- Associated Press - Sunday, October 12, 2014

BLOOMINGTON, Ind. (AP) - Ask Tim Hines about his daughter’s death, and he’ll tell you about her life.

He’ll tell you that when Martha was born in 1956 in Iowa, doctors were reluctant to diagnose her as having Down syndrome, but they were quick to tell him she probably wouldn’t live very long. He’ll tell you how he and his wife decided to keep Martha with them despite insistence from others to institutionalize her. He’ll tell you how Martha had to stay at home until they could find a private program that would accept her, because public schools wouldn’t.

Tim Hines will tell you so much, you’ll be able to picture her cleaning at the Sleep Inn in Jasper, where she worked for a few years.

“The only problem they ever had with her is when she thought it was time to mop in the breakfast area, she wasn’t above shooing people out. Paying customers,” he told The Herald-Times(https://bit.ly/1o1Jhfh ). “So, they had to watch that a bit and not let her get too enthusiastic about it.”

You might even feel like you can hear Martha using one of her famous catchphrases that made everyone laugh at the hospital where she was undergoing cancer treatment.

“By the time we left that clinic, every doctor and every nurse was using the phrase, ‘You got that right,’” Hines said. “When they talked to each other, passing information, ‘you got that right.’ Martha was extremely popular.”

When Hines finally explains how she beat cancer and survived for years afterward before succumbing to a series of mini-strokes in 2011 at the age of 54, you’ll feel a little sad, but not too much, because she had a fulfilling life. It’s probably not the type of life you would want - Martha liked to mop more than most - but Hines is sure it was the right kind of life for her.

“We even talked about it: ‘Do you think Martha would have liked it better if she had a more normal existence, like the other kids?’ And we decided probably not in her case, because she had the right universe to live in,” he said.

That’s the thing people often don’t realize about those living with disabilities, said Mary McKinney, skills development coordinator with Stone Belt.

“Some of our clients might enjoy sitting in the sunshine, and that’s a high quality of life for them,” she said. “Quality of life is very subjective.”

Stone Belt is one of the oldest and largest service providers for individuals with developmental disabilities in south-central Indiana, according to its website. McKinney has managed social work services for the group homes Stone Belt operates. She has spent her career trying to find the best ways to support the people Stone Belt serves throughout the different stages of their lives, including the end.

There are two times when end-of-life planning is discussed, McKinney said. One is at the client’s annual meeting with support staff, which would also include any family or guardian they may have. The other is when a client is diagnosed with a serious condition that’s progressive in nature, she said.

It can be tough to talk about, but it’s necessary to ensure they have the money for the kind of funeral they want. Stone Belt clients typically receive the bulk of their income from Social Security. They get $52 a month for spending money, and the rest goes to Stone Belt to pay for their living expenses. They can also only keep up to $2,000 in their bank accounts, or they will lose Medicaid benefits. They can, however, access savings held in a trust. That’s why they’re encouraged to start a funeral trust, because it’s not considered an asset.

McKinney acknowledged it may seem like the rules are designed to keep clients poor, but clients’ medical needs are always covered.

“It’s definitely a trade-off, but that’s how the system works,” she said. “The system is stressed at times. Medicaid rates rarely rise in terms of reimbursements for facilities. We’re asked to do more with a limited amount as our population ages and needs more care.”

Preplanning is also important from an emotional standpoint. Hines said he was able to plan for Martha’s funeral and include a private showing not only for her family, but also for the people she lived with in her group home.

“They had all lived together for years,” he said. “They all have different levels of intellect, but they all have strong emotions, in one form or another, and we thought it was really important we had the opportunity. If we hadn’t preplanned it, we might have missed the whole boat.”

That’s a far cry from what death was like for people with disabilities when Martha was born. In the mid-1950s, most were subjected to deplorable conditions in state hospitals, McKinney said. They were given minimal medical care and experienced barbaric punishments.

“In the case of someone with a behavioral problem, say someone who was biting people, an order may have been given to remove their teeth,” McKinney said.

Institutions like that were still in operation into the 1970s, but it was during the 1960s civil rights movement that things began to change. It started with race and gender issues, and disabilities came last, McKinney said.

“It was a progression,” she said. “A recognition that all individuals deserve basic human rights.”

Rebecca Philippsen has seen that progression firsthand. She is Martha’s older sister, but Martha seemed to be the one that shaped her life. In high school, Philippsen worked with disabled children at summer camps. In college, she studied education and went on to work in special education at Bloomington High School North, where she stayed for 30 years.

She was a teacher when severely disabled students were taken out of Stone Belt and integrated into the public school system. She saw the creation of the peer mentoring program at the Monroe County Community School Corp., which gave general education students the opportunity to work with the most disabled students.

That integration stretched people’s comfort levels at first, but it also helped shape more accepting, compassionate human beings, she said. And that’s what she wants everyone to understand about people with disabilities at all stages of life.

“In the end, we all need to be treated the same,” Philippsen said. “The more we do that, the better the world will be.”

___

Information from: The Herald Times, https://www.heraldtimesonline.com

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