Tune into our audio segment on navigating the system ~ search for ‘Shrinking It Down’ wherever you get your podcasts.
I’m going to try to describe how hard it is for families to navigate the mental health care system in the United States. In fact, even the term “system” is problematic here.
“System” implies a functional set of predictable circumstances that help to guide us through complex processes. A navigational system on a boat, for example, makes it that much easier for the boat to traverse treacherous waters during times of risk. If the sailor is unable to reliably rely on the system, that boat will crash and sink.
As many patients will tell you, the system guiding them toward mental health care rarely provides safe passage. Of course, this is not news to anyone who has ever tried to navigate the particularly obtuse waters of needing psychiatric help.
There is no system, because the system, as it stands, is more broken than not.
In other words, each time that mental health care is needed, patients and their families are learning all over again how the system works. Though medical care is hard to obtain on many fronts, psychiatry stands alone in the difficulty to obtain care. This is especially relevant given the high rate of psychiatric disease, the relative treatability of psychiatric disease and the dire consequences of these diseases when they are not appropriately addressed.
The best way to illustrate these points is to tell a story. While this story isn’t true, it presents an entirely plausible scenario, and is therefore emblematic of what can happen when families require psychiatric assistance. After the story, we’ll discuss what the family could do at each step where they felt stymied. In that sense, it’s our hope that this piece will be as empowering as it is illuminating.
Mary is a 13-year-old girl from a middle-class family. Her father is a city planner, and her mother works as an administrative assistant at the local middle school. Town budget cuts have hurt both parents’ incomes, and while Mary understands these issues, she finds it hard to stomach her getting hand-me-downs from her big sister when her friends don’t seem to have to make the same sacrifices. Because Mary is in middle school, the developmental need to fit in is all-important (refer to our previous blog and podcast on this topic), and the fact that her clothes look more dated than what her peers are wearing causes her great distress. Add to that the fact that she overhears some girls commenting on her clothing in the cafeteria. After that incident, Mary begins eating by herself in study hall until a teacher insists that she return to the cafeteria.
At this point, Mary begins refusing to go to school. At first she complains of headaches and stomachaches, but after her pediatrician tells her that she “probably just has a bug,” Mary digs in her heels, and refuses to attend school for over three weeks. She also begins to sleep more, eat more carbohydrates, and lose interest in things that she once enjoyed. She also starts to make small cuts in her arms with a kitchen butter knife, hiding them by wearing long sleeves.
Her parents discover the cut marks at about the same time that the school calls and insists that Mary return. Not knowing where to turn, the parents go to her pediatrician. The pediatrician, however, notes that while she does have a mental health clinician to whom she often refers, due to the town budget cuts and subsequent downgrading of the parents’ insurance policy, Mary is not able to be seen by this clinician.
The pediatrician recommends that Mary’s parents call the “mental health number” on the back of the insurance card. The insurance company provides Mary’s parents with a list of names, and suggests that they make an appointment with any of the providers listed. Her parents start calling, but almost never get a call back—or when they do, it’s the doctor informing them that he or she has a full practice. Some of the names on the list refer to doctors who are no longer practicing; some refer to doctors who have moved away. Some even refer to doctors who have passed away. Eventually, Mary’s parents give up, Mary continues to not go to school, and one afternoon, Mary accidentally nicks a vein while cutting her arm. She bleeds a great deal, is taken to the emergency room and hospitalized.
“Why didn’t you get her care sooner?” the tired-looking resident on call asks in the emergency room.
“We tried,” her parents reply.
Is this dramatic?
But is it plausible?
Finding mental health care is complicated, byzantine and inefficient. There is little rhyme or reason to the process. Studies have found that even in standardized systems of healthcare, children with developmental or mental disabilities have a nearly three times harder time finding appropriate services.
There ARE, however, things Mary and her parents can do to increase the likelihood of receiving care. While these tips do not in any way ensure that Mary will obtain care—in fact, if these tips were 100% successful, there would be no need for this blog—we do know through trial-and-error that these mechanisms can potentially help.
“But her pediatrician told her that she ‘probably just has a bug.’”
At this point, Mary’s parents, understandably concerned and confused by their daughter’s behavior, can impress upon the pediatrician their worries. Many pediatricians have screening tools in the office for assessing the likelihood of a psychiatric trouble. The Pediatric Symptom Checklist is probably the most commonly used screening instrument, and if the pediatrician does not administer this or another screening tool, Mary’s parents can ask that she spend more time talking with Mary in order to ascertain whether a psychiatric process may be to blame for her difficulties. Many pediatricians do not ask these questions routinely, though most will gladly comply if the parents or patient bring it up.
“Because of the town budget cuts and subsequent downgrading of her parents’ insurance policy, Mary is not able to be seen by this clinician.
These kinds of insurance limitations are increasingly common, even within the same practice. Still, the mental health clinician is especially equipped to speak with Mary and determine the severity of her needs. It’s always worth asking whether the mental health clinician would be willing to perform a preliminary assessment, at least to make information available as Mary’s parents search for a more permanent provider.
“The insurance company provides Mary’s parents with a list of names, and suggests that they make an appointment with any of the providers listed.”
This is an especially frustrating aspect of the current “system” by which families are asked to find mental health care. However, many insurance companies will provide assistance in narrowing the list provided—they just have to be asked explicitly to do so. Increasingly, insurance companies are starting to keep spreadsheets of clinicians with practice openings. After the first incident in which Mary’s parents call a provider who has moved or passed away (this happens more than you’d think), they can call the insurer and gently demand assistance. If assistance is not immediately helpful or forthcoming, they can then call the mechanism that each state has in place for making official complaints against insurance companies. In Massachusetts, information on how to file these grievances can be found here. Remember, the purpose of such a complaint isn’t simply to report the lack of helpfulness on behalf of the insurance company; Mary’s parents need to make it clear that they require help, and that they need the state to assist them in obtaining it. Knowledge of this complaint alone is often enough to get the insurer to provide greater assistance.
“Eventually, Mary’s parents give up.”
This is the point where Mary’s parents, as hopeless and frustrated as they might feel, should turn to their state and local representatives. A well-placed personal message to a local politician who represents the parents’ district can often make things happen that seem impossible in the absence of a little political pressure. In the best case scenario, the state representative calls the insurer, which jumps into gear in helping Mary and her parents find care.
Of course, it isn’t always this problematic, but it certainly can be. Next week, we’ll discuss what questions to ask your child’s mental health clinician once the first appointment is in place.