Reaching out to NYU for help with our medically fragile son

Beginning Monday morning, I will reach out to NYU and speak with them about Gavin.  The Cleveland Clinic has already referred us and transfered all the records.

To be completely honest, while this trip is a necessity, I have no idea how we are going to pull this off. 

The trip to John’s Hopkins was going to be tough and so will making the trip New York, especially going into the winter weather.  I don’t know if making the trip will even make a difference. 

I hope that speaking with this new doctor at NYU, will give us a better understanding of the pros and cons of trying to take Gavin across several state lines, by means of automobile.  There are risks involved and the end will have to justify the means. 

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Mike11212

Check out hopstop.com.  It’ll provide you maps, subway lines, etc.  You’ll be able to preplan.

Mike11212

I would also recommend you take a train into NY, and rely on mass transit.  Sometimes, it’s tougher to find parking here than it would be to take the subway.  Amtrack to NYC would probably be cheaper in the long run than driving, paying to park, tolls, etc.

NYU has several facilities.  All should be within walking distance to a subway stop regardless of where you are staying.

Mike Pirone

I'll plus 1 the idea of taking the train to NY. I live there, and mass transit is far easier than finding parking.

NYU has several facilities. I'm not sure which one you would be going to, but all are located at subway stops.

EAwidmom

I believe there is an organization that can help with flying patients to long distance medical appointments.  Talk to the people that posted before me.  There has to be some help available for you to get him to these places if it is needed.

lostandtired

anansison jjean3940 Thanks for pointing that stuff out. If and when we make the trip, those will definitely be things we look into. 😉

anansison

Have you contacted your local Shriner’s Club?  What about the Ronald McDonald houses?  Also, would it be cheaper to take a train to NYU for you?  There are organizations that may be able to help and if you need some additional information please send me an email.  dmatthis@acisupport.com

jjean3940

Rob- I just want to make sure you know that in many instances, if the insurance cannot provide a local provider and going over 60 miles from home is necessary there is often a travel and lodging benefit.  It’s actually one of the few benefits of getting stuck in an mco.  If NYU says a trip is necessary, I would call the number on the back of Gavin’s card and request a case manager for him.  They should be able to tell you if that is a benefit for him.  It’s worth a shot anyway.  Sometimes if your vehicle is unreliable they will even pay for a sedan to drive you.  I did it for a patient last month.

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