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Hi, sorry you weren’t able to make the meeting.

We had a great turn out, and a great guest speaker. Kayla Bower; from The Oklahoma Disability Law Center came and spoke about SSI/SSDI. At the beginning she hit a little on children and IEP info. She spoke about kids that have disabilities, or conditions where it is hard for them to write, or hold a pen/pencil the correct way. Holding a regular pen/pencil is called a tripod grasp. I have noticed some chiarians have troubles doing this. I have also noticed in my group that handwriting is messy; a few in the group have talked about this, and have even said they get tired easily holding the pen or pencil. I have heard these words from Kaylie before. That usually is the reason why it takes us so long to do homework is that she starts to complain about that her hand is tired. Kayla brought with her to hand out to the group the amazing pens and pencils. They are called Twist n’ Write. I looked them up, and they are everywhere. I saw them on Amazon, and I even saw reviews on amazon that they are also at Walgreens, cheaper. I have not personally gone to Walgreens yet to see if they are there. But as one of the attachments I add a pic of the pencil, and how it is held. Everyone is the group was ecstatic to get one or two… and through out the meeting I noticed a few taking notes the entire time with them. So I think this is a great tool! Kayla, also noted that for children in school that this is something that can be added in the child’s IEP if they are having Tripod Grasp issues. I sent Kaylie to school with one, she wanted to try to use it their, if it makes a difference in the next couple months, or if she prefers it… I may think about adding it in her IEP, at our year evaluation in May. Kayla also handed out a set of books to two of our members that have children with IEP struggles. Pete Wright wrote one of the books. He speaks on training advocates, parents, and teachers on special education requirements. He also has a great website: He will also be coming to speak Dec. 5th, 2013 at UCO. To get more information on this event, please go the Pete Wright’s website, or contact Kayla. He will also be in Fl., Ca., NM., OH, WV, MI, MD, MO, OR, VA, and CT. Kayla also plans on getting me a set of those books so they can be used, and paced around in our group. Then we got into SSI and SSDI. Kayla is a lawyer, at The Oklahoma Disability Law Center. Their services are free. Every state has a Disability Law Center. This is on my agenda too, but you can go to National Disability Rights Network, to find the office in another state, click on the map to the right, then select the state you live in. If you have troubles finding your office, contact me, and if I can’t I will contact Kayla for help. Kayla also offered all of her contact info to us, if anyone ever had a question to text or call her. She is only allowed to practice in the state of Oklahoma, so it would be best to contact your own office rather than Kayla, if you live in a different state. She also offered for everyone to “friend” her on Facebook. This I highly recommend everyone doing, her FB page is just for business… not personal use. She is always adding great link around the US about disabilities, SSI, Autism.. the list goes on. When she began to speak on SSI/SSDI, she handed out 4 social security brochures. Benefits for Children with Disabilities, What you need to know when you get supplemental security income (SSI), Your rights to question a decision made on your supplemental security income (SSI) Claim, and A guide to supplemental security

income (SSI) for Groups and Organizations. All 4 of these handouts are in PDF attached to this email. I highly suggest taking the time to read the handouts, if you are looking in to applying or planning to apply for SSI/SSDI. In our meeting she explained whats those were, and basically how income comes into play with if you qualify for it. If you have a general question, please friend her, and ask. She is very nice, and always willing to help. She also spoke to us about Veterans, and that if you are related to one, to make sure they look into that they are getting the benefits they deserve. I guess that dependent children and/or survivors of veterans are also able to get benefits. I guess there is a list of conditions that go a long with all this, Hydrocephalies being one of them, that makes you qualify for the benefits. I’m sorry I am not able to explain all this, its kind of confusing… but like I said before, please ask her questions, or contact an office near you to get more help. She also handed out two other handouts, which are resources for Oklahomans …. Both are attached to this email, because this is a general email going out to my memebers as well. But, for others that are out of state, I would suggest looking into if your state has a program like one of them. The first one was on Redlands Partners, which has to do with information on Medicaid in Oklahoma. The second one is on TEFRA… here is a little piece from one of the handouts explaining what TEFRA is.

Once Kayla was done, I went over Financial Assistance, Reducing your Medical Bills, Traveling for Treatment Assistance, and Fundraising. In this email you should have 4 attachments on each of the above that I just listed. Speaking Notes on these: Financial Resources: I talked about my favorite site is the Patient Advocate Foundation one. I just think there are so many resources on this site. The Chronic Disease Fund, is one that a family member of mine is apart of, and when Kaylie was first diagnosed they recommended that I look into that group. At the time I was so busy, but recently I looked into for our meeting, and they have a set list of conditions, that qualify you for the programs. Of course CM, SM or any related conditions are on there. BUT, I told my group that if someone is in serious need of those types of services, then they should really call, and ask to speak to a head director, and explain their story and what CM and SM is. I even suggested that I though a letter or email would be better, I tend not to be able to get all the info out when on the phone with someone, and in a letter or email, you can make sure to explain everything. I really think that those conditions are not on there, because they are not well known about. We all have been to a doctor that has a hard time explaining them, or doesn’t even know what they are… so you can imagine a non-profit would be the same. Education is key to awareness, AND getting help with your condition/s.

Reducing your Medical Bills: My written notes on this, is pretty much what I talked about. But I did add a few notes in. I talked about how before treatment, and you are dealing with an Out-ofNetwork doctor/surgeon…. Ask his/her billing/insurance assistant if they can “Contract” in as a one time service for the treatment. Also, ask if they can assist in everyone involved in the treatment/surgery…. This includes hospitals, anesthesiologists, 3rd party monitoring groups… everyone that will come in contact with you on that surgery, and your stay as you recover. Example: Kaylie had her PFD surgery by Dr. Rekate of TCI, which the hospital was North Shore University. We have great insurance and North Shore was in-network, BUT Rekate, and everyone else involved with her surgery was not. When I first heard about contracting out-of-network doctors, I first contacted my insurance company and asked them about this. I was told that they don’t make that decision that your surgeon has to approach the insurance company about doing a contract. Instead of calling, I decided to email Rekate’s assistant that dealt with all the insurance and billing…. I think I may have cc him on the email too. I simply stated the situation we were in, why we chose to go to NY over the surgeons in OK, and what I wanted them to do. I also gave them all the information of who and where they needed to contact, to be able to do this. This info is usually on the website of your insurance company… you just have to search for it on their site. Now here comes the part, where I wish I had followed up on this. I never heard back from his assistant or him (which doctors don’t deal with this anyways, so there was no reason for him too)… but at the time, I was so busy dealing with Kaylie, and other things, I thought to myself that if she didn’t contact me back (like she has all the times before), then they must have not decided to do that for us. I WAS WRONG!!!! I should have called or asked, I never found out they contracted with my insurance company till this past month, when I got Kaylie’s anesthesia bill from her 3 month post op MRI. Below I am strictly talking about the anesthesia bills only…. Not scans or anything else. For Kaylie’s surgery, the anesthesiologist was contracted for $9020.00, but even contracted it will still go through insurance again. After insurance, I was left with $1136.20 bill. Not bad after 9K…. But you should never pay the bill that was sent in the mail…. You need to ask for a discount!!!! So I called the anesthesia company, I asked if I paid in full, would they discount the bill. Simple as that… direct words. Their particular company does not do this over the phone, nor will they tell you the percentage of what they will deduct if you are given a discount. They want you to write a “hardship” letter. And so I did… I explain about these letters in the notes. After they got it, reviewed it… they took off $636.20, leaving me with $500 to pay out. I sent them a check, but I could have made payments on it (see notes about Payment Plans).

At Kaylie’s 3 month MRI, my son also had to have a MRI… this is where I had no idea they had contracted. Because I just got the bill for both of them on anesthesia… Kaylie’s was $2860.00, insurance only sent them a check for $340.86, leaving me with $2519.14 to pay. And for Mason it was: $3300.00, insurance sent a check for $615. 12, leaving me with $2684.88. When I first got these bills, I was in such shock, that I would owe more on anesthesia for a 45 min MRI, compared to a 5 hour surgery!! So I first called my insurance company, asked if everything was charged right, and they were done submitting their part… that’s when I found out Kaylie’s surgery was contracted. I probably could have contracted their MRIs too, but it all worked out in the end. I had also called the company, and they reconfirmed about the contracting, etc. I then sat down, wrote out another letter to them… and attaching my old letter too, to remind them. Faxed it in, a week later got a call that they took $2291.90 off Kaylie’s leaving me to pay $227.24, and they took $2384.88 off Mason’s, leaving me to pay $300.00!!!! That is almost 5K taken off, because of a letter. So as you can see “Hardship” letters have become my new favorite way to ask for a discount. It does take some time, but well worth it. Other things I said, is if you have private insurance, everyone should have a copy of their Summary Plan Description of their Insurance. This will be a very thick stack of papers. But you need to have this, so that you can make sure all your benefits are being used correctly. In the notes about keeping records… I added, you need to keep copies of any letters that are fax/mailed to these companies, when asking for a discount. On the Health Care Pricing Information Sites… I just said that New Choice Health is my favorite. These are great sites for when you want to bargain with the price on treatment/services. On Fundraising…. My notes are there, I simply stated that it is possible, it is a lot of work, but it can be done. You would be surprised at all the companies/local businesses that will help out, or donate items to be auctioned off. We did this for Kaylie. That basically wraps up what our meeting was about, if you have any questions please feel free to ask. You can contact me by email or friend my on Face Book. I hope everyone is doing well, and pain free! ~Amber Barnes Oklahoma Chapter Leader of American Syringomyelia & Chiari Alliance Project