Applying for SSI/SSD and Medical Assistance

I went to our local Social Security office today to file for Social Security Disability Benefits for Bekah. I knew we wouldn't qualify under the income determination guidelines, but she does however qualify medically according to their Disability guideline for children with Cerebral Palsy. Had we qualified for SSD, she could have qualified to receive a few hundred dollars a month in SSD benefits.

Having the extra money every month would have been nice to help pay for Bekah's care, but that was not my main goal for applying for the SSD. I knew we would be denied, and that's exactly what I needed in order to get Bekah qualified for Medical Assistance in the state of Pennsylvania. Normally, we would not qualify for Medical Assistance because of our income, however there is a loophole in PA known as the PH95 loophole that would allow Bekah to be covered under Medical Assistance regardless of our income or her assets. Applying for Medical Assistance will require you to go through the process of applying for Social Security Disability Benefits. In the end, if you do not qualify on an income basis (not disability basis) you can include the denial letter in your application for Medical Assistance.

We do carry full medical, dental and vision insurance through my employer, but we are still responsible for our individual deductibles, family deductibles and 20% of all services on an annual basis. If you know anything about the costs of Physical Therapy, Specialists, and the MRI's that we have had to go through for diagnosis - you'd know that those bills would add up fairly quickly. Not to mention the fact that I've had to pay for having a baby this year in addition to all of Bekah's medical care, it's a huge financial strain on us right now. Thankfully, Medical Assistance can be retroactive up to 3 months, if approved.

The PH95 loophole would allow my daughter a secondary insurance to pick up co-pays and parts of our deductible from our primary insurance. The qualifications follow the definitions for applying for Social Security, as far as medical disability goes. It also includes children with Autism (see here for more info: http://www.autismhandbook.org/index.php/Medical_Assistance_PH-95_Loophole_Coverage).

For more information on the PH95 loophole and what it covers, you can view the "cheat sheet" online here: http://www.drnpa.org/File/publications/getting-medical-assistance-for-a-child--under-18--with-a-severe-disability--mental-illness-or-behavioral-health-disorder-under-the---loophole--.pdf

To read the Medical Assistance Eligibility Handbook in the Children with special needs section, click here: http://services.dpw.state.pa.us/oimpolicymanuals/manuals/bop/ma/index.htm

To apply for Medical Assistance in PA, you can file in person or online at the COMPASS website: https://www.humanservices.state.pa.us/Compass.Web/CMHOM.aspx

Preparing for appointments

There are so many questions I have for Bekah's doctors about her recent diagnosis that I am having a hard time figuring out where to start. We have a lot to learn going forward not only about her conditions, but also about how to care for her and what to expect. There are a lot of documents that other parents can find online (via Google.com or other search engine) that can provide a list where you can start asking questions. I've listed a few to help others get a head start on making a list to take with to appointments:

• Questions to Ask Your Child’s Doctor about Cerebral Palsy - http://cdn3.healthcommunities.com/hcmedia/2009/06/patient-information-cerebral-palsy.pdf
• Visiting the Doctor - What You Need To Know, What You Need To Ask - http://www.bccerebralpalsy.com/doctorvisit.htm

I haven't found any lists about questions to ask about her Dystonia diagnosis but there are quite a few available for Cerebral Palsy. Some of those same questions I'm sure can be used for both or at least to start you out in creating your own questionnaire. I'll probably post my questions here once I start a list for anyone interested in using it to form a questionnaire themselves.

You should also think about what things to bring with you to your doctors appointments. I started a 3-ring binder with all of Bekah's information including:

• A copy of your Medical card/child's card - I requested an additional copy of my daughters cards from our insurance carrier to keep in the binder in case I forgot to bring a copy along with in my wallet.
• Contact information (Names, addresses and phone numbers) - I collected business cards from all of my child's doctors and specialists that she has seen and have taped them into the binder on a piece of paper that I punched holes in. You could also purchase 8 1/2" x 11" business card holders for your binder. 
• Medical History and Documentation - I keep a log of all doctors visits including the date and time, and copies of doctors notes in the binder to take with us to appointments. These include notes from our Pediatrician, Neurologist, Physical Therapy, etc. Not all of our doctors are on the same network, so they don't always have immediate access to records, and have to request them. Having a copy available with us can sometimes speed up the process while official copies are faxed or mailed to the doctors offices.
• Prescription information - If your child is taking any prescriptions, make sure they are listed in your binder including the dates and times your child takes the medications, and any side effects they may experience.
• Mileage and Parking Costs - If you are claiming your mileage and parking costs at the end of the year - make sure to keep track of your costs on spreadsheet or other document for easy review at the end of the year when you file your taxes. Mileage to and from your appointments, or picking up your medication is allowed. You can also claim payments made for parking at those same appointments. The IRS has a list of allowable deductions here: http://www.irs.gov/publications/p502/ar02.html/
• Copays and Payments for Medications - Don't forget that you can claim co-payments (not made from an FSA/HSA since those are already pre-tax dollars) and any out of pocket costs for non OTC medications. See the IRS list for allowable deductions for more information.

I've also requested copies of Bekah's birth records from my Obstetrician's office. This is for a variety of reasons. I would personally like to review the records myself to see what's in there. I'd also eventually like someone else (possibly a lawyer) to review her records since Cerebral Palsy is considered a "birth trauma" condition and is usually caused by something that happens during pregnancy, birth or somewhere in the first two years of life while the brain is still forming. Sometimes the cause is never found.

Meet Bekah the Ballerina

Bekah is 2 years 7 months. She is a very pretty little girl. She has very curly brown hair and brown eyes. She talks about wanting to be a ballerina, and wants to play the violin. She also talks about wanting to go to school like her big brother. She climbs on our couch as if it were a playground. She jumps up and down in her crib as if it were a trampoline. She is a very typical toddler. If you get to know her, you probably wouldn't think anything was wrong with her.


Knowing something is wrong with your child has to be one of the worst feelings I have ever had as a parent. When Bekah was a baby, we never really noticed anything unusual. She laughed, she cried, she did all the things that a normal baby *should* do. At least I thought. Recently, I reviewed her pediatricians records at 9 months, she didn't meet the milestones of being able to play "peek-a-boo", roll over, pull herself up, or crawl. She was flagged as having a "mild motor delay". I don't exactly remember her not meeting those milestones at that age. Had I known she had been flagged at this time in her life by her pediatrician, things might have made sense much more quickly than they did.

MRI day!

We're home. It's been a long day. Poor Bekah inherited my poor veins. They stuck her a few times in the arm and in the hands. They called an IV team to try next and they failed. We ended up having to give her general anesthesia to knock her out to just get the IV into her foot. That is something that I never want to have to watch again. Watching them hold her down and force a mask on her and then seeing her body go limp in under 20 seconds, tongue hanging out, eyes rolled back... I'm going to have nightmares for weeks after that. Once that was done we carried her to the MRI room where she woke from the anesthesia, and they sedated her again using the IV catheter. They finally rolled her into the machine and started the scans. They made it through her brain scan and then repositioned her for the lumbar spine scan. they made it through about 10 minutes of that before she woke up *IN* the MRI machine and started ripping off the head gear, oxygen mask and scooting her way OUT of the MRI tunnel, screaming her poor little head off. I heard her screams when she woke up through my ear plugs and over the MRI noise (if you've ever had one, you know they are LOUD). They held her down again and sedated her once more through her IV. Once the scan was done, they took her to recovery on a stretcher trying to not wake her. Because of the dosages they gave her, if she would have woke - they told me that she would have had emergence delirium if she would awake before the sedation medication wore off by itself. They hooked her to a saline bag and turned the lights out and we waited for her to wake up. Once she woke - that was a whole other world. Her first words to me were "I'm swimming". She couldn't sit up straight, she slurred her words and pretty much acted like a drunk toddler. We have to monitor her for at least 24 hours, waking her up during sleep cycles and naps. But the drunkenness should wear off by tomorrow. We'll know more about the scans Thursday and if they found anything in them.