Medicaid D

When we went to PCMC back in October for a follow up for Tyler's CP and last phenol injections, the Nurse Practitioner sent us down to the medicaid D office on the bottom floor. As we were going through possible future treatments she mentioned that it was unethical for her to ask us to have to pay 20 percent of the cost. His long term care would be to costly and it would make a family homeless. Without the treatment it wouldn't "kill" him so it isn't technically withholding treatment. It would just make his life a little easier. She said that we really needed to get secondary coverage so we could afford all the things that he is going to need.

Of course you leave a little frustrated knowing that you will never be able to take care of your child and frustrated that the system works the way it does. If he was more severe or had a trach there is a waiver. If we were poor there would be no issue. But the fact that we are middle of the road, middle class people we get to chose between a place to live and things that will make his life better.

After the appointment we went right down to the Medicaid D office. It was almost closing time but we decided to sit there and fill out the stack of paper work to start off the application instead of having to turn it in to another office and forget to do something. So I sat there with Tyler and filled it out. After we were done it was taken right down to the neurosurgeons office to have his nurse fill out papers. By the time we got back home his nurse had called. She filled out what she could and decided that she wanted Dr. Gooch to fill it out. So she nicely took up it there and that was all we had heard.

Thanksgiving came and the high and rush of the new baby and then Christmas. Soon after the new year as we were working on the stroller thing and I kept calling the social worker. He would never return my calls so I was annoying and called every day at 2 and left a message. For ONE full week. Then I called our nurse coordinator at our peds office. I NEVER have used a coordinator. I have always done it myself. Clint, the nurse coordinator, laughed and said our doc said the same thing. She will never call you. She does it herself. BUT I broke down and got some help. He called a few times and finally I got some random person who said someone would call me back in 3 weeks. I was like um NO.

After a few 3 hour phone calls our dude called us back from PCMC. He said that they had been sending it to a random Nancy Brown somewhere in Lehi. We got them looking at our application and the address they have is our current address but they were sending it someplace else. Once we got that fixed we got some extra paper work in the mail.

Last night as we were going through insurance coverage and deciding how much we could afford on the extra stuff for flex spending and what not we filled out the PILES of paper work. They don't cater the forms to kids so you spend an hour filling out stuff that is Not applicable. Then they ask you to compare your kid to other normal kids and tell them what is not "normal" for your kid. I was like "Um really." Your asking for all our health records to send it to a board of people to determine if he has a need for disability and you want me to remind myself that we suck.

Sweet... Lets do that.

So 2 pages later as to what we suck at and I am about done mentally. Emotionally I was done from the day before. Tears start flowing. Then MORE tears because I realize as we get older and older, that me as the mom are making the adjustments of stuff we didn't want to be doing at 5 and other people are telling us he isn't welcome because of those things.

Today, I have lots of appreciation for the kid that I do have and a realization that his life and his well being are a balance and that if others who should love him can't made the adaptation then I will do them for him and do them alone. If we can't get the disability then we go homeless or sell a car. We make his life easy for him. We didn't want to be changing diapers at 5 and we didn't want to be ordering strollers or wheelchairs and braces and being told we can't do something that will make his life easier.

So 30 more days and we MIGHT find out that our spend down a month is outrageous because again.. those darn middle class folks just are rolling in the secret Dough and we start over in our quest.

If you have applied for Medicaid D what advice do you have? Was your spend down NUTS? Are we barking up the wrong tree?

A tale of FREE health care

At the ripe old age of 1, Tyler was admitted to a national Cerebral Palsy clinic where we were able to get physical therapy, Occupational therapy and speech all to work with him above and beyond what he received with Early Intervention. We saw the CP docs, orthopedics, developmental pediatrician and lots of interns and we were put on a very low key treatment plan. ( which at the time was all we needed). But a good one none the less. At a VERY affordable price.... FREE!

We moved to Arizona. Low and behold this program had an outreach clinic and we were set up with some amazing Dr's and nurses that would travel down and see HUNDREDS of patients in a short amount of time. ( I will have to explain Arizona's way of insurance/CRS and other "forms" of therapy on another post. YES, we did get long term care, YES we did walk away from it to move to Utah because we felt that is where we were suppose to be and yes... We miss it horribly.. ARIZONA, not just the insurance!)

When it came to time to get a little more aggressive we needed to come back to Utah for the surgeons and rehab docs. This trip was planned well and amazingly PAID in FULL and we were able to fly to Utah and spend some time with our family before the trip ended. We also got so MUCH information to chew on. At the time we opted to go with the less aggressive form and try botox. It didn't work and the more aggressive form was the way to go.

Moving back to Utah we get in much more regularly. We see a PT, OT, Speech, orthopedic doc, orthotitcs, developmental ped ( which I am not sure I like a lot) and of course Dr. Gooch. We have a whole team that met us every three to six months depending where we are in our treatment. We see our therapists sometimes several times a week.

How much does this cost us? How much do our co pays come to and the 80/20 portion? What about when we reach our max 12 a year? ( yes insurance only gives you 12 appointments a year!)Do we get limited speech appointments?

The big answer is NO we don't. It is FREE!!!!!!

We get what is best for the child. What is best for Tyler is to keep going. To keep being rehabilitated. To keep pushing for what is BEST for him, regardless of the cost!

So how does this Marvelous plan work?

Perfectly~

It works perfectly because Tyler is a Shriner's Kid.

Shriner's hospital is a non profit organization that is run by donations and by the Shriner's religious organization. You must have a qualifying condition in order to be accepted as a Shriner's kid. You can easily fill out an application and see if you qualify. Any orthopedic or neurological conditions that affect movement and some have burn centers qualify you for this care. They also do research in several of the hospitals.

There are 22 hospitals across the Country. Children from other countries are also given chances to come to Shriner's FOR FREE to get the care they need as long as the condition is treatable.

The care that we get at Shriner's is UNBELIEVABLE. Any time you are there for a procedure there is a care kit on your bed. It includes a stuffed animal ( generally from build a bear or Kohls kids care) a blanket and the toiletries you will need for your stay. There are less patients per nurse so the care is amazing!

Sadly, in 2009 when the economy went down the tubes, so did the endowment for the Shriner's hospital. In order to keep ALL the hospitals running they did something they never thought they would have to do. They had to start charging. However, they aren't charging the patients but charging the insurance companies while waiving the co pays and any remaining balance to the children and their family. Any service that the insurance company would or could deny coverage the hospital will still do The head of Shriners said," We will always take care of children the best we can."

Recently, Utah's Shriner's hospital had to start taking the insurance from the patients. They are working to become preferred providers since the only other "competition" is PCMC and to get contracts with those they need to work with. ( which is funny because EVERY doctor that works at the Shriner's works at PCMC and we have seen them in their individual office at PCMC for full price) They are working to get the portion that the insurance would pay in order to help offset the costs of care.

I am writing this for informational purposes and also to see if there is anyone out there that would like to experience the Shriner's for yourself and would like to attend a therapy session there. We would LOVE to be able to do a service project to provide something to the wonderful people who work there that provide this care for free. Or, if you feel the need to want to donate to them please do so in Tyler's name. He would MUCH appreciate it. Because of their hard work he might even get a big boy bike next summer!

If you are interested in a tour, a time to see them in action or just to feel of the spirit of compassion in a hospital PLEASE go see the Shriner's.

As a mom of a Shriner's kid, I cannot thank them enough for the love, support and encouragement we get from them along with the support of knowing that they have everything there that will help Tyler.

Please if you can donate, even a dollar or a stuff animal or something. A little goes a LONG way!