So Allen and I went to apply again for SSI for Makily.
DENIED......again.
We are over income.
You know because we are so terribly rich and all.
NOT.
It's very frustrating, although I am not surprised. I even told the lady we don't want the monthly check.....we just want the medicaid that comes along with it. I told her we have our own private insurance but our deductibles, co-pays and all are KILLING US. She at least sympathized with us. She said there was no issue with whether or not Makily was disabled. In fact she read the letter from the doctor and kept saying "oh wow" through the whole thing. *sigh*
What's really frustrating is that they of course go off of GROSS income and not NET PAY. This is a HUGE DIFFERENCE for us as Allen's checks have several hundred dollars in deductions and we don't even SEE OR TOUCH THAT MONEY.
It amazes me that people can get SSI for certain simple disabilities (which I WON'T list here because I really am not trying to offend anyone) but yet my child who is unable to walk, talk or even eat can't even get medicaid to help with her medical bills.
Something is terribly wrong with that.
The only suggestions the lady had was that Allen and I could get legally divorced or separated. Makily would DEFINITELY qualify then.
Nice.
She suggested that maybe Allen could get a job making less money but then recanted and said "Well then you wouldn't be able to pay your bills, huh?"
So we will trudge along, while my credit goes into the dumps (all Makily's stuff is in my name so at least Allen's credit is being saved). At least I have my health right?
******************************
Tomorrow is "the big day".
THE STAFFING ABOUT LITTLE J.
I am nervous, anxious and scared. I really have no idea what to expect from the SW (social worker) with DCF. She could really go either way as far as where little J should be placed. I know chances are that she will push for the relative because that's what "the system" says they should do.
How is it in the best interest of Little J to be moved to another state, after living with us for eight + months (by the time they can move him) and bonding with our family? The child has now been in THREE homes. How would that be in his "best interest" to move to a fourth?
The other day I was rocking J to sleep. My necklace with cross had gotten tucked into my shirt. With his eyes closed he was reaching up with his little hand looking for my necklace to hold onto as he drifted to sleep. I pulled my cross out of my shirt and he found it immediately. I sat there crying as I watched him fall to sleep in my arms.
What is he going to think when and if the move him away from me and I am not there to "give him my cross"? Where will he think I went? Will he know how much I loved him and how much I wanted him to stay with me?
Allen and I are still struggling with decisions. We make one and then change our minds a few minutes later. I keep praying for God to send us the answer. I keep waiting and praying that somehow it will come and I will immediately know what I am supposed to do, but that has not happened yet.
I have a feeling big things are going to happen tomorrow and I am so afraid.
Please continue to pray for us.
DENIED......again.
We are over income.
You know because we are so terribly rich and all.
NOT.
It's very frustrating, although I am not surprised. I even told the lady we don't want the monthly check.....we just want the medicaid that comes along with it. I told her we have our own private insurance but our deductibles, co-pays and all are KILLING US. She at least sympathized with us. She said there was no issue with whether or not Makily was disabled. In fact she read the letter from the doctor and kept saying "oh wow" through the whole thing. *sigh*
What's really frustrating is that they of course go off of GROSS income and not NET PAY. This is a HUGE DIFFERENCE for us as Allen's checks have several hundred dollars in deductions and we don't even SEE OR TOUCH THAT MONEY.
It amazes me that people can get SSI for certain simple disabilities (which I WON'T list here because I really am not trying to offend anyone) but yet my child who is unable to walk, talk or even eat can't even get medicaid to help with her medical bills.
Something is terribly wrong with that.
The only suggestions the lady had was that Allen and I could get legally divorced or separated. Makily would DEFINITELY qualify then.
Nice.
She suggested that maybe Allen could get a job making less money but then recanted and said "Well then you wouldn't be able to pay your bills, huh?"
So we will trudge along, while my credit goes into the dumps (all Makily's stuff is in my name so at least Allen's credit is being saved). At least I have my health right?
******************************
Tomorrow is "the big day".
THE STAFFING ABOUT LITTLE J.
I am nervous, anxious and scared. I really have no idea what to expect from the SW (social worker) with DCF. She could really go either way as far as where little J should be placed. I know chances are that she will push for the relative because that's what "the system" says they should do.
How is it in the best interest of Little J to be moved to another state, after living with us for eight + months (by the time they can move him) and bonding with our family? The child has now been in THREE homes. How would that be in his "best interest" to move to a fourth?
The other day I was rocking J to sleep. My necklace with cross had gotten tucked into my shirt. With his eyes closed he was reaching up with his little hand looking for my necklace to hold onto as he drifted to sleep. I pulled my cross out of my shirt and he found it immediately. I sat there crying as I watched him fall to sleep in my arms.
What is he going to think when and if the move him away from me and I am not there to "give him my cross"? Where will he think I went? Will he know how much I loved him and how much I wanted him to stay with me?
Allen and I are still struggling with decisions. We make one and then change our minds a few minutes later. I keep praying for God to send us the answer. I keep waiting and praying that somehow it will come and I will immediately know what I am supposed to do, but that has not happened yet.
I have a feeling big things are going to happen tomorrow and I am so afraid.
Please continue to pray for us.
8 comments:
hi, i just recently found your blog and wanted to say "hey" and that i will be saying a prayer tomorrow for your meeting about "j" i'm a mom of 5, 4 of which have special needs and came to our family through adoption. been there done that with social security. have you applied for a waiver? they have waivers in our state where your income doesnt count.
i love your blog. i identified with a lot of the emotions that you described. this past year has been very hard and lonely d/t serious illness with our daughter josie. many late night trips to the hospital 4 hours away. long stays and not knowing if she would pull through. she has seemingly stabilized now "knock on wood!" but it really took a toll on us emotionally/financially/spiritually just about every word ending in ly that you can think of. we finally feel as if we are crawling out of a hole and seeing daylight. although im with ya on the whole credit thing d/t medical bills....it S.U.C.K.S....
=) rachel
Prayers for tomorrow! Hugz as well!!
I was reading a blog about a family that were told the same thing to get dirvoced so they could get helps with medical stuff (there daughter had a heart transplant!) IT IS SO VERY wrong!!
I pray that there will be some blessings coming your way very soon
I'm sending you all the "keep J here" vibes I can muster! GOOD LUCK!
praying for both requests...just a suggestion but in most states there is some type of model waiver for MA that waives your income and only depends on hers...here in Maryland sometimes you only have to have a gtube to qualify for a technology waiver. we also fall into the same category and Hannah got put on the waiver when she got her trach. btw, we were also told the same thing about getting a divorce and living together...also we were told to put her up for adoption and take her as a foster child :( the sad things that theyask us to do, to be dishonest and still follow the rules :(
joan
check out my new blog http://jordanessential.blogspot.com/
http://www.caringbridge.org/visit/hannahgrace95
Know that I KNOW where you are...I am definitely praying for J and decsions being made on his behalf! On insurance....every state has an insurance specifically for "children with special needs" it has no income requirements...it is a well kept secret....I believe this is the link for your state.. http://www.doh.state.fl.us/cms/index.html ...if this isn't right...I can give you another!
Trish-
I read your post and then I called our social services person (I just got done working with her because we were able to get Medicaid pushed through on a Colorado state waiver for Marie). Anyway, I asked if ours was a national program, or state or what, and if she knew anything about something similar in Florida (I hope you don't mind that I did all this, I just KNOW how it feels financially).
Anyway, I'll give you my info on our waiver so that you could ask your SS person if there's anything like it in FL.
I don't think it totally applies because Marie on on a Pediatric Hospice Waiver. However, it is part of what Colorado calls the Hopeful Program and that is part of the HCBS (Home Community Based Services) Waiver program and our SS person thinks that a nationwide program.
What is key is, they put Marie on her waiver by treating her as an adult applying for Medicaid. We're far over income ourselves, but, Marie's income is zero. The theory is that this helps middle class families cope with the exponential costs of long term care for disabled individuals.
Hopefully all this gobble-de-gook helps. I can't believe it was suggested that you and Allen divorce. I mentioned that to our SS person and she said that she is just appaled by how many people in the system flat out don't do their jobs.
Once again, I hope this helps and you're not upset that I called and asked on your behalf.
I'll be praying for your meeting about J. I can't imagnine, what an emotional roller coaster you're on!
Sending more prayers your way. I know that things will work out according to God's will. I also know that no matter what, J will always remember who loves and cares for him. Love you!
I will be praing for you guys about the meeting tomorrow. Hoping things go the way you want them. I'll be praying for you guys.
Love,
Sami
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