New Horizons Newsletter (Web Version) Winter 1996

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

It was good news for disabled Nevadans last September when it was announced that a 24-unit specially designed apartment complex for the disabled will be constructed in Las Vegas. The $1.6 million Carol Haynes Apartments will provide round-the-clock care for people with disabilities. It's the first of four such developments planned for the state one of the few of it's kind in the country.

Spurred by a life-altering event, Carol Haynes was the key to bringing the concept to life. In 1983 at the age of 16, her son Michael, was in an accident which left him in a coma for one month. Michael suffered from traumatic brain injury and his prognosis was that he would die or remain a vegetable. Carol desperately sought the rehabilitation care her son needed but no affordable alternatives were available in the state of Nevada. Reluctantly Michael was sent to a rehabilitation program in California to help him gain back the everyday activities of daily living. It was at this time that Carol banded together with other parents of brain injured and began her long campaign to fight for better care services in the state of Nevada. The study was presented to the Legislature, which in 1991 passed a bill that provided for Nevada's first community-based day treatment residential center. The idea was to develop a program using private funds as well as general revenue funds such as Medicaid.

For services, the state contracted with a non-profit Minnesota-based company called Accessible Space Inc., which opened the Nevada Community Enrichment Program in Las Vegas in 1992 and in Reno, Nevada in 1994.

The program provides rehab and therapy for head injury survivors.

Michael was one of the first local clients. And in 1993, he became a resident of one of its eight apartments where he received 24-hour-day care in an intensive-treatment setting to learn how to be more independent.

As Chairwoman of the housing subcommittee of the Governor's Council on Developmental Disabilities, a state and federally supported advisory board, Carol Haynes lobbied for something between an institution and a completely independent apartment.

In 1991, the council begun investing a portion of its budget every year for assisted housing for low-income Nevadans with severe disabilities. The state Rehabilitation Division also invited ASI, the parent company to the Community Enrichment Program, into Nevada.

Starting with the council's $250,000 seed money, ASI generated more than $6 million in U.S. Department of Housing and Urban Development grants for construction and $6 million in rent subsides for 94 apartment units in Reno, Carson City, and Las Vegas, Nevada.

ASI has created independent housing for adults with disabilities in Minnesota, Montana and North Dakota.

The apartments will be available to people with ALL types of disabilities. Living in private one-and-two bedroom apartments, residents will share case management support and 24-hour-a-day personal care delivered by about 30 staff members. While the apartments will have the comfort of home, they will have features that make them ideal for people with mobility impairment or brain injury.

The complex will be "100 percent accessible" said Stephen Vander Schaaf, president of ASI. Sidewalks will have few impediments, and automatic doors will swing open at a touch. Living areas will be large with plenty of wheelchair turning space, while kitchens will have wheel-under counters and low cabinets. And tiled bathrooms will be equipped with roll-in showers with individually positioned grab bars, lowered light switches and appliances.

The Carol Haynes apartments are slated to open in June 1996. A second 24-unit apartment building in Las Vegas has been funded, and grants for a third are pending. To qualify tenants must be disabled and low-income. A $1.5 million subsidization fund will allow tenants to pay rent equal to a third of their income after medical bills.

It is not yet clear if vent users will be able to utilize the Carol Haynes apartments as Nevada state law requires that only a skilled nurse can care for a vent dependent person. There are bills being submitted to the Nevada legislature to abolish this law and we at New Horizons are urging every vent dependent person to write to your legislators and voice your opinion in other states as well and push for specialized housing with 24-hour attendant care. As we have stressed before, it is your life and you must fight for your rights. Through shared services, costly and unnecessary medical care can be avoided. The cost of this kind of care has proven 25 per cent less than institutional or nursing home care. It would otherwise cost the state about $31,000 in Medicaid funds to keep one person in an institution. For a vent dependent person the cost is much higher.. Minnesota, for example, has saved $8 million compared to comparable institutional care.

For more information on the Carol Haynes apartments, call Bob Hogan at the Nevada Community Enrichment Program, (702) 259-1093.

Paula M. Howaniec


New Horizons would like to acknowledge Rolf Kissel and Jan Schrage For giving us space on the German computer ViKaR. For those of you who have computers with telnet capabilities, you can reach the ViKaR by typing in 131.246.89.7 port 9999. There are three rooms. Main, New Horizons and brace. All rooms have bulletin boards and other items.


The following story is an excerpt from the book Discard your Disability Doldrums. By Kelly Jones Bauer. A release to reprint the article was given to New Horizons by Elaine Abel.
A WOMAN OF COURAGE A Case of Severe Lung Distress

You are about to become acquainted with Elaine, a person with an uncommon and very disabling condition. Elaine was involved in an accident about six years ago and, as a result went into a long-term coma. Since that time she has suffered from sleep apnea (the temporary cessation of breathing while one is sleeping). Consequently, she lives every hour of every day with a tracheotomy; in addition, she spends twelve out of every twenty-four hours connected to a ventilator. During her "off" time, a hose attaches her tracheotomy to an oxygen tank. In addition, she often runs high fevers from infection, and she suffers from other related disorders intermittently.

Elaine considers herself fortunate to have had her intellectual skills spared in the accident, and she celebrates that fact by putting her keen wits to good use. First she is a "whiz" at computers and uses the graphics in her work as an inventor of devices to improve the function of ventilators. She has obtained patents on some of her many designs, and one of them has been manufactured. Personally, I do not understand the drawings because of my ignorance of the subject. However, several people who are knowledgeable about ventilators and about patients' needs have examined her material and reported to me that they believe it has potential.

Earlier in this book you read about the importance of looking at the humorous side of your misfortune. Elaine has such a wonderful manner of comical referral to her deficiencies that being with her is to smile inside and out. After her you still feel happy. She's consistently cheerful and is often downright funny.

To my knowledge, Elaine's social life is limited to an occasional show or dinner out with friends. I know little about her personal history except that she is divorced and has a number of adult children scattered throughout the United States. She is my phone friend and helper, always managing to find the time and energy to "walk me through" whatever computer mess I find myself in at any given moment. Whenever I'm in trouble beyond my knowledge, I use the speakerphone next to my computer to call her, and she gets me straightened out in short order. I would be in big trouble without Elaine. She has been able to give me a solution for just about everything that has come awry, except for the voice component that I use for all my work; that feature is best understood by specialists. However, at her insistence, she is using what time she can to study my manuals so that she soon will have that mastered, and I am astounded when I stop to think that she's doing all this just to help me. Elaine is quite a woman!

Can you imagine what Elaine's existence might be like if she had not developed the drive and determination to do something useful and interesting with her life? She very easily could be a total invalid. How she became involved in the things that she does, I don't know, but it surely wasn't through lying around and feeling sorry for herself. I couldn't think of a better example of making the most of what one has, even when it is comparatively little. Compare yourself to Elaine. What do you have that she does not? Are you doing as much with what you have as she is? Remember, because of her many hours on the ventilator, Elaine has only half the free time enjoyed by the average person. A home health aide visits her one hour each day for hygienic and medical care; beyond that, she does everything for herself, as well as a great deal for others.

I hope Elaine's story will inspire you. She has encouraged me greatly. though I can't walk and I have pain, I can breathe on my own, and that's a truly major asset. There always are some pluses. Think about yours! What can you do with them?

For information on Elaine's products, write to her at:

Elaine Abel
168 Grand Avenue
Oroville, California 95966


New Horizons is happy to have Lee Swenson with us as a columnist. Lee has ALS and has been ventilator dependent for many years. We hope Lee's writings will not only educate you but inspire you as well. The View From My Chair by Lee Swenson

SPEECH USING A VENTILATOR

No doubt the best piece of assistive technology use has more to do with good fortune than real planning. This is the ability to speak using a ventilator, about 6 months after becoming dependent upon one for full breath. As seems normal for most people using a ventilator, I was given a plastic tracheostomy tube with an inflatable cuff (balloon) at the bottom. When this cuff is inflated, it fills the trachea cutting off air from going up the larynx, rendering one speechless. Needless to say, this is very frustrating.

Over the next 5 months, knowing I didn't really need the vent on full time, I'd have the vent taken off, the cuff deflated, and a plastic speech valve cap put on the open end of the trach tube. The valve cap allowed air to be inhaled but prevented it from going out on exhalation, thus forcing it out past the deflated cuff, allowing me to speak. I could only do this in bed while someone was with me, as the nursing home staff could not respond quickly to my call light if I became distressed for air.

It was during some of the change overs from speech valve to vent and with the cuff not fully inflated, that I found I could speak with the vent on. The less inflation of the cuff, the better I could speak. In fact, with the vent on I had more air to speak with more volume.

My two ventilators (1 mounted on the wheelchair and 1 at my bedside) are LP10 brand, with one setting called "Assist/control". This will give a specified number of breaths per minute (8) if I don't try for a breath myself. But it will also give me a breath each time I start to breathe myself.

Now I use a stainless steel trach tube, with no cuff, in bed and in my chair, with the vent helping me to speak. As best as I can describe it, I use the exhalation phase to force the air out to speak letting the vent help me inhale as much air and as often as I need to speak.


FOR COMPUTER BUFFS

For those of you who have computers and access to the Internet, the following is a listing of disability sites of interest.


PUBLICATIONS

The Disability Bookshop Catalog is a shop-by-mail bookstore offering hard to find titles covering a wide range of health and other topics of interest to the general public and persons with disabilities. The catalog costs $4, and you can get it by calling 360-649-2462.

Mouth: the Voice of Disability Rights is published every two months and must reading for anyone who considers themself a disability activist. This down to earth tell it like it is magazine is hard hitting and insightful journalism not available through any other media. An annual subscription costs between $1 and $48, depending on your ability to pay. Write Mouth at 61 Brighton Street, Rochester, NY 14607 for more info.

"Assistive Technology for Students with Disabilities: Rights Under Federal Law" is an outline that provides a brief description, with legal citation, of assistive technology rights under IDEA, the Rehab Act, and the ADA. The publication costs $2.50, call the center for law and education 617-371-1166.


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 comments are welcome. New Horizons is not and has never been assiciated with ant other newsletter, product, or company.

SUBSCRIBE NOW

We hope that you enjoyed reading this issue of New Horizons. If you wish to receive future issues, please let us know. Our Internet address at: nsnb39a@prodigy.com

NEW HORIZONS STAFF

Paula M. Howaniec President\Founder
Paula M. Howaniec Writer\editor
Lee Swenson Articles
Jim Lubin Web Edition

Copyright 1996 Paula M. Howaniec


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