Q&A: How Can I Best Advocate for My Child in the Mental Health System?

Question: 

My children were terribly harmed by their experiences in psychiatric hospitals. I wish I could have advocated for them better. What are the best ways to advocate for one’s child when they first enter in-patient mental health treatment?

Reply from Steve McCrea, MS

First off, I am so sorry to hear your family had had to go through this! While it is rare that psychiatric treatment is fatal, less severe outcomes are, sadly, quite common. Advocacy is needed from day one any time a person engages with this system.

Study the System

You are best positioned to be an advocate when armed with knowledge. So before even engaging with the psychiatric system, it is essential to do your best to understand what it does and doesn’t have to offer. It does no good to go shopping for groceries in a sporting goods store. Before you “buy,” take a look at the services available.

Despite what you may see in the media, these days most psychiatrists don’t do any kind of talk therapy. Their main “product” is the prescription of psychoactive drugs, often euphemistically referred to as “meds.” The idea they tend to promote is that whatever mental, emotional, or behavioral problems your child may have, these are attributable to some kind of biological problem. The drugs are supposed to temporarily fix the symptoms of this problem so that the young person (and their family) is not suffering as much.

Any kind of in-patient setting will almost certainly be considering some kind of psychoactive drug or drugs as a central part of your child’s treatment plan— be it a hospital, a residential treatment center, a short-term “assessment and evaluation center,” or some other emergency treatment facility for youth designated “mentally ill” or “emotionally disturbed.” There will typically be some kind of (usually group) therapy offered in such programs, but it tends to be provided by counselors with a master’s degree rather than a psychologist (PhD) or psychiatrist (MD).

If you don’t want a treatment program that centers psychiatric drugs as their primary intervention, you will want to be very clear about that from the outset and do as much research in advance to find alternatives.

Research Your Options

The most important thing you as a parent can do for a child who is about to enter any treatment setting, or even see a psychiatrist on an outpatient basis, is to research and/or ask about the philosophy and tools with which this person, agency, or company works. Find out as much as possible about the treatments offered. Get a brochure or information packet, browse the facility’s website, investigate any specific treatment modalities online or at the library, and check out reviews from patients, former patients, or their parents. In short, be a conscientious consumer, viewing these services as something available rather than something in which you or your child are required to participate. Then evaluate whether these offerings are something you want for your child. This way, you can enter your first meeting with the providers fully informed as to what they have told the public about themselves…and what reactions the public may have had to them.

(A word about reviews: The number or percentage of positive or negative ratings is less important than whether there are patterns of compliments or complaints. I’ve found it helpful to look for specifics. “This place saved my kid’s life” type comments are not very helpful, but three or four different mentions that “the staff were not very responsive” should be a red flag.)

As I mentioned earlier, some of your research should include the range of other options that are available should this one not work out. You don’t want to feel or sound desperate, throwing yourselves on the mercy of whoever is willing to take your kid on, and then pray for the best. Your job is to protect your child, not simply trust that “doctor knows best.” Having more options means being and feeling more in control of the situation. Specifically, you might want to look at several different treatment facilities: inpatient vs. outpatient, ones with a more behavioral vs. a more biological orientation, ones with various kinds of therapy, ones that advertise themselves as “trauma-informed,” and so on.

Learn the Limits of Labels

Another important topic for research is “diagnosis.” Psychiatry’s diagnostic manual, the DSM, purports to enable doctors to identify what is “wrong” with someone based on criteria lists of feelings and behaviors; a certain number of criteria must be met for the person to “qualify” for a specific diagnosis. There are two serious problems with this approach:

• The criteria lists and descriptions of various “mental disorders” tend to be quite general and subjective. If diagnostic labels were only used as shorthand for talking about a problem, or just to bill insurance companies, they might be OK. But they are often used to categorize kids (and adults) without any real understanding of what the individual’s problem is or what to do about it.
• Diagnoses often lead to the conclusion that all kids with the same diagnosis are similar, even though the DSM itself specifically says that this should not be assumed. (This essay goes into further detail about the problems with psychiatric diagnoses and different ways to think about your child’s challenges.)

To be a good advocate, then, you will want to know which diagnosis (or diagnoses) your child has been given. Not because it will tell you what to do next, but because it will determine what kind of treatment they will be offered.

When I worked doing involuntary detention evaluations in an ER, I had to assign DSM diagnoses to clients. Because the diagnoses are so subjective and general, it is almost always possible to find two or three different ones that fit a client. I would choose the diagnosis that would allow me to get the client the kind of treatment I believed they needed.

For instance, PTSD, Bipolar Disorder, and Adjustment Disorder all have “mood swings” as one criterion on their checklists. But Bipolar Disorder is treated with drugs, Adjustment Disorder is treated with individual therapy, and PTSD is usually treated with specific kinds of therapy, with drugs offered as an add-on. I used to choose the Adjustment Disorder  diagnosis” as often as possible, because in my experience most people who are suffering with anxiety, depression, anger, or other intense distress are adjusting to some kind of event or trauma from their recent or even distant past. For more severe reactions to specific events, I’d push for PTSD over Bipolar, because this meant they’d likely be offered some trauma-based therapy instead of having drugs be the primary intervention.

So if you can get some idea ahead of time what kind of services you think might be helpful for your child or family member, based on their unique situation, and push for a diagnosis that will get that kind of service in place, by all means, do so. I’m not talking about lying, or forcing a diagnosis that doesn’t really fit, but getting a copy of the DSM and looking over the diagnoses and seeing which ones could fit. Advocate for the diagnosis that makes the most sense to you and that will get your child the type of help you and the child feel they need.

Set Clear Goals

Once you are prepared, go into a first meeting with the provider or treatment team with clear goals in mind for your child. If the child is old enough, work out these goals with them so the two of you are on the same page prior to the meeting. Be prepared to step in, preferably right from the start, and get your goals out on the table. Frequently, the professional staff will want to take the lead and explain what you should do and why you should do it. They will sometimes raise fears, whether intentionally or not, that failing to do what they say will result in some kind of disastrous outcome. Do not fall into the trap of reasoning from fear. Rather than reacting emotionally, evaluate what kind of people these seem to be. Do they share your values and priorities? If they start talking jargon, throw a lot of statistics at you, or act as if what you said is of no value, I’d suggest looking elsewhere.

Unfortunately, such accommodating facilities or open-minded doctors tend to be rare. Many are focused primarily on “symptom reduction,” meaning either “make the bad feelings go away” or “get the kid to behave more ‘normally’ or the way the adults want them to.” Ideally, they should be most interested in figuring out the circumstances behind your child’s difficulties and then helping them to develop some skills to manage the challenges more successfully. They should also aim to help you, the parent or caregiver, to develop better skills in handling your loved one’s particular needs or situation. In fact, I would make developing parenting skills one of your stated goals, and then watch to see whether the staff dismiss or minimize that in favor of pushing their preferred approach.

Shop Around

If you can, spend as much time as you need shopping around for help until you find providers who seem to connect with you and your child and whom you feel you can trust. If possible, don’t commit to anything at the first meeting. Tell them you will take what they’ve said into consideration and let them know what you decide. This way, you can take some time to get perspective on what is being offered and whether it fits your child’s and family’s needs.

Now is a good time to compare various options if you can find them.  If you can talk to someone else who has used this or a different facility or provider, that’s great, but again, get specific: How did they treat you? How did they treat your child? What were their primary approaches?  How did they judge whether they were successful? Did you find anything (or anyone) difficult?

Sometimes you, the parent or caregiver, may not have any control over which facility to use, such as when you don’t have full custody of your child, either through divorce arrangements or juvenile court interventions. Or perhaps your child has been placed under forced treatment and only one facility has beds. You should still show yourself to be a respectful but intelligent and well-informed consumer who is keeping a close eye on what is happening to your child. Attend all meetings and continue to ask what the goals of treatment are and how they will be measured.

Define “Success”

For instance, if a child is to be given stimulant drugs for an “ADHD” diagnosis, what exactly is supposed to improve? Is the child supposed to complete more homework? Stay in class more often? Stay out of trouble with peers? Get this very specifically detailed, so that an honest evaluation of “success” can be made. Very frequently, this step is skipped, and the evaluation comes down to asking other adults in the child’s life, “How is Alex doing on this new regime?” They may say “Much better!,” meaning “I’m finding Alex a lot less annoying!” Meanwhile, the underlying problem that was supposed to be addressed through treatment is the same as or worse than before.

Understanding the purpose of treatment(s) is particularly important if a drug intervention is proposed, but it applies to all interventions, including individual therapy. You want the provider to explain what it is that the intervention is supposed to accomplish, how we will measure that goal, and what we will do if it doesn’t seem to work.

Beware of Polypharmacy

With drug interventions, you will also want to know about any potentially adverse effects to watch out for, who will be looking for them, how they will evaluate whether they are occurring, and what they plan to do if these effects happen.

One of the most frequent problems that crop up is when a child is given a particular drug for problem A, and adverse effect B occurs as a result. Rather than saying, “Uh-oh, this drug isn’t really doing what we want,” doctors will commonly add another drug for side effect B. This in turn may result in side effect C, which then leads to a new diagnosis and another drug added, and so on. Before you know it, the child is on four or five drugs, has been moved to a higher-level facility, and is still having the same or worse problems than were originally being addressed.

I have seen this drugging cascade lead to serious deterioration very quickly. I once worked with a teenager whom a physician had diagnosed with Fetal Alcohol Syndrome (mild). She had trouble finishing schoolwork and goofed off in class a lot. Because of this, she received a new diagnosis of “ADHD” and was put on stimulants. Within a few weeks, she’d become paranoid and secretive, and had started acting out more severely, including collecting her own urine in a jar, pouring it on the back of the sofa, and blaming it on her foster sister. This deterioration clearly dated from starting the stimulants, and the potential side effects listed on the patient handout with the drug specifically included “psychotic reactions.” We advocated to have this drug removed from the girl’s treatment plan and her “ADHD” diagnosis reconsidered, but the doctors decided instead to increase her dosage of Prozac, which she’d been prescribed before the stimulants, and her caseworker was of the “whatever the doctor says, goes” school.

This led to a temporary improvement, but eventually her disruptive behaviors escalated further until she was tossed out of her foster home and put into temporary residential treatment. There, she received a new diagnosis of “psychotic disorder” and was put on an antipsychotic drug, which led to lethargy and weight gain. In the meantime, everyone seemed to have forgotten that the original problem she had was relatively minor: not completing schoolwork and goofing off. Now she was considered psychotic and on three drugs instead of one!

She did eventually choose to go off all the drugs, against her physician’s advice, and returned to her old self quite rapidly. The psychosis had clearly been caused by the drugs intended to help her, but the professionals failed to see this, and resolution only occurred when she took matters into her own hands. (Of course, she took a great risk in stopping by herself, and should have had medical guidance, but none was available to her.)*

So by all means, be clear about what any intervention (especially prescribed drugs) is expected to do and the type of adverse effects that may occur, and make sure that you and all providers are aware of and checking for these effects. If serious effects occur, especially if the original goals are not being met, don’t let them start “treating” the side effects with more drugs – have your child titrated down off the drugs and start over again with a new assessment.

Get Informed Consent

This brings us to the concept of “informed consent.”  As the parent or caregiver, you are entitled to receive informed consent from the medical providers regarding any treatment your minor child receives and, depending where you live, older youth may also have this right. While laws may vary a bit from location to location, the essence of informed consent is being told answers to the following questions:

1) What are the intended positive effects of the treatment offered? In other words,  what is the intervention supposed to accomplish?

2) What are the potential adverse effects of the treatment? For drugs, this should include a thorough discussion of side effects and how they will be handled, not a quick recitation of the “most common” ones along with reassurances that “this hardly ever happens.” The answer to this question may be the best way to evaluate whether a particular provider is worth engaging. If they are uncomfortable going into details or are overly dismissive, you’re probably dealing with a provider who won’t want to listen if something doesn’t go as well as expected.

3) What are the alternatives to the treatment provided, including the option of no treatment? In my experience, this discussion is almost always skipped by most providers, but it’s very important. Ask specifically what alternatives to their suggested treatment are available at the facility or elsewhere. If this makes the provider uncomfortable, or again leads to minimization or a suggestion that there are no alternatives, this person is not being honest with you.

In the process of seeking answers, the provider should validate your (and your child’s) right to decide for yourselves which course to take— and your right to hold them to account if they are unwilling to provide the information you seek.

Stand Your Ground

It is also your legal and moral right to agree to or to refuse a provider’s advice without any pressure or recriminations. If they threaten to report you to child protective services based only on your attempt to act as a caring parent and informed consumer, walk away if you can. The burden of proof is on them.

I will warn readers right now: Some doctors and mental health professionals won’t like it when you challenge them. I remember starting off one treatment team meeting for a kid who was doing quite poorly with the statement, “Well, it seems like whatever we’re doing to help so far isn’t really working very well.” The team was so defensive, you’d think I’d accused them of child abuse!

So, try to be as respectful as you can in your challenges, but if your child is not improving, or especially if the child is clearly being harmed, be prepared to put your foot down. Part of advocacy is being able to stick to your guns despite emotionally manipulative attempts to get you to back down.

Gather Your Allies

Another important aspect of working to change or stop a treatment program is finding allies. Residential treatment work is low-paying and of low status, and is often done by people still in school or recently graduated, often as a stepping stone to a better job. As a result, turnover is high and many workers are very green. However, there are many extremely compassionate people doing a very good job at difficult and underappreciated work. Find the ones who are there because they love the kids, who see their job as a calling, the ones whom your child speaks highly of, and get to know them. If you can get one or more of the staff on your side prior to a big meeting, it will be much easier to argue for changes in the treatment plan.

The first law of advocacy is that “everyone has a boss.” If you find your advocacy is not going the way you need it to, don’t be afraid to call in a supervisor, the unit or clinical director, or even the executive director as needed to get your point across. Be as polite and respectful as you can at all times, but be very specific about what isn’t working and what you wish to be done about it, and don’t worry too much about upsetting people.  Remember that people often “get upset” as a tactic to keep you in line. If someone is being disrespectful to you, go back to the first law: Talk to their supervisor.

Remember also that if your child is under the authority of a court, they may be entitled to an attorney and should get one, if possible. Also, every US state has a Court Appointed Special Advocate (CASA) program, sometimes known as a GAL program, which appoints volunteer advocates for kids in care. If you’re in the US and your child’s case is going in this kind of complex direction, get a CASA/GAL appointed. The CASA or the child’s attorney (or your own attorney) can call a hearing in front of the judge if the child’s treatment isn’t going well, and the treatment staff is not responsive to your complaints.

Don’t do this until you’ve worked through the chain of command to try to get the problem resolved internally, of course. But it helps to know (and for the staff to know) that you can avail yourself of a powerful ally—the courts—which will examine their behavior should a treatment program not be responsive to your child’s needs. This “nuclear option” can be an excellent way to motivate the staff if reasoning with them is not effective.

Advocacy Is Love

In the end, your child is the one who has to live with the results of any interventions, but you as their parent have to live with those results as well. Your child is counting on you to stand up for them in ways they are not able to. So gather information, look at alternatives, get allies, speak up, and hold your ground if things aren’t going the way they ought to. Unless you don’t have custody of your child, you as the parent have every right to demand fully informed consent and to withhold consent if you are not satisfied with the plan, the results, or even the facility itself. Even if the treatment team seems well-intended, don’t be shy about exercising those rights and protecting your child and family when you need to. No one else is in a better position to understand your child’s needs and to protect them: That’s your fundamental responsibility as a loving parent.

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*Disclaimer: Mad in America is not providing medical advice nor making any recommendations regarding withdrawal from psychiatric medications. For educational purposes, we encourage you to explore the links under “Psychiatric Drug Info” in the lower-right margin of the main Family Resources page.