The need to confront some basic issues about our mental health, developmental disabilities and substance abuse systems
Imagine you are the family member of a person who for several years (perhaps most of their life) has been the subject of a "dual diagnosis" of developmental disabilities and mental illness. Not only is your loved one mentally retarded, but they are afflicted with a mental illness that prevents them from succeeding in a wide variety of social situations (like, for instance, a group home). There are several hundred of such persons in North Carolina – many of whom were the beneficiaries of a lawsuit brought during the 1990's referred to as the "Thomas S." case.
Imagine further that, after years of struggle and frustration, you finally managed to secure services for your child or sibling that allowed him or her to live in their own apartment. Now, for the past decade, your family member has been living in a reasonably stable and decent situation that features three enormous pluses:
1) They receive decent, round-the-clock assistance,
2) They are not institutionalized,
3) You do not have to sacrifice your entire life and wellbeing in order to assure that they reside in a decent situation.
Even if the closest one has come to such a situation is caring for a sick loved one for a brief period, it's not hard to imagine the tremendous relief and peace of mind that such a situation would provide.
Now, imagine you are in this situation and that you receive a letter from the powers-that-be that decisions have been made within the Mental Health, Developmental Disabilities and Substance Abuse (MHDDSA) bureaucracy that your child or sibling is no longer entitled to the services they have enjoyed.
Rather than round-the-clock assistance, there will now only be coverage of 12 hours per day. The practical result of this decision you know, is that your loved one will have to move out of their home and into one of two places: your home or, assuming that's not possible, an institution in which they will almost certainly fare much worse than they do now.
This is, in essence, the situation that is the subject of a lawsuit brought last week by the lawyers at the nonprofit advocacy group known as Disability Rights North Carolina. The case (Marlo M. and Durwood W. v. Cansler and Salacki) involves two adult individuals who were notified earlier this fall by the state-designated provider of services in their region of the state (an organization based in Rocky Mount known as The Beacon Center) that it and the state would no longer cover the care that makes their independent living possible.
The Disability Rights lawyers argue, quite logically, that the Americans with Disabilities Act (as interpreted in a 1999 U.S. Supreme Court case known as Olmstead v. L.C.) prohibits such a result. That case made clear that it is unlawful for public entities like the state of North Carolina and The Beacon Center to fail to provide qualified, disabled individuals with a community-based placement when such a placement is appropriate; the individual wishes to reside in the community; and the placement can be reasonably accommodated.
The preliminary good news on the lawsuit is that it's off to a good start. On Monday of this week, Federal District Court Judge Terrence Boyle issued a temporary restraining order in the case that forbids the MHDDSA bureaucracy from cutting off Marlo and Durwood as had been scheduled for Tuesday.
A hearing on the plaintiff's motion for a preliminary injunction has been scheduled for December 28. With any luck, Judge Boyle will issue the injunction and the defendants will back off of their miserly position (a position that does not appear to have been adopted in any other region of the state as of yet). This will be an excellent result for Marlo and Durwood and hopefully set an important precedent.
A Rube Goldberg system
Whatever the outcome of the lawsuit, however, it's a sure thing that it alone will not solve the broader, structural problem affecting North Carolina's MHDDSA system – a problem of which Marlo and Durwood's case is but one egregious symptom. That problem is the convoluted and, at times, downright ridiculous way in which the state delivers these essential safety net services.
For decades, North Carolina provided (or attempted to provide) a rudimentary MHDDSA system based on a network of large, state-run institutions. Too often, of course, that system was pretty lousy. As in most states, funding was always inadequate and facilities were understaffed and poorly maintained. Often populations were inappropriately mixed and in many instances, people were inhumanely warehoused in terrible living conditions.
Eventually, a combination of factors (including persistent advocacy by a lot of well-meaning groups and individuals) gave rise to a movement that worked to deemphasize the use of large, centralized hospitals and to promote less restrictive community placements. Hence, laws like the Americans with Disabilities Act and the Olmstead case noted above.
The only problem with the move to tear down the old system of warehousing overly-medicated people in large central institutions was that no one in power ever really figured out in detail what the humane and effective alternative should look like – at least not with the paltry amount of funding that state and federal budget makers were and are willing to allocate.
Here in North Carolina, this fundamental problem has led to a number of partially-baked "reform" efforts in which, among other things, decision makers have:
a) turned a good deal of the authority for running MHDDSA to a confusing network of quasi-private, quasi-public groups with the hyper-bureaucratic moniker "Local Management Entities" (or "LME's"), and
b) bought into the cockeyed notion that for-profit contractors ought to take on some of the functions once reserved for public employees.
The result has been, in many ways, a worst of all worlds situation. Not only have huge numbers of former hospital clients simply been turned loose (often at homeless shelters) with little more than directions to somehow shop from a group of providers who would "compete" for their "business," but, at the same time, vast amounts of funds have been wasted in payments to greedy contractors – even as decision-making authority over what individuals can and can't receive is vested in the mysterious LME's.
This latter problem is at the root of the new lawsuit, where the decision to cut off Marlo and Durwood has been traced to The Beacon Center, which serves as the LME in Rocky Mount.
Facing up to the hard facts
Lawyers in the Marlo M. and Durwood W. case rightfully point out that it's often actually cheaper to serve people like their clients in their own homes than it is in institutions. Unfortunately, it is also true that the convoluted way in which states fund MHDDSA services (a combination of federal Medicaid dollars and state funds) can sometimes make such results hard to attain.
It's also true that if more people were offered the option of real and decent community placement, demand for services might well increase as many a hard pressed parent or sibling came forward to seek help with a loved one for whom they have borne the burden by themselves.
This last fact serves to highlight one of the biggest elephants in the room: There is no real free lunch when it comes to MHDDSA services. Ultimately, if North Carolina is going to fashion a modern, functioning and humane system, voters and elected officials simply must face up to the fact that it won't be enough to simply jury-rig the federal Medicaid system like the state does now. More state dollars will be necessary. These expenditures don't have to be fiscally debilitating (the savings in the congressional health care proposals could, for instance, probably cover them), but government simply must do and spend much more than it does now.
Hopefully, it won't take a new round of litigation and court orders to make this happen.