Sadly, I received notification that due to budget cuts, Nassau Able-Ride will no longer offer door-to-door service. They are only required by law to provide service to people with disabilities along bus-routes, so that's what they are going to do. This means that there are whole towns in Long Island that will not have Able-Ride paratransit service. I'm happy to be living in New York City, where Access-a-Ride still offers door-to-door service. It enabled me to go with my friend Judy to the kickoff party for the NYC Walk to D'Feet ALS at Yankee Stadium, and to the baby-naming of my friends' babies in Bayside, right on the border of Nassau and Queens. But I would not have been able to go to my traditional New Years Eve party at my friend Nancy's house in Great Neck if not for the connection to Able-Ride. This is very sad news for people with disabilities in Nassau County who don'thave use of a wheelchair van. Budget cuts are hurting everyone.
Budget cuts could really hurt me in a big way too. I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care. Right now, I have two aides every day, on a "Split shift" of twelve hours each. I am not likely to lose that, but they are not giving that arrangement to new applicants. Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours. This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours. They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this. So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides. That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility. It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me. So they would have to leave certain things within reach. And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.
On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay. I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion. I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA. He is at the Hospital for Special Surgery. The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours. I love spring, but it is a double-edged sword for me. I am comfortable inside with the A/C going. I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country. Take hikes by the ocean on your days off, and never in the woods." I do always feel best at the beach, far away from pollen and ragweed. I always imagined myself retiring to a beach house to do my collages and my writing. I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day. I can't help this, because the aides have to be amused too.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Tuesday, April 13, 2010
Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General
Posted by Fern Ellen Cohen at 9:55 PM
Labels: ableride, access-a-ride, accessibility, ALS, ALSA, disabilities, disability, disabled, longisland, Lou_Gehrig's_Disease, Lougehrigsdisease, MND, nassau, paratransit, transportation, WalktoD'Feet
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