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Have you ever wondered what it’s like to get a weekend away with your family to attend a conference and get overwhelmed with information?  Yeah… not many people do.  Our family was lucky enough to get to attend this year’s Family Cafe.  It was very informative and frustrating all at the same time.

Now before I go on, if you’ve never attended this event, the Family Cafe really is a great experience.  Check out their site here: https://www.familycafe.net/ What they pull together each year is just truly amazing.  From the variety of vendors set up in the exhibit hall to the incredible amount of information provided in the various sessions.  There really is something for everyone.

Accessible Vehicles

We were able to discuss accessible vehicles with a couple different companies and found out some valuable information.  For instance, with a letter of necessity from Riley’s pediatrician, the vehicle purchase becomes tax-free.  That’s a pretty significant chunk of change on a $40K + car. Riley isn’t going to get any smaller, and it’s already pretty difficult to get her in and out of our current cars.  Also, the new wheelchair isn’t exactly the lightest.  We may not need it right this minute, but it will be needed soon.  She’s a chunky monkey.

Medical Beds

We also found a vendor that does special needs beds.  Our little angel is currently still in a crib.  And as mentioned above, she’s not getting any smaller.  It’s pretty hard for Grammy and PopPop to get her out of her bed safely.  Oh ok, it’s hard for me, too.  I mentioned she’s a chunky monkey?

Just talking to the special needs bed guys and the accessible vehicle people was worth the trip.  We did get some valuable information from both parties.

Sessions Turned Too Political

What I wasn’t too excited about was the varies sessions/talks we attended.  Almost all presentations at some point were taken off course by the audience and people upset by the lack of support, funding, etc they were getting.  I understand, trust me, I’m upset too that I have a job, I have insurance, I’m doing everything right and I can’t get approved for services.  These people are receiving services in some form or fashion and I just wanted to find out how to apply for things.

One session we attended was how to apply for the Medicare waiver program.  As I said previously, I have a job, I have private insurance.  This translates into no chance of getting government assistance.  It’s too bad that insurance doesn’t actually pay for everything, or even approve needed items, like say a wheelchair.  This waiver program allows for family’s like ours to apply, regardless of income.  The bottom line is there is a need.  I don’t make enough to pay for all the expenses associated with living and having an extraordinary child with special needs.

There were a couple gentlemen in the first row of this waiver program discussion that hijacked the session and made it about how they’ve already applied, but it’s taken more than 3 years and they’re still on the waitlist.  Now that in itself is frustrating enough.  The speaker then spewed out this little bit of information:  There are currently 35,000 receiving benefits from the waiver, and over 23,000 on the waitlist.  I may have those numbers backward, I have a migraine at the moment and the meds just don’t want to work.

Getting Frustrated

Now, if that wasn’t bad enough, let’s take this little bit of information in for a second.  If you are currently not eligible for Medicare (read that as I have a job), have insurance, the typical length of time on the waitlist is 10 years.  Let that sink in for a second and let me say it again.  Our current situation, because I have a job, and have insurance, the waitlist for my daughter to get additional needed benefits is 10 years.

I was already worked up when these poor guys were trying to figure out why they’ve been waiting for 3 years.  After hearing 10 years, I was furious.  I do the right thing.  And it’s not me getting punished, it’s my daughter.  Yes ADP, yes social security, yes every government agency.  I DO THE RIGHT THING.  By doing the right thing I end up being in debt, not getting the services my daughter needs and deserves because insurance won’t approve it, and I’m simply mad at my government for being stupid.

Luckily though, I was sitting next to my beautiful little girl and my amazingly quiet at the time son and kept my mouth shut.  Yes, my parents brought me up to keep my mouth shut and not say anything if you don’t have anything nice to say.

“You Don’t Qualify”

My wonderful mother and I went to this conference 3 years ago when Riley was a little tiny thing.  I can remember wanted to find out about social security benefits and approached their booth and started to speak with one of their representatives.  After a quick hello, I was asked if I had a job, to which I replied yes.  She quickly said, “you don’t qualify” and walked away leaving me literally speechless.  If you know me, I always have something to say.

I really am sorry.  I went off down a rabbit hole on this post.  But honestly, this is the reality you face when you have a medically fragile child with extreme special needs and you have a job.  If you are just starting out on this journey, and you’re like me, a good American who has a job, be prepared. Be prepared to get frustrated with your government.  I know there are a bazillion other reasons to be frustrated with the government, but this one hurts your family directly.

Find Your Representative and Have a Voice

During the waiver discussion, one good bit of information did come out.  If you don’t like what’s happening, get involved.  Find out who your representatives are, write to them, tell your story and be heard.  We all need to do our part to make sure our children, though different, get the services they deserve.

All in all, setting the political sidetracks aside, the Family Cafe is really a great experience for family’s just starting down this path.  It’s filled with valuable information, you get to meet other family’s at different stages on their own journey and it’s just a great place for all to come together in a safe environment.  Also, AJ got to hold a baby gator.

Sara and KiddosIf you read this to the end, God bless you.  You have some serious strength.  And thank you.

I never said this journey was easy.  It’s totally worth it, though.  Riley is amazing.  She’s strong, and I don’t know what I would do without her strengthing me every day.

Thank you for reading!  Time for an ice pack on the eyes and a dark, quiet room.  Migraines suck.

Sara Signature

 

 


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Sara
Sara is a mother of two, wife and full-time employee. She's also a parent of a child with special needs.

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