Medicaid Woes

Ahh...Medicaid, SSI...the words we all hear and run away from crying in defeat before we even get started in the process. Getting Medicaid for Bailee has been one of the best and most challenging things I have done. I am hoping to be able to share the process here to help others succeed in this much needed benefit for their children. Please ask questions about the process, and post any tips you have. We are in Virginia, so this is specific to Virginia Medicaid, but many states have similar programs available.

The most important thing to remember...DON'T GIVE UP!!! I can't tell you how many times I was told no, you can't get this for your child...when in fact, we could. It was surprising, and sad, to see how little information was given to us, and how little many of the workers even knew. You have to do the digging yourself and push...just keep pushing. The help is there for your child, persevere, and you can make it happen.

I realized how much I was pursuing when I called our local Medicaid office one day and they recognized my voice without speaking more than a few words. I was never negative, and always said thank you....but never settled for the "no's" or the "it can't be done's."

Here is all the Medicaid and other services we have:

The EDCD (Elderly-Disabled Consumer Directed) waiver, and Bailee is also on the waiting list for the MR (mental retardation) waiver. If they are under 6 years old, they don't need a diagnosis of MR, just need have some delays, once they turn 6 they have to qualify with a diagnosis of MR. We have been on this waiting list for over 2 years now though, but I would get screened for both and get her on as many lists as possible. I believe you have to qualify to be on a waiting list first in order to get on the EDCD waiver. This waiver is designed to help in the process of getting a more permanent waiver. You can always turn it down when the time comes if you don't need it, or if they no longer qualify. Some parents refuse to have a diagnosis of MR and won't get the service because it requires that label...we as parents don't care what the doctors’ label Bailee with, we just need the help, and we know her and know that a label won't define her.

Call your local DMAS office. Tell them you need a screening for your child for the EDCD and MR waivers. As far as I know there is no waiting list for the EDCD waiver at this time, the only catch is they have to "re-qualify" each year, but that really isn't hard. We just did ours, and it was a little paperwork, but that's it. With the waivers, Medicaid is basically saying, “It doesn't matter how much money the parents make, as long as the children don't have savings, income, trust funds, etc....they qualify on needs not family income, and we recognize that families with special needs kids need this help.” In the end, it is the same Medicaid as low income families, but because of disability needs rather than income.

This is a link to the Uniform Assessment they will use. http://www.dss.virginia.gov/files/division/dfs/as/as_intro_page/forms/032-02-0168-01-eng.pdf

Once you get the screening done, that part is usually pretty quick. You have to fill out the Medicaid application. Get in touch with your local Department of Social Services. I believe each County has their own. Remind them (a lot!) that it is for a Medicaid Waiver, and you shouldn't have to fill out all the parental income junk. Don’t let them tell you that you make too much money…this doesn’t matter for waivers! There is a medical portion, I believe, for the doctor to fill out, but all of it is pretty basic.

A few tips…be nice, be persistent, and don’t give up! Just plead your case, you do have to make your child sound like they REALLY need help and can't do anything for themselves...which is not always far from the truth. We just like to focus on the positives, so it's hard when they come in to interview you and you have to talk only about everything your child CAN'T do. Also, be polite...they get crabby over there dealing with so many cases. If you don't hear anything, call and get to know your case workers. I took Bailee down to the offices and let them meet her, then they had a face (and a cute smile too) to relate to. It really helped with their motivation, at least I think so!

After you get Medicaid waivers you get approved for a certain number of "respite" hours a year and also a weekly amount of hours. We got maximum for Bailee with her high needs which is 35 hrs. a week that Medicaid will pay someone for us to come in and help with care, cleaning, shopping, whatever you need. This can be a family member, just not immediate family. This is through PPL (public partnership)...but Blue Ridge Ind. Living (in our area) sets all this up, and they have been pretty good helping in the process.

Also, if you get Medicaid you will automatically qualify for WIC. We just found this out, and the kids only get it until they are 5. But it gives you coupons for some basic food each month...milk, cheese, fruit, bread, peanut butter, juice, cereal and eggs too. It isn’t a bunch, but it really does help. So you have to get in touch with your local health dept. for this, set up the meeting (after you get approved) and go down there with the kids and set it all up. They give you about 3 months of coupons at a time. You get a list of “okay” foods and brands, and most stores have them labeled. I recommend Food Lion and Kroger. Walmart has more cereal choices, but a manager always has to come and verify everything, which can really hold up the line. The other local grocery stores are a little easier to get through.

Another great thing we have is gas reimbursement. This is through Logisticare Virginia. This you can get automatically as well, but no one told us this. You call ahead of time and get reference numbers for your trips to the doctor or therapy appointment for your child, and then log it on the sheet, have the office sign off on it, mail it in, and they reimburse $.40/mile. Here is the link for more information: https://facilityinfo.logisticare.com/LinkClick.aspx?fileticket=Fsqwpu6C_qg%3d&tabid=619&mid=1466

One more BIG one!!! If you have your child on your insurance you can qualify for premium reimbursement, which also reimburses your portion as well. It’s called HIPP (Health Insurance Premium Payment). We have HIPP FOR KIDS which will not only reimburses the premium, but also both my and Ben's co pays, balances, deductibles, prescriptions, etc. It’s really great! You have to send in your paystubs each month to them, but it’s really not a hard thing to do to get this great benefit! Here is the link to their information: http://www.dmas.virginia.gov/rcp-HIPP.htm

Once you have Medicaid you can also get Social Security checks for your child. This is the hard one and has been my biggest headache. It is dependent on parents’ income and resources, so they count car values, money in the bank, income each month, home values, mortgage, etc…you can't have any savings...it’s tricky. I really can't stand working with them, but it does help some each month. You have to send in paystubs, like the HIPP program. But if you have a fluctuating income, where you work overtime, it can get hard. They amount you receive each month varies based on your income…which makes sense. However, the computer is really just guessing for what you make, basing its’ guess on what you earned two months ago! So if you make a small amount in January, then they assume in March you will still get that same basic amount, and send you a big check (maximum is around $620.00 I think per month). Then, surprise, they actually input your paystub amount (which you send each month) and they said they over paid you, and now you owe them money! Or, it works opposite…you make extra in January from working overtime, and they said you get nothing, and then the computer assumes you will make 3x your usual amount, and they won’t give you anything for 3 months.

I have not found a way around this. I just doesn’t make sense. I haven’t figured out why they require us to send paystubs in, but actually don’t use them to do the calculations. And they will send a letter saying they overpaid you a year ago…so that’s a fun surprise! The amount you get also varies when your bank account changes. They recommend not having more than $2000.00 in your account…EVER! So, they are basically telling us we can’t save any money for a handicapped van, home modifications, a larger, handicapped accessible home, or a power wheelchair…because if we do save, and try to be responsible, they will take our benefit away. My advice: Be careful with SSI…And keep a big stock of Ibuprofen for all those headaches they create.

START WITH THE MEDICAID WAIVERS AND GET THE BALL ROLLING THERE!!!

GOOD LUCK!

Little Ballerina

When we were about 20 weeks pregnant we decided we wanted to know if it was a boy or girl. I couldn't wait to find out! I had a feeling we would be having a little girl, and sure enough...we did! When we first heard the news of a girl, I immediately starting seeing the entire world in pink...filled with unicorns, ruffles, pink polka dots, pigtails, ponies, and of course tutus! It seems that all moms probably dream of their little girls up on stage in their little pink tutus, a big grand recital in front of the whole family...dancing, twirling, or just standing still looking adorable.

When Bailee was diagnosed with cerebral palsy, it was a moment that came and went by so fast, but at the same time was a moment in slow motion. For some reason, when you hear your child has a disability and might never walk, you begin thinking so fast about so many things....What do you mean she might not walk? Maybe she will walk. If she doesn't will she get to go to prom? Will she go to the daddy-daughter dances? Will she get to walk down the aisle and get married? Even though she wasn't even a month old yet, I found these thoughts entering my mind and they haven't left since.

The pink polka dots, unicorns, ruffles, pigtails and ponies were still strong in my picture of the future. We started hippotherapy with Bailee a few years ago and she loved it! She loves riding her horses, and it has been wonderful therapy. And of course, we can't forget...her favorite color is pink. The tutus, however, and the dancing on stage was something I let slip away to the back of my mind, realizing girls with cerebral palsy don't usually have an opportunity to dance like all the other little girls.

One day at the therapy clinic I noticed a flyer from our local dance school, Floyd Ward, for a dance class for special needs children. What!? Did I read it right...my heart fluttered a bit at the idea of Bailee getting to be in a dance class. I jotted down the number and went on my way. The next day, after a wave of emotions of pure excitement of the possibilities this could bring, I gave the school a call. It was a brand new class they were starting, and we were signed up to start the following Saturday!

After a long week, the anticipated Saturday morning finally arrived. We arrived early, and our lives have not been the same since that day last year. We have a child with a disability, doing something we never imagined possible...Bailee is dancing! Bring on the TUTUS!!!

To put into words the experience we have had is near impossible. How do you write about the feeling you get when you see your little girl, who cannot sit alone, or walk, twirling around the room in a dancers arms....smiling the entire time from ear to ear? There really are no words to describe it. It has been an amazing opportunity. Every Saturday Bailee cannot wait to put on her PINK tutu and go to dance class.

The school just had is annual recital in June and Bailee's class participated. When those six girls when out on stage, it was one of the most spectacular moments. They were all dressed up in their costumes, complete with makeup. Each girl had their own assigned "helpers" to dance with them each week and at the recital. The music started and the girls were all so beautiful. There wasn't a dry eye in the entire auditorium. They danced to the song "True Colors" and were called the Angels from Heaven class. All the girls on stage were Angels that night...both the girls with special needs and the girls with special hearts to give their Saturday mornings to help our little angels have an opportunity to shine.

When you get to witness something so pure and genuinely heartfelt, it's indescribable what it does to you. Bailee was dancing in the front...with her helper Miss Kirsten guiding and moving her body through each move. She was just glowing! It didn't matter that Bailee couldn't sit alone, or walk, or even lift her arm up...she was a Ballerina, and she was beautiful!

Watch the Dance Recital Dress Rehearsal Here!!!

►► Fast Forward A Bit...

So, fast forward a few years, add in a smorgasborg of therapies, doctors, alternative treatments and here we are today. We have a beautiful four year old, or "almost five year old" That is what Bailee says when you ask her old she is, holding up her little hand trying to open it all the way up.

We have done years of therapies including them all...physical, occupational, speech, hippotherapy, pool therapy, treadmill training...the list goes on. There has never been a moment when I have regretted any of it, or trying anything, or the rigorous schedule we have going three, four, five times a week to different therapies, every week for the last four years.

We have been to all the regular doctors for Bailee, plus pretty much any that end in "ologist". Add in multiple regular brain ultrasounds, MRIs, trips to UVA's Kluge Center, which we love, weight checks, and other routine things. We also did two rounds of hyperbarics at Charlotte Metro Hyperbarics, and most recently Bailee's first surgery, a bilateral de-rotational femoral osteotomy.

To say the least it has kept us busy. We definitely didn't expect to have this life, but have learned so many things from having a special little girl like Bailee. She is a wonderful child and is a blessing to be in our lives. She is always smiling, and always bringing a smile to others.