No Boundaries

Massachusetts is a special state (nay, Commonwealth!), which has more comprehensive programs for helping children with medical complications than many other states. For that reason, I always tell Sherin we are never moving. A job in NY or London? Fine–but that’s a long commute for you!

Still, no state or commonwealth is perfect, and one thing that has always irked me about Massachusetts’ Medicaid policy is that if a child who has a tracheostomy and is eligible for home nursing care (and qualifies for the Kaleigh Mulligan program, see my post in May 2012), AND that child is getting healthier each year because of that care, the child’s allowed nursing hours are reduced each year.

It’s a perverse policy that even a then 10 year old Lucy could figure out. When Ben’s nursing hours were cut yet again due to terrific prevention on our and our nurses’ part, Lucy said, “you know Mom, you just have to let Ben get sick, go to the hospital, and then they’ll give you the nursing hours back”. Exactly! And how wrong is that?!

What made matters worse is that our school district has a legal requirement to provide 1:1 nursing to Ben while he is in school. So Wellesley Public Schools pays for a nurse to ride the school bus with Ben, attend school with him each day, and ride the bus home. The catch is that the nursing hours that WPS uses from Ben’s eligibility pool–and for which they PAY (meaning Medicaid does not)–are hours the Elwy family then loses at home. As Ben’s health has improved, and his nursing hours are less each year, this means we are now in the negative nursing hours range at home.

Ben and sisters enjoying an end of 2012 celebration at The Nutcracker

Each year a nurse case manager from Community Case Management and I meet to assess Ben’s health from the previous year. This means I explain how many hospital visits he’s had, how many ER trips we’ve made (usually none–because we TRY REALLY HARD NEVER TO GO TO THE ER), and a functional assessment based on my poor memory. Because I always think things are rosier than they are, I’ve started using my Microsoft Outlook creatively to track Ben’s ‘bad’ days. It mostly works. I also have to have some sort of knowledge of how many times we suction Ben, how long it takes for us to help him with toileting, how long to do his stretches, etc. “You suction him once a night every two days? How long does that take?” It would make a good Seinfeld skit.

But two years ago a new nurse case manager started working with us, she listened to my yearly complaint about how the evaluation wasn’t assessing how much effort our family and nurses were putting into Ben’s care, and how it didn’t matter how many nursing hours she gave us because the school would use them instead of us.

It’s December 20, and Sherin and I took the day off to put together a new bed for Charlotte, a Christmas gift. There’s no time on the weekends to do this, plus it wouldn’t be a surprise if she were home. As we are out buying the mattress and bedding, we decide to treat ourselves to the delicious Oga’s. As we pull into the parking lot, I get a call from the nurse case manager. “Are you sitting down?” she asks. She has received permission to create a pilot program for kids like Ben, whose nursing hours are used by the school district (apparently there are a lot of us) and who therefore have no hours at home and must pay out of pocket for nursing care. After her careful assessment, she has granted us, in addition to the school hours that WPS uses, 23 hours of HOME CARE.

I am shocked. This is what I always wanted, asked for and never got. She says “put your hand under your chin and close your mouth”. HA! You would have thought we were on video chat.

I cannot thank her enough. I am nearly in tears. This is such a HAPPY DAY. Sherin and I enjoy our lunch, marveling in the advocacy of one person who can figure out how to make a system work.

I just signed the paperwork to accept this new program. I am thrilled. To give you an idea of what this means:

1) we no longer have to pay $45 dollars an hour to the nursing agency for the time the nurse spends with Ben and we are at work (and of course, the nurse is not paid all of that money)
2) when Ben wants to stay after school to join the chess club, get extra home work help, or work with a partner on a project, HE CAN because the nurse can now stay with him
3) Sherin and I can go on DATES!

It’s the beginning of a kinder, gentler, more beautiful new year.