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.
Tuesday, July 26, 2005
ADA 15 Years Later
Thursday, July 07, 2005
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
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
Friday, May 13, 2005
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
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
Friday, April 01, 2005
Sad times
Yesterday I was saddened by the news that our government and legal system had finally succeeded in starving and killing an innocent woman with a disability. My heart broke for Terri Schiavo's family as her life was taken from them by her uncaring husband.
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!
Peace
The Nodakwheeer
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!
Peace
The Nodakwheeer
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