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)

ADA 15 Years Later

Me and my bud Lori, originally uploaded by nodakwheeler.

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

Mark Boatman

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.

Finally a post!

It has been a long time since I've posted and I apologize for that. It's been a busy summer with some good things happening and a some sadness mixed in. In June my grandpa passed away so things have been busy with that and with visiting family. It's hard to believe sometimes that someone we love so much is gone. I guess we have to press on with our lives and remember the special times we spent with our loved one.

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.

Take care,

The Nodakwheeler

Northern Plains Vent Support Network

Mother Nature has been playing some tricks on the upper Midwest this week. The return of wintry weather has been a reminder that North Dakota weather is truly unpredictable. Oh well, I’m sure Spring will return very shortly. Sorry there hasn't been a post in awhile but things have kept me busy.

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.

The Nodakwheeler