In the early days of jojothestrong, I mentioned that the costs of Jojo’s care is a whole other subject. While I usually find it off putting to talk about money in most forums, it feels like the right time to get into that subject now. With what is happening in our country right now: changes that are being proposed to health care, education, and federal funding for welfare and special needs programs, saying I’m concerned for the future of Jojo’s care is a massive understatement.
But wait, why would this affect us? I have a solid career, hubs and I are both well educated, we have access to good healthcare. The truth is there is no way we can afford all of the care Jojo needs. We need help, and we get it from a welfare program. That is right. WELFARE. We aren’t gaming the system, we aren’t lazy people living off the backs of hard working people. We work hard to create a comfortable life for our family. And we need help. Thankfully we have it. For now. Ok, so let’s break it down.
The first important thing to know is that as residents of San Francisco California, all of the services Jojo is getting now are funded by a government agency called the GGRC (Golden Gate Regional Center). They have an early intervention program for infants and children who have developmental delays. They take care of kids up to age 3, at which point care shifts from GGRC to the San Francisco Unified School district. Well, that is a real shitter, because under the current President and his administration, a lot is at risk when it comes to education, including special education services. We’ll cross that bridge when we come to it in 7 months.
The next important thing to know is that medical expenses associated with Jojo’s situation are astronomical. I mean, how-is-it-even-fucking-possible for things to cost this much? Here it is:
Jojo is closely followed by a neurologist. This means regular visits every 3 months, and follow up visits every time she has a test to discuss results and next steps. Her neurologist is the most amazing person on this planet by the way, so I want to be clear that I am eternally grateful to have her on Jojo’s team. And. The cost is very high. One visit is $700. So every 3 months – that is 4 visits a year, plus a few extra for discussing test results. Let’s call it 7 visits a year.
$700 x 7 = $4900
Next, let’s talk about the tests themselves. Tests are in the thousands. The most recent metabolic test was at the low end, $1000. Her MRI was $24,000. Echocardiograms are $5000. She’s had two. For 2016 – 2017 year to date her tests total $40,000. 2017 isn’t over, but I don’t think we’ll do more testing this year, so I’ll take the average.
$40,000/2 years = $20,000
Then there is the speech therapy and physical therapy, both are at two sessions a week (so 4 sessions per week total) and cost about $120 per session.
$120 x 4 x 52 weeks a year = $25,792
Next we have equipment and the like. She has custom orthopedic braces that were $5000, and a gait trainer which also is around $5000. I expect we’ll have these or similar for the next couple years and will have to upgrade size as she grows.
$5000 x 2 = $10,000
Last but certainly not least, there is the integrated preschool with early intervention programs Jojo goes to. She goes 2.5 days per month. The cost for this is about $2500 / month.
$2500 x 12 months = $30,000
Grand total = $90,000
That is just under double the average median household income in this country. Who has that kind of money laying around? Certainly not us or anyone we know. What about insurance? It covers everything except therapy and school. We have a high deductible plan, as I’m sure most people do, with a deductible and co-insurance that has an annual out of pocket cap at $11,000. We reach it every year. In fact, we’ve already reached it for 2017 and we’re just half way through the year. That is about $2000 per month in medical expenses. GGRC picks up the bill for therapy and preschool. So we are making it work for now. I am terrified for what will be available next spring when she turns 3 and the GGRC funding ends. What will still be place through the public school system?
We are very fortunate that we do have the healthcare we have, even if the out of pocket costs are high (I didn’t even mention monthly premium!). And lucky for Jojo that I never take no for an answer the first time. I fight denied claims, which happens all the time by the way. I question policies that impede Jojo’s opportunities for development. I ask more of service providers when the quality of care is falling short. I really have to manage Jojo’s care closely and proactively.
Early intervention is proven to be the most effective and most critical time to address developmental delays and get these children a fair shake in life. The integrated school Jojo goes to serves mostly low income and at-risk families. I’ve met some beautiful kiddos and lovely moms and dads. Most are predominately Spanish speaking, and don’t have the means, time if they’re working 2 or 3 jobs, or vocabulary frankly to stalk to the level that is required. We must as a community support these wonderful children and their families. I don’t want to sully the beauty of jojothestrong with politics. But I don’t think having affordable health care for all is political. I don’t think having special needs programs and services for all children who need them is political. Particularly when a woman’s right to choose whether to carry on with a pregnancy is under attack. These aren’t political issues, they are human issues. It matters and it is important.
Jojo The Strong 