My son Daniel was diagnosed with Niemann-Pick, Type C disease in June 2011. Our story to diagnosis was in the December 2011 edition. In July 2011, I applied for Medicaid for him, and only him. I have great private insurance benefits; however, due to Dan’s fatal condition I knew he was also eligible for Medicaid coverage for his co-payments and items that private insurance didn’t cover.
Medicaid is a joint federal-state program that provides health coverage or nursing home coverage to certain categories of low-income people, including children, pregnant women, and parents of eligible children. It also provides benefits to people with disabilities and elderly needing nursing home care. While Congress and the Centers for Medicare and Medicaid Services (CMS) set out the general rules under which Medicaid operates, each state runs its own program.
This is the story of the ridiculous process I went through in order to get supplemental Medicaid for my son in the state of New York, and how I have been fighting to get $90 reimbursed for more than a year.
Round 1: Holding the Social Service Office Accountable
New York has a multiple step process to apply for benefits. I first had to apply for community Medicaid, which is financially based, at the Social Service office. At the same time I applied for community Medicaid, I also applied for disability Medicaid, which was handled by a different office. When I went to the office to drop off the applications, I had all the documentation they needed—pay stubs, mortgage statement, etc. The receptionist refused to take any of the additional documentation. I received a letter a week or so later asking for the documents that I wanted to leave when I dropped off both the applications. I physically dropped off the requested documentation (for both applications) to the Disability office, just a day or two after I received the letter, and well within the time frame that was provided in the letter.
The day after the due date, my husband received a phone call from the Social Service office. They asked where the documentation was and stated my son’s file would be closed if they didn’t have it that day. My husband was able to contact me with this information. I immediately contacted the Disability office who informed me that they took the documents they needed and forwarded the other documents to the Social Service office. The Disability office determined that the Social Service office had misplaced the paperwork. This was Round 1—holding the Social Service office accountable for their mistakes. Not only did they misplace the paperwork, they called the wrong telephone number when trying to contact us.
Round 2: Getting Time to Make a Decision
There is a 30-day window to determine eligibility for community Medicaid benefits. A late afternoon phone call from the Medicaid case worker told me that we weren’t eligible for community Medicaid unless we wanted to pay over $3,000 a month in spend-down expenses. She needed to know right then if I wanted to accept or decline the benefits. Before I applied, I knew we were not going to be eligible for community Medicaid. However, I was working with a Medicaid Service Coordinator to get Dan covered, so I didn’t know the appropriate response. I had to beg her to give me 24 hours to make a decision. This was Round 2a—getting time to make a decision because they waited until the last minute to make their decision and contact me.
After discussion with my Service Coordinator, I had her contact the Social Service office to inform them that we would be declining the community Medicaid spend-down but to keep the file open because we were applying for disability benefits. In talking with my Service Coordinator, the Social Service office gave her some pushback on that request. Luckily I had already completed the disability paperwork when I submitted the community application. So now it was up to a 90-day waiting period to determine disability eligibility.
The Disability office was diligent in obtaining a determination from the ONE person who makes these decisions at the New York State Department of Health. Unfortunately, that decision then had to be processed through the Social Service office again, where the process got bogged down again. Apparently the case file had been shuffled between various different caseworkers because of staff turnover. Finally, I received another late afternoon phone call requesting a decision as to whether I was taking Disability benefits with over a $1,500 a month spend-down. Again, I asked for 24 hours to make a decision. This was Round 2b—getting time to make a decision because, again, they waited until the last minute to make their decision and contact me.
Round 3: Being Persistent
I made another frantic telephone call to my Service Coordinator who then called the Social Service office declining the Disability services because we still had the option of the Medicaid waiver, called the Care at Home Waiver program in New York. This waiver was pretty much a guaranteed acceptance; it was just a matter of time. One last piece of paper and the entire file was sent to New York State Department of Health for determination. Again, only ONE person makes these determinations, so it could be days or months before a decision was made. I didn’t know how much time we had with Dan, and we started to need things that weren’t covered. This was Round 3a—being persistent. Every week I called my Service Coordinator to obtain the status of the waiver. Every week, I was told no answer yet. I finally got fed up and asked for the name of the person at New York State so I could contact him or her myself.
Miraculously, my Service Coordinator copied me on an email to the person and the next day I received a reply that the acceptance decision was made and the letter was sent to the Social Service office. I made a quick phone call to the Disability office (who went above and beyond to help me) on November 10, 2011 to have them search for the letter. Dan died less than 24 hours after I had them look for the letter. I found out shortly after Dan’s memorial service that the letter was processed on November 10, 2011; therefore he had Medicaid benefits at the time of his death.
It had taken five months of fighting to get approval, and it only came on the day before he died.
Over the next few weeks after Dan died, I received conflicting letters. The first letter stated that I could seek reimbursement for out-of-pocket costs for the period beginning the first of the month that was three months prior to the date of application. Since I applied in July, I could seek reimbursement for the period beginning in April. I then got another letter stating that I could only seek reimbursement for the period of time beginning with the first of the month in which I applied for benefits, therefore July. Needless to say I was very confused. This time, neither the Social Service nor Disability office could help me, because they were equally confused. I don’t remember how I finally determined that I was only eligible to seek reimbursement since July.
So I gathered all my receipts for co-payments for medical appointments and prescription drugs, and uncovered costs like mileage, parking, diapers, and bed pads–all expenses I knew were covered under the Care at Home Waiver program. I wrote a very detailed letter with dates, costs, and mileage, with supporting documentation and provided it to the Social Service office. At that time Round 3b—being persistent started. Every few weeks, I contacted the caseworker to determine when a decision was to be made on the allowability of the claims. I was told I would receive a letter when the claims were submitted. During one of these phone calls, the caseworker told me that she provided the Disability office with the claims for mileage, parking, and tolls. So I called the Disability office. They had not received the documentation. I made a copy of everything I had previously provided to the Social Service office and brought it to the Disability office.
Round 4: Duplicate Paperwork
Almost two months later, the Disability Office had approval for the mileage claims that I submitted, but they needed me to complete their forms for processing. So I went to the office to complete the forms. This began the saga of Round 4—duplicate paperwork. There were two forms, essentially identical. The only difference was the formatting. The information needed on each form was the same. Each form could contain no more than one month worth of claims. Claims were only reimbursable back to when the nursing staff met with us and determined that we were approved for mileage claims. This date was a date in early August, over a month after he was determined to be retroactively eligible for Medicaid. Attached to each form had to be receipts supporting the claims. Luckily I had printed Google Maps for all the mileage claims and had receipts showing toll and parking costs.
I had to make multiple trips back to the Disability Office because claims were not itemized sufficiently. For example, three days of parking at $5 a day totals $15 was not acceptable. I needed to list the parking amount for each day. Other times the math was incorrect. Other times it was that I used a black pen (instead of blue) to sign the papers so they didn’t know if it was a true signature or a copy. I was finally paid for the mileage, parking, and toll claims. These funds came directly from the county, and were not submitted to New York State for processing.
Several months later, I was still waiting for the other medical and prescription claims to be paid. I finally received a letter from the New York State Department of Health showing the total claim amount submitted and the amount paid. There was no itemization, no listing showing approved or denied items. A check followed a few days later. But I still didn’t know what was paid and what was denied. The amount submitted did not equal the amount that I provided to the Social Services office. So I went back to the Social Services office and requested a copy of the submitted claims. After some serious discussion (and complaints about having to print a lot of paper), I left with the listing of claims. I didn’t need the supporting documents; I already had those since I submitted them. At this time I determined the exact date the claims were submitted, six weeks after I provided them to the Social Services office.
Thankfully there was a phone number in the letter that accompanied the summary sheet. I called the phone number. It rang at the desk of the ONE person who assesses the validity of the claims and processes them for payment. We were able to determine which claims were denied. I was also able to convince him (easily) to process payment for two claims for bed pads that were originally denied.
Round 5: The Department Shuffle
I had 60 days from the payment date to appeal the denial for any of the claims. Since all the departments had used their entire time to process my documents, I waited until the end of the appeal window to write my letter appealing the denial of two prescription co-payments. This letter was submitted to the NYS Office of Temporary and Disability Assistance, a different department than the NYS Department of Health. In my letter I provided three reasons why the claims should be allowed.
A few weeks later I received a letter with a date for a Fair Hearing. I contacted the office to have the date rescheduled as I was going to be out of town for work related reasons. I received a letter with a new date. This new date was in early September. This begins Round 5—the department shuffle.
I prepared a presentation that I would provide in a courtroom. I had copies of the supporting documents, all labeled and organized. I had a typewritten narrative. I was ready!
But New York state wasn’t. Neither the Department of Health nor the Office of Temporary and Disability Assistance provided a response to my appeal request. The hearing officer determined that the Department of Health, as the providing agency, was never informed of my appeal. So the hearing had to be rescheduled.
I received another letter in the mail with a date in early October. I walked in and was immediately asked if I had received my copy of the documents provided by the Department of Health, which should have been sent to me. I had not received anything. I was provided a copy, which included a letter and the listing of claims that were submitted. There was no clear reason for the denial, except being listed as a “non-covered” service.
I made my presentation. The hearing officer was as confused as I was as to why two of the prescription claims were denied when three others for the same drug were paid. The hearing officer called the ONE person who makes these decisions and processes claims (the same person I spoke with in May). After some discussion, this person stated that none of the drugs should be covered because they were all compounded for G-tube administration and compounded drugs are non-covered services.
I was totally shocked by this statement and got a little upset. The drug itself is covered, but because someone can’t swallow a pill, the claim is denied? And it is a co-payment claim, so it isn’t even the full amount of the original bill? Needless to say, I was not happy. Unfortunately, the only item I did not bring with me was a copy of the approved drug list showing that the drug itself is a covered drug. The hearing officer indicated she would provide the documents from the Department of Health, my documents, and the tape recording of the meeting to those in the Commissioner’s office who are responsible for making the decision.
Round 6: Still Waiting
As I sit here writing this, more than a year after my son passed away, I have not received a decision as to whether the claims will be paid or continue to be denied. I am appealing $90. Yes, $90. But I am doing it to show that the bureaucracy is unmanageable for those who truly need the services. I am also doing it to show that it can be done and to know what to do so I can help others navigate through the red tape that is known as the New York State Medicaid Program.