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Re: question about respite

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  • Dori
    I ve been reading your emails. I m new here too so thought I d just jump in. Our waiting list here in Texas is 10 years! We do get SSI but started that when
    Message 1 of 4 , Jan 31, 2005
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      I've been reading your emails. I'm new here too so thought I'd just
      jump in. Our waiting list here in Texas is 10 years! We do get SSI
      but started that when Garrett was born because of birth weight. I've
      tried for years to get respite but can't seem to get it. We did
      just get a medicade case manager that is supposed to be helping us
      find services...so far she hasn't. My angel is a 3 year old little
      boy named Garrett. He has a twin sister that is not an
      angel...well, she IS an angel but doesn't have Angelman's. We also
      have an 18 month old little girl who is also typical.

      --- In familiesofangelmansyndrome@yahoogroups.com, Ann Watters
      <tandawatters2004@y...> wrote:
      > I would like to know what other states do about respite? Also,
      what about SSI? We were denied SSI and our area gives respite up to
      age 5 and then the state is to take over. But there are too many on
      the state roles so we are on the waiting list. We have been on the
      list for about 3 yrs and probably will be for at least another year
      or so. In the meantime, the state gives a small quarterly fund to
      offset some of the expenses and we rely on insurance and out of
      pocket. We drive 5 hours to receive medical treatment. Thank you,
      Ann in Kansas
      >
      >
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    • pam danko
      well i am checking into respite here in illinois right now and i have been told that there is lots of stuff out there .Also I just moved here from houston and
      Message 2 of 4 , Jan 31, 2005
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        well i am checking into respite here in illinois right now and i have been told that there is lots of stuff out there .Also I just moved here from houston and in houston i recieved respite help and also riley had just gotten to the age that they would pay for her diapers i am being told that medicaid will cover them here but still waiting for a response I have 4 daughters the youngest being my angel Riley age 3 pam


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      • r sonstegard
        Hello, I live in Iowa and recieve both SSI and respite. The respite is under the ILL and Handicapped Waiver. At the moment, I get up to 75 hours of respite
        Message 3 of 4 , Jan 31, 2005
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          Hello, I live in Iowa and recieve both SSI and respite. The respite is under the ILL and Handicapped Waiver. At the moment, I get up to 75 hours of respite which is for as long as I get the waiver, no matter what age. I had it lowered because I am in the process of getting a ramp put on the front of my house. The waiver is also paying for the ramp. I had to wait a very short time to get the waiver, about 2 months but have been on it for over 3 years. I had to wait for the SSI to go through until after my daughter, Alexandrianna, had been "determined eligible". This took about 7 months. I am also on a waiting list for another program that gives you a small monthly amount.
          I believe somebody mentioned diapers and in Iowa it is at the age of 4 that medicaid will pay for them. You have to get a doctor's report that says that the child has no bladder/bowel control and most likely won't. Ali turns 4 in April so that is when I will get them.


          Becky

          Ann Watters <tandawatters2004@...> wrote:

          I would like to know what other states do about respite? Also, what about SSI? We were denied SSI and our area gives respite up to age 5 and then the state is to take over. But there are too many on the state roles so we are on the waiting list. We have been on the list for about 3 yrs and probably will be for at least another year or so. In the meantime, the state gives a small quarterly fund to offset some of the expenses and we rely on insurance and out of pocket. We drive 5 hours to receive medical treatment. Thank you, Ann in Kansas


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