On November 1st, Texas implemented STAR Kids, a managed care system for Medicaid benefits. (See here for an explanation of how and why medically complex kids like June have secondary Medicaid.) Like most families, we could not get any specific information about the change before it occurred, like whether eligibility requirements, family responsibilities, affiliated doctors/hospitals/nursing/DME companies, and program coverage would change or even what agency we would deal with to manage our care. Like most families, we were very nervous about the change, especially given the lack of transparency. And now, like most families, we still can’t get any reliable information. Everyone involved in this giant statewide process is “new” and I’m receiving conflicting answers even about the most basic information like who I speak to in order to update my case.
My attempts to find this information went like this:
Asking the waiver case manager back in June as well as in late October:
Me: So will the requirements change? When will they reassess our eligibility?
Waiver CM: I don’t know. They haven’t told us anything.
Me: Will you continue to handle our case after November 1?
Waiver CM: No one knows. They haven’t told me.
Asking the Medicaid rep when I chose a managed care provider in October:
Me: So, I’m choosing X for managed care. So do they provide our case manager then, or is it still our waiver program case manager?
Medicaid Rep: [confused] You’ll have a service coordinator at the managed care.
Me: So that’s who handles changes to my case for the waiver program?
Medicaid Rep: The waiver program? Is that through DADS [state agency]? If you’re dealing with DADS you just keep dealing with them. X is only managing access to providers on behalf of the state.
Me: I don’t know if the waiver is under DADS. So….I’ll talk to my waiver case manager still and I’ll have a managed care service coordinator. Do I have requirements to meet and report to both?
Medicaid Rep: Ma’am, your service coordinator will just help you find a doctor.
Me: We have all of our doctors. I need to make a change to our case.
Medicaid Rep: Let me put you on hold. …. OK, ma’am, yes, you’ll keep working with your waiver case worker. Everything else stays the same, it’s just that X will manage the doctors on behalf of Medicaid.
I was relieved at this answer, but suspicious of it since my case manager herself had not been told this reassuring news that her position was secure. So I checked back with her just in case after the switch.
Asking our waiver case manager after November 1:
Me: So…..I was told you are still our case manager? I need to make changes to our case.
Waiver CM: No ma’am. You need to contact your managed care provider.
Calling the managed care provider:
Me: I need to find out who my case manager is. I need to make changes to my case.
Managed Care: Do you need a case manager or a service coordinator?
Me: I don’t know what the difference is. We have this waiver and I need to update how we are fulfilling one of the family obligations to maintain eligibility.
Managed Care: Oh, you should talk to your waiver case manager.
Me: I DID. She says she doesn’t handle this and I need to talk to you.
Managed Care: Oh ok. Hmm. Please hold, I’ll check…. Ok, yes. So what’s your zip? And your waiver? And the birth date? Ok….you need to call this number…
Me: I just called you. Isn’t this the managed care line?
Managed Care: No ma’am, it’s the eligibility line for your managed care.
Me: Listen, I just need to know who I will be dealing with, and I need to make a change in our case. No one knows what’s going on here.
Managed Care: I understand.
And she proceeded to try to explain the layers of programs and institutions involved and ultimately gave me another number to call.
Calling the second managed care number
Managed Care2: So we will need to schedule an initial assessment for you.
Me: OK, that’s fine. I actually need to make a change to my case right now, too. Are you my service coordinator?
Managed Care2: [chuckle] No, ma’am. I’m a scheduler. I am calling 200 people to schedule their assessments for the next 5 months, and once they are scheduled a case manager will assign everyone to service coordinators before their assessment dates.
Me: So, I may not have a service coordinator until April.
Managed Care2: Yes, but if you need anything before you have a service coordinator assigned I have this other number for you to call……
Me: [SSSSIIIIIGGGGHHHHH] Ok. Well have any of the eligibility requirements changed? I noticed that our waiver is no longer on the waiver list on the Medicaid menus, and someone said it was going away. Is it going away?
Managed Care2: Um, it’s my understanding that nothing has changed. We wouldn’t discontinue any waivers- we don’t have the power to. Only the state of Texas can do that.
Me: Ok. So, is the state of Texas discontinuing our waiver? It isn’t even listed on your phone menu options.
Managed Care2: [in a state of wonder] Well, I don’t know, I haven’t heard anything like that. I’m new to all this! Have you seen our website- it has wonderful information.
Me: Ah. I. will. check. it. out. Thanks. [The last time I checked the Medicaid websites, both the old the new ones, the information basically amounted to “Medicaid is changing to STAR kids on November 1!” but it did not have specific updated forms and requirements.]