Thursday, December 22, 2005
It's hard to believe that Christmas is again upon us. The time sure does fly that's for sure.
This past year has been a good one and there are a few highlights that I'd like to share. Last spring I started the Northern Plains Ventilator Support Network (NPVSN). The NPVSN is an Internet based support group that has become a growing forum for vent users to communicate. It's been awesome to meet many people from around the country and to have made many new friends. In the next year I look to expand the NPVSN and to continue meeting wonderful people.
2005 has also been a busy year for the disability advocacy work I've been involved with. In March I was interviewed by Tracy Briggs from WDAY TV in Fargo. She did a story on me being stuck in a nursing home and the great need for increased home and community based services/supports. The word needs to continue to spread that the current long term care system is not letting many people across this country choose where they want to live.
Also in 2005 I was selected by the International Ventilator Users Network to serve on their Consumer Advisory Committee (CAC). The CAC deals with issues and policy matters as it relates to the international ventilator community. We recently drafted a resolution that put forth our concerns as it relates to the current threats to Medicaid and other government programs. This resolution was sent to the President, several state Governors, and other important political folks. My hometown paper The Jamestown Sun also did a story on my involvement with the resolution.
These are a few of the highlights from the busy year gone by. There is much to do in '06 and I look forward to the adventures ahead of me.
Thursday, December 15, 2005
I recently watched the acclaimed documentary Murderball and what a great show! Murderball follows the growth of Quad Rugby as it's risen to become an Olympic sport. The members of the US and Canadian teams are the main focus as the film lays out many different interesting story lines.
The thing about this movie I really like is the realistic and honest portrayal of active adults with disabilities. It's not a pity filled "oh poor me" movie but rather a film about people living life and doing what they want.
This film not only deals with athletic competition but with the everyday life of these athletes. It shows them as regular guys who like to party, have fun, and just plain enjoy life. Alot of the quad rugby guys have girlfriends and wives and love/relationship issues are portrayed in a open and honest way.
I hope many people with disabilities and able bodied folks check out Murderball. This film shatters many misconceptions about disability and it shows that people with disabilities can do anything they choose.
If you wanna check out a little bit of Murderball visit http://www.murderballmovie.com
Mark AKA The Nodakwheeler
Thursday, December 01, 2005
This week the International Ventilator Users Network put my recent newspaper article on the proposed Medicaid cuts on their website. To view the actual article please visit http://www.post-polio.org/ivun/images/BoatmanArticle.jpg It has been great to get the truth out there on the things that could devastate the lives of the poor and people with disabilities in this country. We must keep fighting and make the politicians accountable for their actions. The time for change is here and my hope is the 2006 election will bring that.
On Monday, I sadly lost a dear friend. My friend Mark Schager lost his strong and brave fight with Duchenne MD at the age of 38. He proved the medical establishment wrong by showing people with Duchenne's are living much longer quality lives. Mark had a great, funny, and intelligent personality that touched my life as well as many others.
Mark thanks for showing many of us with Duchenne's how to live strong and never give up the fight. Peaceful rest my dear friend.
Sunday, November 13, 2005
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.
Thursday, November 10, 2005
Boatman Concerned About Cuts
By David Maack
The Jamestown Sun
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
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.
Tuesday, August 16, 2005
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)
Tuesday, July 26, 2005
The past few days have been good and busy. On Saturday my friend Lori came down to visit me. She lives in the Northern part of the state and she's a vent user too. She's a great peson and we had a very nice visit. Always fun to visit good friends.
Today is the 15th anniversary of the Americans with Disabilities Act. Below is the text of an editorial I wrote that appears in my hometown paper. It addresses the good that the ADA has done but also the things left to be done.
Have a great day!
ADA Act halfway there
On July 26, the Americans with Disabilities Act (ADA) will turn 15 years old. To me the Americans with Disabilities Act (ADA) is one of the most important pieces of Civil Rights law in our Nation’s history.
The ADA was put into law to make our country more accessible and inclusive to all persons who have a disability. We have made progress but the ADA is not as implemented and enforced as it should be.
The most noticeable effect of the ADA is the increased accessibility for people with disabilities. In the community of Jamestown there have been positive changes in accessibility. More buildings, doorways, buses, sidewalks and paths are accessible to everyone. Yes, the increased access is nice but that’s only half the picture.
The other big part of the ADA is the protections guaranteeing folks with disabilities the right to full participation in American society. Unfortunately, many of us with disabilities are denied this right.
Many people with disabilities, including myself, require assistance with the activities of daily living. The problem is too many of us are given little or no choice where we receive that assistance.
Many people with disabilities are not being allowed to live and participate in our own communities. When we can’t find the help we need to live independently, we are forced into nursing homes and institutions.
The institutional care system has been well intentioned but it no longer fits the needs of all those it serves. More and more people today want to live in their own homes where they can run their lives the way they want. The demand for home-based care cannot be ignored but sadly these programs are severely under funded.
Medicaid in North Dakota spent $166,456,173 on nursing home institutional care in 2004. The most shocking thing is that North Dakota only spent $8,899,311 in 2004 on community-based care such as home-health services, personal care services and waiver services. This total spending amounts to a 95-5 percent split. There is a horrible bias of funding that nursing home institutional care gets and this must change. By the way, North Dakota is 49th in how little it spends on home care versus nursing home care.
Our government must level the funding to be fair to the providers of in home based care. Quality choices can exist and the ADA can make sure this happens. In 1999 the Supreme Court issued the landmark Olmstead decision. In Olmstead, the court affirmed the ADA requires states to provide all its services to people with disabilities in the best situation for that person. This court ruling must end the segregation of all disabled people who want their rightful place in society,
I encourage all people with disabilities and the people who care about them to speak out for needed change. The system must be challenged and held accountable. We must demand the rights we have been guaranteed by the highest court in the land.
Only when the opportunities for inclusion for all people with disabilities exist, will the Americans with Disabilities Act be a total success.
Thursday, July 07, 2005
The rest of the summer shoud keep me busy and maybe even out of trouble ;-) Last week, I finished and sent out the first newsletter for the new ventilator support group I started. It has been exciting to watch this group grow and to meet and make many new friends. When a person has a disability, being connected to others sharing similar experiences is so important. I've already started on the Fall edition and I look to keep busy with my group in the months to come.
It sounds like the next several days in North Dakota will be nice and warm. Will be nice to be outdoors and enjoy the rest of the summer. I might take in a day of our county fair next week.
I will have another post in a week or two, so stop on back.
Friday, May 13, 2005
During the past several weeks, I have been working on a very special project. I have started a support group called the Northern Plains Vent Support Network or NPVSN for short.
The motivation for starting a regional support group is very simple. I want to network and share experiences with other folks that know what its like being on a ventilator. Living in a rural area with specialized needs can be an isolating experience at times. Hopefully this new support group can bridge some of these gaps
The NPVSN will have a newsletter and email group to discuss the things that are important to vent users and their families/caregivers. Eventually there will be a website also. It is exciting and challenging to work on something like this but I believe there is great potential to do some good.
I will post updates from time to time on the progression of this new endeavor. Until next time.
Friday, April 01, 2005
What message does this send to other folks with disabilities and the value of our lives? Terri had a purpose in life as all people do but her husband was to blind to see her worth. It is my hope that her life and death will make people think about living life and dealing with end of life issues. I hope more and more people will decide their wishes and tell their families.
I have used life support for two years now and life is great for me. I can experience life and share my life with others. Life support is so very useful for many people and it does not always mean prolonging suffering. I shudder to think that if my family and docs weren't supportive of my decisions, I maybe would have chosen death. Thank god for supportive people and their belief in me.
There is no compassion by our government for the poor, innocent, and vulnerable. This morning I was listening to a Willie Nelson song. The most moving lyric to me was, "Is there no love anymore? Living in the Promise land." I'd like to think there is love in our country, but lately I have my doubts. God Bless you Terri!
Monday, March 28, 2005
Today I got an email from a gal at the International Vetilator Users Network (IVUN) in St. Louis. She is going to speak at a International Conference on Home Mechanical Ventilation in Lyon France next week. She will be talking about folks in the US living on vents and she wants to talk a little about me and my situation. I am very thrilled to be part of her presentation.
It is exciting to be an active part of the global community of ventilator users. I'm trying very hard to show people that using a vent is truly no big deal and that using one can greatly enhance life.. During the past few years I have met so many amazing and insipiring people. I have embraced this interesting adventure and look forward to what each new day has in store.
I will post on anything I hear that comes out of next week's International Ventilator Conference in France.
Tuesday, March 15, 2005
Last Thursday hopefully was a huge step towards freedom for me. I made a formal request to the ND Dept. of Human Services for 24/7 in-home care. Tracy Briggs from WDAY Channel 6 in Fargo came out to cover the signing of my request.
It is very exciting to be a voice for change in the way our country takes care of folks needing medical and attendant care. There really needs to be some thinking outside of the box done to find solutions to institutions and nursing homes. Our society needs to empower us instead of penalizing us for having special needs. People like myself are living better and longer due to modern medical technology. Just because I use these technologies, doesnt mean I can't live in the community. I just need the help to do it though. Hopefully, the next few months will bring that for me.
Having the media keep covering these issues is fantastic. It was a great having WDAY out in Jamestown here to tell my story. I just wish more voices could be heard on this. The demand for community based care is gaining and the fight continues on harder than ever.
I will keep posting on the developments of my request to ND DHS for community based care. These are exciting times for sure.
Monday, February 21, 2005
Recently WDAY-TV in Fargo did a two-part story on a gal with dementia who is fighting to stay out of a nursing home. She currently is getting help from the county but the county wants to discontinue home care services because of her dementia. Our government agencies are too quick to just toss someone right into a nursing home where their quality of life greatly decreases. Her family is fighting the county in court to stop the county from putting her in an institution. I hope they are victorious. It's time for the government to be held accountable to the civil right's of it citizens. There are many voices that are speaking out against oppression and institutionalization. I'm proud to be one of them.
Last week I was happy to watch the efforts of some of my advocate friends in Fargo. Freedom Resource Center hosted a press conference that focused on the need for increased major funding for home-based care. Right now nursing homes get 90% of all funding while home based care only gets10%. That is just wrong and shameful. My friend Gyle, who is on a vent 24/7 like me spoke on how he has stayed out of a nursing home for 15+ years. Now if he can stay in his own home, then almost anyone can. I want to give kudos to the TV & print media to giving coverage to this event.
It is exciting to watch an issue close to my heart and the heart of many others get attention. Stay tuned!
Tuesday, February 01, 2005
Many professions help deliver long-term care to those in need
Recently in The Jamestown Sun there was an article in the letters to the editor that North Dakota nursing homes know how to lobby. I find it very interesting in that there was some sarcasm in that particular letter even though there was a compliment
in the fact they felt nursing homes were effective lobbyists.
We know that the people who work in long-term care are very passionate about their jobs. We know the families who entrust their loved ones into our health care communities are also very passionate. If we are an effective lobby group, it is because we have very compassionate people asking the Legislature to provide the necessary funds for long-term care. That brings up a very good discussion. The nursing home of today is quite different than the nursing home of 25-30 years ago.
Today residents come for very short stays and sometimes for repeated stays. There are some residents who will make the nursing home their final home. We have found in the Jamestown facilities that almost 40 percent of the residents that come to live in a nursing home are discharged to their home, assisted living, basic care, or possibly even another nursing home in another community. Again, that is much different than 25 and 30 years ago.
There are more services available in the community of Jamestown and surrounding communities for home-based care. The Gardenette was about the only senior housing available in the area 25 years ago. Since that time we have the James House, the Post House, assisted living facility at Central Dakota Village, Roseadele which is a basic care for treating Alzheimer and dementia residents, and Rock of Ages and Bethel 4-Acres which both provide basic care. Jamestown Hospital and Central Valley Health also provide home- and community-based services. James River Senior Center providesmeals on wheels and transportation , things we never had 25 and 30 years ago. All these things have come about because citizens who care about citizens have asked for those services to be provided. So I find it interesting that the writer would single out one particular profession when it takes a lot of different professions to really deliver the
continuum of long-term care.
Gary M. Riffe
Community-based care needs an equal playing field in N.D.
I am writing in response to the Jan. 24 letter to the editor written by Gary Riffe that was printed in The Jamestown Sun. There are quite a few things in that letter that I would like to take issue with.
First off, I would like to say there is no doubt in my mind the power of the nursing home lobby in North Dakota. They sure do a fantastic job of protecting their financial standing and future while at the same time helping to deny the right of many North Dakotans to live in the community. I guess they figure the current system is working great, but that’s not the way I see things.
You see I am a 29-year-old who is stuck living in the institutional care system in our state. I don’t want to be in a nursing home but am forced to because home- and community-based services are severely under funded in North Dakota.
Riffe listed many places in Jamestown that provide assistance to the elderly and folks with disabilities, but he left out the Dewey Apartments. Before entering the nursing home in 2003, I received 24-hour-a-day care through a Medicaid waiver for almost nine years at the Dewey Apartments in Jamestown. I lived in my own apartment and was given much more choice and freedom in living my life the way I wanted to than I am allowed now. I was forced into the nursing home only because my disability required additional help for my needs.
I do agree that the people who take care of the elderly and folks with disabilities for the most part are very dedicated and caring. I’ve been lucky to have many great people help take care of me over the years. It’s the environment where people can get the help they need that bothers me. Riffe stated 40 percent of nursing home residents in Jamestown return home, but what about the 60 percent that never do? Kind of a high number I would say.
Community-based care won’t flourish in this state until it is put on a level playing field with institutions. Recent Department of Human Services statistics report nursing homes get about 80 percent of all Medicaid funds while community-based programs have to scrape by on only 20 percent. The system must be rebalanced to be fair to all. Don’t be expecting the long-term care officials in this state to be parting with their funds anytime soon though.
It is our role as citizens to become educated on all the options. It is time to begin thinking of alternative ways people receive care. Nursing homes could provide care received within their buildings to the community in their homes. We must begin to dialogue ways that care can be received so elderly and disabled individuals have choices. The time is now to begin working together, and not against one another to do what is right for the citizens of this state.
In 1999, the U.S. Supreme Court issued the Olmstead decision. The Olmstead decision requires states to provide care and services to their citizens in the most integrated setting. States now must be held accountable in giving citizens needing care, a real choice where they can get help. In most cases, not only is home- and community-based services much cheaper than institutional care, but the quality of life is far better! The times have slowly changed but much more work remains. I will keep continuing the fight for myself and others that want out of the institutions in this state. Only when true alternatives exist to institutional care will our society really be free.
Mark B. (The Nodakwheeler)
Thursday, January 20, 2005
Chairman Delzer and members of the Human Resources Committee, my name is Mark Boatman. I live at the Central Dakota Village nursing home in Jamestown. I apologize for not being able to attend today, but I have very limited transportation options and it was not possible to make it to Bismarck today.
I am 29 years old and I have Duchene Muscular Dystrophy. I also use a ventilator full-time to breathe. In 1994, after graduating from high school, I moved into an assisted living apartment building in Jamestown. I received my care through the Aged and Disabled Medicaid waiver, the North Dakota waiver. I was able to get 24 hour care because our hours between the residents were pooled together so we could have an attendant help us 24 hours a day. This system worked very well for me. I was able to get help with all my activities of daily living like bathing, eating, feeding, dressing, the full range of care I needed. This worked well for nine years.
In late 2002, I started suffering from respiratory failure due to my disease. In February of 2003 I received a trach and a full-time ventilator because I could not breathe on my own anymore. After getting the trach and the vent, I was in a rehab hospital in Fargo for two months. After being in the hospital, I wanted to return to the community to live, but I was not able to because there was not sufficient resources through medical assistance that would allow me to do that. My only option was to go into a nursing home in my hometown which, as a 29 year old, was not something that was at all attractive in my life. I was in the nursing home for the first six months, my health dramatically improved since going on the ventilator and my health stabilized and has been stable ever since.
After about six months in the nursing home, I wanted to pursue getting care through home and community based services but I was not allowed to have the full range of help I would need, especially in the areas of taking care of my trach and ventilator. I am currently fighting to live in the community, but like I said, the waivers right now are not enough. There needs to be exceptions made for people that need higher levels of care. To live in the community, I would require a 24 hour attendant, it would not have to be a nurse, it could be an attendant. I would train a staff of people with the assistance of respiratory therapists and nurses that would be able to attest that these people could take care of ventilator and trach issues that would arise. After the staff is trained, I would be able to manage my staff and to pay them through medical assistance funds.
Until this can happen, I will be stuck in a nursing home where I do not want to be, and the cost of care in the community will be about the same as what it costs now; or it could even be a little cheaper. I strongly urge this committee to find ways for people that don’t fit under the traditional waiver system to get care. I just need an allowance made in my case where I can have a staff and pay them, and I could have nursing supervision on an as-needed basis and be able to live in the community and have a much higher quality of life. The freedom to eat what I want, get up when I want, go to bed when I want, just live like an able bodied person does. I also would be able to contribute to the community where I live much more. Again I thank you for this opportunity to speak in front of your committee and I hope that changes can be made so all North Dakotans with disabilities can live where they want. Thank you again. Have a good day.
Saturday, January 08, 2005
2005 has started quickly for me. This week I helped draft a consumer controlled choice bill for introduction to the North Dakota legislature.
This bill will allow people with disabilities to hire, train, and pay their own attendants to do the things that need to be done for daily living. This will give choice to folks that for years have had little choice in running their lives.
Nursing homes and other institutions are not the answer for people that are very capable of living independently. With properly trained attendants, many folks could live in freedom and have a better quality of life. Living outside of an institution is much cheaper in most cases too.
I'll be giving all I can in the next several weeks to change the way the system is structured in my state. We must rid our society of the walls that keep people from the freedom they rightfully deserve.
The time for change is now!