I am writing you this morning as I am extremely frustrated by the approval and decision making process regarding services requested for my son. We, as a family, absolutely do not ask for anything more than we need or our son requires and ensure that we do not abuse the system put in place to support children like ours but we have come to a standstill with our contract with Family Supports for Disabilities.
Our son Benjamin has a rare neurological disorder called Ponto Cerebellar Hypoplasia Type 3; I’ll spare you the details as I’m sure you will just Google it if you’re interested but what it has meant for us and more importantly him, are countless nights of not sleeping. I’m not exaggerating when I state that our child does not ever sleep in a pattern or that he is up for hours at time each night. In addition to that, he is supplemented food through a gastrointestinal tube which puts him at risk for aspiration and choking due to reflux and sensory issues. For the past five years, my husband and I have tagged off and on to support Ben at night, taking turns sleeping the couch, watching Elmo with him for hours at a time or simply just playing with him but it’s come to a point where we are feeling burnt out. I feel we have made a good run at trying to do it ourselves. But the worst part of our exhaustion is how it relays to Ben; he definitely can feel the frustration when he’s been up since one in the morning and we’re tired. We try our best to be patient and accommodate him but for lack of better word – we’re pooped. This is not a normal circumstance. We want to be the best parents for him, provide him the best quality of life and to ensure that he’s happy and to do that, we’ve applied for over night respite assistance and have even registered and qualified for the service from Nurse Next Door (a private company) to watch Ben through the week 10p.m. – 6 a.m.
However – FSCD will not approve the funding needed which I do not understand. How is my child not considered as valuable as they funding requested?
I understand that FSCD may look into using the Supports Intensity Scale for future assessments and when that happens, Ben will without a doubt receive the financial supports he requires based on his medical and behavioral assessment alone but until then, I don’t believe that asking for overnight respite for him is much to ask; it will allow us to be our best for him during the day when we can engage him in his community, include him in social activities and allow him to have fuller days. How is that not worth what we’re asking for?
Please point me in the right direction…. a direction that allows us to provide nothing less than the best support possible for our son.
Thank you for your time and consideration.