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Old 08-19-2010, 08:34 PM   #4
Junior Member
Join Date: Aug 2010
Posts: 19
melliann HB User
Re: do caregivers get benefits?

I'm going to give you a totally opposite answer. My son have very complex and complicated special needs, gets SSI the whole thing, state and federal have declared him severely mentally retarded with lots of medical needs. Anyways we live in Minnesota so I don't know if this applies to all states (but from what I have been told the funds are primarly funded through the federal government with the state kicking in a little bit) he is on a waiver and has been since he was 2 (he is 11) before with the waiver it paid for PCA services which was perfect at the time because he was the only child. After my son turned 6 and was going into 1st grade so he would be in school all the time my husband and I thought about having another child (his 1st, he is daddy to my son since his sperm donor well that is all he is left us after he found out Ryan had down syndrome) anyways I got pregnant and since my son has Down syndrome I was labeled high risk even though I was 26 at the time, so with that I got to do an early ultrasound to check measurements of vital organs and neck linings when I was 10 weeks along, well at that point I found out what a really high risk pregnancy was I was carrying identical twins. After I had the girls I did go back to work for a year then we decided that all I was doing was paying for daycare so I decided to stay at home. A couple of years later I found out about a program called consumer support grant, oh that was heaven sent, because to help make ends meet because SSI for a disabled child just doesn't cut it, I was working at Wal-Mart and I hated the hours and I was thinking about going back to school. Anyways I went through the training and found out I could do parental/spousal pay I was ready to jump up and down at that point. My social worker had to come out to do an evaluation to see much help my son really needs, he is 11 years old and functions at about a 3 year old level, so I have to do the meal prep, the cutting up of food, the dressing, bathing, changing of pullups or doing catheters on him and then there is the medication management and all of the doctors appointments. I get the full amount that the state says I can have. I have a catch 22 though I have to watch how much I make an hour because if me and my husband go over a certain amount of money we lose health insurance (he is a self-employed construction worker and let me tell you business is really slow). Have the Consumer supported grant has helped out so much, along with the medical assistance, I don't know what I would do without it to be honest I think I might have had to put Ryan into a home without it and then that would have cost the state even more money.