As part of our interdisciplinary CP clinic appointment the other day, we saw social services. Now keep in mind that they see patients from all over the country. We of course went over what services are available, the family dynamics of our home, and of course the financial difficulties we have been faced with since Jaylyn's diagnoses, and requirement of a lot more care than a "normal" baby. I may have mentioned in a previous blog that we had applied for and were denied SSI, told to apply for welfare/medicaid, etc. We have appealed, contacted our Senator, got denied county medicaid, and was told Jaylyn would be eligible for state medicaid because of her multitude of diagnoses and that she falls under their criteria for "special circumstances ". Keep in mind that she has been on my health insurance plan, open enrollment is the only time I can add, remove, or make any changes to my plan.UNLESS she gets medicaid. And typically a person can only be eligible for medicaid if they have not had insurance for over 3 months. So I cant get medicaid UNLESS shes uninsured for 3 months BUT I cant remove her from my insurance unless she gets medicaid, MAKE SENSE?!?!?! Well open enrollment ended in June, and although the cost had gone up to $217 a week, I was going by what the intake personnel had told me and kept Jaylyn on my insurance until she was approved for medicaid. I mean, after all, how could they deny someone with severe disabilities, let alone a baby that cant afford not to be insured for even a day! After the crushing blow of being denied SSI, I thought for sure the "experts" that can barely speak English, or spell my name right on important documents no matter how many times Ive corrected them would obviously give me the correct info when they told me Jaylyn is sure to be eligible for medicaid. So now because I was obviously misinformed, and open enrollment for insurance through my employer has closed, I am locked in for a year. $217 automatically gets removed from my pay check every week, whether I can afford it or not. Whether I have bills to pay or not. Whether we are hungry or not. So round and round we went explaining this big confusing mess to the social worker at CHOP, hoping we could get some direction or assistance. The only sage words were that "New Jersey is THE WORST state when it comes to getting help and services for special needs children." Well that was obviously NOT a revelation to us considering everything we have been through thus far. However, considering this hospital has patients from all over the U.S. and the world?!?! THATS PRETTY BAD! Jay and I often fantasize about moving to a house in the country, a pond for fishing, a cow for milking, a pig for bacon....Obviously NOT in New Jersey. Of course we wouldn't move completely off the grid because we fully intend on being in close proximity to CHOP for as long as Jaylyn is with us. New Jersey has some very unforgiving rules and laws as far as health insurance, getting assistance and services. Even those that provide said services complain of the difficulties and unfairness special needs families face. After writing a very lengthy appeal letter to medicaid, I of course called the senator's office to update them on that as well as to see what we can do to make changes for all special needs children and their families in this state! Many other states have laws protecting these children and assuring them assistance and medical insurance regardless of income. In NJ you have to be destitute for such a great length of time before even being considered for assistance or services, unless youre an illegal or a crackhead so it seems. The multitude of applications, required documents, and flaming hoops one has to jump through for any type of help is enough to make anyone give up. And I honestly believe thats why things are made to be so difficult. Most would quit. Most would give up. Not this chick!!! Hell to the NO! I contacted the president of my company as well as the president of the United States, and everyone in between. Laws need to change! As if having a child with special needs is not difficult enough. Considering the circumstances of Jaylyn's diagnoses, it cannot be proven 100% that the vinyl chloride and/or contaminated water is NOT responsible at least in part. We did not plan or prepare for any of this. So we are doing the best we can with the cards we were dealt so to speak. But yes it would be nice if more people were competent in their chosen fields of employment. Especially when it comes to special needs children. We can use a friggin break! I mean seriously! It is currently 4am. In 3 hours, my shift ends, I have to stop to pick up de-skunking ingredients, go home, get baby ready for PT at 9am, deal with my stupid dog that got sprayed by a skunk, run errands, go food shopping, and all the "normal" mom stuff as well as manage the multitude of phone calls I get for Jaylyn. I hope that somewhere in there I can get some sleep too.
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