Holy Moly. How can this be? I mean I knew it was going to happen, or at least I had hoped one day it would happen and now that it is nearly here... I am freaking the freak out! I don't want other moms and dads to freak, so I will be sharing this portion of the journey with you all in hopes to let go of some stress, help others not make the same mistakes and to offer guidance as we tread these waters.
If you aren't aware already, this princess warrior is 1 of 10 diagnosed in the USA and a little over 50 in the world with a rare genetic life limiting dwarfism disease called SIOD. These children's life expectancies are only 9.2 years and July 8th, our Emily will be turing 18! This is amazing and miraculous if you don't know her story yet.
Along with turning 18 comes a transition into, into, into- oh my goodness- ADULTHOOD!
That is pretty neat, but what I want to share today is where we are at in this transition in hopes to help others in our situation with a special needs child, or for our friends entering this juncture one day.
Like I said, how can this be? And better yet, what and the hell do we do as our dependent child suddenly is treated as an adult because she has turned 18 ( and 19 here in Nebraska)?
Having friends with special needs children, I had an inside scoop to some changes that would be coming even though I blocked them out as I just hadn't fully pictured us here. Emily's doctors even began bringing up the transition to the adult team specialists - on hospital she frequents is 18, one is 19 and the other isn't until she turns 21. Confused yet. Hahaha. Then she is on the Age and Disabled Waiver/Medicaid program which will turn to the Age and Disabled League of Human Dignity Medicaid program once she is 18. Here's where it gets tricky.
Again- I knew a change was coming, but NO ONE from her current program, probably because we literally have had 5 different case managers in the past few years, said to us, hey, your child is turning 18 in July, we need to start the transition at least 2-3 months before that. Back track to our state of Nebraska seeing 19 year olds as adults, but not on the SSI or medicaid program. Slow your roll- what? See the confusion already? So I brought of the transition to Emily's current case worker, and then when the League of Human Dignity called that they got a referral- whew- let's just say we are running short on time and hope to goodness there will not be a lapse in her care coverage, which could happen. Even though Emily has a rare GENETIC life Limiting disease that will never change, she has to go through all of the process to deem whether or not the government sees her as disabled.
So where are we at now? I have submitted the paperwork and talked to the Waiver/Medicaid people, and talk to a case manager tomorrow to get things signed, we have filled out her SSI paper work and sent it and now we wait to see if some medical team in the government who has no idea who she is will provide coverage and an income for her.
What have I learned? As I have always done, keep track of the paperwork, make copies ( yes, they "lose" it) and date everything and write down everyone's name of with whom you talk to. And realize we don't know what we don't know, yet hopefully have the wherewithal to ask the right kind of questions to get the answers you need for your loved one and if not, lean on those like myself who are trying to help others amidst the process.
So there you go- a bit of the back story and up to speed on where we are at in navigating the transition process to Emily becoming an adult even though she more than likely will always be with us and need special services for however longer we are blessed to have her on earth.
