• Accessing Services
  • Abel

    A Mother's Open Letter: My Experience With The Pennsylvania Health Law Project

    October 28, 2019

    To Whom It May Concern:

    My name is Rachel Tyson, and I have a son named Abel who has numerous disabilities due to an anoxic brain injury that occurred during a surgery when he was 18 months old.  Abel turned 14 this year.  He has four younger siblings, and is an integral part of our family.  This may not be the life we would have chosen, but it is the life we have been given and it is a good one. 

    Abel is completely dependent on his father, myself, and others for 100% of his activities of daily living.  He is unable to walk or even straighten out his arms or legs, receives food through a g-tube, and requires personal toileting care.  Abel cannot communicate verbally, and although we are attempting to work with him so that he will eventually be able to use communicative technology to find his voice, progress has been slow.

    Managing all of Abel’s needs is more than a full-time job.  One of his many struggles is with effectively clearing his airway.  Because of this, he is constantly susceptible to pneumonias.    As his health has grown increasingly fragile over the years, our family has come to depend heavily on the support of nursing services made available to Abel under Pennsylvania law, through medical assistance.  Once Abel began receiving in-home nursing care, first overnight only and then eventually via a one-to-one nurse to care for him at school, his quality of life improved, and along with it, that of his family.  He was in the hospital less and engaging with his world more.  We all settled into a work-school-doctor visit-home routine that now included Abel’s nurses, several of whom became personal friends.

    Then, out of the blue in 2017, we received notice that Abel’s nursing hours were being reduced by his medical assistance insurance company.  The nursing supervisor of Abel’s home health care agency recommended that I call the Pennsylvania Health Law Project (“PHLP”).  I didn’t call at that time for a couple of reasons, one of which being that I thought this was just a misunderstanding; a snafu that I could successfully handle on my own. I thought the status quo would be reestablished once I simply explained the situation to whomever was in charge.  

    And so, I proceeded to the first level of appeal alone and without legal assistance.  It was entirely unpleasant, extremely upsetting, and unexpectedly confrontational.  That’s when I knew I needed help, and I finally called PHLP.

    To put it simply, PHLP was a Godsend.  Our attorney, Danna Casserly, understood the system and the issues, and she cared about my family.  She was always professional, promptly responding to emails and thoroughly answering all my questions.  She guided me through the second level of appeal, making sure that I was well prepared for the questions I would probably be asked.  PHLP’s legal assistance paid off on spades.  Not only did the insurer reverse their original decision, but they also awarded Abel even more nursing hours than he had before!

    So, when we recently received a second notice that Abel’s nursing hours were being cut, I wasted no time contacting PHLP.  Again, I connected with Danna, who reviewed the denial paperwork and familiarized herself with the issues, and together we did the hard pre-hearing work of gathering updated letters of medical necessity and nursing notes. With Danna’s guidance, I prepared a statement explaining from a personal perspective who Abel is, the level of care he needs, and what that looks like blended in with the rhythm of our family life.  This time around, when the morning of the hearing arrived, we were informed that the decision had been overturned and no hearing was even required. 

    My experience with PHLP has been nothing but positive.  I am grateful beyond my power of expression that this organization exists for families whose lives are already complicated by their children’s medical issues.  The work of PHLP matters, profoundly and demonstrably.  If you are a PHLP supporter, I humbly thank you for this support.  If you are a family struggling to be heard by your medical assistance insurance provider, I encourage you to reach out to PHLP today — you don’t have to fight this battle on your own.

    Very truly yours,

    Rachel Tyson

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