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Special Needs Mama at tax time

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  • patsarah2006
    Special Needs Mama Money Matters Medical…medical…medical. So went the refrain as I categorized transactions from my checking and credit card accounts in
    Message 1 of 6 , Apr 1, 2008
      Special Needs Mama
      Money Matters
      "Medical…medical…medical." So went the refrain as I categorized
      transactions from my checking and credit card accounts in preparation
      for the tax man this week. Prescription drugs (medical); doctor's
      visits (medical); premiums (medical); copayments (medical). A family
      member once asked, apropos of Evan, "How are you managing?" and while
      I thought he meant, "How are you managing emotionally?" he went on to
      add, "Have you gone broke yet over this kid?"

      The bills from Evan's hospital stay used to shock me with their
      astronomical amounts: during that time, the kid cost thousands and
      thousands of dollars a day, and as those days added up to months, the
      amounts became absurd. In toto, Evan was a million dollar baby, and I
      used to joke that I couldn't bring myself to get angry with him. "He
      was too expensive," I'd say. "How can you get mad at a kid who cost a
      million dollars?"

      Even my accountant, that first winter Evan came home, had his own bit
      of financial editorializing about our new lives as the parents of a
      child with disabilities. First, he took a look at Evan in his car
      seat, the oxygen tank in the basket below and the canula taped to his
      face. "That's gotta be rough," he said. When I told him Evan had been
      a twin, and that his sister had died, Jim rubbed his hands together
      and announced, "Hey, look at it this way: there's another deduction.
      Of course you need a social security number." There came a
      pause. "Did I really just say that? God, I'm sorry."

      "No, it's okay," I said. To this day, when I remind Jim of the story,
      he winces. But for me, the anecdote is emblematic of just how far-
      reaching money matters can be in the world of special needs. Tax
      deductions indeed.

      ~

      From that first appointment with Jim, and in the first months after
      Evan came home, I quickly learned that money matters would never be
      far from my mind. I'm the one in our household to handle the
      finances, and I quickly saw how the services, therapies, bills and co-
      payments could easily rack up. Despite that extra tax deduction, the
      meter just kept running on my million dollar baby. To ease the
      burden, I began to navigate the world of social services, seeking
      out, like most parents of kids with disabilities, governmental
      support.

      I found that in the state where we live, social services are
      remarkably generous. There is an entitlement program built into the
      state budget that assures kids like Evan abundant support in the form
      of therapy, programs, and even respite services for the family. There
      is funding for social skills groups and potty training workshops. As
      he ages, there will be support for Evan's independent living and
      transportation as well.

      This generosity extends to our school district, which covers
      physical, occupational and speech therapy. Due to his blindness, Evan
      receives additional federal funding that provides assistive
      technology and any equipment he might need to access his education.
      Eventually, this same permanent disability will bring him more
      federal money in the form of social security and Medicare.

      A family member was once surprised to find that there's even someone
      who foots the bill for my son's formula and diapers. In so many ways
      we are so very lucky. But the specter of what this child costs, and
      who will pay for it, is never far from my mind, at tax time and
      throughout the year. A parent can envision a typical child's future
      as one that includes financial independence; not so a child with
      permanent, lifelong disabilities.

      The statistics for adults with disabilities living in poverty are
      staggering. I wonder how Evan will manage to navigate this city, with
      its terrible public transportation, and if we'll be able to afford a
      caregiver to take him places, cook his meals, help him with errands.
      By that time, we'll be living on our own retirement income, or what
      there is of it. Will there be anything left over for Evan?

      Last summer, our family went jobless for several months. The strain
      of unemployment was nothing compared to the worries about health
      insurance. A kid like Evan can't go without, but try finding an
      individual plan that covers him. In our state, Evan qualifies for a
      safety net medical plan—one we are very lucky to have, but one that
      also doesn't cover certain medications or certain doctors. "Do you
      take Medi-Cal?" is a question I must ask frequently, and "Medi-Cal
      doesn't cover it," is an answer I often receive.

      ~

      For all of my own worries, I also know we have it so much better than
      many other families, those who live in states where there are no
      supports, or very few. I once met a mother from Utah who couldn't
      believe the help we received for Evan. Her services were more or less
      nonexistent by comparison. I also have friends who pay out of their
      own pocket for additional supports that go beyond what their school
      districts or the state is willing to fund. A friend of mine spent
      thousands of dollars last summer on tutoring for her son, who has
      autism. When I heard the amounts, I was stunned. "How did you afford
      it?" I asked. "Credit card debt is a part of our lives," she answered.

      When Evan was first born, my father offered to have us bequeath our
      assets to him in case the medical bills threatened to bankrupt us.
      That was my first glimpse into how serious the money matters might
      be. Years later, after learning to play the system with the best of
      them, there is the simple fact of how sobering it is to even think
      about my child this way—as a bundle of financial responsibilities and
      looming bills to pay. Although the reality is undeniable, I would
      rather not have to put a price tag on my son's past, present, or
      future.


      Comments (8)

      Vicki Forman teaches creative writing at the University of Southern
      California. Her work has been nominated for a Pushcart and has
      appeared in the Seneca Review and the Santa Monica Review, as well as
      the anthologies, Love You to Pieces: Creative Writers on Raising a
      Child With Special Needs, This Day: Dairies From American Women, The
      Spirit of Pregnancy and Literary Mama: Reading for the Maternally
      Inclined. She lives in Southern California with her husband and two
      children, one of whom is multiply-disabled. You can contact her at
      vickiforman(@)gmail.com or visit her blog.
    • Elizabeth Peil
      We celebrated Chaz s 4th birthday on Monday. He is getting to be such a big boy now. He is 48lbs and about 46 inches long. Big boy. We have had a wonderful
      Message 2 of 6 , Apr 2, 2008
        We celebrated Chaz's 4th birthday on Monday.  He is getting to be such a big boy now.  He is 48lbs and about 46 inches long.  Big boy.  We have had a wonderful winter the best one yet and are hoping for many many more. 


        You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.
      • Sheallyn
        Happy 4th Birthday Chaz !!!
        Message 3 of 6 , Apr 3, 2008
          Happy 4th Birthday Chaz !!!
        • TONI ABRAM
          Happy Birthday Oscar and Chaz.
          Message 4 of 6 , Apr 3, 2008

             Happy Birthday Oscar and Chaz.

             

             

          • burcu paltura
            Congratulations on Chaz s 4th Birthday. I hope for many more beautiful winters to come. Best wishes to you all... Burcu x ... From: Elizabeth Peil
            Message 5 of 6 , Apr 4, 2008
              Congratulations on Chaz's 4th Birthday. 
              I hope for many more beautiful winters to come.
              Best wishes to you all...
              Burcu x 


               
              ----- Original Message ----
              From: Elizabeth Peil <elz0221@...>
              To: Myotubular_Myopathy@yahoogroups.com
              Sent: Thursday, April 3, 2008 4:34:10 AM
              Subject: [Myotubular_Myopathy] Chaz turned 4!!!

              We celebrated Chaz's 4th birthday on Monday.  He is getting to be such a big boy now.  He is 48lbs and about 46 inches long.  Big boy.  We have had a wonderful winter the best one yet and are hoping for many many more. 


              You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.




              You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.
            • masonsparents
              Elizabeth, Chaz & Family: That s awesome. We are glad to hear that you are doing well. Scott, Staceyanne & Mason Chico, CA
              Message 6 of 6 , Apr 4, 2008
                Elizabeth, Chaz & Family:

                That's awesome. We are glad to hear that you are doing well.

                Scott, Staceyanne & Mason
                Chico, CA
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