In 1966, Lawrence resident Anna “Petey” Cerf was appalled by what she saw as a visitor in a nursing home.

A blind woman — whom Cerf read to regularly — was ill and calling for help. The nurse came into the room and said, “Shut up. You’re always yelling.” The next day, Cerf saw the patient’s obituary.

Cerf took action. She and five other women, including Lee Ketzel of Lawrence, advocated for better care in nursing homes. They began by traveling the state and having conversations with others. They quickly learned they were not alone in their concerns.

“They were heartbreaking stories wherever we went,” Ketzel said. “We became increasingly concerned about the conditions that many of the patients were experiencing. They were lying in wet beds and not getting individual attention and activities. Some were developing bed sores from being in the same position for too long.”

There was no pre-employment training requirement for nurse aides who provide most care, and often the nursing homes had an inadequate number of staff.

In 1975, Cerf founded Kansans for Improvement of Nursing Homes. Within three years, state laws were passed that improved standards.

“I just think that it’s amazing that 35 years ago there were people who were willing to stand up to the industry, willing to stand up to legislators, willing to stand up to regulators and I am talking at the state and national level,” said Mitzi McFatrich, executive director of the nonprofit, which is now called Kansas Advocates for Better Care.

Honoring Parkinson

Cerf died in 1996, but her legacy and work continue.

McFatrich said while bed sores are no longer accepted, they still happen.

The recent state budget cuts have affected how often nursing homes are inspected. Now, they are surveyed every 15 months instead of once a year.

“That’s not optimal in terms of keeping facilities moving toward the best care,” McFatrich said.

There also are waiting lists to receive Medicaid benefits for home- and community-based services for elderly and/or disabled people.

“What ends up happening is people literally just kind of limp along until there’s an acute issue and then they are hospitalized or they’ve used up their resources and they have to go to nursing homes for care, which is more expensive,” she said.

While there were consequences to the cutbacks, McFatrich said they could have been worse if Gov. Mark Parkinson hadn’t gone to bat for people who need long-term care services. That’s one reason he is being honored Sunday by the organization.

“He took a politically unpopular position of promoting the sales tax to make sure that there continued to be that safety net. In tough times, I think he’s really stepped forward,” McFatrich said. “He really has worked hard to ensure that people who don’t have resources still have access to quality care.”

After serving as governor, Parkinson will become president and CEO of the American Health Care Association and National Center for Assisted Living, the national nonprofit organization which represents assisted living, nursing facility, developmentally disabled and sub-acute care providers.

He also owned nursing and assisted living facilities that were known for their home-like design and patient-centered care.

McFatrich said more and more long-term care facilities are adopting similar models. It gives residents the freedom to make choices. For example, choosing between a shower and bath, or eating when they are hungry instead of at a designated time.

“It’s about quality of life,” McFatrich said.

Work continues

Kansas Advocates for Better Care, 913 Tenn., has two full-time employees, including McFatrich, and operates on $150,000 annually. It has 650 members from across the state and 16 board members.

“When we first started, nursing homes were pretty much it. People were either being taken care of at home by their families or being taken care of in nursing homes,” she said.

Now, there are hospice, assisted living, and home- and community-based services.

About one year ago, McFatrich received a letter and a picture from an 86-year-old man that she won’t soon forget. The picture was of his wife who was very frail and had a Stage 4 bed sore that she died from.

“He was just about to go into a nursing home and he was scared to death, and he wanted to make sure that we knew where he was and what was happening,” McFatrich said.

He had become a member of the organization years ago because of what had happened to his wife. McFatrich said they helped him and he was set to move, but just before moving day, he died.

“It was almost like he made the choice to die rather than to go to the nursing home. That was just heart-breaking to me,” McFatrich said.