No Boundaries

On Ben’s birthday last week, a birthday he shares with Harry Potter (July 31), he should have received his letter via owl inviting him to join Hogwarts School of Witchcraft and Wizardry in the fall. Instead, he received a barrage of snail mail from the Office of Medicaid (aka MassHealth) from the Executive Office of Health and Human Services in the Commonwealth of Massachusetts. These letters did not congratulate him on his admission to Hogwarts. These letters threatened to, and then eventually did, cancel his MassHealth coverage.

Ben celebrating 12 years with his favorite carrot cake (and dad)

We were away, first in Montreal, and then in northern Vermont, having a wonderful family vacation and basking in the ability to do so, since Ben’s recovery from the spinal growing rod surgery allowed us to unexpectedly travel this summer. On our return home, voila, there these letters awaited. According to MassHealth, I had exactly one week to get together all the documents I previously sent them in April–during Ben’s surgery and recovery–that they claim I never did. Lucky for me, I had confirmation of delivery via signature. I patted myself on the back.

“We tell people not do that” said the MassHealth customer service person that I actually got on the phone, after TWO HOURS of pushing buttons and being on hold, when I explained that I had confirmation the documentation had been delivered. I said “Of course you do, because then someone like me can’t tell you that these forms and documentation were sent in before”. I was promptly hung up on.

I found another person, who, after patiently listening to my story, tried to help, but I must have topped her frustration level, because she told me she needed to put me on hold and then…. a dial tone. I lost that friend too.

What we need to remember is that Ben qualifies for MassHealth because of the Kaileigh Mulligan waiver, which I’ve written about before. This allows for children who have a lifetime disability that is equivalent to an institutional level of care to receive Medicaid even if their family’s income is over the federal poverty limit. Ben has had MassHealth through the Kaileigh Mulligan program since 2006, when he underwent surgery for a tracheostomy. MassHealth pays for his nursing services, critical to him attending school (he can’t without a dedicated nurse) and for us working–and thus paying taxes, which in turns pays for MassHealth. It’s a productive cycle.

However, even though family income doesn’t count towards Ben’s eligibility (which is based on our documentation of his health status that we send in each year), we still need to provide evidence to MassHealth that Ben does not have assets over $2000. He doesn’t. He has nothing. We closed his savings account last year, and cashed in the bond he received as a gift at birth, because it became so complicated to keep providing this financial information, year in and year out. We just keep cash under his mattress (kidding!). However, MassHealth needs to determine his share of our family’s health benefits. So we need to tell them how much we pay bimonthly for health care insurance (which is good, because that means MassHealth pays for less), dental insurance, and in our case, vision insurance. This was the hold up. Apparently, they claimed, they never got documentation that we pay $11.10 twice a month for vision insurance. This is what I turned in in April.

Feeling the love from those Vermont Creemies!

So I promptly faxed in the statement indicating this $11.10 is paid semimonthly. That was on Ben’s and Harry Potter’s birthday, July 31. MassHealth’s phones were then out of order for the rest of the week; thus I could not confirm that all was now well. On Saturday, August 3, I received a disenrollment notification. I tried calling Monday. The phones still didn’t work. I spent another 2 hours pushing buttons, and did find out that through the automated system that he appeared to still be enrolled. Today, while driving to pick up Lucy and Charlotte from camp, I reached another human. She claimed to not have received the fax.

I pulled over, whipped out the paperwork that is now permanently part of my purse, and read to her all that I faxed. It took at least 10 minutes to process the $11.10 twice a month vision payments. Lucy calls me to ask why I am late for camp pick up. The caseworker eventually tells me that Ben is now approved and re-enrolled. I ask for documentation in writing to state this–I mean, they’ve been sending me notices each day, what is one day more? But apparently they can only send negative notices. Positive notices, such as Yes You Have Coverage, cannot be generated.

I pick up Lucy and Charlotte from camp. I get home, check the mail, and sure enough, MassHealth has not let me down. I have another notice, which tells me that I have until August 29 to provide the documentation on the vision benefits. I can’t even cry or complain, I just add this to my ever growing pile of papers in my purse.

I’ve been meaning to talk to the Medicaid Director for years about these issues, and I decide that now, right now, is the time I will do so. I’ve just checked the website, and, guess what? He’s gone. He was there Friday. Now there is an Acting Director. I know why he left. I would too.

My conversation with him was going to be: I have a son who is permanently disabled. In fact, his condition is progressive, so each year it is worse. Yet each year you make me document just how bad it is and how it will always be bad. On top of that, you’ve made sure he will never have any credit rating in his life because you make collecting all these financial forms such a nightmare. And when I do send them in, you tell me I haven’t, even when I have proof that I have. You don’t want me to have proof. You get mad at me when I have proof. I send them in again anyway. You ensure the phones are down so that I can’t talk to a human. But I can’t talk to a human when the phones are up, not easily anyway. WHY DO YOU DO THIS TO FAMILIES LIKE OURS WHEN WE HAVE SO MUCH GOING ON? And, oh, by the way, I have a PhD and I teach health policy and this situation kills me year after year and what the HECK do you think this is like for people who don’t speak English well or don’t understand the system , if you can call this a system??? &%@$#*!!!

But now I will have to wait to have this conversation until another Director is appointed. Perhaps I will be calm by then.

Yet, there is good news. While traveling, we realized that Ben’s disability parking placard was set to expire in September. I sighed and made a mental note to get a letter from the pediatrician that I could send in to the Department of Transportation, with the requisite application, documenting that he is still indeed disabled and we still need this parking placard. But when we returned, in addition to the MassHealth letters, we also had a NEW, UNREQUESTED, parking placard, miraculously sitting in our mailbox, proactively authorized for another 5 years, with no paperwork, no calls, no tears, no frustrations. Just complete efficiency on the part of DOT, who said, yes, this person will always be disabled, let’s just send this out. I am in complete awe, and full of sincere gratitude.

There is always a silver lining somewhere. Now maybe that Hogwarts letter will arrive after all!