New Horizons Newsletter (Web Version) Spring 1995

New Horizons is a nonprofit newsletter published three times a year by and for ventilator users, their families and those that care for them. Articles and comments are welcome. New Horizons is not and has never been associated with any other newsletter, product, or company.

FROM THE PRESIDENT'S DESK

The national Medicaid program spends about 145 million a year for home care services, and 34 billion a year for nursing home care. This is no coincidence. Your government would rather see you in A home rather than YOUR home. Medicaid law says that home care services are optional at the discretion of each state.

Nursing home services, however, are required and anyone who resides in a nursing home is automatically eligible for Medicaid. Tell your legislators that you would rather the government have a bias toward keeping you at home, where you have your family and your freedom. This issue is an especially crucial one for those of us who are vent users. We do not and should not have to accept a lower level of care or give up our freedom which is a constitutional right for every American.

There are approximately 15,000 vent users at home in the United States. We are a growing segment of society that continues to seek alternative home care solutions rather than institutional care. Across the country and in Canada some of these solutions are being met. In Vancuver, Canada Creekview 202, custom-built apartment suites for ventilator dependent adults were implemented. Each apartment has a balcony, wheel-in shower with hydraulic lift, specially equipped kitchens with wheelchair height appliances and counter tops. An attendant is hired by the residents for cooking, cleaning and personal chores. A registered nurse is also available for 2 hours each day. Abby Road Hosing Co-op is a not for profit housing co-operative that has 23 of 50 units adapted for physically disabled. The entire building is accessible as it was designed that way. Since it is a co-op, the entire building is run by the occupants. The co-op, which is located in Edmonton, Alberta, Canada, has a support services program administered by the users that provides home care to the adapted units. The program is funded by the province (Alberta) and allows people who might be stuck in some institution the ability to lead independent lives. Housing Co-operatives in Canada consist of a building built from the ground up financed with a 0% down payment mortgage with a federal institution (Canadian) guaranteeing the mortgage. One of the conditions of the building is that there be some rent geared to income subsidies administered by the members of the housing co-op for other members of the co-op. This provides an interesting blend of incomes, abilities and disabilities working collectively in affordable housing.

In New York a special apartment project is being considered to develop a building (about 10 apartments) that would be specially designed for people who require ventilators. Future prospective plans includes 2 apartments for live-in personal care aides who could support the needs of the tenants who require ventilator and/or other personal care services. Group homes also offer alternative home care. In Oregon a group home that is staffed by attendants provides care for vent dependent persons. The home has 2 caregivers present at all times who are well suited and trained to work efficiently with a vent dependent person. In Chatsworth, California New Start Homes was implemented more than a decade ago. These unique ranch style homes offer the catastrophically disabled an opportunity to improve the quality of their lives and live independently in the community. Each private home offers full-time care that is RN supervised. Residents and staff share the daily responsibilities for managing their home. Each resident is encouraged to pursue work or school activities and involvement in the community. Transportation is provided by New Start Homes to offer each resident the opportunity to reach his or her full potential.

I would appreciate comments, suggestions, or wish lists from my readers concerning what their ideal living situation would be.

TID BITS...

A wheelchair-using student at the University of Wisconsin encountered a lecture hall where her chair wouldn't fit under the desk tables. The School ignored her plea for help and instead had her sit at the front of the room... BEHIND the lecturer! The student came up with her own solution; she sawed out a chunk of the table so she could use it. Way to go! A computer recycling program has been started in Reno, Nevada by the NCEP Assistive Technology Center. They are getting used and surplus computers and putting them in working condition. The systems are then given to individuals who needs a computer and who qualify for the program. If you have an old computer, call them. If you need a computer, call them. Mick Shatswell (702) 359-3011.

The percentage of people with disabilities who have a high school diploma was 60% in 1986. It is now up to 75%.

RESPIRATORY TIPS...

Rubber bands attached to the side slits on the neck plate of your trache will prevent your swivel adaptor from popping off your trache. Simply cross the rubber bands (right over left, left over right) over your trache swivel. A great idea! Red rubber suction catheters are much more comfortable to use than stiff, thin plastic ones. Less trache irritation will occur from a rubber catheter and it is more soft and flexible than plastic. For more information contact your medical supplier.

A HELPFUL HINT FOR USING A BACKUP BATTERY

by William J. Howaniec

Since I have someone in my home who is ventilator dependent, safety issues are an important concern. One of these issues concerns what to do in case of a power failure. For many years I utilized a large 12 volt, 80 amp deep cycle battery plugged into the ventilator as a backup power source during a power failure. Although the battery was plugged in to the ventilator and used only for emergencies, it was constantly being drained and required frequent recharging and keeping up the water level.

The life span of the battery was about 12 months, not very economical for such an expensive battery. I have now found a much easier and more economical battery to use. I now use a small deep cycle 12 volt, 40 amp battery as a backup. I keep it on the floor near the ventilator with the battery cable attached to it but not plugged into the vent until it is needed. This method causes much less draining of the battery and extends the life of the battery. I use the battery about every three months and run it down completely. This procedure takes about 14-15 hours of battery use. The battery is then recharged by a battery charger. This procedure is repeated every 3 months and is a simpler solution to having a backup battery than my previous way. I now have 2 12 volt deep cycle batteries on hand on all times which gives me approximately 30 hours of backup power. Since all batteries have a memory, it is important to use them, run then down, and recharge them so they can be utilized to full capacity. This will preserve the life of your battery and give you reliable service for a longer period of time.

AccessHope - Affecting Positive Change

AccessHope is not associated with MDA but is a non-profit service of information as well as a forum for discussion concerning the problems with MDA and how to affect positive change. AccessHope does not seek to attack, does not seek ill will against Jerry Lewis or MDA. AccessHope seeks to create dialogue between adults with neuro-muscular diseases and the Muscular Dystrophy Association.

AccessHope also provides information on the latest research news, various treatment information and even on alternative financial resources available. AccessHope welcomes and encourages your input. Send e-mail to AccessHope@aol.com or write me via snail mail:

James Heida, Jr.

c\o AccessHope
16201 21 Mile Road
Tustin, Michigan 49688
Phone: 616/829/3875
Hours: 11am - 7pm Eastern

The following letter was written by James Heida Jr. March 16, 1995.

AccessHope is looking to compile information concerning respiratory problems and/or treatments and therapies. The more I become aware of people with breathing difficulties, the more I'm amazed at the total ignorance within the health care profession. In this day of technological and medical advances, I believe that none needs to suffer with breathing problems anymore. There are many people who feel that they would rather be dead than to have to rely on a respirator/ventilator. I used to think that as well. I naturally assumed that life would end once I was hooked to one, which is why I tried to escape the painful realization that I would eventually be on one. In December it will be 10 years that If have been on a vent and here is the reality of my life. When I first came home on a vent, I was told that I would be extremely susceptible to infection because of the trache. I became a recluse in my own home. Ten years later I am attending college seeking a degree in business management. I take the vent with me where it sits under my chair along side an 8 hour battery. Respirators/ventilators are quite compact. Imagine a portable TV. It is reasonably light, it even has a handle. People don't even notice that I have a trache. I have promoted various activities in the community. I eat in restaurants, I have an occasional beer at local taverns, and I go to rock concerts. All with a PCA and my vent. I am also a musician and singer.

Respirators/ventilators are not the only aids either. Bi-Paps and certain drugs assist in breathing as well. The point is that we've come a long way from the old iron lungs of yesterday to the modern state of the art wave of the future. By the way, I can't remember the last time I had a cold, which lasted less than 3 days. Why? Because the vent helps me cough phlegm out and what can't be coughed up is removed by a simple procedure called suctioning which is relatively painless. It makes me cough occasionally. What I need is information. I am asking health care professionals who work in the field to help me inform others of what's available. I, and AccessHope will then pass that information on to whomever needs it. Much appreciation, Jaminator. (AccessHope)

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New Horizons Spring 1995

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Last Modified: Wednesday, 09-May-2012 18:52:26 PDT