Ventilator-Assisted Living©

Fall 2004, Vol. 18, No. 3

(continued)

From independent living to a nursing home ... and back?

Mark Boatman, Jamestown, North Dakota

Photo of Mark BoatmanIn February 2003, I faced a decision that changed my life. I was in respiratory distress due to Duchenne muscular dystrophy, and I decided to get a tracheostomy and use a ventilator fulltime. Although the decision was a good one, it also came with new challenges.

At the age of 19 in 1994, I moved into my own apartment where I received 24-hour personal attendant care services. My attendants helped me with my personal care, including dressing, transfers with a Hoyer lift, eating and toileting. They also assisted me with cooking, grocery shopping, housekeeping and laundry. This was made possible by a home and community-based Medicaid waiver through the North Dakota Department of Human Services.

In 2000, I started experiencing morning headaches and was lethargic during the day. My physician prescribed bilevel ventilation (BiPAP® S/T with a nasal mask) to use at night. I slept better and had more day-time energy. Gradually I increased use of the BiPAP also during the day. I was aware that bilevel ventilation would only work for a few years and that eventually I would need 24-hour ventilation via a tracheostomy.

I was happy to live independently for nine years, and my attendant care arrangement worked well. In choosing a tracheostomy, I realized that I might lose my freedom and the independent lifestyle I valued so highly.

After getting the trach and ventilator, I went to a rehabilitation facility to recover and adjust to the changes in my life. But when it came time for discharge, I faced a difficult barrier: finding a place to live. There were no programs in the community that would allow me to live in my own home as a ventilator user with a tracheostomy. In North Dakota, only nurses can provide tracheostomy and ventilator care, and the Medicaid waiver could not provide the amount of nursing hours I would need to live in the community.

The only housing option was a nursing home. There are two nursing homes in my hometown of Jamestown. One nursing home denied me admission because of the ventilator. Fortunately, the other nursing home accepted me because they had had experience with other residents who used ventilators. It was a victory for me to return to my hometown, however it was not the living arrangement that I preferred.

When I moved into the nursing home in March 2003, I adapted to life as best as I could. I became more comfortable with my ventilator and my new surroundings. Over the next several months I learned everything I could about my ventilator. My health improved; life stabilized. Last fall I decided to leave the nursing home and move back into an apartment in the community.

The battle to leave the nursing home has been very challenging. The Freedom Resource Center for Independent Living (CIL) and North Dakota Protection and Advocacy are assisting me. The Freedom CIL helped me file a civil rights complaint against the North Dakota Department of Human Services for not providing my care in "the most integrated setting" as mandated by the 1999 Supreme Court "Olmstead" decision. I am awaiting a decision on the complaint from the US Department of Justice.

I continue to advocate in any way I can for home- and community-based care on both the state and federal levels. Proposed legislation in the form of MiCASSA (www.adapt.org) and the Money Follows the Person initiative (www.cms.hhs.gov/states/letters/smd081704.pdf) would greatly reduce the current Medicaid bias toward institutional care. My website (www.geocities.com/nodakwheeler) links to other resources advocating for living independently and not in an institution.

Only when more money is put into home- and community-based programs will all people with disabilities really have a choice of where they want to live. Our elected officials need to know that the current system is not working and that changes must be made.

Respiratory care and Duchenne muscular dystrophy

The American Thoracic Society recently published "Respiratory Care of the Patient with Duchenne Muscular Dystrophy, ATS Consensus Statement" in its American Journal of Respiratory and Critical Care Medicine, August 15, 2004, 170, 456-465. The statement is available online: American Thoracic Society and The Parent Project for Muscular Dystrophy. Jonathan Finder, MD, Children's Hospital of Pittsburgh, University of Pittsburgh, chaired the ATS consensus committee that drafted the statement.

Back to Contents of this issue of Ventilator-Assisted Living

Back to top