5 Years ago we were expecting our first ( and so far ONLY) bundle of joy. It was unexpected. At the time I found out I was pregnant I was covered by my parents insurance. Which also meant that I was double covered.
Naively I thought that I would easily be able to switch to something. Dallas and I were making some life changes and we kept trying our hand at everything. We even applied for medicaid but we didn't qualify. Instead we ended up paying for a plan that was offered to students through the University of Utah ( YES!! I am a UTE.. Who knew!!)
This insurance plan was less than desirable but it would provide prenatal care and would leave us with a VERY small amount of money due as we started out our new life. We had a few weeks to wait to get on Dallas insurance but when that happened we would be double covered again and we wouldn't owe anymore than the small amount when we weren't double covered.
This of course was when everything was going to go as planned. I was going to have a baby the last day of my finals in December and life was going to be a fairy tale. Then came Sept. 1st!
D and I worked at the same place. He was laid off and 3 days later so was I. We were allowed to keep our insurance for 30 days. On the 21st of that month lightning struck and our world changed.
By the end of the month of September we had MAXED D's insurance policy and we were fighting with the U insurance because they weren't about to add the massive bill that we were asking them to add. We ended up only being able to afford cobra coverage for me and we got the Social Security disability insurance that is for babies born under 2 ( or three) pounds. ( I can't remember the exact amount.. but I think it is 2 pounds) Tyler was thankfully covered.
Coverage for Tyler has NEVER ever ever ever ( did I mention EVER) lapse from the day he was born to now. We have gone to great lengths to have him covered no matter what. Dallas and I have not gone without insurance and it has been done in GREAT lengths to do so.
When we chose to move to Arizona we had no idea the type of coverage they had for children with disabilities. Instead, we just paid more out of our check for GREAT insurance coverage. It was a while after we moved there that I met a women who had a child with CP and she gave me all the info for services. I was amazed and SHOCKED at the amount of services that were available to us.
Because we left after having been connected into Shriners I didn't have to use the CRS program. Which, in my opinion, was a HUGE blessing. CRS you are only allowed to use specific doctors and you are not able to pick what docs you want for specific specialties and only seen during specific days. Frankly, I was picky and I wanted specific docs for specific things that would work with our doctors in Utah. Plus we had great insurance through Dallas work. So the CRS and any long term care was ALL secondary. The reason we had GREAT insurance was because we paid way more out of pocket, opted for a PPO and got referrals for EVERYTHING. Also, unlike Utah, the idea of a monopoly is far less apparent. There was a children's hospital that we only had to go to ONCE!! Banner desert in which we had 2 docs, a private Eye guy, private ENT and a few docs at St. Joes. It wasn't a IHC or die type situation.
As Tyler got older and aged out of early intervention the type of services we got change a lot. We were given long term care and given rehabilitation services along with respite care and we also had regular therapy with no limits because we had Long term care services.
This is where it gets tricky. Utah mommies with special needs or even EXTRA needs look at that and think " WOW why the HECK did ya move? " And we think... we have NO idea. But soon after we left massive cuts were made to the system. That being said... some things about the system.
There was no case worker that would help you get all your services. I was the person who had to go out and get the services. I had to pick places to take him. We were on TONS of speech waiting lists. When we FINALLY got on one she moved and then we were stuck with therapy at 3 different locations. My respite was through one place, and my hab was through another. The services were split sometimes and I would have to be the one to make the payroll splits. I had to find my OWN respite people. I was the one that found all the therapist and all the stuff that we had.
It wasn't like it was just handed to you and you just got. You really did have to work for it. There were waiting lists all over for certain things and sometimes staying with a company you might get bumped up on the list just so they could get all 3 of your services. Ty had those services Tuesdays and Thursdays and we just LOADED him up.
We still used the respite care and used our HAB time for things like music therapy and a few sessions of water therapy. We also had a person who came in to work on specific things. Like OT goals or had to have an educational something thrown in there. When I finally got Corin I thought I had DIED and gone to heaven. But it took a lot of effort to find all those things. It wasn't just something you woke up and had. It took effort. A lot of it.
The decision to move came after 2 brain surgeries that were emergency and we ( Dallas and I) had no other support system. We were it. Dallas can't stay at the hospitals. Tyler needs me to be there. He is sick and in the PICU for his entire stay. When we get home, all carpets must be cleaned and the house bleached from head to toe. Doing it with no help ( aka a mom or a dad or a grandparent or sisters) makes for a VERY lonely road for us parents.
We didn't make the decision to come back to Utah FOR the insurance benefits but we also didn't think that because we were not ever without coverage finding health insurance would not be difficult. But we were wrong.
So along with the choice to come back to Utah came the praying, spiritual confirmation and some pretty amazing things happening to make us really be firm in our choice. It is something that I know we are judged on because we have sort of bad coverage here in Utah. The move and all of that went really well and we kept paying Cobra till we could get something else.
Our Cobra was the same plan that we were getting in Arizona except it was through the monopoly IHC. We had great coverage. We paid for that coverage with a price tag monthly of 1200 bucks. We were thankful for that option but it runs out. So we were even more thankful when D was offered a job with insurance.
This insurance coverage is bunk. It is SOO crappy compared to what we have had in the past INCLUDING the Cobra!! We pay outrageous amounts in prescriptions and all that jazz and then 20 percent of everything we have done. ( Which is "normal" and we know that. But when you are looking at 20 percent of 9 specialist, that is A LOT! Oh and what about those emergency brain surgeries that we haven't had yet! HOORAY! But we did have Gal bladder surgery.)
So, Yes. We Sure did walk away from coverage in Arizona ( that then got cut less than six months after we left) to come to Utah where we have 2 sets of grandparents 7 Aunts, 2 uncles and ample cousins to play with and people to help support us during our time of need. Especially when we are trying for another and knowing how well our pregnancy went last time we knew that having family around was the only way it would work.
We really felt that the spiritual experiences we had on choosing to move back was worth it at the time. We feel our doctors here are where we need to be right now. We feel we have the support system from most of those Aunts ( one uncle is FAR away) that Tyler would be taken care of if we needed more help to get one here safely.
Through the months of getting here we truly struggled to keep that Cobra coverage paid so that Tyler was covered. We went without a lot of needed items in order to make it work. That above mentioned support system wasn't exactly like I had envisioned but yet, another support system was there.
Until now we have never really gone without anything medical. We have always said no matter what it costs we will find the money somehow. That was until now. Tyler is in DESPERATE need for a adaptive stroller. He doesn't need a wheelchair because he doesn't want to sit down. The adaptive stroller are for the activities where he REALLY wants to go and I cant carry him any more. Wheeler farm. Perfect example. He walked 90 percent of the time, but those darn legs were so tired that sometimes he would need a ride or I would have to carry him. Hospitals, same thing.
We use Shriner's but they don't really do Strollers but do wheelchairs. So again. We will do what needs to be done. Somehow...
And, the kicker of all kicks....... We went to see the rehab doctor. It was a follow up on his phenol shots. He need them again and we were getting those set up. We were given some information for children with spastic legs like Tyler. It is called a baclofen pump. First he needs to have a baclofen trial. As we were discussing the options of the pump, the Nurse practitioner checked Ty's insurance status and found we have to pay 20 percent. The tone of the discussion changed.
If we have to pay out of pocket they won't do it. They say that because the cost of taking care of a child with a disability is so daunting for life long care that paying out of pocket isn't possible. I was CRUSHED. Ty deserves so much more than that. I told her I would pay whatever I had to but the discussion was over and we won't be getting to do the baclofen pump or trial until our insurance changes or we get covered by medicaid.
What do other people do? Why should Tyler be punished because we don't have a million dollars in the bank? Isn't that why we have children's networks?
So we wait. We sit and wait. We hope that something will come up and we will have all the things we can that will help him be a more functioning person.
*The thoughts expressed on this ( and some future posts) are not directed towards one person/family/group of people or the likes. It is experiences that have happened, are happening and will probably continue to happen. If you would like to comment please do so. It is a place of discussion. If you are offended please email me and I will be happy to explain or try and avoid conflict.*
** images are courtesy of Google Images**