03-16-2002, 02:11 PM
Hi my name is Ardyth and my daughter Shealee is finally able to come home from the hospital after 2 and a half years http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif .Our problem is that she cant come home because as of now we are having problems getting the funding from the Dept. of Health that would allow us to bring her home http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/mad.gif Shealee has a trach and is ventilator dependant, she will need 24hr nursing care. If other parents have had a problem bringing their child home can you please tell me, and how you went about getting the help you needed.Thank you
03-17-2002, 10:19 AM
Hi, Ardyth!! First, congratulations for finally getting to the point where you can take Shealea home!! I have a couple of questions before you can get some good answers. Do you live in the US? If so, what state? Assuming you live in the US, many states have what is called Katie Beckett's waiver, or technical assistance waiver. That is where Medicaid picks up the bill for nursing REGARDLESS of your income. Sadly, some states still do not have such a waiver so only the very poorest of people get help! The rest of us quickly go bankrupt - then you get help! Sad, huh? Please post where you live and more people can help. Re: all of Shealea's problems..I understand. Michael does not have all of those problems, but I still understand how sad it is to anticipate the birth of a healthy child, then you're robbed of the first months, now years together. My son was in the hospital for almost 13 weeks and we had to fight tooth and nail to get him home. The argument was that it is cheaper to keep him in a rehab center (nursing home for babies) than it was to bring him home. The idea behind the Katie Beckett law here in the US is that Katie had the same situation, but because her parents worked she wasn't entitled to Medicaid. The law forces the state to look at "Katie" as an individual with medical needs without considering the parent's income. This entitles "Katie"...or Shealea, or Michael, etc. to be HOME with his/her family and have the social stimulation and LOVING CARE that you just cannot get in a rehab hospital or any other hospital for that matter. Mother after mother states how their children were staring into space, just not responding or developing in the hospital, then when they come home they really blossom. We have to fight and sometimes get lawyers to fight for us to bring the child home. I could (and will if you need me to) go on and on about how to get this arranged. I think if you live in the UK or elsewhere, the same argument exists..though I don't know your legal system. OH..also, in the US, they usually max out at 16 hours a day nursing...this is because the parent(s) have to assume their "share" of taking care of the child. This means you need to be trained and qualified, willing and able to take care of the child. In other words, if the parent is handicapped, retarded, or a drug addict, for example, then I am not sure the outcome would be the same. I am assuming they might up the hours for a handicapped mother, but for the drug addict they might force the child to stay in rehab. That is an assumption on my part though. Having said all that... I know it is so sad and frustrating and overwhelming to go through all of this, then you have to fight for everything. You can do it though. If you need more help, please post your email and maybe I can help you more.. Good luck! Susan http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif
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