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.
As a young child growing up with a physical disability, how well I remember my first encounter with attitudinal barriers. I was in the third grade and like all children looked forward to lunch and recess periods. My school mates would run past me out the door and down the steps and into the lunch room or school yard. Try as I may to keep up with everyone, I usually ended up loosing my balance and falling down ending up with scraped knees in the process. My walking at that time was slow with a slight waddling gait and I could not run or play in the school yard with the others kids as they would get terribly impatient with me. So off to the sidelines I would stay playing jacks by myself joined occasionally by my friend Jeannie.
It was Jeannie who made the startling comment to me one bright sunny afternoon that because I was”crippled” I could not play in the school yard like the other kids. This was a shock to my ego for even at the ripe age of 8 I knew I had a physical problem but my concerns at that time took a back seat as I was more interested in just being a kid. School, playing, and Sunday school took precedence. My immediate reaction to my friend's comment was to blurt out “I'm NOT crippled.” Jeannie gave me a confused look of indifference and thus ended the conversation.
The following school year I eagerly looked forward to the first day of school. My excitement however, was short lived for a trip to the principals office with my mother that first day was to change my life dramatically. It was decided that because I had this muscle disease and was frequently falling down, the principal advised my mother that it would be best if I remained at home and had a tutor come and give me my school lessons. No mainstreaming then, no aide to assist me, no special accommodations, nothing. Thank goodness disabled children have greater opportunities now to reach their goals. Still we are not without discrimination. I recently heard of an 8 year boy who was kept in the back of the classroom because his teacher did not like to hear the sound of the boys ventilator.
Continued in next issue--
It's sometimes said in opera that it's not over till the large lady sings. Sometimes that's referred to as a “swansong”. Well, this isn't yet a swansong for a guy with some disabilities from ALS.
Except for quite frequent volunteer columns in the Owatonna PEOPLE'S PRESS, and many other exceptions, the closing of PEOPLE TO PEOPLE and the lack of accessible, affordable transportation had limited my activity in Owatonna.
With SEMCIL (Southeastern Minnesota Center for Independent Living) avoiding Steele County, now because of lack of support, my options were further limited there. This lack of opportunity is the primary reason for my moving to the Metro area, to say nothing about the opportunity here to break free of the restrictive nursing home enviorment of incarceration, built around an attitude of waiting for death. (This is simply my opinion of "the system".)
I've just broken free from nine years of incarceration in a nursing home called Cedarview, in Owatonna, Mn., for the crime of being disabled. How I got stuck there is a long story in itself. How I broke free is a very long tale also. But right now I'm living in a fourplex apartment complex in St. Paul, called Capital Heights.
The care here is called shared care - shared living. This means for at least the day and evening shifts, for the eight of us men using ventilators living here, there are eight caregivers so if two are needed for a task like transferring, they are available to help each other. The caregivers are mostly RNs, LPNs, with just a few PCAs. The level of care and skill here is terrific by most standards, and fantastic compared to to the nursing home. A nurse goes with me to every medical appointment, and a caregiver is with us on every outing we want. I'm very happy and comfortable with this new life!
But it wasn't easy getting here. After 3 years trying unsuccessfully to find accessible, subsidized housing, and caregivers in the Owatonna area, I was still uniformed about the reality of getting what the law said I was entitiled to, as a person using a ventliator 24 hours a day; that is 24 hours of caregivers a day to match my ventilator usage. I even rented another apartment in St. Paul, thinking I only needed to find a caregiver agency. The reality was that none of them had staff on call or reserve, waiting to provide my care. Then the Minnesota Department of Human Services (DHS) had a directive to be “cost effective”. So for me, this meant they would only allow a daily care cap allowance equal to the amount of the per diem they paid Cedarview for my care, $121.15. This wasn't enough!
I immediately contacted my attorney, at the Minnesota Disability Law Center, who filed an appeal for me. This meant we had to have a hearing before a referee of DHS. This seemed at the outset, to me, to be rather one sided on the side of the DHS, but my attorney assured me that the referee we drew was very fair and understanding. The problem was that the first date available was November 7, 1996, in Owatonna; my turf! This was in early October when we filed the appeal, and drew the hearing date. I'd rented the St.Paul apartment from mid September, through the month of October. Not knowing the possible outcome of the hearing, I had to give up that apartment, admitting I'd jumped the gun. In the time remaining, my attorney had me writing many papers, covering a wide variety of topics, about why I didn't belong in the nursing home, never did, and why I was in personal danger remaining there. He worked on findings of fact and law based upon state law and DSH arbitrary decisions, and upon Federal overriding ADA Law. He presented my paperwork as a prehearing exhibit to both the referee and the DSH, saving his exhibits for the hearing, if needed. Which they weren't. Late on the Friday before the Monday hearing, the DSH supervisor phoned me with a slightly better offer, which I refused without my attorney present, and knowing that it wouldn't be enough. The Monday morning of the hearing, the supervisor phoned me with yet another slightly better, but still unsatisfactory offer for the same reasons.
At the beginning of the hearing, the referee said this was a matter of law, and he was impressed with my preparation. My attorney recited the approprite state law to the referee, then he recessed the hearing for the two sides to work it out ourselves. After an extended recess, we had the solution worked out, giving me the maximum lawful daily amount for someone on a ventliator, $469.00. Not counting my attorney, I had six people at the hearing who were never called upon to give testimony.
We'd worked out a landmark agreement, which should help many others who might be in similar circumstances. So I fully intend to publish the exhibits and agreement.
....And That's A View From My Chair!
The article I'M FREE!, was sent to New Horizons in May 1996.
If you would like more information about this program and would like to know if you are eligible, please call 1-800-846-8611.
As of October 16, 1996, Lifecare International has merged with Respironics to form one company. Lifecare will now be known as Respironics. The addresses and phone numbers for former Lifecare regional offices will remain the same.
Kaleidoscope the disability network channel, is now aired on Prime Cable channel 42 in Las Vegas, Nevada.
97 Abilities Expo-May 30-June 1. Anaheim, California. Anaheim Convention Center.
Some adaptive hardware and software assist individuals with little or no use of their hands in using a standard keyboard. Individuals with little or no use of one finger, a mouth- or head-stick, or some other pointing device, can control the computer by pressing keys with the pointing device. Software utilities can create “sticky keys” that electronically latch the SHIFT, CONTROL, and other keys to allow sequential keystrokes to input commands that normally require two or more keys to be pressed at the same time. The key repeat function can be disabled for those who cannot release a key quickly enough to avoid multiple selections. Keyboard guards (solid templates with holes over each cach key to assist precise selection) can be used those with limited motor control.
Sometimes repositioning the keyboard and monitor can enhance accessibility. For example, mounting keyboards perpendicular to tables or wheelchair trays and at head-height can assist individuals with limited mobility who use pointing devices to press keys. Hardware modifications can also assist individuals with mobility impairments. Disk guides can help with inserting and removing disketts; a dedicated hard and/or computer network access can eliminate or reduce the need to do so. For people who need to operate the computer with one hand, left-and right-handed keyboards are available.Expanded keyboards (larger keys, spaced far apart) and mini-keyboards provide access to those who have limited fine motor control but lack a range of motion great enough to use a standard keyboard. For those with severe mobility impairments, keyboard emulation is available with the use of scanning and Morse code. In each case, special switches make use of at least one muscle over which the individual has voluntary control (e.g., head, finger, knee, mouth). In scanning input, lights or cursors scan letters and symbols displayed on computer screens or external devices. To make selections, individuals use switches activated by movement of the head, finger, foot, breath, etc. Hundreds of switches tailor input devices to individual needs. In using Morse Morse code, users input Morse code by activating switches (e.g., a sip-and-puff switch registers dot with a sip and dash with a puff). Special hardare and software can also adapt Morse code into a form that computers understand so that standard software can be used.
Voice input provides another option for individuals with disabilities. Speech recognition systems allow users to control computers by speaking words and letters. A particular system is “trained” to recognize specific voices.
Special software can also aid those with mobility impairments. Abbreviations expansion (macro) and word prediction software can reduce input demands for commonly-used text and keyboard commands. For example, word prediction software anticipates entire words after several keystrokes and increases speed.
Directories of adaptive technology include:
Office of Special Education Programs/MS435
Apple Computer, Inc.
20525 Mariani Avenue
Cupppertino, CA 95014
Closing the gap
P.O. Box 68
Henderson, MN 56044
Trace Center International Hardware/Software Registery
Trace Research and Development Center
5-151 Waisman Center
1500 Highland Avenue
University of Wisconsin
Madison, WI 53705
Disabilities, Opportunities, Internetworking & Technology
NEW HORIZONS STAFF
Copyright 1997 Paula M. Howaniec