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
As we go to press, President Clinton and the Contract with American Congress are narrowing the gap between their budgets, Medicaid, Medicare, welfare, food stamps, and SSI for children take deep cuts from any version of the budget.
We wish that our government-both federal and state-would take time off from their rich-get-richer show to listen to this: they could save at least one quarter of America's long-term care budget by putting community first, by letting us stay in our own homes instead of nursing homes and other institutions.
There is a continuing and unfair practice throughout the United States and especially here in Nevada called "warehousing". Today 2.4 million Americans are locked away in nursing "homes" state "schools" and county "hospitals," veterans' "homes" and long term-term "mental hospitals" - for the crime of being disabled. ADAPT (Americans with Disabilities for Attendant Programs Today) is demanding that the federal government divert 25% of long-term care Medicaid dollars to home and community-based services. I keep meeting people who know someone who would be less of a burden on taxpayers if he or she lived in handicaptivity. Ridiculous! We cannot allow Congress to forget what average means. In states around the nation, something called capitation is going on. In Wisconsin, for example, the amount which can be spent for in-home services is capped individually- at 80% of the amount which would be spent on that person in a nursing home. Unlike any other Americans, our freedom is measured in dollar bills.
Congress and the states are losing site of the fact that if everyone in nursing homes and state lockups were allowed to choose freedom, government would save 50% of the $160 billion taxpayer dollars spent for long term care. Please remember. When you present your plans to elected officials, make sure they understand: the numbers you choose are averages.
Those of us who are vent users and require total care, are often reminded that far to many independent living programs are not available to us to meet our needs. Just the other day I was introduced to a respiratory therapist who related to me that he had formerly worked in a nursing home here in Nevada. Having visited this nursing home myself a few years back I was familiar with the residents on the ventilator unit. During the course of our conversation, I learned of a 15 year old girl who is a vent user at night, who is now a resident of this nursing home. I came away from the conversation feeling a great sense of disgust. Why has this 15 year old child been forced into a nursing home? Does Nevada provide no other alternative? Has her family been taught to care for her needs or are they merely unwilling? A ventilator is technology at its best designed to give us life and to help us set and achieve future goals. It is really a prosthetic device that keeps up breathing when we cannot do so on our own, just as an artificial arm or leg helps us to be mobile. Granted the care needs are much greater when a ventilator is required, but with proper training most individuals can learn how to operate and maintain a vent. On a similar note, I have received many letters from individuals who are seeking answers to alternative care.
Here are some excerpts from letters I have received.
Elizabeth W. writes: I am getting a second degree in nursing at UVa. I'm presently doing three research projects for my classes on ventilator dependent individuals living in the home. I'm interested in identifying the services available to them. For my second project, I want to develop a plan for making it more possible for vent users to live in the home rather than in nursing homes and how I would market this to the home health agency at UVa and the US government. I would like information pertaining to independent living programs. I am really interested in these issues and hope to continue my research after I graduate from nursing school. I developed an interest in this area while working with vent dependent patients in a medical intensive care unit and a step down unit to wean vent patients. I was really upset that one of our spinal cord injury patients was going to end up in a nursing home because he is uninsured. It really made me angry. There has to be a better answer.
Michael from Western North Carolina writes: My mother is in a small hospital and is now dependent on a ventilator. We're looking at various options to get her out of the I.C.U. unit there since efforts to wean her have failed and her doctor seems content to leave her there. Any resources or referrals for information would be appreciated.
Kelly from Oklahoma writes: My father has been on a vent for 11 years. I'm trying to find out all the information about getting some kind of care for my dad. The state is currently providing care workers but they don't always show up and he sometimes has to sit for several hours without the care he needs. We need some help at this point. Any information on independent living programs or other solutions?
Lindy from Nebraska writes: I'm a marriage and family therapist who works in a physical rehabilitation hospital and I have been working with residents in the ventilator assist area for 4 years. Currently, healthcare changes has resulted in a lot of anxiety and worry within this population and with their family members. Do you know if there are any Internet connections to other ventilator dependent individuals? Hopefully, many people in our area will be able to go on-line and expand their world.
Remember. it is our constitutional right to choose and chart the course of our own lives. We as vent users must band together and support programs like ADAPT and push for more home and community based programs.
Choose your own destination. Don't have it chosen for you.
Paula M. Howaniec
January 9, 1996
We were saddened to learn that Elaine Abel had passed away earlier this year. Elaine was a personal friend who had contributed articles to New Horizons and was always willing to help in anyway she could. Elaine was an inventor and had devised and patented several respiratory products that enhanced the lives of many trach-vent users. Our feature article about Elaine, A Woman of Courage, was featured in our Winter 96 issue. She will be sadly missed. Our condolences go out to her family.
THE VIEW FROM MY CHAIR
I absolutely hate the feeling of being patronized that I get when I stop to draw a breath after speaking half a sentence. The other person will say "what" and then I start over again. When that happens I feel certain they weren't expecting to listen in the first place. And I'm most certain when they say that again, as I'm drawing a breath, having stopped most likely in another part of my sentence. And it's worse when they just walk away. It's impossible to imagine how many other people there are, whose speech is worse than mine, where much of their lives the majority of people just didn't take the time to try understanding.
One of the most frequently used phrases when people greet me and others seems to be "hi there!." Perhaps I'm being overly sensitive about it but somehow I want to respond "woof woof." I feel as though that is a phrase I'd use to great a dog or cat whose name I didn't know. When I greet people whose name I can't remember, or maybe never knew, I still don't use the term "there." I've greeted people whose name I know perfectly well, without using their name but not with "there." People who know my name and see me everyday will use "there," Somehow that seems to be asking me to bend down with tail wagging, for a good ear scratching. Not that there are times I'd need my head scratched, mind you but then I'd probably ask an aide to do it.
It could be too that this is simply a Midwest, or Minnesota, or current expression that I'm misjudging to be a term of demeaning content, simply because I'm obviously disabled. Maybe people say "hi there" to President Clinton.
Then, of course, there are other words, or phrases or mannerisms of speaking, that bother me as much as the word "ain't." When I was in grade school ain't was simply not to be used. When I hear someone around here say "I ain't got no-", it seems to grate on my nerves. Of course this has nothing to do with being disabled, or being patronized but it's just interesting. I hope this isn't a sign of aging, thinking back to when I was young. "Back in my day, etc." Maybe I'll babble on about odd expressions another time.
All wheelchair users need more space when going thru doorways at home. Now you can add 2 inches to any doorway.
Replace existing hinges on your doors with Duromatic Door Hinges, using the existing screws and holes. For one door it takes less than 15 minutes. Save the old hinges for future use if you need to move so that you may replace them and take the Duromatic Hinges with you.
To Order call toll free
Fax: 1-800-566-6678 or write to:
P.O. Box 515
Colchester, CT 06415-0515
Red Rock Canyon located 20 miles West of Las Vegas, Nevada, now has greater wheelchair access. The visitor center has several wheelchair accessible picnic tables plus an accessible restroom nearby. There is also a wheelchair accessible trail located at Willow Springs, a paved picnic area with table and an a large accessible restroom available. Great fun among one of natures most beautiful areas. Check it out. For more information call: (702) 363-1921.
PC Info and Internet Access
Jim Lubin has started a vent-users mailing list. To subscribe send a message to: firstname.lastname@example.org. Leave the subject blank. In the body type: subscribe vent-users Your Name.
Opening Windows is a talking and tactile tutorial for Microsoft Windows 3.1 and is available from the American Printing House for the Blind for $49.95. It was developed especially for people who are visually impaired or blind. If you would like more information, call APH at 800-572-0844.
National MS Society Online
The Society has just launched a "home page" on the WWW. It's URL is: http://www.nmss.org
Internet Public Library is available through the University of Michigan School of Library and Information Studies. Opening page options include: Reference, Reading Room, Youth, Classroom, and Exhibit Hall. It is available in both graphical and text-only versions. the URL is: http://ipi.sils.umich.edu.
Consumer Information Center Publications are available at URL: http://www.gas.gov/staff/pa/cic/cic.htm. Information can be downloaded in .zip or .txt format.
Government Printing Office documents are available in ASCII text at URL: http://www.access.gpo.gov/su_docs
The following article is an excerpt from a letter that was sent to New Horizons by David Hornick on May 26, 1995. Permission to reprint the letter was given by David Hornick at that time.
Does the ADA Go Far Enough?
by David Hornick, M.D.
Now that we have an American with Disabilities Act to assure that our streets, buildings, and work places are modified to permit participation in living by people with disabilities, it is imperative that we begin to scrutinize the invisible barriers to inclusion.
For example -
A friend of mine is a 32 year old attorney who became quadriplegic as the result of a skiing accident at the age of 18. Despite his functional limitations, he attended Cornell University and SUNY Buffalo Law School. He has held several responsible positions since graduating from law school, including staff attorney for the New York State Department of energy. Recently, he was told that the cost of paying a driver to transport him to work would no longer be covered by the special Medicaid program for which he qualifies.
Similar problems confront Paula Howaniec who is provided with a licensed nurse to assist her with her needs. She is allowed to receive this assistance only under conditions arbitrarily set by the department of social services. For example, although her nurse can assist her with meals at home, she is prohibited from accompanying her to a restaurant or a picnic in the park to perform the same duties. Access to socialization and simple every day enjoyments appear not to be guaranteed under ADA.
It is quite one thing to make society physically accessible. It is quite another to remove social and financial barriers to leading a fuller life. It is almost as though someone told you you were entitled to eyeglasses to correct your vision but prohibited you from visiting the optician to have them made.
Does the ADA go far enough? I think not. Is society willing to pay the economic cost of going the extra mile to empower people with disabilities to enjoy their lives? Is the economic cost actually greater to enable someone to be driven to work to earn a living and pay taxes as compared to sitting passively at home? What are the barriers to change? How do we move forward and build upon progress represented by the ADA?
Life facilitation should be the goal of a new ADA. As a society, we must begin to introduce universal design into houses, apartments and public places. Universal design would provide people with disabilities the same access enjoyed by the rest of society. Inclusion. That's the goal. If we do not continue to address and solve these problems, how do we propose to care for the 50,000,000 elderly who will impact our society in 25 short years? Not only will there be more elderly persons, but they will live longer. The fastest growing group of elderly is the "old age" (over age 86). Studies have demonstrated that up to 40% of people in this age group have significant problems with their activities of daily living. Unless functional problems can be addressed by environmental design, social programs and other technologies, significant amounts of personal care will have to be provided to these people. Will they be able to rely on nursing home care at a current cost in excess of $50,000 per person per year? Is it reasonable to provide a personal care aide to cook for someone because they can no longer reach their stovetop because of their inability to stand?
Last year New York State accounted for over 70% of the national Medicaid expenditure for personal care aide services. One of the reasons (but not the only one) for this statistic is the use of Medicaid to pay for services varies from state to state. Some states, I suspect, offer little or no personal care benefit. The trend toward Federal Block Grants to states will intensify the disparities. It is important that we look at this issue from both the federal and state perspectives. Discover which states are most liberal and which are most restrictive. Attempt to develop an understanding of what drives these disparities. These are issues we must expand upon, as these are the barriers that confront ALL people with disabilities EVERYday.
Presidents note: The above letter written by David Hornick MD, focuses on the issue of disabled individuals who are receiving home care services funded through Medicaid. ie: PCA's , or licsensed nurses RN's, LPN's, working privately in the home caring for disabled individuals. Many of us who are receiving state services are not allowed to go out with our caregivers for recreational purposes. In the state of Nevada the Department of Social Services restricts disabled clients from going out with there caregivers for recratioal outings. We are allowed to venture out with our caregivers only for medical appointments or other medically necessary needs. Under Medicaid services, I was told that the care must be restricted to the home only and that it is actually a Federal law. In the past year I have learned of other individuals who are receiving state Medicaid services who are NOT restricted from venturing out with their caregivers. This disparity is one that cannot be ignored. It is grossly unfair to restrict anyone from leading as full and independent a life as they can. In fact, it may be unequal treatment from state to state, thus illegal under the Federal ADA.
TITLE II PUBLIC SERVICES 42 USC 12131.
Subtitle A Prohibition Against Discrimination and Other Generally Applicable Provisions
SEC. 201. DEFINITION. 42 USC. 12115.
As used in this title:
(1) Public entity. The term public entity means
(A) any State or local government;
(B) any department, agency, special purpose
district, or other instrumentality of a
State or States or local government;
(C) the National Railroad Passenger Corporation,
and any commuter authority (as defined in section
103 (8) of the Rail Passenger Service Act).
(2) Qualified individual with a disability. The term qualified
individual with a disability means an individual with a
disability who, with or without resonable modifications to
rules, policies, or practices, the removal of architectural,
communication, or transportation barriers, or the provision of
auxiliary aids and services, meets the essential eligibility
requirements for the receipt of services or the participation
in programs or activities provided by a public entity.
SEC. 202. DISCRIMINATION. 42 USC 12132.
Subject to the provisions of this title, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, program, or activities of a public entity, or be subjected to discrimination by any such entity.
If you are receiving state Medicaid services and are restricted from going out with your caregiver and feel you are being discriminated against, or if you merely have some input on the subject, please feel free to write to me at: PaulaMH@prodigy.com
PLEASE NOTE: There will be no summer issue of New Horizons
Coming in our next issue.....
Ventilatory Care in Patients with SCI
Lee Swenson's Tips for Caregivers
NEW HORIZONS STAFF
Copyright 1996 Paula M. Howaniec