thedrifter
03-10-07, 06:44 AM
Posted on Sat, Mar. 10, 2007
Living with MS, they hope to live on their own
For people like David Chaikin, not poor but not rich, sharing the bill for care can keep independence affordable.
DON BOXMEYER
Whenever David Chaikin got bored with things, he'd go aloft and jump out of an airplane. He'd fall about 13,000 or 14,000 feet and land in the corn; then someone would pick him up and put him back in his wheelchair, and he'd go home singing.
David is 58 now, and he has run out of jumps but not out of challenges. Multiple sclerosis has claimed David's mobility but not his nobility, and his next adventure is on the ground. David — and others like him — needs somewhere to live.
The challenge comes in being able to afford suitable housing and, at the same time, the personal care David will require just to get through the day. There are financial solutions, but they apply to either the poor or the wealthy. David, who worked all his life until his retirement last month, is not in either category.
"The MS Society of Minnesota has a brand new crown jewel," David says, referring to Kingsley Commons, a 24-unit apartment residence in North Minneapolis for people with MS, "but that doesn't work for me."
David earns more in retirement than the qualifying amount (about $28,000 annually), and the waiting list has almost 90 names on it.
"Accessible housing is an oxymoron to me," David says. "My illness has forced me to go out on disability, but I have nowhere to go. I've worked all my life, paid taxes, and now, when I need services, I have to give up all my savings just to get care."
Underlying everything is the absolute need for personal care assistance just in getting to the breakfast table. David served in the Marines and ran marathons, but after his MS was diagnosed in 1992, he went from a cane to crutches and finally to a motorized wheelchair.
He lives independently now, but before he retired from his management job at an electronics firm, it took him three hours to get ready for work and another two hours at the end of the day just to go to bed. Realistically, he knows things will not get easier.
MS is cruel that way. It nibbles relentlessly.
People don't die from MS, but it interrupts the flow of information from the brain to the body and stops people from moving. It has done that to David's legs, and it could still advance to his vision, his speech and his hands.
He is at the point where he soon will need daily personal assistance. But he has done the math. At the prevailing hourly rate for a personal care attendant, the minimum two hours twice a day would cost him $30,000 a year. His pension does not allow for that and a decent place to live, he says. His savings would be eaten up in a few years.
But he has a plan, which involves others with MS who find themselves in the same fine mess.
People like Barbara Peterson, 53, of South Minneapolis, who was diagnosed with MS in 1987, six months after her wedding.
"I'm not married now," Barbara says. She worked as an office manager until 1993, when the MS caused too much fatigue for her to continue working.
"You're in your 30s when the MS hits," she says. "You're on your way, building your future when here it comes.
"You don't want a free ride," she adds. "You just want to continue to make decisions for yourself. God knows we don't have the options we used to have, but we cling to those we have."
Those options may come in the form of shared personal care services in a common setting. David, Barbara and others, perhaps, could share a personal care attendant to help them with dressing and apartment chores, vastly reducing their individual costs. That, coupled with the right kind of housing for the disabled — low counters, large open spaces, bigger bathrooms, lower thermostats, sensibly placed electrical outlets — could help people with MS live as independently as possible.
The National MS Society's Minnesota Chapter is working with a developer that plans to break ground this spring on condominiums in South Minneapolis along the Hiawatha light-rail line. This project, called Olin Crossings, could provide the type of living arrangement David and Barbara are looking for.
David is on the MS Society's housing committee and was disappointed when he learned he wouldn't qualify for the new Kingsley Commons housing. But David didn't quit — he went to Plan B.
"He is largely the inspiration for our exploration into the concept of shared services," says Holly Anderson, spokeswoman for the Minnesota Chapter of the National MS Society. "He's the voice of the people in his situation, and he inspired us to look at other solutions. When you think about it, it just makes sense to share those services if you can."
She says service providers will be sounded out for reactions at various meetings.
"The desired outcome," David says, "is to have a market-rate community of condos or apartments where people with MS who have assets could live and pool their needs to make it all work. That would work for me."
Retired Pioneer Press columnist Don Boxmeyer can be reached at donboxmeyer@comcast.net.
Ellie
Living with MS, they hope to live on their own
For people like David Chaikin, not poor but not rich, sharing the bill for care can keep independence affordable.
DON BOXMEYER
Whenever David Chaikin got bored with things, he'd go aloft and jump out of an airplane. He'd fall about 13,000 or 14,000 feet and land in the corn; then someone would pick him up and put him back in his wheelchair, and he'd go home singing.
David is 58 now, and he has run out of jumps but not out of challenges. Multiple sclerosis has claimed David's mobility but not his nobility, and his next adventure is on the ground. David — and others like him — needs somewhere to live.
The challenge comes in being able to afford suitable housing and, at the same time, the personal care David will require just to get through the day. There are financial solutions, but they apply to either the poor or the wealthy. David, who worked all his life until his retirement last month, is not in either category.
"The MS Society of Minnesota has a brand new crown jewel," David says, referring to Kingsley Commons, a 24-unit apartment residence in North Minneapolis for people with MS, "but that doesn't work for me."
David earns more in retirement than the qualifying amount (about $28,000 annually), and the waiting list has almost 90 names on it.
"Accessible housing is an oxymoron to me," David says. "My illness has forced me to go out on disability, but I have nowhere to go. I've worked all my life, paid taxes, and now, when I need services, I have to give up all my savings just to get care."
Underlying everything is the absolute need for personal care assistance just in getting to the breakfast table. David served in the Marines and ran marathons, but after his MS was diagnosed in 1992, he went from a cane to crutches and finally to a motorized wheelchair.
He lives independently now, but before he retired from his management job at an electronics firm, it took him three hours to get ready for work and another two hours at the end of the day just to go to bed. Realistically, he knows things will not get easier.
MS is cruel that way. It nibbles relentlessly.
People don't die from MS, but it interrupts the flow of information from the brain to the body and stops people from moving. It has done that to David's legs, and it could still advance to his vision, his speech and his hands.
He is at the point where he soon will need daily personal assistance. But he has done the math. At the prevailing hourly rate for a personal care attendant, the minimum two hours twice a day would cost him $30,000 a year. His pension does not allow for that and a decent place to live, he says. His savings would be eaten up in a few years.
But he has a plan, which involves others with MS who find themselves in the same fine mess.
People like Barbara Peterson, 53, of South Minneapolis, who was diagnosed with MS in 1987, six months after her wedding.
"I'm not married now," Barbara says. She worked as an office manager until 1993, when the MS caused too much fatigue for her to continue working.
"You're in your 30s when the MS hits," she says. "You're on your way, building your future when here it comes.
"You don't want a free ride," she adds. "You just want to continue to make decisions for yourself. God knows we don't have the options we used to have, but we cling to those we have."
Those options may come in the form of shared personal care services in a common setting. David, Barbara and others, perhaps, could share a personal care attendant to help them with dressing and apartment chores, vastly reducing their individual costs. That, coupled with the right kind of housing for the disabled — low counters, large open spaces, bigger bathrooms, lower thermostats, sensibly placed electrical outlets — could help people with MS live as independently as possible.
The National MS Society's Minnesota Chapter is working with a developer that plans to break ground this spring on condominiums in South Minneapolis along the Hiawatha light-rail line. This project, called Olin Crossings, could provide the type of living arrangement David and Barbara are looking for.
David is on the MS Society's housing committee and was disappointed when he learned he wouldn't qualify for the new Kingsley Commons housing. But David didn't quit — he went to Plan B.
"He is largely the inspiration for our exploration into the concept of shared services," says Holly Anderson, spokeswoman for the Minnesota Chapter of the National MS Society. "He's the voice of the people in his situation, and he inspired us to look at other solutions. When you think about it, it just makes sense to share those services if you can."
She says service providers will be sounded out for reactions at various meetings.
"The desired outcome," David says, "is to have a market-rate community of condos or apartments where people with MS who have assets could live and pool their needs to make it all work. That would work for me."
Retired Pioneer Press columnist Don Boxmeyer can be reached at donboxmeyer@comcast.net.
Ellie