Thursday, January 20, 2005

Legislative Testimony

Today there is a legislative hearing dealing with Medicaid at the state capitol in Bismarck. I would like to share the words I submitted to this important committee on the need for freedom for all folks with disabilities. Have a good day.

The Nodakwheeler

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

Happy New Year!

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!

The Nodakwheeler