And the saga continues with attempting to set up Alfonse with decent services. The bizarre nature of how hard it is for a mentally ill person to actually receive the most basic of services to help them, although on the surface they appear available, keeps getting stranger.
Just doing a quick recap here to continue to document this maze of the mental health system in AZ which, in my opinion, is designed to disallow mentally ill people from actually receiving services while taxpayer dollars go to the providers and, in some cases, like a squeaky wheel situation such as myself, patients are punished for actually trying to reach out for adequate care.
So where we stand now. The completely dysfunctional and broken ACT Team proves over a period of months that John is just not going to get about 90% of what was promised when he was transferred there. And what he did receive was marginal and sporadic. Let’s not forget, the only service they ever provided were unnecessary “med checks” which were unpredictable and boiled down to 5 min. home visits to watch him take his medication. No assessment, no continuity or relationship building, just a pop in to watch him swallow his pills, on their timing while he sits around and waits, the signing of a paper then leaving. That is the sum total of what he received.
On John’s transfer to the ACT Team, I was with him, and we discussed how John is totally med compliant, how the last thing I worry about with him is taking his meds and needing to be observed, but how he needs socialization, meaningful volunteer work, at times some home management issues and counseling. They forced us to let go of the Dr. who John had started counseling with promising they’d find someone else for him . Why, I don’t know as John had already established a relationship with this Dr. In the end they provided a BIG FAT ZERO for all those other services. None. Ever. When I would ask about them, I was told his case manager would need to assess him for those things, “bring it to the team” who would then “staff it” then decide if in fact he needed those services then provide them. The basic assessment for those services never happened. In fact, two out of three case managers he had with ACT Team never met with him even once. Not once. Other than perhaps it being their day to pop in for the 5 minute med check. Do you see what we’ve been dealing with here? A shell game. With John waiting and waiting and waiting for nothing. After being forced to terminate with the one person who had been helping him. For a reason that was never explained to any of us.
This all culminated in to a day a few weeks ago where his “Recovery coach” from another system showed up to find him having waited for hours for the “med check” person to never show up or contact him (not the first time), thus he didn’t take his morning meds, thus he was hallucinating and talking about harming himself. She watched him take his meds then watched him calm down, called his case manager at the ACT Team and reported this who then proceeded to hang up on this volunteer when she told this “Intensive Monitoring Case Manager” about one of her clients in an acute status and saying “someone dropped the ball”. This is the level of service John received for months with this terribly dysfunctional “team” put in place to manage the sickest of the sick. I kind of have to agree, no one dropped the ball, as no one on the ACT Team has ever held the ball in the first place. They have never actually engaged in a relationship with my brother, over a period of months.
That was the day we decided to pull him out.
So John goes to sign the required paperwork to get discharged from the ACT TEAM only and in reality is handed a paper which closes him out entirely from the entire mental health system: Magellan. The system the ACT Team is contracted with. Even though the word “Magellan” is not mentioned on that paper, that’s what they effectively did. Obviously John didn’t understand he was relinquishing all rights to ANY services in the entire State of AZ with removing himself from this “Roach Motel” situation. But it’s what they did, as a final parting shot. It’s one of those “if you won’t have us, you can’t have anyone else” type of deals. Even our lawyer, who has worked in these systems for years, agreed, at this point it’s become punitive to John.
What in the Hell is wrong with these people? Seriously? Did they ever care about this population? Have they been worn down by the system? What has happened to these people?
Let’s not forget, at Choices Enclave they boast all of these classes and groups, including support groups for family members. No one EVER told me about those family groups (I saw them on the website), HUNDREDS of patients walk through those doors and my brother was usually the only person attending the classes there. Sometimes he said there would be one other, the most he ever saw was 4 people. This means one thing: NO ONE is encouraging them to get to those groups. No one from Choices Enclave encouraged my brother! That was all me and his advocate getting him hooked up there. Hundreds of participants and one person shows up regularly? And they KICKED HIM OUT!!! Because he wanted his private Dr. , they kicked him out of all the services. Now they don’t have to hold those groups if their one participant doesn’t show up. See what I mean? It’s a complete and total sham.
So now, after lengthy talks with the Magellan Ombudsman (who seems to be wanting to help us) and our attorney, our private advocate and the director of the new facility we are trying to get him plugged in to, we are strategizing a way to get him REenrolled back in the system without too much water rippling so he can quietly slip away from that hideous ACT Team, from Choices Enclave altogether and get transferred to a new clinic (my attorney prepared me to see ACT Team try to cut him off at the knees again but it’s his legal right to transfer). Then get him set up in a simple system with his own private Dr. and the classes/groups/community at Wellness City.
I’m convinced, after all we’ve been through, that the Mental health system in AZ is designed to, like many insurance companies, disallow or discourage services for the population they are designed to serve. And at worst, punish them for demanding the services they are designed to provide.
And I’m not alone in this perception. But I will keep speaking aloud about it and if nothing else, educate tax payers about what is REALLY happening with this population.
It’s not that the money isn’t there: it’s that apathy and incompetence are ruling the day. A lethal combination.
And I will not shut up about it.
You can read more about our attempts to navigate the mental health system
breakdown in AZ here and here.
7 thoughts on “still fighting”
Bad enough the care is so poorly given, but wouldn’t you think if a family is willing to pay for many of the necessary services that they would not be so hard to get? So whether self-pay, insurance paid, or other assistance, the services seem poor to non-existent. I am so glad you are able to give this a voice, KCL. I know it is an added anxiety, but bless you for trying so hard. You are the best sister, and a welcome advocate. (I think it is probably very similar no matter which state we live in. 😦 )
Why not get in touch with the Attorney General’s Office and file a complaint of medicaid negligence, just for starters. And then look very carefully for a lawyer who is willing to file a lawsuit against the provider and the individuals/employees responsible for the negligence. Sad to say that this is becoming an all too-often scenario. I am also outraged at the corruption, but not surprised. It is systemic, and if the truth be told, what you are seeing is probably just the tip of the iceberg. I would be interested in seeing what services this provider is charging medicaid.
We are all rooting for you.
John receives services via Social Security/Disability I believe and qualifies for the State funded Magellan plan. Which his latest program cut him off at the knees with having him sign a form that apparently doesn’t indicate he’s removing himself from the entire system, but did just that. It’s infuriating. The hard thing is that the groups that service mentally ill people, where he can benefit, are under the Magellan network so he has to be in that umbrella to get serviced at this one clinic for groups and classes and social activities. This one appears to be functioning with a decent number of participants
as opposed to the last one. But getting him in there is our task at hand right now . It’s exhausting fighting your way through these systems I’m telling you. Thanks for the support, friend out there.
Thanks for the update. Prayers for your dear brother…
Whatever you do to the least of mine you do to me.we all gotta look in the mirror baby..
Dream job driving the karma bus!