Tuesday, April 13, 2010

Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General

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.

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