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Re: [fasd_task_force] Preparing for mediation for Regional Center Denial of Eligibility

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  • Amber Kesterson
    Val, I sat in on a hearing with a good friend of mine, her son (I think he was 19, 20 at the time) and our ED from Area Board and the decision was still
    Message 1 of 6 , Mar 8, 2013
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      Val,
      I sat in on a hearing with a good friend of mine, her son (I think he was 19, 20 at the time) and our ED from Area Board and the decision was still against services.  I don't have any suggestions other than take lots of info on Executive Functioning and how your son invariably fails at doing it. 
      When I started with my first son it took us about 4yrs (he was 10 when they finally accepted him) with an IQ of 84. His dx started with PDD-NOS and qualified under Fifth Category. They have since moved him to Autism. My second has an IQ of 77 and qualified under Fifth Category but was seen by the RC Dev Peds and moved to the ID category. (saving grace was he studied at UNW and familiar with FAS) and my 3rd son's IQ was 63.  Not much help, but I kept going back with new info as it surfaced with their behaviors.

      Amber 
      Sent from my iPhone 


      On Mar 8, 2013, at 5:07 PM, Valerie Lipow <vallipow@...> wrote:

       

      My son, Ethan, was found "not eligible" fror services by the San Diego Regional Center because his FSIQ was 81. I appealed the decision, and a mediation has been scheduled for April 4. The state level fair hearing has been scheduled for April 10.
       
      I would like to talk to someone who participated in a mediation from the State of California Office of Administrative Hearings after a regional center denied services to their child with FASD based on an IQ of 70 or higher, and where the mediation resulted in the regional center either reversing its decision OR agreeing to do additional assessments to see if the child would be eligible despite an IQ above 70.
       
      I need suggestions on what I must do before the mediation. I know I can invite anyone I want to come with me to the meeting, but I'm not sure who to invite.
       
      If you or someone you know has "been there, done that" and goot there FASD-affected child services, please contact me.
       
      Thanks!
      Val
      Valerie Lipow
      2641 Brighton Rd. | Carlsbad, CA 92010
      760.730.1972 H | 619.553.5450 O | 760.845.1650 M
      vallipow@...

    • Shelley Cole
      As you know, Val, we just went through the same thing. After 2 rejections from the Santa Barbara Tri-Counties Regional Center, we tried again in Napa. A
      Message 2 of 6 , Mar 9, 2013
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        As you know, Val, we just went through the same thing.  After 2 rejections from the Santa Barbara Tri-Counties Regional Center, we tried again in Napa.  A social worker actually came to where Sarah lives and spent more than an hour asking her questions.  The worker told us frankly that she was borderline, didn't have one of the "big 5" diagnoses and presented as a smart, fairly capable young lady.  I gave them reams of evidence to the contrary, on paper and verbally, and the worker took it to the fair hearing.

        In Napa, the parents do not attend the hearing in person, but by phone.  A table of psychologist, officer of the regional center and social worker addresses the parent with questions and releases their opinion later.  Basically, Sarah was deemed "not disabled enough."  And that's the end of that.

        She was also rejected at Social Security for the third time.  And a lawyer in Napa is launching his appeal, confident that the judge will see through her eloquent responses to the child who thinks like a 13-year-old and cannot anticipate anything in the future -- A child in jeopardy if left on her own.  SS kept her request papers -- this time -- for an entire year, claiming back log and a significant increase in disability claims.

        My 59-year-old cousin twisted her knee at Macy's and got disability on the spot along with a leave of absence from  her job, plus all benefits and almost full salary and store discounts to continue.  When I complained to the lawyer (since my cousin is now on a kind of vacation, going to the gym, shopping, having expensive hair and nail appointments), he said older people get disability awards faster. I selfishly resent my cousin, since she is fully capable of managing her life, while my daughter, if not given all the services we now pay for, would wind up on the streets somewhere.

        I'm also upset with the DM IV or whatever it's called for not listing FASD as a diagnosis but including eating disorders.  When will people wake up?

        I could have appealed the RC decision again and gone to court and argued her case, but the officers made it very clear to me that they were not interested in her FASD and unless she could be proven by her school records to have Down's, Autism or very significant learning delays (learning disabilities are also unacceptable), they would only turn her away again.

        I keep coming away with "Maybe she's not disabled," until she spends her entire paycheck on dinners with friends, leaving nothing for her share of her rent, or walks to work in a heavy rain, arriving soaked through.

        The whole project is so dis-heartening.  I'm sorry I have no words of encouragement.  We need to change the law.  We need recognition of the syndrome.  We need action on the state level.  We need help in high places.

        Good luck, Val.

        Shelley Cole

        On Mar 8, 2013, at 5:07 PM, Valerie Lipow <vallipow@...> wrote:

         

        My son, Ethan, was found "not eligible" fror services by the San Diego Regional Center because his FSIQ was 81. I appealed the decision, and a mediation has been scheduled for April 4. The state level fair hearing has been scheduled for April 10.
         
        I would like to talk to someone who participated in a mediation from the State of California Office of Administrative Hearings after a regional center denied services to their child with FASD based on an IQ of 70 or higher, and where the mediation resulted in the regional center either reversing its decision OR agreeing to do additional assessments to see if the child would be eligible despite an IQ above 70.
         
        I need suggestions on what I must do before the mediation. I know I can invite anyone I want to come with me to the meeting, but I'm not sure who to invite.
         
        If you or someone you know has "been there, done that" and goot there FASD-affected child services, please contact me.
         
        Thanks!
        Val
        Valerie Lipow
        2641 Brighton Rd. | Carlsbad, CA 92010
        760.730.1972 H | 619.553.5450 O | 760.845.1650 M
        vallipow@...


      • Tammy Gless
        Val, I m sorry I too don t have a success story to add. My son, Danny, was also rejected by Central Valley Regional Center because of his IQ. I get so
        Message 3 of 6 , Mar 17, 2013
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          Val,

          I'm sorry I too don't have a success story to add.  My son, Danny, was also rejected by Central Valley Regional Center because of his IQ.  I get so infuriated  as IQ means little in a person affected with FASD.  I truly think it is discrimination to use "IQ" as a screening tool for disability.  Danny, bless his heart, would love to join the military, but he hasn't been able to pass the ASVAB despite multiple attempts (secretly I thank God :)).  I would love to view the ASVAB, perhaps a similar test would be more appropriate for assessing abilities.  Danny is 20 years old now; I'm quite concerned as to how he will be able to care for himself, I won't live forever. 

          I sincerely wish you much success!

          Tammy

          On Fri, Mar 8, 2013 at 5:07 PM, Valerie Lipow <vallipow@...> wrote:
           

          My son, Ethan, was found "not eligible" fror services by the San Diego Regional Center because his FSIQ was 81. I appealed the decision, and a mediation has been scheduled for April 4. The state level fair hearing has been scheduled for April 10.
           
          I would like to talk to someone who participated in a mediation from the State of California Office of Administrative Hearings after a regional center denied services to their child with FASD based on an IQ of 70 or higher, and where the mediation resulted in the regional center either reversing its decision OR agreeing to do additional assessments to see if the child would be eligible despite an IQ above 70.
           
          I need suggestions on what I must do before the mediation. I know I can invite anyone I want to come with me to the meeting, but I'm not sure who to invite.
           
          If you or someone you know has "been there, done that" and goot there FASD-affected child services, please contact me.
           
          Thanks!
          Val
          Valerie Lipow
          2641 Brighton Rd. | Carlsbad, CA 92010


        • kathryn page
          nope the asvab isn t a great fasd-detector either.  my son scored way up there...but actually reasons like a slow 7-year-old with no empathy and no impulse
          Message 4 of 6 , Mar 17, 2013
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            nope the asvab isn't a great fasd-detector either.  my son scored way up there...but actually reasons like a slow 7-year-old with no empathy and no impulse control.


            From: Tammy Gless <tammygless@...>
            To: fasd_task_force@yahoogroups.com
            Sent: Sunday, March 17, 2013 10:08 AM
            Subject: Re: [fasd_task_force] Preparing for mediation for Regional Center Denial of Eligibility

             
            Val,

            I'm sorry I too don't have a success story to add.  My son, Danny, was also rejected by Central Valley Regional Center because of his IQ.  I get so infuriated  as IQ means little in a person affected with FASD.  I truly think it is discrimination to use "IQ" as a screening tool for disability.  Danny, bless his heart, would love to join the military, but he hasn't been able to pass the ASVAB despite multiple attempts (secretly I thank God :)).  I would love to view the ASVAB, perhaps a similar test would be more appropriate for assessing abilities.  Danny is 20 years old now; I'm quite concerned as to how he will be able to care for himself, I won't live forever. 

            I sincerely wish you much success!

            Tammy

            On Fri, Mar 8, 2013 at 5:07 PM, Valerie Lipow <vallipow@...> wrote:
             
            My son, Ethan, was found "not eligible" fror services by the San Diego Regional Center because his FSIQ was 81. I appealed the decision, and a mediation has been scheduled for April 4. The state level fair hearing has been scheduled for April 10.
             
            I would like to talk to someone who participated in a mediation from the State of California Office of Administrative Hearings after a regional center denied services to their child with FASD based on an IQ of 70 or higher, and where the mediation resulted in the regional center either reversing its decision OR agreeing to do additional assessments to see if the child would be eligible despite an IQ above 70.
             
            I need suggestions on what I must do before the mediation. I know I can invite anyone I want to come with me to the meeting, but I'm not sure who to invite.
             
            If you or someone you know has "been there, done that" and goot there FASD-affected child services, please contact me.
             
            Thanks!
            Val
            Valerie Lipow
            2641 Brighton Rd. | Carlsbad, CA 92010



          • Shelley Cole
            The impulse control is major as they get older. Money just disappears. Decisions are random and dangerous. Especially for girls as the Internet predators
            Message 5 of 6 , Mar 17, 2013
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              The impulse control is major as they get older.  Money just disappears.  Decisions are random and dangerous.  Especially for girls as the Internet predators are on the lookout for them.  Several found my daughter and showed up at our house.  Fun.  Empathy is a puzzler.  I noticed that too, more when she was little.  But even now, she brushes off really nice girls who could be her friends, because they aren't what she thinks they should be.  No sympathy for the issues they are facing or difficulties they find themselves in.  So she has only one friend, and that friend smokes and drinks.  Another worry for Mom.

              On Mar 17, 2013, at 10:23 AM, kathryn page <kthrynpg@...> wrote:

               

              nope the asvab isn't a great fasd-detector either.  my son scored way up there...but actually reasons like a slow 7-year-old with no empathy and no impulse control.


              From: Tammy Gless <tammygless@...>
              To: fasd_task_force@yahoogroups.com
              Sent: Sunday, March 17, 2013 10:08 AM
              Subject: Re: [fasd_task_force] Preparing for mediation for Regional Center Denial of Eligibility

               
              Val,

              I'm sorry I too don't have a success story to add.  My son, Danny, was also rejected by Central Valley Regional Center because of his IQ.  I get so infuriated  as IQ means little in a person affected with FASD.  I truly think it is discrimination to use "IQ" as a screening tool for disability.  Danny, bless his heart, would love to join the military, but he hasn't been able to pass the ASVAB despite multiple attempts (secretly I thank God :)).  I would love to view the ASVAB, perhaps a similar test would be more appropriate for assessing abilities.  Danny is 20 years old now; I'm quite concerned as to how he will be able to care for himself, I won't live forever. 

              I sincerely wish you much success!

              Tammy

              On Fri, Mar 8, 2013 at 5:07 PM, Valerie Lipow <vallipow@...> wrote:
               
              My son, Ethan, was found "not eligible" fror services by the San Diego Regional Center because his FSIQ was 81. I appealed the decision, and a mediation has been scheduled for April 4. The state level fair hearing has been scheduled for April 10.
               
              I would like to talk to someone who participated in a mediation from the State of California Office of Administrative Hearings after a regional center denied services to their child with FASD based on an IQ of 70 or higher, and where the mediation resulted in the regional center either reversing its decision OR agreeing to do additional assessments to see if the child would be eligible despite an IQ above 70.
               
              I need suggestions on what I must do before the mediation. I know I can invite anyone I want to come with me to the meeting, but I'm not sure who to invite.
               
              If you or someone you know has "been there, done that" and goot there FASD-affected child services, please contact me.
               
              Thanks!
              Val
              Valerie Lipow
              2641 Brighton Rd. | Carlsbad, CA 92010





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