The shake down went like this:
When we first got IFI services, Sissy was a CMO insurance provider patient. CMO paid for very few hours. These hours we got with the first team, the team that crashed and burned us.
At the same time the CMO dumped Sissy's case to our state medicaid program, we were transitioning to a new IFI team and switching Sissy's meds. We got triple the hours and they reported that Sissy had made significant improvements, improvements that were due largely to the med change.
So technically, even though Sissy has had two very difficult weeks and we didn't get near the hours of support we needed the first seven weeks Sissy was out of RTC as we've gotten the last five with medicaid money, Sissy has expired her 12 weeks of IFI support. Medicaid will not reauthorize and we're downsizing to just Intensive Core, cutting hours to one third and changing teams, again.
yep. I cried.
No amount of explaining that this is absurd, that we've been shafted, that transitions for RAD kids are ridiculous, helped. The IFI team was extremely apologetic and sympathetic but their hands are tied. Because the anti-psychotic has reduced the violence of the rages and consequently the number of crisis calls in the last five weeks, the new team did not report the same issues as we had when Sissy was first discharged. The past five crisis interventions in two weeks notwithstanding in the grand scheme. The end.
CBAY, the waiver that provides the unskilled wraparound services, is going to request funding to replace the decreased hours but those hours will be respite only for the next 90 days and not family, individual or life skill therapies.
OK, so the good news. Please, bring the good news!
We get Ms M back from our first team. HOORAY! We liked her bunches and the kids nearly knocked her down at the door when she came in, they were so glad to see her. We get to replace the individual therapy with attachment therapy, returning us to Sissy's RAD therapist in town. Ms P will still be working with AB and the new team member has lots of years of experience with RAD kids. CBAY will also be requesting approval for payment of adaptive swim therapy for Sissy so I won't have to pay for both AB AND Sissy. And CBAY is paying for two weeks of day camp for Sissy so she can get away and we can get a break.
I told Ms M as she prepared to leave, "Sissy won't stop having needs. Her challenges won't ever end. Plus puberty is just around the corner. When we get discharged from IFI, mark my words, it will be at best, a year before I'm calling you guys again."
Ms M nodded her head. "That's the most frustrating part of our job. Seeing our clients get discharged or stepped down in services by insurance before they're ready. Those cases ALWAYS return. It makes no sense."
At least Ms M understands. She's no more able to change the system than I am. Morosely, her lack of ability to alter the mental health services paradigm is comforting. It helps me know I'm not the variable in the equation that is causing the hang ups. It's also helpful to know that I'm not the only one that foresees the same prediction for Sissy's future. Bottom line, it's up to Sissy to see the need for change. I've said it before, Sissy's therapists and I can give her all the tools and support she needs for change but if she is going to choose to stay as she is, there is nothing more we can do.
After all that, 5 hours of sessions today, I had a migraine - flashing lights in my eyes, sensitivity to sound, nausea, clumsy motor skills, slurred speech ... oye. I've had lots of migraines lately. Do you think it might be stress? lol
I'm done, wasted, toast. These last two weeks have fried my resolve. As I said to The Dad this evening while I covered my eyes to block the light, "I just don't know how to explain to people how much energy and effort it takes to shadow Sissy all day, to explain everything to her so patiently, over and over, to keep a cool temper and a level head, to think ten moves ahead, to explain Sissy's issues to one more team of therapists, all day, every day, AND adequately parent AB and his separate needs and spend quality time with WG."
The Dad paused a moment and said, "I don't think you can. I don't think it's possible for people to truly understand unless they've lived it too." And then he added, "But you do an amazing job. I could never do it as good as you."
I needed those kind words today.
So to those of you that are living this life too, to those of you that get migraines from the stress, to those of you that can't catch a break long enough to come up for air, to those of you that have run out of energy to explain it all with patience and kindness one more time, can I get an "Amen!"