College Student in Need of Personal Care

Hello!

My name is Katherine, I am a freshman at NYU in the Silver School of Social Work, and I am originally from Florida. I also have a neuromuscular condition, called Spinal Muscular Atrophy (SMA), which causes weakness in all of my major muscles. Therefore, I require a personal care assistant 24/7 in order for me to perform daily living tasks, such as dressing, bathing, cleaning, cooking, etc. Basically, I need someone with me at all times who can act as my hands.

Generally speaking, this type of care is funded through the state by Medicaid. However, obtaining Medicaid in a state that you have not previously resided in is a very tricky process.

Back in May, when I was deciding which college I would attend this fall, this was something I had to take into account. After receiving a scholarship from NYU that would cover all of my tuition and talking with a friend who had been in a similar situation and had to navigate the Medicaid system in order to attend college in a different state, I decided that NYU was the best decision for me.
So, after enrolling at NYU, I began the journey to switch my Medicaid from Florida to New York. I cannot even count the number of hours I spent on the phone over the summer trying to figure out the right steps to take, but that does not even matter. I was finally able to get it switched over at the end of July. This was awesome!

Then I hit a speed bump.

After some more research, I figured out that I needed to use a different agency for my personal care than I had originally anticipated. This meant that I needed to switch some of my information with my social security.

Here's where it gets kind of confusing:

I received Medicaid through my social security. Therefore, when I need to change information with Medicaid, I have to first change it with social security. Then, social security is supposed to immediately send the information over to Medicaid. And voila!

Only not.

I initially changed this information with social security the week of August 20th. I was told at this point that Medicaid should receive said information within two to three business days. Two to three business days later, I called Medicaid to find out they had received no such information. So, I called social security again, at which point I was told that the information must have been input incorrectly because it was not even in the social security system.

This cycle of misinformation and false affirmation went on for the next four weeks.

It is important to note that, after dealing with the Medicaid system for the duration of the summer, I decided to ask a friend to serve as my assistant for the first month of my college career. Luckily, I have pretty awesome friends, and one of them was more than willing to do so. The hope was that my friend would be able to help me train my personal care assistants (PCAs), but, because my benefits were not in place yet, this was unable to happen.

Now, the month that my friend was able to help me has come and gone, and I have been relying on volunteers to help me with daily living tasks. I essentially emailed the entire student body, in order to get the word out that I was in search of volunteers. I had a decent amount of responses, and approximately six students who are able to commit to helping me on a regular basis, which is wonderful! However, that still leaves a lot of gaps. I am fortunate enough to have a cousin who lives in the city who has been able to fill in where I need her (which has been an awful lot!).

On Friday, I received a letter from Medicaid stating that my benefits would officially be in New York City on October 1st. That means that on October 1st, the agency I will be using for personal care can begin the process of getting me entered into their system. I'm not sure exactly how long this process will take, but I know it will take approximately one week to get an evaluation for the state to determine how many hours of personal care I qualify for, and then additional time for the agency to process my case and find assistants for me.

Things have not necessarily been running smoothly over the past week and a half (since my friend had to leave), but they have worked. I have been able to get the things done that I need, which, ultimately, is all that really matters.

That is, until I hit another roadblock.

Yesterday, I found out that my cousin got a new job (hooray!) that she will start at on Monday. Therefore, I have a lot of hours that I need to have covered in order to function on a daily basis. I will not have personal care coverage through the state for at least two weeks (and that's if everything from this point on moves smoothly), so I have to find another means of getting assistants.

Last night, I began asking friends who also have some form of Muscular Dystrophy what they thought I should do. Someone gave me the suggestion to contact the local Muscular Dystrophy Association office, which I did. They are not able to provide me with any form of personal care, but they were able to point me in the direction of some agencies that do personal care. However, you have to pay out of pocket, which costs $22/hour. At this point, that is my only option.

As a college student, I do not have much financial flexibility. But, if I do not find a way to pay for assistants, my only option will be to go back home to my family in Florida until my benefits are in place. However, this would cause me to lose my scholarship to NYU, which is not an option for me. I have worked very hard to get here, and I refuse to let a couple of weeks get in the way of my education.

With the help of my gracious volunteers, it is going to cost me upwards of $1,500 to get from this Sunday through Friday. That is only for five days, and I am probably going to have to do this for at least fourteen days. Again, that is if I'm lucky.

So, any amount of money that you are able to donate is much appreciated. Every little bit helps!

Thank you for taking the time to read this,
Kat