Conference moira::parenting

    Regarding .198
    
    If a baby is under a certain birthweight ... somewhere between 2 and 3
    pounds, then the SSI benefits DON'T depend upon the parents income for
    the duration of the hospital stay.  As soon as the baby is discharged,
    you are required to inform the SS office and they will make a
    determination about further benefits.  We were shocked that our son
    received a monthly check from SSI regardless of our income and even 
    though we had 100% health care coverage.  He was considered disabled 
    since he was only 1 1/2 pounds at birth.  He also received a medicaid 
    card that we could have used had we not had our own coverage or to 
    supplement any partially paid expenses.  
    
    Nancy 
    

    
    
    RE:  ssi
    
    I never heard of this benefit.  How did you find out?  Gee, we had
    social services ask us a bunch of questins, but never offer us anything
    in return.  Is this a state benefit?  If so, that may explain
    things...my oldest (900 gram birth weight) was in the hospital for 3.5
    months at the same time my husband was out of work.  We would have
    welcomed some assistance as we lived over 80 miles from the hospital.  
    
    Donna should look into this, especially if she is going to take a
    hardship leave to stay home and care for her child for a while.
    
    How long is a child eligible?    
    
    -beth

    Social security benefits are available based upon birth weight no
    matter what the parental income and benefits may continue after the
    child comes home based then upon parental income.  
    
    I was angry at the hospital social worker because the benefits were not
    explained clearly untill I met with a BPD specialist (that was the
    respitory problem with my son) and they said sign up immediataly with
    the social security office (there was a SS worker assigned to our
    hospital).  Once the appointment is made is when benefits will be
    effective, so my 2 months ignorance was lost, and benefits were not
    calculated until the call/appointment was made.
    
    That group also told me to get a handicapped sticker for our car, which
    never occured to me, so if any child is going home with machines that
    need to be hooked up all the time, you'll obviously need one of those. 
    You could contact the registry for the form, which needs a doctors
    signature and picture of your child.
    
    Beth
    
    
    

    I'm also curious about the SSI benefits.  Is this new? No one mentioned
    it to me when I had my twins, and we had the standard social worker
    assigned [at all 3 hospitals, no less]. The only thing they mentioned
    was when Brad came home the first time for his 2-week 'vacation' and
    that was that we had to apply for SSI/Medicare benefits to get rejected
    based on income so that we could apply for Caileigh Mulligan. And since
    everyone knew my husband was laid off from work right before I
    delivered, I would think the social worker would have mentioned
    something.  And considering Brad was in the hospital for 28 weeks,
    benefits would have been appreciated, if only to pay for the ridiculous
    parking rates.

Hi,

	I'm not sure if it was a state benefit, but I'll try to take a 
	look at our paperwork tonight. 

	The hospital (Brigham and Women's) NICU social worker informed us
	about the benefit.  She took care of everything up front.  About 2
	weeks after our son's birth, Social Security contacted me and sent 
	out some forms.  We received two checks, one retroactive to his
	date of birth, during his second month in the NICU.  We continued
	to receive monthly checks (5 total) until his discharge date.  At 
	this time, we filled out some financial information and our son was
	no longer eligible for his benefits.  About 6 months after he was home
	we received a letter from medicaid informing us that he was losing that
	benefit, which we never used, as well.  According to what I was told,
	the child is entitled to receive the SS benefits until his/her 
	discharge date, regardless of the family situation.

Nancy

           <<< MOIRA::MOIRA$NOTES:[NOTES$LIBRARY]PARENTING.NOTE;1 >>>
                                 -< Parenting >-
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Note 715.197                  Prayer for kids note                    197 of 203
MAGEE::HILL                                          41 lines   3-OCT-1994 16:51
                              -< My experiences >-
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    I just caught up on these recent notes and in January I delievered my
    son at 28 weeks.  Labor was held at bay for a week, so we got to be
    prepared for what to expect.  The told me to expect a 1.5-2 lb baby, I
    luckily had a 3lb 2 oz son Kevin.  This not brings that all rushing
    back, but the 20% oxygen sound great.  Kevin had many more respiratory
    problems and went for ventilator to an ossilator to Cpap to nasal
    canilar (sp) and was in the hospital for 2 1/2 months.  Please share
    with Donna and her family that my prayers are with her, but in this
    case day by day and week by week, the baby will just get better and
    better and although she'll need some help in "catching up" and some
    special care, I'm sure she's headed for the right track and before long
    she'll have a very average (but small) 8 month old just like I do.
    
    My only other comments, I really want to share is to tell them to speak
    up to the doctors and nurses and ask questions ALL THE TIME!!!  They
    are the baby's only true advocate.  Demand explanations if some new
    medication or xray is taken.  Make the hospital give you a progress
    update at least once a week, even if it's only 15 minutes.  I found
    that the doctors forgot that we were Kevin's parents just because we
    had not taken him home yet!  They were pleasantly surprised with our
    involvement, as there were many sad stories of uninvolved parents in
    many many cases.  (I was later told that a lot of premature births can
    be traced back to low or no pre-natal care, so obviously if there was
    no participation in the pre-birth time, don't expect a lot after the
    fact.)
    
    If they need more info I'd be happy to call Donna and share my
    experiences, just let me know.
    
    Oh the other thing, tell them to sign up for SSI, Social Security,
    right away.  A child with a low birth rate will quailify immediately
    and will receive monthly benefits due to the fact that the baby "lives"
    away from the parents (in the hospital).  Some of the benifits include
    a monthly check, and Medicare/cade benefits that may be useful if their
    insurance doesn't cover certain hospital and post-hospital services.
    
    Hope this helps!!
    
    Beth
    

           <<< MOIRA::MOIRA$NOTES:[NOTES$LIBRARY]PARENTING.NOTE;1 >>>
                                 -< Parenting >-
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Note 715.198                  Prayer for kids note                    198 of 203
PCBUOA::GIUNTA                                       36 lines   4-OCT-1994 08:50
                      -< I'll second that last response >-
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    Before you get your hopes up on the Medicaid and SSI benefits, it all
    depends on the parents financial status.  In our case, we would have
    had to apply to get rejected so that we could apply for other programs
    [Caileigh Mulligan].  Not everyone will qualify for SSI.
    
    On the other hand, when she does come home, her medical insurance and
    then the state will cover Early Intervention services [EIP] which will
    provide things like occupational therapy, physical therapy, speech
    therapy....whatever is needed whether it is regular appointments like
    Brad had or just 3-month monitoring visits like Jessica had.
    
    And I heartily agree with the previous reply.  Donna and Ed are the
    Nina's parents, and the doctors do forget that once in a while.  Ask
    and keep asking questions.  It can only help.  I remember one
    particular episode with Brad where they couldn't figure out why he was
    dumping all his formula [he'd eat and it would go directly into his bag
    as he had his ostomy at 12 days].  They tested everything and just
    couldn't figure it out for about a week.  We kept asking questions and
    asking the same questions, and one day I made a comment that it was
    just like the food went straight through his system and didn't bother
    to stop in his stomach. Well, that comment triggered a few thoughts in
    the doctor who ordered an X-ray. Turned out that what I had innocently
    said was actually the case -- he had pushed his feeding tube all the
    way through his stomach and to the beginning of the intestines so it
    was never stopping in his stomach to be digested.
    
    I know the medical staff at Brigham's NICU as that is where my twins
    were. They are top-notch and welcome parental involvement, questions,
    and interaction with open arms.
    
    I'll also volunteer to call Donna, but she may prefer to call people
    when she is ready.  The one thing I learned with Brad in the hospital
    for 6 1/2 months was to hate the phone ringing. It generally meant bad
    news.
    
    Cathy

    
    We filled out the paper work the day after nina was born a Nicu 
    soical worker (tami) filled out all the paper work and we signed our 
    name. 
    
    All babies that are born under 2 pds are elegiable for ssi.. 
    
    we should receive our check this week.. 
    
    I agree on the parking  it's outrageous .. 
    
    
    Donna
    
    g nd t