Tuesday, April 25, 2006

Sun Article

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

Monday, April 24, 2006

The Work Begins

The new week has begun and there are 21 official days until I am Missoula bound. Things will be really picking up from here on in but I'm excited to be gearing up for this new change in my life.

Starting this week I'll be getting ready to begin packing and organizing stuff for the move. Getting a little packing done is my big goal of the week as everything else is pretty much ready to roll.

The picture in this post is of Mt. Jumbo in Missoula. The house I'll be living in is about a couple blocks from the base of Mt. Jumbo. There are deer and elk that hang out up there and they can easily be seen from the house. I'm getting very excited to take in the amazing scenery around Missoula. Will be very different than the grassy plains of North Dakota.

The weather over the past weekend was great. I went home Saturday and sat in the yard all afternoon while my folks tended to some stuff around the house. Yesterday I also was outside soaking up rays in the park which felt great. Supposed to be much cooler this week but hey I guess it's still April :-)

Well I'm off to make some phone calls and get a few things done. I'll be back next Monday with the May Day edition of the Montana Countdown.



Tuesday, April 18, 2006

Smooth Week

Here in North Dakota the weather the last few days has felt like June instead of mid April. It just amazes me at how the seasons can so quickly change up in the northern plains.

I had a very good Easter weekend and was able to be at my parents on Sunday for the day. I was able to sit outside for quite awhile and my dad and I walked out to the nearby golf course. Dinner was great and was just very nice to relax at home.

This week doesn't look too bad. The Jamestown Sun (local paper) will be publishing an article on my move maybe this week or next. I'm looking forward to people knowing why I must leave this state to gain my freedom from the nursing home.

Tomorrow night I plan to attend the Williams and Ree show at the Civic Center. Should be a great time and an enjoyable evening. The Cubs have been doing great also and I enjoy watching the games when they are televised. Hoping the Cubs will make the summer very exciting.

Things are pretty smooth on the Montana front. I have appointments all set with my new docs and case manager for when I arrive in Missoula. It's nice to see things falling into place and there have been many great people helping me make preparations.

That's about it for this week but I'll have a new post next Monday.



Monday, April 10, 2006

5 weeks and counting

The sun is shining out this morning and rumor has it that it may hit 70 degrees today! It's exciting knowing that this weather will keep getting better and better.

Had an enjoyable weekend. Visited at my parent's house on Saturday and sat outside for a few hours. Felt great to be out in the sun even though I got a slight sunburn. The weekend ended on a high note as the Cubbies rallied to sweep the Cardinals in a 3 game series!

Things are going well on the Montana front. Last Friday I was able to secure a van to get me to Missoula in May. There isn't much going on this week except a possible interview with the local paper. I'll be spending Easter with my family this weekend.

Please keep me in your thoughts as the time for me to move draws near. I'll post another update next week. Have a Happy Easter!


Monday, April 03, 2006

The Countdown Begins

In about roughly 45 days from this past weekend, I'll be set to head out on my great Montana adventure. Every week from now and through my move, I'll be posting updates on how things are going.

This week will be busy with trying to finalize some transportation arrangements for my trip west. I have a couple of real good options but my final choice will depend on what I can get scheduled the best. Other than that, the week looks good. Just wishing on the weather getting warmer.

Here's a few highlights on Missoula for inquiring minds. Missoula is a progressive city of 57,000 that is nestled in the western Rockies of Montana. Missoula is known as the Garden City and it's home to the University of Montana, the Rocky Mountain Elk Foundation, & the Missoula Children's Theater. There also are many opportunities to enjoy the scenic outdoors in the area and Missoula is within easy driving distance of Glacier & Yellowstone National Parks. Missoula
also has a great webcam at http://co.missoula.mt.us/webcam/default.htm

Well another week begun and today kicks of the season for a majority of major league baseball. Another Cubs campaign starts and I hope to see them to well. If they don't well there's always next year they say ;-)