Here's the text of the article that the Jamestown Sun ran today on my upcoming move to Montana.
Advocate for people on ventilators to move to Mont.
By David Maack The Jamestown Sun
Mark Boatman is giving up the fight and moving next month to Missoula, Mont.
The long-time advocate for people on ventilators has an opportunity to live on his own and he’s taking it.
Boatman, 30, has Duchenne Muscular Dystrophy and has been living in Central Dakota Village, a senior citizens residence for about three years. He has been trying to convince the North Dakota Department of Human Services to allow him to move out of the care facility for nearly two years.
Boatman is on a respirator and requires an attendant to handle any problems that arise with the ventilator, as well as dressing, bathing and eating. He is able to navigate with a motorized wheelchair which is controlled by a “straw,” or control, in his mouth.
“The state isn’t cooperating with integrating me,” Boatman said.
The level of care Boatman would require if he were to live on his own is beyond the state’s Medicaid guidelines, said Maggie Anderson, director of medical services for the DHS. She spoke in general terms because of privacy issues.
“The highest rate that can be paid is the highest monthly rate for a nursing facility,” Anderson said.
In North Dakota, the limit is $10,000 a month. For Boatman to live on his own, it would cost the state more than that to provide 24-hour-a-day care for him, Anderson said .
Boatman has been trying to find a way out of his situation since he’s been in the nursing home.
“I’m going to live with a guy that has the same kind of muscular dystrophy as I have. He is my age and has a live-in caregiver,” he said.
Boatman met Dustin Hankinson through a support group and the men discussed for several months the possibility of Boatman moving to Missoula.
“Montana has a lot better system for taking care of people in the community,” Boatman said. “They will pay for a skilled caregiver and eight hours of nursing a day. For someone who wants to pursue life, (a nursing home) is not a real conducive environment.”
A special Medicaid waiver in Montana means he is eligible for 24-hour nursing care, seven days a week. Boatman has been on a ventilator for about three years. He and most other people on ventilators just need a person skilled in what to do should something go wrong, he said.
He was diagnosed when he was 5 years old, and has outlived expectations for when he would die. Ventilators have added 10 to 15 years for people who are diagnosed with Duchenne, he said.
“I feel the Department of Human Services has let me down. I’ve lived here all my life and I’ve been on Medicaid most of my life,” Boatman said.
Still, the decision to move was not easy, he said.
“I’ve got to leave my family, my friends. I’ve lived all my life in Jamestown. We’re a close family and it’s not going to be easy. Moving 850 miles to Missoula has not been an easy decision,” Boatman said.
Boatman will continue with the ventilator support group through the Internet.
“That takes a great deal of my time each day. That has been very helpful, hearing from other people and how they live,” Boatman said. “Sometimes it’s very tough to face reality in a nursing home.”
Boatman has been researching Missoula, and likes the opportunities there. It has two trauma-certified hospitals, a bonus for people like him who have special health needs. He is also planning to take some courses at the college.
The capitol, Helena, is 90 minutes away, and he will have some advocacy opportunities during the legislative session. He also intends keeping an eye on North Dakota politics. He is hoping to eventually do advocacy work on the national level.
Boatman has a blog and intends to keep people informed about his life through it. He has already made several posts to it about his pending move. More details are at http://nodakwheeler.blogspot.com.
Sun reporter David Maack can be reached at (701) 952-8454 or by e-mail at davidm@jamestownsun.com
