the community-based group home system looking for help in dealing with problems of neglect and abuse. “We became more of a watchdog organization,” she said.

While DDS commissioners and other administration officials would, in the past, often attend COFAR meetings and gatherings, “we now get the runaround and few replies,” she said.

Through it all,  Colleen said, her personal mission remained unchanged.  “My view is that’s why we’re here. Let me help that family.”