Disability or Disabled… that is the question I may NEVER understand!

Let’s start from the beginning….

Talynn was born at 35 weeks and spent 3.5 weeks in the NICU.  During that time, I stayed at the Ronald McDonald house in Norfolk.  After being discharged, we ended up with TWELVE different doctors and hospitalizations EVERY month since July.  During each hospitalization we stayed anywhere from 2-5 days.

Rewind: I went to school at East Carolina University and graduated with honors with a Bachelors in Education.  During those years, I  received a scholarship/loan to pay for 2.5 years of my schooling.  This scholarship/loan works like this: if you teach at a school in NC for the amount of years you received the loan then it will cancel however, if you do not then you have to pay it back with 10% interest.

I started back work in August 2014 teaching Math at the local High School.  This would have been 2.5 years teaching.  I became a teacher because I wanted to help educate children as well as give them the love that most do not get from home. Well the time came where I had to choose between my child or my job. I did not go to 4 years of school with loans to just STOP working but  I would be grading papers instead of paying attention to MY sick child at the hospital.  As much as I hated it, I had to take a leave of absences. It was not fair to my child to be a part-time mom nor was it fair to my students to be a part-time teacher.  I do not regret this decision at all but what comes next is something that I just can NOT wrap my head around.

Of course, I had to call the scholarship/loan program and see if there was anyway I could have it forgiven due to a sick child. The answer was NO.  I, the parent of the child with a rare genetic syndrome,  have to be disabled in order for the loan to be forgiven.  I can have it deferred however, it will still charge me 10% interest.

So… my next stop was to get some kind of help for TALYNN so that I could afford the medical expenses as well as the loan that I have from not being able to work (due to my child being sick).  My child can NOT go to daycare when 47% of the deaths are caused by Respiratory Infections and the first two years of life are the most critical.  I am a TEACHER our salary is $30,800 (N.C.).. I would have to pay a NURSE (RN) whose approx. salary is $50,000.  Can I afford that?! NO!  The reason I would need a nurse is because my child has a gtube with continuous feedings, nebulizer, oxygen, pulsox oximeter, suction machine, and also requires two days a week of therapy in Virginia (approx 50 miles away).. The STATE OF NORTH CAROLINA did not have a physical therapist or occupational therapist that could come to my home at the time we met with the Child Development Services Agency so we had to go elsewhere.   Well needless to say… we have been denied THREE times from getting my child disability.

I am sure there are ways to “PLAY” the system but I was raised better than that.  I was taught that if you want something than you work for it.  I have always done that and I continue to do that daily.  I am NOT asking for ME to have ANYTHING .  I am asking for my DAUGHTER! It is sad to say that the Government / State would rather people NOT work so they can get handouts while others go to school to do the RIGHT thing and when someone in their family actually NEEDS disability they CAN’T get it.

SUMMARY:

THE STATE OF NORTH CAROLINA:

  • is the 48th LOWEST pay for teachers
  • cannot provide services that help parents with children who have rare genetic syndromes if you live in a rural area
  • expects you to pay a loan back when you have a child that has a rare genetic syndrome called Bohring-Opitz Syndrome.  (There are only about 30-40 known cases in the medical literature.  Individuals with BOS can have severe developmental delay/intellectual disability, respiratory and digestive problems, and multiple cogenital anomalies.  Individuals with BOS are managed by numerous medical specialists.  Daily functioning can be severley impaired, and children with BOS may require lifelong, 24-hour attention and care; Letter from my Geneticists to help explain BOS)
  • will not help you when it comes to disability. I do understand that this is federal but good gracious you would think someone could get you in contact with the right person

So my question to you is… WHAT IS A DISABILITY or BEING DISABLED?? 

If my child is not then I am not sure I understand! 

Talynn a couple days old in the NICU.

Talynn, a couple days old in the NICU at CHKD.

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2 thoughts on “Disability or Disabled… that is the question I may NEVER understand!

  1. Gina Redmann says:

    Taylor, In Wisconsin we got Elaney approved early on to receive Medicaid benefits by qualifying for the Katie Beckett program. I’m not sure if this is a state or federal program, but I thought it was federal. Basically , it provides state Medicaid insurance for children who qualify due to their significant long term medical needs. This program also can reimburse for mileage to and from dr. And therapy appts.
    Also, does your state have the Birth to 3 program? This provides assessment of development and therapies, if indicated, in the home setting. Elaney has received OT, PT, and speech therapies twice a week since she was 3 months old.
    What about applying for Social security benefits for her? I have not done that, but have heard of others who have.
    Sorry this has been such a struggle for you guys! Maybe you should move to Wisconsin?? 🙂

    Like

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