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Re: SSI

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  • Dee Dee
    That would be so cool!! Have you taken your little one to Seattle Arthrogryposis clinic yet? They have been such help for us.. Maybe one weekend we could all
    Message 1 of 30 , May 1, 2005
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      That would be so cool!! Have you taken your little one to Seattle
      Arthrogryposis clinic yet? They have been such help for us.. Maybe
      one weekend we could all go out to lunch somewhere..
      --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
      <b.hansetburch@c...> wrote:
      > I would love to meet you and Elijah.
      > ----- Original Message -----
      > From: Dee Dee
      > To: avenues2@yahoogroups.com
      > Sent: Friday, April 29, 2005 11:30 AM
      > Subject: [avenues2] Re: SSI
      >
      >
      > My hubby actually works in Beaverton and we love going to
      Portland
      > to go shopping..We used to go up there every other weekend
      before I
      > got pregnant. Now we go up maybe every other month or so.
      >
      > --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
      > <b.hansetburch@c...> wrote:
      > > I'm in Gresham. Do you ever make it up to the Portland area?
      > > ----- Original Message -----
      > > From: DEBORAH HARRINGTON
      > > To: avenues2@yahoogroups.com
      > > Sent: Wednesday, April 27, 2005 2:25 PM
      > > Subject: Re: [avenues2] SSI
      > >
      > >
      > > Beverly,
      > > what part of Oregon are you in if you don't mind me asking.
      I
      > have a two and a half year old boy with Arthrogryposis named
      Elijah
      > and we live in Salem. I was just curious how close we are and
      how
      > old your daughter is.
      > > ----- Original Message -----
      > > From: Beverly R Hanset Burch<mailto:b.hansetburch@c...>
      > > To:
      avenues2@yahoogroups.com<mailto:avenues2@yahoogroups.com>
      > > Sent: Wednesday, April 27, 2005 8:27 AM
      > > Subject: Re: [avenues2] SSI
      > >
      > >
      > > Before my daughter left the hospital, she was prequalified
      for
      > SSI. We did a telephone interview, and the doctor submitted the
      > necessary papers on her condition. They never needed any
      originals.
      > When I finally had to go in for a review, they were shocked that
      I
      > brought her and told us that we could start doing everything by
      > telephone. She doesn't look that bad! And she was approved for
      > arthrogryposis, on the first try. However, the person that did
      the
      > review said she had seen a child recently that was far worse
      off,
      > yet had been originally denied. I am in Oregon. Our local
      Portland
      > office puts a lot out to the field, and the person I dealt with
      was
      > in Pendleton. I think this helped ease the process. I always got
      a
      > life person when I called with any information. Once the case
      was
      > transferred to Portland, I now deal with things by either mail
      or
      > voice mail.
      > > ----- Original Message -----
      > > From: Tamra Garner
      > > To: avenues2@yahoogroups.com
      > > Sent: Wednesday, April 27, 2005 6:49 AM
      > > Subject: Re: [avenues2] SSI
      > >
      > >
      > > Hello Naomi,
      > > My son, Isaac, receives SSI. The first step is to see
      if
      > your child would
      > > qualify based on your family's income. A quick phone
      call
      > to your local
      > > Social Security Administration office will give you that
      > info based on the
      > > size of your family.
      > >
      > > If you are income eligible, request an application for
      SSI.
      > You will want
      > > to take some time with this, documenting EVERY little
      > limitation that your
      > > child faces. It is helpful if you include anecdotal
      > examples of situations
      > > where those limitations are very obvious. It can be a
      very
      > depressing
      > > process, looking at all your child cannot do, but I
      > compartmentalize this
      > > kind of thinking to the SSI process. The rest of the
      time,
      > I choose to look
      > > at all the things my son can do and has found ways to
      do,
      > his delightful
      > > personality, etc. You will be asked for the names and
      > contact info for the
      > > health care providers your child has seen. Let the
      > providers know you are
      > > applying for SSI, and be sure to give them anecdotal
      > examples of your
      > > child's functioning for their records. Then, they have
      more
      > to document for
      > > SSI than just range of motion measurements, etc. I have
      > found that my son's
      > > physical therapist is invaluable in this process,
      because he
      > sees my son at
      > > least once a week, where the orthopedic doc sees him
      just a
      > few times a
      > > year.
      > >
      > > You will need to submit the completed application with
      proof
      > of income,
      > > registration of vehicles owned, life insurance policies,
      > proof of home
      > > ownership, property taxes, driver's licenses, birth
      > certificates, social
      > > security cards for everyone in the house,etc (SSA will
      give
      > you a list of
      > > things they need to document). They do not accept
      copies;
      > you will need to
      > > take in originals, and they will copy them.
      > >
      > > Then, you wait. And wait. Sometimes, not often,
      approval
      > occurs after this
      > > first application level. This can take about six
      months.
      > Usually, your
      > > application is denied. ALWAYS appeal a denial. Provide
      > more info.
      > > Document with more anecdotes. Ask someone else to
      document
      > their
      > > observations (even a grandma). After appeals, approval
      can
      > take up to 2-3
      > > years, BUT the approval is retroactive to the date of
      you
      > application. This
      > > means that you will get one or two large lump sum checks
      for
      > all of the
      > > previous months, from the time of application to the
      time of
      > approval, once
      > > your child is approved. It also means that your child
      will
      > be covered
      > > retroactively by Medicaid, from the date of your
      application
      > forward. It
      > > means that any payments you have made to Medicaid
      providers
      > must be refunded
      > > to you, and the provider can bill Medicaid for those
      > services.
      > >
      > > If you do not appeal a denial, the application process
      > stops. If you choose
      > > to re-apply at a later date, an approval would only
      start at
      > the time of the
      > > second application.
      > >
      > > I hope this helps. I wish you the best!
      > > Tamra
      > > Mom to Katie-(married and living in Washington State),
      Joel-
      > 15
      > > (football-itis and itching to drive), Isaac-9
      (drummerboy-
      > itis,
      > > arthrogryposis, bilateral Boyd amputations) from the
      > mountains of southern
      > > Colorado
      > >
      > > P.S. I just looked at this signature and want to
      reassure
      > you that Isaac
      > > was approved for SSI for his arthrogryposis alone, prior
      to
      > his amputations.
      > >
      > >
      > >
      > > ----- Original Message -----
      > > From: "MzPleasant1" <mzpleasant1@s...>
      > > To: <avenues2@yahoogroups.com>
      > > Sent: Tuesday, April 26, 2005 10:08 AM
      > > Subject: [avenues2] SSI>
      > > >
      > > > Hello I was wonder is anyone receiving or filed for
      SSI
      > for their
      > > > child, I was told to file for it but wanted to know
      the
      > procedures and
      > > > if anyone with Artho' is receiving it or filed..
      > > >
      > > >
      > > > Thank you
      > > > Naomi
      > >
      > >
      > >
      > >
      > > -----------------------------------------------------------
      ----
      > ---------------
      > > Yahoo! Groups Links
      > >
      > > a.. To visit your group on the web, go to:
      > >
      >
      http://groups.yahoo.com/group/avenues2/<http://groups.yahoo.com/group
      > /avenues2/>
      > >
      > > b.. To unsubscribe from this group, send an email to:
      > > avenues2-unsubscribe@yahoogroups.com
      > >
      > > c.. Your use of Yahoo! Groups is subject to the Yahoo!
      > Terms of Service.
      > >
      > >
      > >
      > > [Non-text portions of this message have been removed]
      > >
      > >
      > >
      > > -------------------------------------------------------------
      ----
      > -------------
      > > Yahoo! Groups Links
      > >
      > > a.. To visit your group on the web, go to:
      > >
      >
      http://groups.yahoo.com/group/avenues2/<http://groups.yahoo.com/group
      > /avenues2/>
      > >
      > > b.. To unsubscribe from this group, send an email to:
      > > avenues2-unsubscribe@yahoogroups.com<mailto:avenues2-
      > unsubscribe@yahoogroups.com?subject=Unsubscribe>
      > >
      > > c.. Your use of Yahoo! Groups is subject to the Yahoo!
      Terms
      > of Service<http://docs.yahoo.com/info/terms/>.
      > >
      > >
      > >
      > > [Non-text portions of this message have been removed]
      > >
      > >
      > >
      > > ---------------------------------------------------------------
      ----
      > -----------
      > > Yahoo! Groups Links
      > >
      > > a.. To visit your group on the web, go to:
      > > http://groups.yahoo.com/group/avenues2/
      > >
      > > b.. To unsubscribe from this group, send an email to:
      > > avenues2-unsubscribe@yahoogroups.com
      > >
      > > c.. Your use of Yahoo! Groups is subject to the Yahoo!
      Terms
      > of Service.
      > >
      > >
      > >
      > > [Non-text portions of this message have been removed]
      >
      >
      >
      >
      >
      > -------------------------------------------------------------------
      -----------
      > Yahoo! Groups Links
      >
      > a.. To visit your group on the web, go to:
      > http://groups.yahoo.com/group/avenues2/
      >
      > b.. To unsubscribe from this group, send an email to:
      > avenues2-unsubscribe@yahoogroups.com
      >
      > c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms
      of Service.
      >
      >
      >
      > [Non-text portions of this message have been removed]
    • Beverly R Hanset Burch
      I haven t been able to afford Seattle yet. It will be awhile! I am going to try to get Medicaid to pay it through an out of state waiver. But if you can stop
      Message 2 of 30 , May 2, 2005
      • 0 Attachment
        I haven't been able to afford Seattle yet. It will be awhile! I am going to try to get Medicaid to pay it through an out of state waiver. But if you can stop by here, I have sons that love playing with kids.... then we can talk!
        ----- Original Message -----
        From: Dee Dee
        To: avenues2@yahoogroups.com
        Sent: Sunday, May 01, 2005 10:26 PM
        Subject: [avenues2] Re: SSI


        That would be so cool!! Have you taken your little one to Seattle
        Arthrogryposis clinic yet? They have been such help for us.. Maybe
        one weekend we could all go out to lunch somewhere..
        --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
        <b.hansetburch@c...> wrote:
        > I would love to meet you and Elijah.
        > ----- Original Message -----
        > From: Dee Dee
        > To: avenues2@yahoogroups.com
        > Sent: Friday, April 29, 2005 11:30 AM
        > Subject: [avenues2] Re: SSI
        >
        >
        > My hubby actually works in Beaverton and we love going to
        Portland
        > to go shopping..We used to go up there every other weekend
        before I
        > got pregnant. Now we go up maybe every other month or so.
        >
        > --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
        > <b.hansetburch@c...> wrote:
        > > I'm in Gresham. Do you ever make it up to the Portland area?
        > > ----- Original Message -----
        > > From: DEBORAH HARRINGTON
        > > To: avenues2@yahoogroups.com
        > > Sent: Wednesday, April 27, 2005 2:25 PM
        > > Subject: Re: [avenues2] SSI
        > >
        > >
        > > Beverly,
        > > what part of Oregon are you in if you don't mind me asking.
        I
        > have a two and a half year old boy with Arthrogryposis named
        Elijah
        > and we live in Salem. I was just curious how close we are and
        how
        > old your daughter is.
        > > ----- Original Message -----
        > > From: Beverly R Hanset Burch<mailto:b.hansetburch@c...>
        > > To:
        avenues2@yahoogroups.com<mailto:avenues2@yahoogroups.com>
        > > Sent: Wednesday, April 27, 2005 8:27 AM
        > > Subject: Re: [avenues2] SSI
        > >
        > >
        > > Before my daughter left the hospital, she was prequalified
        for
        > SSI. We did a telephone interview, and the doctor submitted the
        > necessary papers on her condition. They never needed any
        originals.
        > When I finally had to go in for a review, they were shocked that
        I
        > brought her and told us that we could start doing everything by
        > telephone. She doesn't look that bad! And she was approved for
        > arthrogryposis, on the first try. However, the person that did
        the
        > review said she had seen a child recently that was far worse
        off,
        > yet had been originally denied. I am in Oregon. Our local
        Portland
        > office puts a lot out to the field, and the person I dealt with
        was
        > in Pendleton. I think this helped ease the process. I always got
        a
        > life person when I called with any information. Once the case
        was
        > transferred to Portland, I now deal with things by either mail
        or
        > voice mail.
        > > ----- Original Message -----
        > > From: Tamra Garner
        > > To: avenues2@yahoogroups.com
        > > Sent: Wednesday, April 27, 2005 6:49 AM
        > > Subject: Re: [avenues2] SSI
        > >
        > >
        > > Hello Naomi,
        > > My son, Isaac, receives SSI. The first step is to see
        if
        > your child would
        > > qualify based on your family's income. A quick phone
        call
        > to your local
        > > Social Security Administration office will give you that
        > info based on the
        > > size of your family.
        > >
        > > If you are income eligible, request an application for
        SSI.
        > You will want
        > > to take some time with this, documenting EVERY little
        > limitation that your
        > > child faces. It is helpful if you include anecdotal
        > examples of situations
        > > where those limitations are very obvious. It can be a
        very
        > depressing
        > > process, looking at all your child cannot do, but I
        > compartmentalize this
        > > kind of thinking to the SSI process. The rest of the
        time,
        > I choose to look
        > > at all the things my son can do and has found ways to
        do,
        > his delightful
        > > personality, etc. You will be asked for the names and
        > contact info for the
        > > health care providers your child has seen. Let the
        > providers know you are
        > > applying for SSI, and be sure to give them anecdotal
        > examples of your
        > > child's functioning for their records. Then, they have
        more
        > to document for
        > > SSI than just range of motion measurements, etc. I have
        > found that my son's
        > > physical therapist is invaluable in this process,
        because he
        > sees my son at
        > > least once a week, where the orthopedic doc sees him
        just a
        > few times a
        > > year.
        > >
        > > You will need to submit the completed application with
        proof
        > of income,
        > > registration of vehicles owned, life insurance policies,
        > proof of home
        > > ownership, property taxes, driver's licenses, birth
        > certificates, social
        > > security cards for everyone in the house,etc (SSA will
        give
        > you a list of
        > > things they need to document). They do not accept
        copies;
        > you will need to
        > > take in originals, and they will copy them.
        > >
        > > Then, you wait. And wait. Sometimes, not often,
        approval
        > occurs after this
        > > first application level. This can take about six
        months.
        > Usually, your
        > > application is denied. ALWAYS appeal a denial. Provide
        > more info.
        > > Document with more anecdotes. Ask someone else to
        document
        > their
        > > observations (even a grandma). After appeals, approval
        can
        > take up to 2-3
        > > years, BUT the approval is retroactive to the date of
        you
        > application. This
        > > means that you will get one or two large lump sum checks
        for
        > all of the
        > > previous months, from the time of application to the
        time of
        > approval, once
        > > your child is approved. It also means that your child
        will
        > be covered
        > > retroactively by Medicaid, from the date of your
        application
        > forward. It
        > > means that any payments you have made to Medicaid
        providers
        > must be refunded
        > > to you, and the provider can bill Medicaid for those
        > services.
        > >
        > > If you do not appeal a denial, the application process
        > stops. If you choose
        > > to re-apply at a later date, an approval would only
        start at
        > the time of the
        > > second application.
        > >
        > > I hope this helps. I wish you the best!
        > > Tamra
        > > Mom to Katie-(married and living in Washington State),
        Joel-
        > 15
        > > (football-itis and itching to drive), Isaac-9
        (drummerboy-
        > itis,
        > > arthrogryposis, bilateral Boyd amputations) from the
        > mountains of southern
        > > Colorado
        > >
        > > P.S. I just looked at this signature and want to
        reassure
        > you that Isaac
        > > was approved for SSI for his arthrogryposis alone, prior
        to
        > his amputations.
        > >
        > >
        > >
        > > ----- Original Message -----
        > > From: "MzPleasant1" <mzpleasant1@s...>
        > > To: <avenues2@yahoogroups.com>
        > > Sent: Tuesday, April 26, 2005 10:08 AM
        > > Subject: [avenues2] SSI>
        > > >
        > > > Hello I was wonder is anyone receiving or filed for
        SSI
        > for their
        > > > child, I was told to file for it but wanted to know
        the
        > procedures and
        > > > if anyone with Artho' is receiving it or filed..
        > > >
        > > >
        > > > Thank you
        > > > Naomi
        > >
        > >
        > >
        > >
        > > -----------------------------------------------------------
        ----
        > ---------------
        > > Yahoo! Groups Links
        > >
        > > a.. To visit your group on the web, go to:
        > >
        >
        http://groups.yahoo.com/group/avenues2/<http://groups.yahoo.com/group
        > /avenues2/>
        > >
        > > b.. To unsubscribe from this group, send an email to:
        > > avenues2-unsubscribe@yahoogroups.com
        > >
        > > c.. Your use of Yahoo! Groups is subject to the Yahoo!
        > Terms of Service.
        > >
        > >
        > >
        > > [Non-text portions of this message have been removed]
        > >
        > >
        > >
        > > -------------------------------------------------------------
        ----
        > -------------
        > > Yahoo! Groups Links
        > >
        > > a.. To visit your group on the web, go to:
        > >
        >
        http://groups.yahoo.com/group/avenues2/<http://groups.yahoo.com/group
        > /avenues2/>
        > >
        > > b.. To unsubscribe from this group, send an email to:
        > > avenues2-unsubscribe@yahoogroups.com<mailto:avenues2-
        > unsubscribe@yahoogroups.com?subject=Unsubscribe>
        > >
        > > c.. Your use of Yahoo! Groups is subject to the Yahoo!
        Terms
        > of Service<http://docs.yahoo.com/info/terms/>.
        > >
        > >
        > >
        > > [Non-text portions of this message have been removed]
        > >
        > >
        > >
        > > ---------------------------------------------------------------
        ----
        > -----------
        > > Yahoo! Groups Links
        > >
        > > a.. To visit your group on the web, go to:
        > > http://groups.yahoo.com/group/avenues2/
        > >
        > > b.. To unsubscribe from this group, send an email to:
        > > avenues2-unsubscribe@yahoogroups.com
        > >
        > > c.. Your use of Yahoo! Groups is subject to the Yahoo!
        Terms
        > of Service.
        > >
        > >
        > >
        > > [Non-text portions of this message have been removed]
        >
        >
        >
        >
        >
        > -------------------------------------------------------------------
        -----------
        > Yahoo! Groups Links
        >
        > a.. To visit your group on the web, go to:
        > http://groups.yahoo.com/group/avenues2/
        >
        > b.. To unsubscribe from this group, send an email to:
        > avenues2-unsubscribe@yahoogroups.com
        >
        > c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms
        of Service.
        >
        >
        >
        > [Non-text portions of this message have been removed]





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        http://groups.yahoo.com/group/avenues2/

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        [Non-text portions of this message have been removed]
      • cricket_lighter
        Bev, I ve tried and tried to get Seattle to take Oregon s medicaid but they will not. :( Our only option is to pay out of pocket. Ya like any of us can
        Message 3 of 30 , May 2, 2005
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          Bev, I've tried and tried to get Seattle to take Oregon's medicaid
          but they will not. :( Our only option is to pay out of pocket. Ya
          like any of us can afford that.

          Dr. Mayall use to work in the clinic in the facial crainial area.
          This is who will be doing Bekah jaw surgery.

          Bekah gets SSI too. We only had to apply once but it wasn't until
          she was about 7m. cause someone at Shrinner's said that we wouldn't
          get it since we have 2 cars. Boy were they wrong. I was unable to
          take the needed time before she was 7m to jump all the hoops of the
          system. We had a great DDS worker who walked us step by step until
          we got it. When they ask for documation get as much of it
          yourself. This really helps to speed up the process and do take
          your little one every time. The ladies who work at our local office
          were able to skip the interview this time around cause they knew
          what my dd could do.

          I really hate having to prove she is still disabled every 3 years.
          cricket
        • Beverly R Hanset Burch
          We had it okayed on Bonnie before she was even out of the hospital! Our social worker and a team of doctors are working in unison to try to get Bonnie to the
          Message 4 of 30 , May 2, 2005
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            We had it okayed on Bonnie before she was even out of the hospital!

            Our social worker and a team of doctors are working in unison to try to get Bonnie to the Seattle Clinic. I was told by Seattle that they would take the Medicaid if it were preauthorized.... That is the hard part in my understanding. I figure all things in due time. I would like to go to meet everyone, but I don't know how much it would actually do for Bonnie at this point.

            That is great it is the same doctor.... I still hope Bonnie avoids that surgery. I really think she will.
            ----- Original Message -----
            From: cricket_lighter
            To: avenues2@yahoogroups.com
            Sent: Monday, May 02, 2005 9:21 AM
            Subject: [avenues2] Re: SSI


            Bev, I've tried and tried to get Seattle to take Oregon's medicaid
            but they will not. :( Our only option is to pay out of pocket. Ya
            like any of us can afford that.

            Dr. Mayall use to work in the clinic in the facial crainial area.
            This is who will be doing Bekah jaw surgery.

            Bekah gets SSI too. We only had to apply once but it wasn't until
            she was about 7m. cause someone at Shrinner's said that we wouldn't
            get it since we have 2 cars. Boy were they wrong. I was unable to
            take the needed time before she was 7m to jump all the hoops of the
            system. We had a great DDS worker who walked us step by step until
            we got it. When they ask for documation get as much of it
            yourself. This really helps to speed up the process and do take
            your little one every time. The ladies who work at our local office
            were able to skip the interview this time around cause they knew
            what my dd could do.

            I really hate having to prove she is still disabled every 3 years.
            cricket





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            [Non-text portions of this message have been removed]
          • beki@comcast.net
            I dont mean to butt in, but I was under the impression that the docs in Seattle do surgery for kids that live in Oregon all the time. State funded or not. I am
            Message 5 of 30 , May 2, 2005
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              I dont mean to butt in, but I was under the impression that the docs in Seattle do surgery for kids that live in Oregon all the time. State funded or not. I am sure you have checked into it, but you might want to see who else you can push. Maybe even calling the social worker at the Seattle Clinic for ideas for funding will help. I know some kids have gotten funding through MDA.

              Beki

              -------------- Original message --------------

              > Bev, I've tried and tried to get Seattle to take Oregon's medicaid
              > but they will not. :( Our only option is to pay out of pocket. Ya
              > like any of us can afford that.
              >
              > Dr. Mayall use to work in the clinic in the facial crainial area.
              > This is who will be doing Bekah jaw surgery.
              >
              > Bekah gets SSI too. We only had to apply once but it wasn't until
              > she was about 7m. cause someone at Shrinner's said that we wouldn't
              > get it since we have 2 cars. Boy were they wrong. I was unable to
              > take the needed time before she was 7m to jump all the hoops of the
              > system. We had a great DDS worker who walked us step by step until
              > we got it. When they ask for documation get as much of it
              > yourself. This really helps to speed up the process and do take
              > your little one every time. The ladies who work at our local office
              > were able to skip the interview this time around cause they knew
              > what my dd could do.
              >
              > I really hate having to prove she is still disabled every 3 years.
              > cricket
              >
              >
              >
              >
              >
              >
              >
              > Yahoo! Groups Links
              >
              >
              >
              >
              >
              >
              >

              [Non-text portions of this message have been removed]
            • Beverly R Hanset Burch
              The social worker at Seattle s said I had a 1% chance of getting it covered through OHP/Medicaid. She also said that if you receive Medicaid that you risk
              Message 6 of 30 , May 2, 2005
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                The social worker at Seattle's said I had a 1% chance of getting it covered through OHP/Medicaid. She also said that if you receive Medicaid that you risk loosing it by going there....

                http://www.seattlechildrens.org/our_services/support_services/financial_counseling.asp

                My people here say A. there is no way they would know B. they have never heard of such a thing

                I naturally want to be sure, because Bonnie is tube fed..... we were self pay until we got really poor, which is a blessing because if we had been self pay after her birth or if we had had insurance... the co pays would have made me get a second mortgage or we would be selling the house or you get the idea.... since we are poor now, things are covered. We cannot risk that. I want to go to meet people and learn, learn, learn! But I am fairly confident that we are receiving great care for her now.
                ----- Original Message -----
                From: beki@...
                To: avenues2@yahoogroups.com
                Sent: Monday, May 02, 2005 5:23 PM
                Subject: Re: [avenues2] Re: SSI


                I dont mean to butt in, but I was under the impression that the docs in Seattle do surgery for kids that live in Oregon all the time. State funded or not. I am sure you have checked into it, but you might want to see who else you can push. Maybe even calling the social worker at the Seattle Clinic for ideas for funding will help. I know some kids have gotten funding through MDA.

                Beki

                -------------- Original message --------------

                > Bev, I've tried and tried to get Seattle to take Oregon's medicaid
                > but they will not. :( Our only option is to pay out of pocket. Ya
                > like any of us can afford that.
                >
                > Dr. Mayall use to work in the clinic in the facial crainial area.
                > This is who will be doing Bekah jaw surgery.
                >
                > Bekah gets SSI too. We only had to apply once but it wasn't until
                > she was about 7m. cause someone at Shrinner's said that we wouldn't
                > get it since we have 2 cars. Boy were they wrong. I was unable to
                > take the needed time before she was 7m to jump all the hoops of the
                > system. We had a great DDS worker who walked us step by step until
                > we got it. When they ask for documation get as much of it
                > yourself. This really helps to speed up the process and do take
                > your little one every time. The ladies who work at our local office
                > were able to skip the interview this time around cause they knew
                > what my dd could do.
                >
                > I really hate having to prove she is still disabled every 3 years.
                > cricket
                >
                >
                >
                >
                >
                >
                >
                > Yahoo! Groups Links
                >
                >
                >
                >
                >
                >
                >

                [Non-text portions of this message have been removed]



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                [Non-text portions of this message have been removed]
              • TUCMUM@aol.com
                When Tucker and I come in from Ca. they are not able to get funding from our state program as well because it is California Childrens Services. But they tell
                Message 7 of 30 , May 2, 2005
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                  When Tucker and I come in from Ca. they are not able to get funding from our
                  state program as well because it is California Childrens Services. But they
                  tell me to come any way and they will write it off if they don't cover it. The
                  first time the clinic was told they had to get a providers number from the
                  state after they did all the paper work to get one they were denied and we already
                  had the plane tickets. They said not to worry about it and have seen him
                  every since then for free with out being able to bill anyone. I have never in
                  return seen a bill either. They keep telling me that they are writing them off.
                  Traci Tuckers mom


                  [Non-text portions of this message have been removed]
                • Beverly R Hanset Burch
                  Lucky you! They sent me information but were very strict in that information and on the telephone. ... From: TUCMUM@aol.com To: avenues2@yahoogroups.com Sent:
                  Message 8 of 30 , May 2, 2005
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                    Lucky you! They sent me information but were very strict in that information and on the telephone.
                    ----- Original Message -----
                    From: TUCMUM@...
                    To: avenues2@yahoogroups.com
                    Sent: Monday, May 02, 2005 7:39 PM
                    Subject: Re: [avenues2] Re: SSI


                    When Tucker and I come in from Ca. they are not able to get funding from our
                    state program as well because it is California Childrens Services. But they
                    tell me to come any way and they will write it off if they don't cover it. The
                    first time the clinic was told they had to get a providers number from the
                    state after they did all the paper work to get one they were denied and we already
                    had the plane tickets. They said not to worry about it and have seen him
                    every since then for free with out being able to bill anyone. I have never in
                    return seen a bill either. They keep telling me that they are writing them off.
                    Traci Tuckers mom


                    [Non-text portions of this message have been removed]



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                    [Non-text portions of this message have been removed]
                  • Laila
                    I had my son s surgery done in Seattle, and we had one big bill that insurance didn t fully cover. Their financial person at the hospital said if we lived in
                    Message 9 of 30 , May 2, 2005
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                      I had my son's surgery done in Seattle, and we had one big bill that
                      insurance didn't fully cover. Their financial person at the hospital
                      said if we lived in one of their region's states (WA, OR, AK, etc.) we
                      would have qualified for their financial aid to pay for the bill. So I
                      know they offer some sort of financial aid to people in their region
                      that you can get if your income isn't too high.

                      Laila


                      On May 2, 2005, at 6:23 PM, beki@... wrote:

                      > I dont mean to butt in, but I was under the impression that the docs
                      > in Seattle do surgery for kids that live in Oregon all the time. State
                      > funded or not. I am sure you have checked into it, but you might want
                      > to see who else you can push. Maybe even calling the social worker at
                      > the Seattle Clinic for ideas for funding will help. I know some kids
                      > have gotten funding through MDA.
                      >
                      > Beki
                      >
                      > -------------- Original message --------------
                      >
                      >> Bev, I've tried and tried to get Seattle to take Oregon's medicaid
                      >> but they will not. :( Our only option is to pay out of pocket. Ya
                      >> like any of us can afford that.
                      >>
                      >> Dr. Mayall use to work in the clinic in the facial crainial area.
                      >> This is who will be doing Bekah jaw surgery.
                      >>
                      >> Bekah gets SSI too. We only had to apply once but it wasn't until
                      >> she was about 7m. cause someone at Shrinner's said that we wouldn't
                      >> get it since we have 2 cars. Boy were they wrong. I was unable to
                      >> take the needed time before she was 7m to jump all the hoops of the
                      >> system. We had a great DDS worker who walked us step by step until
                      >> we got it. When they ask for documation get as much of it
                      >> yourself. This really helps to speed up the process and do take
                      >> your little one every time. The ladies who work at our local office
                      >> were able to skip the interview this time around cause they knew
                      >> what my dd could do.
                      >>
                      >> I really hate having to prove she is still disabled every 3 years.
                      >> cricket
                      >>
                      >>
                      >>
                      >>
                      >>
                      >>
                      >>
                      >> Yahoo! Groups Links
                      >>
                      >>
                      >>
                      >>
                      >>
                      >>
                      >>
                      >
                      > [Non-text portions of this message have been removed]
                      >
                      >
                      >
                      >
                      >
                      > Yahoo! Groups Links
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                    • Beverly R Hanset Burch
                      Yeah their region is Alaska, Montana and Idaho. They do not have a reciprocity agreement with Oregon. ... From: Laila To: avenues2@yahoogroups.com Sent:
                      Message 10 of 30 , May 2, 2005
                      • 0 Attachment
                        Yeah their region is Alaska, Montana and Idaho. They do not have a reciprocity agreement with Oregon.
                        ----- Original Message -----
                        From: Laila
                        To: avenues2@yahoogroups.com
                        Sent: Monday, May 02, 2005 9:11 PM
                        Subject: Re: [avenues2] Re: SSI


                        I had my son's surgery done in Seattle, and we had one big bill that
                        insurance didn't fully cover. Their financial person at the hospital
                        said if we lived in one of their region's states (WA, OR, AK, etc.) we
                        would have qualified for their financial aid to pay for the bill. So I
                        know they offer some sort of financial aid to people in their region
                        that you can get if your income isn't too high.

                        Laila


                        On May 2, 2005, at 6:23 PM, beki@... wrote:

                        > I dont mean to butt in, but I was under the impression that the docs
                        > in Seattle do surgery for kids that live in Oregon all the time. State
                        > funded or not. I am sure you have checked into it, but you might want
                        > to see who else you can push. Maybe even calling the social worker at
                        > the Seattle Clinic for ideas for funding will help. I know some kids
                        > have gotten funding through MDA.
                        >
                        > Beki
                        >
                        > -------------- Original message --------------
                        >
                        >> Bev, I've tried and tried to get Seattle to take Oregon's medicaid
                        >> but they will not. :( Our only option is to pay out of pocket. Ya
                        >> like any of us can afford that.
                        >>
                        >> Dr. Mayall use to work in the clinic in the facial crainial area.
                        >> This is who will be doing Bekah jaw surgery.
                        >>
                        >> Bekah gets SSI too. We only had to apply once but it wasn't until
                        >> she was about 7m. cause someone at Shrinner's said that we wouldn't
                        >> get it since we have 2 cars. Boy were they wrong. I was unable to
                        >> take the needed time before she was 7m to jump all the hoops of the
                        >> system. We had a great DDS worker who walked us step by step until
                        >> we got it. When they ask for documation get as much of it
                        >> yourself. This really helps to speed up the process and do take
                        >> your little one every time. The ladies who work at our local office
                        >> were able to skip the interview this time around cause they knew
                        >> what my dd could do.
                        >>
                        >> I really hate having to prove she is still disabled every 3 years.
                        >> cricket
                        >>
                        >>
                        >>
                        >>
                        >>
                        >>
                        >>
                        >> Yahoo! Groups Links
                        >>
                        >>
                        >>
                        >>
                        >>
                        >>
                        >>
                        >
                        > [Non-text portions of this message have been removed]
                        >
                        >
                        >
                        >
                        >
                        > Yahoo! Groups Links
                        >
                        >
                        >
                        >
                        >
                        >
                        >
                        >



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                        [Non-text portions of this message have been removed]
                      • Dee Dee
                        Sorry it took awhile to get back to you.. I forget to check the message boards.. I am surprised medicaid wont pay for it.. We are still working on getting OHP
                        Message 11 of 30 , May 21, 2005
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                          Sorry it took awhile to get back to you.. I forget to check the
                          message boards.. I am surprised medicaid wont pay for it.. We are
                          still working on getting OHP but I was under the impression that
                          they pay for it. I would love to come up and visit.. We should
                          arrange a day or something.. My email is Dharrington6@... if you
                          want to arrange a time or something..

                          -- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                          <b.hansetburch@c...> wrote:
                          > I haven't been able to afford Seattle yet. It will be awhile! I am
                          going to try to get Medicaid to pay it through an out of state
                          waiver. But if you can stop by here, I have sons that love playing
                          with kids.... then we can talk!
                          > ----- Original Message -----
                          > From: Dee Dee
                          > To: avenues2@yahoogroups.com
                          > Sent: Sunday, May 01, 2005 10:26 PM
                          > Subject: [avenues2] Re: SSI
                          >
                          >
                          > That would be so cool!! Have you taken your little one to
                          Seattle
                          > Arthrogryposis clinic yet? They have been such help for us..
                          Maybe
                          > one weekend we could all go out to lunch somewhere..
                          > --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                          > <b.hansetburch@c...> wrote:
                          > > I would love to meet you and Elijah.
                          > > ----- Original Message -----
                          > > From: Dee Dee
                          > > To: avenues2@yahoogroups.com
                          > > Sent: Friday, April 29, 2005 11:30 AM
                          > > Subject: [avenues2] Re: SSI
                          > >
                          > >
                          > > My hubby actually works in Beaverton and we love going to
                          > Portland
                          > > to go shopping..We used to go up there every other weekend
                          > before I
                          > > got pregnant. Now we go up maybe every other month or so.
                          > >
                          > > --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                          > > <b.hansetburch@c...> wrote:
                          > > > I'm in Gresham. Do you ever make it up to the Portland
                          area?
                          > > > ----- Original Message -----
                          > > > From: DEBORAH HARRINGTON
                          > > > To: avenues2@yahoogroups.com
                          > > > Sent: Wednesday, April 27, 2005 2:25 PM
                          > > > Subject: Re: [avenues2] SSI
                          > > >
                          > > >
                          > > > Beverly,
                          > > > what part of Oregon are you in if you don't mind me
                          asking.
                          > I
                          > > have a two and a half year old boy with Arthrogryposis
                          named
                          > Elijah
                          > > and we live in Salem. I was just curious how close we are
                          and
                          > how
                          > > old your daughter is.
                          > > > ----- Original Message -----
                          > > > From: Beverly R Hanset
                          Burch<mailto:b.hansetburch@c...>
                          > > > To:
                          > avenues2@yahoogroups.com<mailto:avenues2@yahoogroups.com>
                          > > > Sent: Wednesday, April 27, 2005 8:27 AM
                          > > > Subject: Re: [avenues2] SSI
                          > > >
                          > > >
                          > > > Before my daughter left the hospital, she was
                          prequalified
                          > for
                          > > SSI. We did a telephone interview, and the doctor submitted
                          the
                          > > necessary papers on her condition. They never needed any
                          > originals.
                          > > When I finally had to go in for a review, they were shocked
                          that
                          > I
                          > > brought her and told us that we could start doing everything
                          by
                          > > telephone. She doesn't look that bad! And she was approved
                          for
                          > > arthrogryposis, on the first try. However, the person that
                          did
                          > the
                          > > review said she had seen a child recently that was far worse
                          > off,
                          > > yet had been originally denied. I am in Oregon. Our local
                          > Portland
                          > > office puts a lot out to the field, and the person I dealt
                          with
                          > was
                          > > in Pendleton. I think this helped ease the process. I always
                          got
                          > a
                          > > life person when I called with any information. Once the
                          case
                          > was
                          > > transferred to Portland, I now deal with things by either
                          mail
                          > or
                          > > voice mail.
                          > > > ----- Original Message -----
                          > > > From: Tamra Garner
                          > > > To: avenues2@yahoogroups.com
                          > > > Sent: Wednesday, April 27, 2005 6:49 AM
                          > > > Subject: Re: [avenues2] SSI
                          > > >
                          > > >
                          > > > Hello Naomi,
                          > > > My son, Isaac, receives SSI. The first step is to
                          see
                          > if
                          > > your child would
                          > > > qualify based on your family's income. A quick
                          phone
                          > call
                          > > to your local
                          > > > Social Security Administration office will give you
                          that
                          > > info based on the
                          > > > size of your family.
                          > > >
                          > > > If you are income eligible, request an application
                          for
                          > SSI.
                          > > You will want
                          > > > to take some time with this, documenting EVERY
                          little
                          > > limitation that your
                          > > > child faces. It is helpful if you include anecdotal
                          > > examples of situations
                          > > > where those limitations are very obvious. It can be
                          a
                          > very
                          > > depressing
                          > > > process, looking at all your child cannot do, but I
                          > > compartmentalize this
                          > > > kind of thinking to the SSI process. The rest of
                          the
                          > time,
                          > > I choose to look
                          > > > at all the things my son can do and has found ways
                          to
                          > do,
                          > > his delightful
                          > > > personality, etc. You will be asked for the names
                          and
                          > > contact info for the
                          > > > health care providers your child has seen. Let the
                          > > providers know you are
                          > > > applying for SSI, and be sure to give them anecdotal
                          > > examples of your
                          > > > child's functioning for their records. Then, they
                          have
                          > more
                          > > to document for
                          > > > SSI than just range of motion measurements, etc. I
                          have
                          > > found that my son's
                          > > > physical therapist is invaluable in this process,
                          > because he
                          > > sees my son at
                          > > > least once a week, where the orthopedic doc sees him
                          > just a
                          > > few times a
                          > > > year.
                          > > >
                          > > > You will need to submit the completed application
                          with
                          > proof
                          > > of income,
                          > > > registration of vehicles owned, life insurance
                          policies,
                          > > proof of home
                          > > > ownership, property taxes, driver's licenses, birth
                          > > certificates, social
                          > > > security cards for everyone in the house,etc (SSA
                          will
                          > give
                          > > you a list of
                          > > > things they need to document). They do not accept
                          > copies;
                          > > you will need to
                          > > > take in originals, and they will copy them.
                          > > >
                          > > > Then, you wait. And wait. Sometimes, not often,
                          > approval
                          > > occurs after this
                          > > > first application level. This can take about six
                          > months.
                          > > Usually, your
                          > > > application is denied. ALWAYS appeal a denial.
                          Provide
                          > > more info.
                          > > > Document with more anecdotes. Ask someone else to
                          > document
                          > > their
                          > > > observations (even a grandma). After appeals,
                          approval
                          > can
                          > > take up to 2-3
                          > > > years, BUT the approval is retroactive to the date
                          of
                          > you
                          > > application. This
                          > > > means that you will get one or two large lump sum
                          checks
                          > for
                          > > all of the
                          > > > previous months, from the time of application to the
                          > time of
                          > > approval, once
                          > > > your child is approved. It also means that your
                          child
                          > will
                          > > be covered
                          > > > retroactively by Medicaid, from the date of your
                          > application
                          > > forward. It
                          > > > means that any payments you have made to Medicaid
                          > providers
                          > > must be refunded
                          > > > to you, and the provider can bill Medicaid for those
                          > > services.
                          > > >
                          > > > If you do not appeal a denial, the application
                          process
                          > > stops. If you choose
                          > > > to re-apply at a later date, an approval would only
                          > start at
                          > > the time of the
                          > > > second application.
                          > > >
                          > > > I hope this helps. I wish you the best!
                          > > > Tamra
                          > > > Mom to Katie-(married and living in Washington
                          State),
                          > Joel-
                          > > 15
                          > > > (football-itis and itching to drive), Isaac-9
                          > (drummerboy-
                          > > itis,
                          > > > arthrogryposis, bilateral Boyd amputations) from the
                          > > mountains of southern
                          > > > Colorado
                          > > >
                          > > > P.S. I just looked at this signature and want to
                          > reassure
                          > > you that Isaac
                          > > > was approved for SSI for his arthrogryposis alone,
                          prior
                          > to
                          > > his amputations.
                          > > >
                          > > >
                          > > >
                          > > > ----- Original Message -----
                          > > > From: "MzPleasant1" <mzpleasant1@s...>
                          > > > To: <avenues2@yahoogroups.com>
                          > > > Sent: Tuesday, April 26, 2005 10:08 AM
                          > > > Subject: [avenues2] SSI>
                          > > > >
                          > > > > Hello I was wonder is anyone receiving or filed
                          for
                          > SSI
                          > > for their
                          > > > > child, I was told to file for it but wanted to
                          know
                          > the
                          > > procedures and
                          > > > > if anyone with Artho' is receiving it or filed..
                          > > > >
                          > > > >
                          > > > > Thank you
                          > > > > Naomi
                          > > >
                          > > >
                          > > >
                          > > >
                          > > > -------------------------------------------------------
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                          > > /avenues2/>
                          > > >
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                          > > Terms of Service.
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                          > > >
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                          > > > [Non-text portions of this message have been removed]
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                          > > > a.. To visit your group on the web, go to:
                          > > >
                          > >
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                          > > /avenues2/>
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                          > > unsubscribe@yahoogroups.com?subject=Unsubscribe>
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                          Yahoo!
                          > Terms
                          > > of Service<http://docs.yahoo.com/info/terms/>.
                          > > >
                          > > >
                          > > >
                          > > > [Non-text portions of this message have been removed]
                          > > >
                          > > >
                          > > >
                          > > > -----------------------------------------------------------
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                          > > -----------
                          > > > Yahoo! Groups Links
                          > > >
                          > > > a.. To visit your group on the web, go to:
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                          > > >
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                        • Dee Dee
                          I haven t got OHP yet but the main reason I wanted it was to do the surgeries up in Seattle. My son has had Vertical Talus repair and needs double hand
                          Message 12 of 30 , May 21, 2005
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                            I haven't got OHP yet but the main reason I wanted it was to do the
                            surgeries up in Seattle. My son has had Vertical Talus repair and
                            needs double hand surgery. That really bums me out that Oregon will
                            not pay for it. It was 1500 out of pocket for my son's Vertical
                            Talus repair.. I dont trust any other Doctor but Doctor Hanel to do
                            the surgery..Crap Oregon SUCKS!!!!!!!

                            --- In avenues2@yahoogroups.com, "cricket_lighter" <jnjakubos@h...>
                            wrote:
                            > Bev, I've tried and tried to get Seattle to take Oregon's medicaid
                            > but they will not. :( Our only option is to pay out of pocket.
                            Ya
                            > like any of us can afford that.
                            >
                            > Dr. Mayall use to work in the clinic in the facial crainial area.
                            > This is who will be doing Bekah jaw surgery.
                            >
                            > Bekah gets SSI too. We only had to apply once but it wasn't until
                            > she was about 7m. cause someone at Shrinner's said that we
                            wouldn't
                            > get it since we have 2 cars. Boy were they wrong. I was unable
                            to
                            > take the needed time before she was 7m to jump all the hoops of
                            the
                            > system. We had a great DDS worker who walked us step by step
                            until
                            > we got it. When they ask for documation get as much of it
                            > yourself. This really helps to speed up the process and do take
                            > your little one every time. The ladies who work at our local
                            office
                            > were able to skip the interview this time around cause they knew
                            > what my dd could do.
                            >
                            > I really hate having to prove she is still disabled every 3
                            years.
                            > cricket
                          • Dee Dee
                            Yeah I learned that the hard way.. After I had Eli s Vertical talus repair I found out that their financial aid would not help us with the bill because we live
                            Message 13 of 30 , May 21, 2005
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                              Yeah I learned that the hard way.. After I had Eli's Vertical talus
                              repair I found out that their financial aid would not help us with
                              the bill because we live in Oregon. So we had to pay for it out of
                              pocket. Luckily our insurance pays 80%... Crap I was so hoping OHP
                              would cover my son's surgery on his hands.. I am tottaly bummed out
                              now!!
                              --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                              <b.hansetburch@c...> wrote:
                              > Yeah their region is Alaska, Montana and Idaho. They do not have a
                              reciprocity agreement with Oregon.
                              > ----- Original Message -----
                              > From: Laila
                              > To: avenues2@yahoogroups.com
                              > Sent: Monday, May 02, 2005 9:11 PM
                              > Subject: Re: [avenues2] Re: SSI
                              >
                              >
                              > I had my son's surgery done in Seattle, and we had one big bill
                              that
                              > insurance didn't fully cover. Their financial person at the
                              hospital
                              > said if we lived in one of their region's states (WA, OR, AK,
                              etc.) we
                              > would have qualified for their financial aid to pay for the
                              bill. So I
                              > know they offer some sort of financial aid to people in their
                              region
                              > that you can get if your income isn't too high.
                              >
                              > Laila
                              >
                              >
                              > On May 2, 2005, at 6:23 PM, beki@c... wrote:
                              >
                              > > I dont mean to butt in, but I was under the impression that
                              the docs
                              > > in Seattle do surgery for kids that live in Oregon all the
                              time. State
                              > > funded or not. I am sure you have checked into it, but you
                              might want
                              > > to see who else you can push. Maybe even calling the social
                              worker at
                              > > the Seattle Clinic for ideas for funding will help. I know
                              some kids
                              > > have gotten funding through MDA.
                              > >
                              > > Beki
                              > >
                              > > -------------- Original message --------------
                              > >
                              > >> Bev, I've tried and tried to get Seattle to take Oregon's
                              medicaid
                              > >> but they will not. :( Our only option is to pay out of
                              pocket. Ya
                              > >> like any of us can afford that.
                              > >>
                              > >> Dr. Mayall use to work in the clinic in the facial crainial
                              area.
                              > >> This is who will be doing Bekah jaw surgery.
                              > >>
                              > >> Bekah gets SSI too. We only had to apply once but it wasn't
                              until
                              > >> she was about 7m. cause someone at Shrinner's said that we
                              wouldn't
                              > >> get it since we have 2 cars. Boy were they wrong. I was
                              unable to
                              > >> take the needed time before she was 7m to jump all the hoops
                              of the
                              > >> system. We had a great DDS worker who walked us step by step
                              until
                              > >> we got it. When they ask for documation get as much of it
                              > >> yourself. This really helps to speed up the process and do
                              take
                              > >> your little one every time. The ladies who work at our local
                              office
                              > >> were able to skip the interview this time around cause they
                              knew
                              > >> what my dd could do.
                              > >>
                              > >> I really hate having to prove she is still disabled every 3
                              years.
                              > >> cricket
                              > >>
                              > >>
                              > >>
                              > >>
                              > >>
                              > >>
                              > >>
                              > >> Yahoo! Groups Links
                              > >>
                              > >>
                              > >>
                              > >>
                              > >>
                              > >>
                              > >>
                              > >
                              > > [Non-text portions of this message have been removed]
                              > >
                              > >
                              > >
                              > >
                              > >
                              > > Yahoo! Groups Links
                              > >
                              > >
                              > >
                              > >
                              > >
                              > >
                              > >
                              > >
                              >
                              >
                              >
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                              > [Non-text portions of this message have been removed]
                            • Beverly R Hanset Burch
                              OHP only pays for things in state. If a service is being met in state, they won t send you out.... I ll write you directly later... like when she is asleep or
                              Message 14 of 30 , May 21, 2005
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                                OHP only pays for things in state. If a service is being met in state, they won't send you out.... I'll write you directly later... like when she is asleep or something!
                                ----- Original Message -----
                                From: Dee Dee
                                To: avenues2@yahoogroups.com
                                Sent: Saturday, May 21, 2005 4:34 PM
                                Subject: [avenues2] Re: SSI


                                Sorry it took awhile to get back to you.. I forget to check the
                                message boards.. I am surprised medicaid wont pay for it.. We are
                                still working on getting OHP but I was under the impression that
                                they pay for it. I would love to come up and visit.. We should
                                arrange a day or something.. My email is Dharrington6@... if you
                                want to arrange a time or something..

                                -- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                                <b.hansetburch@c...> wrote:
                                > I haven't been able to afford Seattle yet. It will be awhile! I am
                                going to try to get Medicaid to pay it through an out of state
                                waiver. But if you can stop by here, I have sons that love playing
                                with kids.... then we can talk!
                                > ----- Original Message -----
                                > From: Dee Dee
                                > To: avenues2@yahoogroups.com
                                > Sent: Sunday, May 01, 2005 10:26 PM
                                > Subject: [avenues2] Re: SSI
                                >
                                >
                                > That would be so cool!! Have you taken your little one to
                                Seattle
                                > Arthrogryposis clinic yet? They have been such help for us..
                                Maybe
                                > one weekend we could all go out to lunch somewhere..
                                > --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                                > <b.hansetburch@c...> wrote:
                                > > I would love to meet you and Elijah.
                                > > ----- Original Message -----
                                > > From: Dee Dee
                                > > To: avenues2@yahoogroups.com
                                > > Sent: Friday, April 29, 2005 11:30 AM
                                > > Subject: [avenues2] Re: SSI
                                > >
                                > >
                                > > My hubby actually works in Beaverton and we love going to
                                > Portland
                                > > to go shopping..We used to go up there every other weekend
                                > before I
                                > > got pregnant. Now we go up maybe every other month or so.
                                > >
                                > > --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                                > > <b.hansetburch@c...> wrote:
                                > > > I'm in Gresham. Do you ever make it up to the Portland
                                area?
                                > > > ----- Original Message -----
                                > > > From: DEBORAH HARRINGTON
                                > > > To: avenues2@yahoogroups.com
                                > > > Sent: Wednesday, April 27, 2005 2:25 PM
                                > > > Subject: Re: [avenues2] SSI
                                > > >
                                > > >
                                > > > Beverly,
                                > > > what part of Oregon are you in if you don't mind me
                                asking.
                                > I
                                > > have a two and a half year old boy with Arthrogryposis
                                named
                                > Elijah
                                > > and we live in Salem. I was just curious how close we are
                                and
                                > how
                                > > old your daughter is.
                                > > > ----- Original Message -----
                                > > > From: Beverly R Hanset
                                Burch<mailto:b.hansetburch@c...>
                                > > > To:
                                > avenues2@yahoogroups.com<mailto:avenues2@yahoogroups.com>
                                > > > Sent: Wednesday, April 27, 2005 8:27 AM
                                > > > Subject: Re: [avenues2] SSI
                                > > >
                                > > >
                                > > > Before my daughter left the hospital, she was
                                prequalified
                                > for
                                > > SSI. We did a telephone interview, and the doctor submitted
                                the
                                > > necessary papers on her condition. They never needed any
                                > originals.
                                > > When I finally had to go in for a review, they were shocked
                                that
                                > I
                                > > brought her and told us that we could start doing everything
                                by
                                > > telephone. She doesn't look that bad! And she was approved
                                for
                                > > arthrogryposis, on the first try. However, the person that
                                did
                                > the
                                > > review said she had seen a child recently that was far worse
                                > off,
                                > > yet had been originally denied. I am in Oregon. Our local
                                > Portland
                                > > office puts a lot out to the field, and the person I dealt
                                with
                                > was
                                > > in Pendleton. I think this helped ease the process. I always
                                got
                                > a
                                > > life person when I called with any information. Once the
                                case
                                > was
                                > > transferred to Portland, I now deal with things by either
                                mail
                                > or
                                > > voice mail.
                                > > > ----- Original Message -----
                                > > > From: Tamra Garner
                                > > > To: avenues2@yahoogroups.com
                                > > > Sent: Wednesday, April 27, 2005 6:49 AM
                                > > > Subject: Re: [avenues2] SSI
                                > > >
                                > > >
                                > > > Hello Naomi,
                                > > > My son, Isaac, receives SSI. The first step is to
                                see
                                > if
                                > > your child would
                                > > > qualify based on your family's income. A quick
                                phone
                                > call
                                > > to your local
                                > > > Social Security Administration office will give you
                                that
                                > > info based on the
                                > > > size of your family.
                                > > >
                                > > > If you are income eligible, request an application
                                for
                                > SSI.
                                > > You will want
                                > > > to take some time with this, documenting EVERY
                                little
                                > > limitation that your
                                > > > child faces. It is helpful if you include anecdotal
                                > > examples of situations
                                > > > where those limitations are very obvious. It can be
                                a
                                > very
                                > > depressing
                                > > > process, looking at all your child cannot do, but I
                                > > compartmentalize this
                                > > > kind of thinking to the SSI process. The rest of
                                the
                                > time,
                                > > I choose to look
                                > > > at all the things my son can do and has found ways
                                to
                                > do,
                                > > his delightful
                                > > > personality, etc. You will be asked for the names
                                and
                                > > contact info for the
                                > > > health care providers your child has seen. Let the
                                > > providers know you are
                                > > > applying for SSI, and be sure to give them anecdotal
                                > > examples of your
                                > > > child's functioning for their records. Then, they
                                have
                                > more
                                > > to document for
                                > > > SSI than just range of motion measurements, etc. I
                                have
                                > > found that my son's
                                > > > physical therapist is invaluable in this process,
                                > because he
                                > > sees my son at
                                > > > least once a week, where the orthopedic doc sees him
                                > just a
                                > > few times a
                                > > > year.
                                > > >
                                > > > You will need to submit the completed application
                                with
                                > proof
                                > > of income,
                                > > > registration of vehicles owned, life insurance
                                policies,
                                > > proof of home
                                > > > ownership, property taxes, driver's licenses, birth
                                > > certificates, social
                                > > > security cards for everyone in the house,etc (SSA
                                will
                                > give
                                > > you a list of
                                > > > things they need to document). They do not accept
                                > copies;
                                > > you will need to
                                > > > take in originals, and they will copy them.
                                > > >
                                > > > Then, you wait. And wait. Sometimes, not often,
                                > approval
                                > > occurs after this
                                > > > first application level. This can take about six
                                > months.
                                > > Usually, your
                                > > > application is denied. ALWAYS appeal a denial.
                                Provide
                                > > more info.
                                > > > Document with more anecdotes. Ask someone else to
                                > document
                                > > their
                                > > > observations (even a grandma). After appeals,
                                approval
                                > can
                                > > take up to 2-3
                                > > > years, BUT the approval is retroactive to the date
                                of
                                > you
                                > > application. This
                                > > > means that you will get one or two large lump sum
                                checks
                                > for
                                > > all of the
                                > > > previous months, from the time of application to the
                                > time of
                                > > approval, once
                                > > > your child is approved. It also means that your
                                child
                                > will
                                > > be covered
                                > > > retroactively by Medicaid, from the date of your
                                > application
                                > > forward. It
                                > > > means that any payments you have made to Medicaid
                                > providers
                                > > must be refunded
                                > > > to you, and the provider can bill Medicaid for those
                                > > services.
                                > > >
                                > > > If you do not appeal a denial, the application
                                process
                                > > stops. If you choose
                                > > > to re-apply at a later date, an approval would only
                                > start at
                                > > the time of the
                                > > > second application.
                                > > >
                                > > > I hope this helps. I wish you the best!
                                > > > Tamra
                                > > > Mom to Katie-(married and living in Washington
                                State),
                                > Joel-
                                > > 15
                                > > > (football-itis and itching to drive), Isaac-9
                                > (drummerboy-
                                > > itis,
                                > > > arthrogryposis, bilateral Boyd amputations) from the
                                > > mountains of southern
                                > > > Colorado
                                > > >
                                > > > P.S. I just looked at this signature and want to
                                > reassure
                                > > you that Isaac
                                > > > was approved for SSI for his arthrogryposis alone,
                                prior
                                > to
                                > > his amputations.
                                > > >
                                > > >
                                > > >
                                > > > ----- Original Message -----
                                > > > From: "MzPleasant1" <mzpleasant1@s...>
                                > > > To: <avenues2@yahoogroups.com>
                                > > > Sent: Tuesday, April 26, 2005 10:08 AM
                                > > > Subject: [avenues2] SSI>
                                > > > >
                                > > > > Hello I was wonder is anyone receiving or filed
                                for
                                > SSI
                                > > for their
                                > > > > child, I was told to file for it but wanted to
                                know
                                > the
                                > > procedures and
                                > > > > if anyone with Artho' is receiving it or filed..
                                > > > >
                                > > > >
                                > > > > Thank you
                                > > > > Naomi
                                > > >
                                > > >
                                > > >
                                > > >
                                > > > -------------------------------------------------------
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                                > ----
                                > > ---------------
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                                > > >
                                > > > a.. To visit your group on the web, go to:
                                > > >
                                > >
                                >
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                                > > /avenues2/>
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                                to:
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                                > > Terms of Service.
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                                [Non-text portions of this message have been removed]
                              • Beverly R Hanset Burch
                                There is a chance... I was told odds are one in one hundred. Letter writing from your doctors. Get the chart notes, see if they will support it. We have a
                                Message 15 of 30 , May 21, 2005
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                                  There is a chance... I was told odds are one in one hundred. Letter writing from your doctors. Get the chart notes, see if they will support it. We have a neurodevelopmental pediatrician that is going to really work hard to have Bonnie head to Seattle..... but it is a long shot. I might just have to pay out of pocket. Lottery tickets anyone? I don't buy them, but man finding a winning ticket would sure be nice!
                                  ----- Original Message -----
                                  From: Dee Dee
                                  To: avenues2@yahoogroups.com
                                  Sent: Saturday, May 21, 2005 4:37 PM
                                  Subject: [avenues2] Re: SSI


                                  I haven't got OHP yet but the main reason I wanted it was to do the
                                  surgeries up in Seattle. My son has had Vertical Talus repair and
                                  needs double hand surgery. That really bums me out that Oregon will
                                  not pay for it. It was 1500 out of pocket for my son's Vertical
                                  Talus repair.. I dont trust any other Doctor but Doctor Hanel to do
                                  the surgery..Crap Oregon SUCKS!!!!!!!

                                  --- In avenues2@yahoogroups.com, "cricket_lighter" <jnjakubos@h...>
                                  wrote:
                                  > Bev, I've tried and tried to get Seattle to take Oregon's medicaid
                                  > but they will not. :( Our only option is to pay out of pocket.
                                  Ya
                                  > like any of us can afford that.
                                  >
                                  > Dr. Mayall use to work in the clinic in the facial crainial area.
                                  > This is who will be doing Bekah jaw surgery.
                                  >
                                  > Bekah gets SSI too. We only had to apply once but it wasn't until
                                  > she was about 7m. cause someone at Shrinner's said that we
                                  wouldn't
                                  > get it since we have 2 cars. Boy were they wrong. I was unable
                                  to
                                  > take the needed time before she was 7m to jump all the hoops of
                                  the
                                  > system. We had a great DDS worker who walked us step by step
                                  until
                                  > we got it. When they ask for documation get as much of it
                                  > yourself. This really helps to speed up the process and do take
                                  > your little one every time. The ladies who work at our local
                                  office
                                  > were able to skip the interview this time around cause they knew
                                  > what my dd could do.
                                  >
                                  > I really hate having to prove she is still disabled every 3
                                  years.
                                  > cricket




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                                  [Non-text portions of this message have been removed]
                                • mmheinen
                                  This might sound like a stupid question, but is there any benefit to apply for SSI for your child even if you know you exceed the income/resource limits? Is
                                  Message 16 of 30 , Aug 19 7:56 PM
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                                    This might sound like a stupid question, but is there any benefit to
                                    apply for SSI for your child even if you know you exceed the
                                    income/resource limits? Is there some value in simply having the
                                    designation perhaps for a future time or perhaps to qualify for other
                                    programs? I am in process of applying for Medical Assistance/TEFRA and
                                    thought if there is any good reason to apply for SSI now would be the
                                    time since I am collecting letters from doctors and therapists, etc.
                                    Mary


                                    [Non-text portions of this message have been removed]
                                  • Beverly R Hanset Burch
                                    Yes. We don t get any SSI cash at this point, but we get 20 hours a month respite care and full Medicaid for our daughter. We are over income as far as SSI is
                                    Message 17 of 30 , Aug 19 8:16 PM
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                                      Yes.
                                      We don't get any SSI cash at this point, but we get 20 hours a month respite care and full Medicaid for our daughter. We are over income as far as SSI is concerned. But there is a 'waiver', which varies state to state, and it covers insurance issues above and beyond any regular insurance. In most states it is called the Katie Becker(?) waiver.... we are in Oregon and I was told it is a 'waiver'.
                                      If you are insured with a private insurance and also have Medicaid, Medicaid will pick up copays.
                                      ----- Original Message -----
                                      From: mmheinen
                                      To: avenues2@yahoogroups.com
                                      Sent: Friday, August 19, 2005 7:56 PM
                                      Subject: [avenues2] SSI


                                      This might sound like a stupid question, but is there any benefit to
                                      apply for SSI for your child even if you know you exceed the
                                      income/resource limits? Is there some value in simply having the
                                      designation perhaps for a future time or perhaps to qualify for other
                                      programs? I am in process of applying for Medical Assistance/TEFRA and
                                      thought if there is any good reason to apply for SSI now would be the
                                      time since I am collecting letters from doctors and therapists, etc.
                                      Mary


                                      [Non-text portions of this message have been removed]



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                                    • mmheinen
                                      Regarding you note about receiving Medicaid and Waivers.we can potentially qualify for respite care and some other things through our state if we qualify for
                                      Message 18 of 30 , Aug 20 5:12 AM
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                                        Regarding you note about receiving Medicaid and Waivers.we can
                                        potentially qualify for respite care and some other things through our
                                        state if we qualify for Medical Assistance but we must be approved for
                                        Medical Assistance first. So perhaps the SSI really has no value for
                                        us.

                                        -----Original Message-----
                                        From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On
                                        Behalf Of Beverly R Hanset Burch
                                        Sent: Friday, August 19, 2005 10:17 PM
                                        To: avenues2@yahoogroups.com
                                        Subject: Re: [avenues2] SSI

                                        Yes.
                                        We don't get any SSI cash at this point, but we get 20 hours a month
                                        respite care and full Medicaid for our daughter. We are over income as
                                        far as SSI is concerned. But there is a 'waiver', which varies state to
                                        state, and it covers insurance issues above and beyond any regular
                                        insurance. In most states it is called the Katie Becker(?) waiver.... we
                                        are in Oregon and I was told it is a 'waiver'.
                                        If you are insured with a private insurance and also have Medicaid,
                                        Medicaid will pick up copays.
                                        ----- Original Message -----
                                        From: mmheinen
                                        To: avenues2@yahoogroups.com
                                        Sent: Friday, August 19, 2005 7:56 PM
                                        Subject: [avenues2] SSI


                                        This might sound like a stupid question, but is there any benefit to
                                        apply for SSI for your child even if you know you exceed the
                                        income/resource limits? Is there some value in simply having the
                                        designation perhaps for a future time or perhaps to qualify for other
                                        programs? I am in process of applying for Medical Assistance/TEFRA and
                                        thought if there is any good reason to apply for SSI now would be the
                                        time since I am collecting letters from doctors and therapists, etc.

                                        Mary


                                        [Non-text portions of this message have been removed]



                                        SPONSORED LINKS Published Disabled Avenue
                                        Disabled people Disabled veterans For the disabled


                                        ------------------------------------------------------------------------
                                        ------
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                                        a.. Visit your group "avenues2" on the web.

                                        b.. To unsubscribe from this group, send an email to:
                                        avenues2-unsubscribe@yahoogroups.com

                                        c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                                        Service.


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