Waiting for a phone call...again. Who will it be this time? I wonder how long this person will stay? Well, at least it is another opportunity to share who Emily is and her story.
In June of 2021 I posted a blog about Navigating Transitions. Please go back and read it. It tells about the start of this portion of Emily's healthcare journey transitioning to adult care and processes. Since then she has turned 18 and is Federally seen as an adult. She receives SSI (Social Security Income) and has moved from DHHS (Department of Health and Human Services) to LOHD (The League of Human Dignity). We are almost reconciled and signed on officially with an adult home health care agency after months of phone calls and trying to find a fit after being released from CHHC (Children's Home Health Care). The sad thing is that all of these agencies have had such a high turnover and then we also have her medicaid insurance, which is NTC (Nebraska Total Care) and a case manager for this as well that it seems I am constantly juggling between who knows what, who is taking the lead on Emily's case and how long will this person be around. Their case loads are high. Way too high. I try to be patient, kind and receptive, yet it gets exhausting.
It seems as though with many a phone call, which is like the doctor's office calling you back, you know the drill. Make a call. Leave a message. Someone from the facility calls back- hopefully the same day, you explain the situation. They go talk to whoever they need to and say they will call you back. Some do, some don't. Some take way too long. Then when you do get the call back you may be left with more questions and have to play the game all over again. My favorite responses though are:
"Well, so and so said you can just call xyz yourself and find out 123."( Oh sure, let me add that to my list and the game of phone tag.) or "So and so said you can just go online or to ABC story and get this item- it is only $$$."( If I had a dime for every time I have heard this I would have enough money to purchase said item for her special needs!) or "Please call us anytime and we will get back to you." ( do they even realize the call goes through a series of automated instructions just to maybe, hopefully get to a person or a place to leave a message!)
There has got to be simpler solutions and a more streamlined way to help the aged and disabled in our healthcare world. I have said this for years. I have even tried sitting down in talks with DHHS and Senators to come to some common ground solutions. I am not that person that complains and does nothing to try and solve the problem. I rarely complain, even. Yet for my sanity and for the good of the cause I am working on making my voice heard for not only our situation, but for others out there that need someone to advocate for them and with them. I will gladly be that person and have been.
I have had friends and acquaintances ask me how they can help remove some things from my to do list or my plate before. I so appreciate this. I know I have been challenging in the past to help as I am a momma who things she can do it all or it is just easier to do it myself because it takes too long to instruct someone else and I could have just had it done. HAHAHA. I am learning though- especially being our foundation's executive director, to delegate and allow others into this closed circle I have created. Baby steps.
Emily will be graduating high school in 3 months and in July will turn 19. We are so blessed. I write these things and milestones about Emily and cannot grasp the reality of it all myself. For all intense and purposes on paper she should not be on this earth yet and thank goodness she is! With these next milestones come more transitions that although we are grateful for, we continue to navigate wondering each time I ask what I feel are simple questions that agencies don't have answers to only to ask them, "We cannot be the only people to ever ask these questions, why don't you have an answer?"
I know that the Arc of Nebraska and Disability Rights of Nebraska, two agencies I follow and have been in touch with in the past and present, are working hard as well with our legislature to make a difference and we are grateful to them as well. I am reminded when I want to go out and stomp around the capitol that even though we can do anything, we can't do everything. My focus for now is my family, and our foundation mission and getting Emily to walk across the stage with her friends and classmates on graduation day.
