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A Journey through Crisis...

Updated: Sep 8, 2023

Notes on the pathway through the mental health system for families with kids struggling with mental health & substance misuse issues

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Background/Intro

These are some notes I’ve compiled outlining the pathway for families with children struggling with mental health/substance misuse through the traditional mental health system. The information is specific to the US system, and in particular New York, which is where my daughter was living when her journey started. These reflections are tailored towards the situation of families with the finances to consider wilderness therapy and therapeutic boarding schools which is the recommended trajectory for kids struggling with significant mental health and substance misuse disorders. This information is by no means comprehensive, comes both from my personal experience observing, researching, and advocating for my daughter, as well as participating actively in networks of struggling families. Our family is privileged with insurance and a certain amount of economic resources which we have been able to tap into. The journey for families and children without these privileges looks much different; if our experience provides evidence of a broken system, their journey, characterized by the most vulnerable children left to languish in emergency rooms for days on end, provides evidence of systemic inhumanity coming from the country’s deeply skewed priorities


Starting at age 15, my now 17 year old daughter has been through 3 hospitalizations, wilderness therapy, two therapeutic boarding schools, a rehab, and is currently in a new program, really a therapeutic farm, for young people aged 16-26, struggling with addiction and underlying issues, and on the island of Cyprus. (We were attracted by the program’s approach which centers young people’s agency in the process of change)


First stop: Psychiatric hospitals

Psychiatric hospitals are often the first stop for struggling kids, and are generally covered by insurance. Public hospitals (such as Bellevue in NYC) take kids that don’t have insurance. For example if a child discusses with a school counselor that they are self-harming, or having suicidal thoughts, then parents will be called to bring the child to the emergency room for an evaluation. (If parents don’t take the child, then the school will call 911.


Sometimes kids are taken instead just to an emergency room, based on location, etc. In these cases the hospital will have the child evaluated by a psychiatrist, and then if it is decided that the child needs ongoing care, the family will wait for a bed. The family at this point does have a choice of where the child is placed, and can advocate for the best option.


Kids are admitted to psychiatric hospitals for a variety of reasons, depression, suicide attempts, anxiety, school refusal - if the child ceases to “function”, etc. These hospitals are of varying quality, generally are very pro-medication where many kids get their first psychiatric evaluation and ensuing diagnoses. They are not meant to be “therapeutic” , have few psychologists on staff, but rather for stabilization, until it is deemed safe for kids to go home, with the appropriate follow-up services, or on to a residential program. (This is required by law, that kids are discharged with an appropriate plan for follow-up services)


Unfortunately, many kids (particularly, but not only, lower income kids) often stay in “psych wards” for a month and beyond, because there are simply inadequate follow up services, and/or no beds in insurance covered or public residential programs. The length of time kids spend here is particularly problematic, which many parents don’t realize, because of the “contagion” factor when you put together a group of vulnerable kids in crisis, with varying needs, life experiences, drug and alcohol use patterns, self-harming behavior, etc. Kids are exposed to and may pick-up new ways of harming themselves or using substances as well strengthening their identity as a person with a particular mental health diagnosis (or set of diagnoses) and so start seeing themselves as “broken”, in need of medication etc. This doesn’t always happen of course, but it is a risk, and I have experienced this myself, as have other parents I am close to.


Kids that have more complex diagnoses (so for example an eating disorder, substance misuse disorder, depression, etc.) are often particularly hard to place as the programs in no way reflect the complexity of the reality of mental health issues kids are struggling with. There will be a social worker that is assigned to the family, and then based on their insurance, will work with them to find “beds” in appropriate facilities, or make referrals for follow-up care.


In urban areas like New York there are of course excellent psychiatrists and therapists, yet many are not taking new clients and/or don’t accept insurance. For example, the therapist we were seeing initially in NYC was charging $500 an hour for our daughter, and insurance would reimburse us about $70 of this. Regardless, when you have a child (and family) in crisis, both the family and the child need significant support, and once a week sessions are simply inadequate. There are more intensive outpatient programs that are available to children, which hospitals will refer out to. The options generally are:


Intensive Out-Patient programs (IOPs) -

Kids go 3-4 times a week for a combination of therapy and group therapy, and there are programs covered by insurance. DBT or Dialectical Behavior Therapy is the (expensive) flavor of the day that many of the best programs claim to be based on. Insurance will often cover some of this, for a limited period of time, but generally not the “best” programs. Note that if a child has substance misuse issues like my child, these programs can be highly problematic. The substance programs are often underfunded or money makers for someone, are not generally run (in my experience) with very competent staff or supervised well, and kids end up using these spaces as a place to connect with others and do more substances. (In fact many programs are closing down the youth programs because they are so hard to oversee for this reason.)


There are also programs that will support parents/families in crisis, some private and some run through government programs. Team Wonder is an example of a private (expensive) program. New York City, we've heard, is making an effort to provide more and higher quality services to kids with mental health issues, and their families. Here is an example of one program that provides home support to families.


Partial hospitalization programs (PHPs)

Some of these programs are covered by insurance, such as in New York Mt. Sinai’s CARES and Bellevue’s PHP program. They have kids come for the day, do individual and group therapy, and go to school. In many parts of the country, these are hard to find/access. The challenge is that the child goes back in the afternoon to her home and surrounding environment, and generally there is little support for parents, etc.

Residential Programs

If families, in consultation with a teen’s doctors/therapists, feel that it is unsafe, unwise for a child to go home, then higher care or residential treatment is considered. Insurance generally won’t cover more than a few months at these programs, and generally the ones that accept insurance tend to be lower quality (less therapy, lower ratio of staff/patients, more traditional “behavior-focused” approaches vs. relational, etc.). Many of the residential programs are located in states with stronger parental rights frameworks (Utah, Arizona, North Carolina, Georgia, etc.) , and so kids can be obligated to stay in these programs. These programs often are diagnosis specific, and don’t accept kids with co-occurring issues (such as eating disorders and substance misuse)


There has been a lot of critique around residential programs and the industry that has been built up around “troubled teens’”. While there are legitimate concerns for teens having their rights taken away and being put in a vulnerable situation with strangers, there are also situations in which the child is a danger to herself, others and the family has ceased to function so residential treatment seems like the only option.


Wilderness Therapy (WT)


Wilderness Therapy is often the first step for many families (with resources) post hospitalization. They are from 550-700 dollars a day, and generally last about 2.5-3 months - so about 50-70,000 dollars. Many families borrow money, take funds from educational savings accounts, and refinance homes, etc. Some insurance companies will reimburse for certain expenses but it is largely out of pocket. In a few cases school districts have reimbursed for “Wilderness” after being sued, but this isn’t common. (See below on School district funding). Some families choose to go directly to a longer term RTC, but more and more they are requiring Wilderness first, in order to provide the necessary “reset” that the child supposedly needs. WT programs have different styles - nomadic, base-camp, adventure, etc. My daughter went to Blue Ridge WT (nomadic) which overall was high quality, Open Sky is another top program, and Pacific Quest in Hawaii is another that we considered, and that I have heard attracts particularly committed staff.


WT programs are known for taking “complicated” , high risk, kids, including those that self-harm, although generally not actively suicidal. (When kids are considered high-risk for self-harm they will often sleep with a staff member on each side of them). They will also take kids with eating disorders, as long as they are medically stable. (A note about girls/kids with ED and WT, diets are often fairly limited, high calorie/carbohydrate and weight gain, often significant, is not unusual. Kids often have to carry peanut butter with them. For kids that turn to food to meet emotional needs, the context can complicate things). Many people use Educational Consultants (ECs) to select a program that meets their child’s specific needs, and to help them navigate through the program and most of all decide on after-care. We didn’t use an EC until the end of my daughter’s stay in wilderness therapy, which we felt ok about. I did my own research on the Facebook groups, interviewed programs etc. and enrolled my daughter in Blue Ridge. I asked for a discount, which we received. There is also a scholarship fund called Sky’s the Limit which helps families with the cost - lowering the cost by about 20% or so, but it is still obviously very expensive. In reality the therapist comes out to the woods once maybe twice per week, and so the therapeutic work comes from the healing power of nature, and the structure and facilitation of the group your child is placed with, by the wilderness staff. In general, wilderness therapy tends to attract higher quality therapists and staff than most RCTs/therapeutic boarding schools. The therapeutic milieu is more innovative, appealing to people who are thinking more expansively about mental health, the setting of the programs attracts people who love the outdoors, etc. People say that their WT program was “life changing”, but this isn’t unanimous.


I write more about this in reflections below, but a little over a year after my daughter completed her stay at Blue Ridge, I feel that it did contribute to her having greater awareness of herself and mental health in general, and solidified her view of nature as healing. The cost to this was her feeling that she was cast out by her family, and was made to suffer/struggle unnecessarily (for example, the kids sleep under tarps, on the ground, use outdoor toilets, don’t have showers, etc.) Given that this in most cases isn't a child’s choice, it can feel like they are being punished for their struggles. Again, while I felt that the quality of the program was high, there were some staff (generally young people that didn’t all have significant training) that weren’t able to contribute to the therapeutic quality of the experience, especially given how vulnerable the kids in these programs are.


Many say that the most important outcome of wilderness therapy is the impact on the family. Most of the high quality programs have a family component, based in family systems therapy and drawing on some aspects of Conscious Parenting. Parents start their own journey by reading The Parallel Process, listening to podcasts by Brad Reedy, and generally gaining an understanding that they are equally responsible for doing “the work” and making changes in themselves. This realization, that it’s not just their child that needs fixing, is eye opening for many. I note that the outcome sustainability for kids and parents alike is tenuous, as it takes a real commitment to continue the growth beyond the intensive 2-3 month period provided by WT programs. Some WT programs have a “graduation” while some like Blue Ridge, decide on a date when the child has maximized their benefit from the program. Towards the end of the program the therapist will also discuss next steps with the family, which almost always involves a longer term program so that the child can practice new tools and behaviors in a contained environment. This is often a hard conversation to have with the child, and this reality isn’t always made clear to the family from the beginning.


Residential Treatment Centers (RTC)

RTC’s can be either short-term or long-term, and if they are long-term they are often interchangeable with Therapeutic Boarding Schools. They are often considered a “higher level of care” - meaning more restrictive, a higher staff-patient ratio, able to deal with higher-needs kids, and as such can also be more expensive. They often offer schooling as do TBS. Some RTCs are considered “rehabs” which address substance misuse. Insurance will generally only cover costs of RTCs for a short amount of time, and almost never more than 2 months. They are often located in parts of the country where laws give kids less consent in their treatment, and often the staff are not paid well, and drawn from local communities and may not be particularly well trained in terms of mental health issues (I would say this particularly applies to TBS below). Some examples of Residential Treatment Centers are:


There are also short-term high level of care programs, where kids are sent to when experts feel they need further assessment and stabilization prior to placement elsewhere (so for example a TBS may require this). An example is Vive, which seems to be covered by most insurance. Some kids are sent back to a wilderness program as another reset, prior to returning to a TBS or longer term RTC.


Therapeutic Boarding Schools (TBS)

These are similar to boarding schools, with a strong therapeutic component, and more restrictive environment. So there are lots of rules, individual and group therapy, etc. There are very few instances when the recommendation post WT is for kids to go home, and so generally an EC is hired at this point, in order to help facilitate the child’s admission to a TBS. (see below), or a RTC (above) if the kids' needs seem to require a higher level of care. In my experience, and with few exceptions such as Roots Transition below, TBS are lower quality than WT programs. They are often located in parts of the country where laws give kids less consent in their treatment, and often the staff (particularly residential staff) are not paid well, and drawn from local communities and may not be particularly well trained in terms of mental health issues. A year can also feel like a long time for a teen to be in a very restrictive environment, and then need to go home and be expected to function, etc. TBS run about 15-25, 000 dollars a month (sometimes school district funding can be obtained for these programs) Some examples of TBS are:


Educational consultants


The Educational Consultant (EC), is a thriving line of work. Families that can afford to, often hire EC’s once they feel their situation has reached a crisis point, and their child will need some residential support. (ECs are generally between 5-10 k, but this depends on the number of placements - many kids, as my daughter did, have multiple placements..) or so, some will be flexible and agree to an hourly rate, or discounts for lower-income families) Many ECs have knowledge of the entire country, while others seem to have more of a geographic focus. Some also work with specific “types” of kids - neurodiverse, adopted, etc,

The EC will help the family navigate selecting a program (Wilderness, TBS or RTC, etc,) and then act as a liaison between the family and the program, as well as helping the family to understand their child’s process. They look at your child’s needs, and try to match with a program and for WT, often with a specific wilderness therapist. Some ECs also provide some degree of parent coaching. The ECs will often have independent relationships with residential programs, which they often are able to leverage to advocate for families. An effective EC will often be in touch with therapists and advocate for you in times of need. For example, if the program finds that your child isn’t a good “fit” for the program the EC will try and bargain for more time, and work to have your child accepted elsewhere. The ECs generally have personal knowledge of programs and connection with staff and so you get more attention. Some families experience triangulation between the program, the EC and parents, and have noted that they would prefer a more direct relationship. There are parents who have found evidence of conflict of interest, that their EC pushed them towards a certain program, but this seemed to be the exception. In general, families that didn’t seem satisfied with their EC was due to lack of accessibility (EC was always busy) and/or resourcefulness.


Some recommended Educational Consultants are:

One Oak Therapeutic Consulting (Katie Conroy Ciervo). This is our EC.

Tree Andrew is another name that is mentioned positively. There are many and the FB group mentioned below can provide recommendations. (This is a good resource for everything..)


Here I have posted a response to an inquiry from an EC, which is transparent about the costs involved:

Dear Catherine,

Thank you for reaching out to inquire about my services. I am sorry to hear that your daughter is struggling. In terms of my fees, I charge 6800 which includes two placements: one short term, and one longer term aftercare. I work with families for the entire time the child is in programming up to a full year for that amount. I appreciate your transparency re funding. To be honest, my fee is a small fraction of what programming costs. Usually for private pay, you are looking at 100,000 or so in terms of cost. There are some insurance driven programs but that is always a slippery slope as when insurance starts to deny, they can cost upwards of 1400 per day.


I would be happy to set up a consultation call with you if you would like to hear more, and I also want to be transparent in terms of the cost of programming. Some families have fought for insurance benefits with very mixed results, and some families depending on the state and school situation have fought for school district funding. I’m not sure if you have talked to an educational attorney, but your daughter must be in public school and have an IEP.


If you want to proceed, we can set up a call


Transport companies

Transport companies (such as Right Directions) are often used to transport kids from their homes to the Wilderness Therapy program, and then sometimes from WT to the next stop, a TBS or RTC. We didn’t use transport, and I am happy with that decision as I think in our case it would have caused unnecessary trauma and the relationship with my daughter was intact enough to allow me to facilitate her travel. I know in some cases this isn’t possible, and generally the transport team is competent and sensitive to the child and family’s needs. Having said that, having your child woken up at 3 in the morning, often by strangers, with little information isn’t something to take lightly.


School District Funding

Families from some states (NY, California, etc.) are frequently able to receive school district funding for programs after wilderness therapy, under FAPE (Free, appropriate public education). WT is almost always excluded from funding or reimbursement because there isn’t a strong enough educational component. The steps for receiving funding (generally this is in the form of reimbursement, it is challenging, but not impossible, to receive funding upfront in a way that parents don’t have to pay out of pocket.

  • Child needs an IEP (Independent educational plan) stating the need for a residential program.

  • HIre an educational attorney. Sometimes they will lower their fees or take a case pro bono. We used the firm of Michelle Siegel in NYC, which I would highly recommend.

  • The school districts will often contract directly with certain residential private therapeutic programs, which is much easier then trying to seek funding (or more likely reimbursement) through a legal process, for a program that isn't on the list of schools the district contacts with.

  • Note that often the process to obtain reimbursement is long and painful - for example you need to demonstrate that programs (Generally of lesser quality or inappropriate), that contact directly with the district, won’t accept your child, etc.

  • Work with an EC to gain admittance to a program, and potentially to help negotiate with a program for a delay in payment if the parent is hoping for school district funding.


Post treatment

When a child is discharged/graduates from WT or a TBS, family’s are strongly advised to have a strong plan in place, to help prevent regression/relapse.

Home contracts and wrap around services are often advised. Wrap around services include 360 transitions and Homeward Bound. These companies provide a package of services, including family coaching, individual coaching for child and parents, etc. These services run around 3 k a month and up. Parents sometimes utilize IOP services (mentioned above). There are also mentorship programs (with young adults) and sober coaches which families have found helpful.


Reflections & Takeaways


  • Families would benefit from individual and family coaching similar to what wilderness therapy offers (so Conscious Parenting, etc.), as early on as possible (don’t wait until a crisis has hit). This is key as generally so much focus is on the kid, and there are few opportunities for parents to be presented a mirror to their own contribution to the situation. Parent support groups, like the drop-in group I am currently running now has also been invaluable for me in both finding a non-judgmental sense of solidarity and support, as well as considering new perspectives, developing tools, etc

  • In my view, a crisis is not a teen underperforming in school, spending too much time on devices, being rude/defiant to adults, or drinking or smoking weed (unless again the child’s life is in danger). From my experience, a crisis that would merit looking seriously at residential programming would be a situation where the child’s life is in danger, causing significant harm to other kids in the family, and/or physically endangering parents. In other words, the bar would be high.

  • Parents are often desperate (understandably) and they feel these programs will “fix” the kid. Sometimes the time away from family, developing some new tools, and parents strengthening their skills can help to resolve issues. As mentioned above though, there is a risk of the child self-identifying as “broken”, of contagion with kids with more severe issues, and of kids being subjected to trauma in even the best programs. In other words, the problems can be exacerbated.

  • For a change process to be really effective, kids (like adults) need to feel agency in their process of change. While she understood the reasons for our decisions, my daughter, like others, felt little ownership, and that the programs were generally being forced upon her. Most of the programs were built around “levels” where progress was awarded through compliance and good behavior. My daughter often commented that kids were just playing the game in order to get out. In fact, many of her treatment friends, particularly those misusing substances, fell back into old behavior patterns. As such, I think it's really important to recognize this, and recognize that natural consequences and the process of maturation are often a parent's biggest allies.

  • There are few opportunities or encouragement to think outside the box when your family is in crisis. While I did opt for some “out of the box” alternatives (I took my daughter to volunteer one summer) I would recommend looking more closely at other solutions: (totally impractical for some, but worth mentioning..)

-Move to a new environment, potentially one that is more contained, less access to problematic influences, with family/community to support, etc.

-Look into therapeutic-light programs that focus on building confidence, leadership etc.the gap year program, Free Spirit is an example.

-Change schools, opting for something smaller, with less pressure perhaps. (Academics are never more important than your child’s mental health!!)

-Invest in more support both for family and kids - individual coaching/therapy, parent support groups and teen support groups. As mentioned earlier, many parents discuss how the most important contribution of Wilderness Therapy for their child’s healing was doing their own inner work.

-Adjust a parent’s schedule to be able to spend more time with kids, be home after school, or pick up from school, etc.

-Take time together to travel, volunteer. (I traveled to Nepal with my daughter to volunteer, and while she continued to struggle, it solidified our relationship)

-While this is controversial I know, there are some interesting developments with plant medicine and psychedelics, including ketamine, psilocybin, etc. The key consideration here seems to be working with someone appropriate and competent, and having the proper preparation and follow-up.

-In terms of therapeutic approaches, the recent emphasis on somatic approaches, including EMDR, somatic experiencing, hypnotherapy, etc are promising, and may be more effective than traditional “talk therapy” especially for teens.


Resources

Facebook groups

  • WTRS: Wilderness Therapy and Residential Treatment Search Support (Very helpful, full of resources including guides, research on programs, ECs, etc.)

  • Warrior Families Support Group (Covers NY/NJ)

Email discussion list

  • New York - “Challenging Times” discussion list - challengingtimes@ponytya.groups.io

Books


Podcasts


Some other resources I've compiled are here:











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