Last Thursday, I made a trip over to Jamestown College to speak to the junior class of the nursing program. I spoke about what it's been like to live as a ventilator user with muscular dystrophy.
It was a unique experience to be able to share my perspectives with these future nurses. As a person with a disability, I believe it's important to educate the people around us in the communities where we live. Having a disability is just part of living life and able bodied folks need to know that we are just like them. We have the same goals, dreams, hopes, and fears as they do.
By speaking to these nursing students, I truly believe a difference is being made. It's a small step towards people with disabilities being seen for whats inside instead of outside appearances.
Mark
Sunday, November 13, 2005
Thursday, November 10, 2005
In The News
On Tuesday the Jamestown Sun featured an article on my concerns over the proposed Medicaid cuts. It was a great opportunity to inform my community about the severe impact these cuts could have on folks like me and countless people with disabilities across this Nation. The complete text of the article is below.
Peace,
Mark
Boatman Concerned About Cuts
By David Maack
The Jamestown Sun
11/8/05
For Mark Boatman, the issue of Medicaid funding cuts raises life and death concerns. He has been on a ventilator since February 2003 because he has Duchenne muscular dystrophy. The Bush administration is proposing significant cuts in the Medicaid budget, a proposition that concerns Boatman over the potential effect of those cuts on people with disabilities.
The latest figures from Sen. Byron Dorgan’s office are proposed cuts of $4.285 billion from Medicaid between 2006 and 2010 and $14.184 billion over 10 years. The reconciliation bill is being considered in the Senate.
‘If Medicaid is cut at all, it will be difficult to get the things I need to live and have quality of life. Medicaid cuts would also jeopardize advancing the growth of community-based care options,” Boatman said.
“It's difficult now to get things covered under Medicaid. Some examples of this is getting needed medical equipment and repairs done to wheelchairs and other vital items. The money in Medicaid is stretched thin now. I fear what will happen if that situation gets more critical,” he added.
Boatman serves on the consumer advisory committee for International Ventilator Users Network. The group recently posted a resolution, which may be located at www.post-polio.org. The resolution calls on government officials, policy makers and advocacy groups to ensure the basic rights of ventilator users to “live, to be healthy and to remain free in the community as contributing members of society.” It also requests support for Medicaid entitlements for those with disabilities, participation by those with disabilities in developing Medicaid and other health-related policies and more effort into eliminating bureaucratic waste and provider abuse.
“We have to have the money to protect our equipment and services,” Boatman said. “We need to keep living.” He said a number of states are either not funding ventilators, or are requiring those on ventilators to live in nursing homes in order to have the life-preserving machinery provided. The Supreme Court ruled in the 1999 Olmstead case that people with disabilities must be provided for in the least restrictive manner. Forcing people on ventilators to live in nursing homes is a violation of that ruling. It isn’t that difficult to train someone on the care of a ventilator and the person using it, he said.
“The saddest thing about using a ventilator is people have over-complicated it. It’s just a piece of equipment,” Boatman said.
But community care, or caring for someone in his or her home, also costs money.
“Our states need to put more money into these programs. It’s much less expensive to do community care than nursing home care. North Dakota spends 95 percent of its (Medicaid) funds in nursing home care, 5 percent care in communities,” Boatman said.
Boatman was diagnosed with Duchenne muscular dystrophy when he was a young child. At that time a person with that diagnosis was unlike to live past his teenage years. Boatman turned 30 in August. With a ventilator, he expects to live for several more years and would prefer to be someplace other than a nursing home. He has petitioned the state Human Services Department for home care.
Boatman recently opened his own Web site, http://nodakwheeler.blogspot.com/. He discusses a number of issues of interest to those with disabilities, or those interested in learning more.
If cuts to Medicaid are to be eliminated and reversed, it will be up to Congress to recognize the need. Sen. Byron Dorgan, D-N.D., is aware of the proposed cuts. “They’re cutting from the level of need,” Dorgan said in a recent telephone interview from Washington, D.C. “If you cut from that, you’re cutting from poor people.” Dorgan said that if the tax cuts President Bush asked for and got from Congress for people making more than $1 million a year was eliminated, that money would be more than enough to eliminate the cuts in Medicaid. Whether those cuts in Medicaid can be reversed or not is uncertain at the present time, he said. The president and many members of Congress favor the cuts.
Peace,
Mark
Boatman Concerned About Cuts
By David Maack
The Jamestown Sun
11/8/05
For Mark Boatman, the issue of Medicaid funding cuts raises life and death concerns. He has been on a ventilator since February 2003 because he has Duchenne muscular dystrophy. The Bush administration is proposing significant cuts in the Medicaid budget, a proposition that concerns Boatman over the potential effect of those cuts on people with disabilities.
The latest figures from Sen. Byron Dorgan’s office are proposed cuts of $4.285 billion from Medicaid between 2006 and 2010 and $14.184 billion over 10 years. The reconciliation bill is being considered in the Senate.
‘If Medicaid is cut at all, it will be difficult to get the things I need to live and have quality of life. Medicaid cuts would also jeopardize advancing the growth of community-based care options,” Boatman said.
“It's difficult now to get things covered under Medicaid. Some examples of this is getting needed medical equipment and repairs done to wheelchairs and other vital items. The money in Medicaid is stretched thin now. I fear what will happen if that situation gets more critical,” he added.
Boatman serves on the consumer advisory committee for International Ventilator Users Network. The group recently posted a resolution, which may be located at www.post-polio.org. The resolution calls on government officials, policy makers and advocacy groups to ensure the basic rights of ventilator users to “live, to be healthy and to remain free in the community as contributing members of society.” It also requests support for Medicaid entitlements for those with disabilities, participation by those with disabilities in developing Medicaid and other health-related policies and more effort into eliminating bureaucratic waste and provider abuse.
“We have to have the money to protect our equipment and services,” Boatman said. “We need to keep living.” He said a number of states are either not funding ventilators, or are requiring those on ventilators to live in nursing homes in order to have the life-preserving machinery provided. The Supreme Court ruled in the 1999 Olmstead case that people with disabilities must be provided for in the least restrictive manner. Forcing people on ventilators to live in nursing homes is a violation of that ruling. It isn’t that difficult to train someone on the care of a ventilator and the person using it, he said.
“The saddest thing about using a ventilator is people have over-complicated it. It’s just a piece of equipment,” Boatman said.
But community care, or caring for someone in his or her home, also costs money.
“Our states need to put more money into these programs. It’s much less expensive to do community care than nursing home care. North Dakota spends 95 percent of its (Medicaid) funds in nursing home care, 5 percent care in communities,” Boatman said.
Boatman was diagnosed with Duchenne muscular dystrophy when he was a young child. At that time a person with that diagnosis was unlike to live past his teenage years. Boatman turned 30 in August. With a ventilator, he expects to live for several more years and would prefer to be someplace other than a nursing home. He has petitioned the state Human Services Department for home care.
Boatman recently opened his own Web site, http://nodakwheeler.blogspot.com/. He discusses a number of issues of interest to those with disabilities, or those interested in learning more.
If cuts to Medicaid are to be eliminated and reversed, it will be up to Congress to recognize the need. Sen. Byron Dorgan, D-N.D., is aware of the proposed cuts. “They’re cutting from the level of need,” Dorgan said in a recent telephone interview from Washington, D.C. “If you cut from that, you’re cutting from poor people.” Dorgan said that if the tax cuts President Bush asked for and got from Congress for people making more than $1 million a year was eliminated, that money would be more than enough to eliminate the cuts in Medicaid. Whether those cuts in Medicaid can be reversed or not is uncertain at the present time, he said. The president and many members of Congress favor the cuts.
Tuesday, October 18, 2005
Hands of Change
It has been way to long since I've posted but things have been pretty busy lately. Here's an update on a few of the things I've been up to.
Today I was one of three speakers that did a disability awareness presentation at Jamestown College. The program is called Hands of Change and it involved speaking to two classes of education students about what it's like living with a disability. It was great to share our experiences and show that having a disability is just a part of our life and that it doesn't define us as people. The local gal from the Freedom Independent Living Center was there to talk with us and explain the services they provide to people with disabilities. It was a great afternoon and I was glad I could participate.
A couple weeks ago I finished the 2005 Fall newsletter for the vent support group I operate. The newsletter can be viewed at http://www.geocities.com/npvsn/october05newsletter.htm It has been great meeting many new people and providing vent users a place to communicate.
I've been staying busy with other advocacy work and trying to start a grassroots group here in Jamestown. It's so important to bring people with disabilities together to discuss issues and advocate for positive system changes.
The fall weather has been great and it's been so nice to be able to be outdoors enjoying it. The weeks ahead will be keeping me busy but I hope to have another new post on here very soon.
Take care,
The Nodakwheeler
Tuesday, August 16, 2005
Milestone
Today is a very big day in my life. I'm doing something that seemed impossible at many times in my life. That somethijng is me turning 30.
I was born with Duchenne muscular dystrophy, which is a life threatening muscle disease. When I was diagnosed in 1980, the prognosis for my future was pretty awful at best. The doctor's were telling my parents that I'd be extremely lucky to live past my teens. I guess there were different plans for my life.
My life has taken me many places and through many ups and downs. My family and friends have made the tough times easier to bear and the good times even more memorable. I will always be grateful for that.
Modern medicine must be thanked for my 30 years. Using a ventilator has given me
the opportunity to keep on living and the reason to dream for the future. It has also given me the chance to meet others that are sharing the same experience.
It's been a great ride and I can't wait to see where the road goes. Have a good day!
Mark (The Nodakwheeler)
I was born with Duchenne muscular dystrophy, which is a life threatening muscle disease. When I was diagnosed in 1980, the prognosis for my future was pretty awful at best. The doctor's were telling my parents that I'd be extremely lucky to live past my teens. I guess there were different plans for my life.
My life has taken me many places and through many ups and downs. My family and friends have made the tough times easier to bear and the good times even more memorable. I will always be grateful for that.
Modern medicine must be thanked for my 30 years. Using a ventilator has given me
the opportunity to keep on living and the reason to dream for the future. It has also given me the chance to meet others that are sharing the same experience.
It's been a great ride and I can't wait to see where the road goes. Have a good day!
Mark (The Nodakwheeler)
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