The down side of Downs

As I have mentioned in previous posts, we have encountered some of the most amazing people these past six months however, there are always exceptions to the rule. Through the guidance of our various support groups/organizations, we have undergone the tedious process of filling out mountains of paperwork, applying for additional services offered to children like Harper. These applications are monitored through agencies such as DDS and DHS, where we are assigned a specific case worker to follow our application through the system. Upon my most recent interaction with yet another representative, the Tefra Coordinator, I was appalled and left utterly enraged by what she offered up as information. The phone call I placed was simply made to verify the status of our application. This was submitted on September 1, 2010, with the general time frame for approval being 3 months. As the three month marker approached, I began making weekly calls to offer any assistance from my end to ensure swiftness of completion. The application had made it through the first review team, the Medical Review Team, by mid December. This team of doctors verified Harper was in fact born with Down Syndrome. It then went before the Tefra Committee for their review and approval, where it currently sits today. Also, keep in mind, we have been strongly advised not to pay on any of Harper's medical bills, as once approved, Tefra will retro pay from birth.This means I also make monthly phone calls with each statement received to extend the hold status of her account.

I was making my weekly phone call last week and since our Financial Counselor, who submitted the original application and has been working the case, was out of town, we were given the Tefra Coordinator's name/phone number as she is also familiar with Harper's case. I quickly gave a brief introduction and then followed with the intent of the phone call. I was immediately met with an attitude of noncompliance as not only did she not have any updated information, she had no intentions of obtaining any for us as well. She also provided that the Tefra Committee would be reviewing our case to determine whether it was A. more cost effective to have Harper raised in the home or B. cheaper to have her placed in an institution! What barbaric words uttered from her uncompassionate mouth but oh how the words just rolled off her tongue like water over Niagra Falls. She further provided, in her most snarky voice, that after all, it was the tax payers who would be ultimately responsible for those medical bills. I immediately jumped onto my high horse and told her to stop right there....First of all, what right did anyone but Jacob and myself have to determine where Harper would be raised and second, I am a tax payer as well who furthermore would be paying a monthly premium for this coverage. There is no "taking advantage of the system here," as she so obviously implied. I also explained this had been drug out long enough and ample time has passed for a decision to be made. Given her reasoning, it should be a very simple decision at that, with no aparent health issues for Harper. I knew the conversation had taken a nasty turn and left her with this thought...I was a mother who would do anything for her child/children and would continue to make my weekly calls until this was resolved. I assured her she would do no different if she were in my shoes. She muttered back that she, in fact, had been through the Tefra process herself. What?! How could any mother having been blessed with a special needs child and who has truly gone through the arduous process of filling out paperwork only to wait and wait, be so numb to the feelings of a fellow special needs mother?


The audacity this woman had, in this line of work, claiming to have been through what I have, and to be so cold and calloused, continued to haunt me. I picked up the phone again, this time to put in a call to another parent of a DS child. After explaining my predicament and the unnerving converstation I had just experienced, he said I had been through enough and it was time to make a phone call to the govenor's office. The following day, that is precisely what he did on Harper's behalf. I spoke of the instant and unbreakable bond we parents of DS children have when I visited Sarah Palin, and it was no different between myself and this particular father. That is what you do when you are a parent of a special needs child, you help, console, lift up, encourage, fight for, assist, pray for, whatever it may be, all the days of their lives. Makes no difference the need, we are all in this together. I thanked him for his time to listen and lend advise as my phone call had been unexpected. He reiterated that is what we do, we drop everything to listen and help each other.

I do not know if Mrs. Tefra Coordinator truly is the mother of a special needs child but if I were a betting person, my bet would be on no. The need and desire to help another parent of a special needs child is born in you at the very same time your child is born to you. We are not expected to go at it alone and although we may not have all of the answers, we can figure them out together.