Child psychiatric residential care - what to expect?
March 3, 2019 7:17 AM Subscribe
Young autistic child being sent to a psychiatric residential facility - tips for parents on what to expect / how to survive a likely week or two long stay to support them?
So my autistic six year old child has been admitted to a General Hospital on a psychiatric hold, and likely will transferred to a residential care unit for a period of time (maybe a week, maybe longer) to try and work out a sudden increase in extreme behaviors. Good times all around :-( Anyway due to there apparently being no free beds in California this weekend in any facilities (!) my child will likely be sent out of state and my spouse or I will likely need to fly to be with them. My spouse and I have never interacted with child psychiatric residential facilities before - so any thoughts on what to expect / tips greatly appreciated. One of my spouse or I will go and the other will stay home to take care of our other child.
We don’t know which facility yet, which state (hello Nevada or Oregon!), but assume whoever goes with the child will end up staying at a hotel nearby. I expect, other than making sure we bring enough to be comfortable ourselves, we should prepare to be (hate to say it as it sounds uncaring) extremely bored for extended periods outside of visiting hours etc. But what else should we prepare for?
So my autistic six year old child has been admitted to a General Hospital on a psychiatric hold, and likely will transferred to a residential care unit for a period of time (maybe a week, maybe longer) to try and work out a sudden increase in extreme behaviors. Good times all around :-( Anyway due to there apparently being no free beds in California this weekend in any facilities (!) my child will likely be sent out of state and my spouse or I will likely need to fly to be with them. My spouse and I have never interacted with child psychiatric residential facilities before - so any thoughts on what to expect / tips greatly appreciated. One of my spouse or I will go and the other will stay home to take care of our other child.
We don’t know which facility yet, which state (hello Nevada or Oregon!), but assume whoever goes with the child will end up staying at a hotel nearby. I expect, other than making sure we bring enough to be comfortable ourselves, we should prepare to be (hate to say it as it sounds uncaring) extremely bored for extended periods outside of visiting hours etc. But what else should we prepare for?
Maybe there will be a Ronald McDonald house nearby where you can stay. Otherwise see if there is a social worker attached to the facility who can help you find a reduced-fee place, or maybe an Airbnb (hopefully more affordable than a hotel).
posted by vignettist at 1:52 PM on March 3, 2019 [3 favorites]
posted by vignettist at 1:52 PM on March 3, 2019 [3 favorites]
So residential units and inpatient units mean very different things, one is designed for short term stabilization and release and one is for stays that can be significantly longer. Which is your child going to? It sounds like short team inpatient and not actually a residential facility. Your child is very young for a stay in general, so this impacts the number of facilities available and the length of recommended stay. Stays for children this young is an incredibly specialized field.
Because your child will need to be transferred via ambulance to the accepting faculty, you may be able to get a ride in the vehicle, maybe not. This depends on a variety of factors.
You should ask questions and know the expertise of the people taking care of your child. Ask questions, do research and be prepared.
Most facilities who accept children that young will have significant experience explaining expectations to parents, as soon as you know where he is going, give them a call.
posted by AlexiaSky at 2:02 PM on March 3, 2019 [2 favorites]
Because your child will need to be transferred via ambulance to the accepting faculty, you may be able to get a ride in the vehicle, maybe not. This depends on a variety of factors.
You should ask questions and know the expertise of the people taking care of your child. Ask questions, do research and be prepared.
Most facilities who accept children that young will have significant experience explaining expectations to parents, as soon as you know where he is going, give them a call.
posted by AlexiaSky at 2:02 PM on March 3, 2019 [2 favorites]
In my experience* in working with psychiatic residential facilities, here are some tips:
The facility will likely not know much about your child. Here is a link to one-page profiles you can use to share basic information (likes, dislikes, what doesn't work, etc. (http://mtautism.opiconnect.org/2017/06/one-page-profiles.html)
They may not have a deep knowledge of autism.
Psychiatric settings may use medications for stabilization of behaviors. If medications are suggested, ask how/if they will be discontinued over the stay or after. Medications can be good, but doping someone up until they can't have problem behaviors is wrong. There are no specific medications for autism and there is very, very little research literature on the long-term use of psychiatric medications on young children.
Hopefully they will have a Board Certified Behavior Analyst (BCBA) on staff. That is the best person for looking at behavior problems and designing a behavior intervention plan. (The behavior intervention plan may have other similar names.) A KEY KEY part of the process to change behavior is to do a Functional Behavior Analysis (FBA) to examine potential causes (functions) of the behaviors. You can find example FBAs on the web site I linked to above.**)
If they tell you that they may use physical or mechanical restraints or isolation/seclusion time-out, ask to have those procedures demonstrated for you AND ON YOU. You need to know how those procedures will be done. If they use the terms, "baskethold" or "floor restraint" that is a Hard No on quality and safety as the first is dangerous and the second is life-threatening. If they say that staff are Mandt or CPI certified, that is a good thing as those are the two largest organizations that teach/certify staff in physical restraining techniques and avoiding problem behaviors.
Assuming that your child has an Individualized Education Plan (IEP):
Provide the facility with a copy of the IEP ASAP. That is key information for them on what goals your child was was working, what modifications were being provided and the amount of time they spent receiving which special education services. If you don't have a copy, request a copy from your district - they are legally obligated to provide it to you. Feel free to CC: everyone from the special education teacher to the buildiing principal to the district special education director to the district superintendent on the request to get the IEP ASAP.
Depending on how long your child stays, the facility has a legal requirement to develop a new/discharge IEP and involve the home school district in that process. Make sure they involve the home district special education teacher and administration. Sometimes facilities write an IEP for their setting (with lots of staff and low staff/kid ratios) that doesn't really work in the home district. Involving home district staff in that process is required and can save the hassle of your kid coming back to their school with an IEP that is unrealistic in a public school setting.
Contact the nearest Parent Training and Information Center in both your state and the other state. Just do a brief, "This is what is going on with my child, do you have any ideas that can help?" Those are federally-mandated "advocacy centers" for parents and hopefully they might have some knowledge of laws, resources, etc. (https://www.parentcenterhub.org/find-your-center/)
If at any time in any meeting you have a question, ask it. This is your child's life and not the time to worry about being embarrased or stupid. It's easy for professionals to use jargon or terms and not realize that everyone knows what they mean.
Feel free to MeMail me with questions.
*34 years of working as disability/autism.behvaior specialist and special education compliance officer with public schools and public/private residential facilities that take children all kinds of disabilities.
** The link I gave above is a blog of autism information and may be helpful in research or knowledge. My employer pays me to maintain that blog and I don't get any more money based on page views.
posted by ITravelMontana at 5:27 PM on March 3, 2019 [5 favorites]
The facility will likely not know much about your child. Here is a link to one-page profiles you can use to share basic information (likes, dislikes, what doesn't work, etc. (http://mtautism.opiconnect.org/2017/06/one-page-profiles.html)
They may not have a deep knowledge of autism.
Psychiatric settings may use medications for stabilization of behaviors. If medications are suggested, ask how/if they will be discontinued over the stay or after. Medications can be good, but doping someone up until they can't have problem behaviors is wrong. There are no specific medications for autism and there is very, very little research literature on the long-term use of psychiatric medications on young children.
Hopefully they will have a Board Certified Behavior Analyst (BCBA) on staff. That is the best person for looking at behavior problems and designing a behavior intervention plan. (The behavior intervention plan may have other similar names.) A KEY KEY part of the process to change behavior is to do a Functional Behavior Analysis (FBA) to examine potential causes (functions) of the behaviors. You can find example FBAs on the web site I linked to above.**)
If they tell you that they may use physical or mechanical restraints or isolation/seclusion time-out, ask to have those procedures demonstrated for you AND ON YOU. You need to know how those procedures will be done. If they use the terms, "baskethold" or "floor restraint" that is a Hard No on quality and safety as the first is dangerous and the second is life-threatening. If they say that staff are Mandt or CPI certified, that is a good thing as those are the two largest organizations that teach/certify staff in physical restraining techniques and avoiding problem behaviors.
Assuming that your child has an Individualized Education Plan (IEP):
Provide the facility with a copy of the IEP ASAP. That is key information for them on what goals your child was was working, what modifications were being provided and the amount of time they spent receiving which special education services. If you don't have a copy, request a copy from your district - they are legally obligated to provide it to you. Feel free to CC: everyone from the special education teacher to the buildiing principal to the district special education director to the district superintendent on the request to get the IEP ASAP.
Depending on how long your child stays, the facility has a legal requirement to develop a new/discharge IEP and involve the home school district in that process. Make sure they involve the home district special education teacher and administration. Sometimes facilities write an IEP for their setting (with lots of staff and low staff/kid ratios) that doesn't really work in the home district. Involving home district staff in that process is required and can save the hassle of your kid coming back to their school with an IEP that is unrealistic in a public school setting.
Contact the nearest Parent Training and Information Center in both your state and the other state. Just do a brief, "This is what is going on with my child, do you have any ideas that can help?" Those are federally-mandated "advocacy centers" for parents and hopefully they might have some knowledge of laws, resources, etc. (https://www.parentcenterhub.org/find-your-center/)
If at any time in any meeting you have a question, ask it. This is your child's life and not the time to worry about being embarrased or stupid. It's easy for professionals to use jargon or terms and not realize that everyone knows what they mean.
Feel free to MeMail me with questions.
*34 years of working as disability/autism.behvaior specialist and special education compliance officer with public schools and public/private residential facilities that take children all kinds of disabilities.
** The link I gave above is a blog of autism information and may be helpful in research or knowledge. My employer pays me to maintain that blog and I don't get any more money based on page views.
posted by ITravelMontana at 5:27 PM on March 3, 2019 [5 favorites]
I agree with AlexiaSky that short-term stabilization should be on an inpatient unit. Residential care can be extremely varied in quality; be prepared to have to be a very strong advocate for your child's needs. Ideally, the age range and type of psych needs treated would be narrow (most resis are probably tailored towards addictions + self-harm).
Instead of physical/mechanical restraints, some wards will use IMs (intramuscular injections) of sedatives.
Ask before admission about step-down options and discharge criteria.
posted by ahundredjarsofsky at 12:15 AM on March 4, 2019
Instead of physical/mechanical restraints, some wards will use IMs (intramuscular injections) of sedatives.
Ask before admission about step-down options and discharge criteria.
posted by ahundredjarsofsky at 12:15 AM on March 4, 2019
As someone who is autistic, i am very very suspicious of I Travel Montana's suggestions, and their credentials. I have been sent away for 9 months, as part of a residental care facility, for my autism, though I was much older (14).
I don't know the behaviour, but this must be an incredibly difficult time, and I imagine quite scary. I can send you to autistic people who might be helpful.
posted by PinkMoose at 1:29 AM on March 4, 2019 [3 favorites]
I don't know the behaviour, but this must be an incredibly difficult time, and I imagine quite scary. I can send you to autistic people who might be helpful.
posted by PinkMoose at 1:29 AM on March 4, 2019 [3 favorites]
Hi--I closed my account a while back and reopened it to respond to you. I've faced this with my own child and I also work at McLean Hospital, which is essentially considered the gold standard for mental health treatment in the Northeast.
Don't allow the transfer to happen. Take your kid home, take all safety precautions and get intensive therapy.
I would NOT send my kid inpatient based on the information you've provided. He's too young.
When one of my kids was about 6, he was saying and doing things that were alarming, and a psychiatrist wanted him sent to an in-patient facility. Here's the thing: HE WAS 6. So I went to check out a pediatric inpatient unit. I walked in, saw the kid throwing a chair and another cowering under a bed screaming, and I went home.
Not following medical advice was the hardest and smartest thing I've ever done. In ensuing years I've learned that medical professionals will recommend hospitalization because of legal nonsense. Once a kid displays dangerous tendencies, they often cannot treat them outpatient, and so insist on an inpatient placement. Don't do it.
I refused to send him because like PinkMoose says, I knew the level of trauma this would cause my kid.
So I kept him home. I researched day programs. The process took months.
Please feel free to message me. 6 is too young for inpatient. (For the record, my kid DID have an inpatient experience in his late teens because of a med change, and he describes the hospitalization experience as far worse than what was going on in his head).
posted by yes I said yes I will Yes at 5:59 AM on March 4, 2019 [7 favorites]
Don't allow the transfer to happen. Take your kid home, take all safety precautions and get intensive therapy.
I would NOT send my kid inpatient based on the information you've provided. He's too young.
When one of my kids was about 6, he was saying and doing things that were alarming, and a psychiatrist wanted him sent to an in-patient facility. Here's the thing: HE WAS 6. So I went to check out a pediatric inpatient unit. I walked in, saw the kid throwing a chair and another cowering under a bed screaming, and I went home.
Not following medical advice was the hardest and smartest thing I've ever done. In ensuing years I've learned that medical professionals will recommend hospitalization because of legal nonsense. Once a kid displays dangerous tendencies, they often cannot treat them outpatient, and so insist on an inpatient placement. Don't do it.
I refused to send him because like PinkMoose says, I knew the level of trauma this would cause my kid.
So I kept him home. I researched day programs. The process took months.
Please feel free to message me. 6 is too young for inpatient. (For the record, my kid DID have an inpatient experience in his late teens because of a med change, and he describes the hospitalization experience as far worse than what was going on in his head).
posted by yes I said yes I will Yes at 5:59 AM on March 4, 2019 [7 favorites]
Thirding yes I said yes and Pinkmoose. Don't do this, even though that's hard, and it might seem like there aren't any other options. The thing you should be prepared for is trauma, and avoiding that for your kid however you can.
posted by colorblock sock at 6:11 PM on March 4, 2019 [1 favorite]
posted by colorblock sock at 6:11 PM on March 4, 2019 [1 favorite]
I didn't really answer your question about what to expect if you go ahead and inpatient him, which I am in no uncertain terms advising against.
What happens in pediatric inpatient facilities: the goal is to stabilize, perhaps teach rudimentary therapeutic tools (red light/green light, count to 10---I mean, there's not a lot we can do with little kids with ASD because they lack self-control developmentally, they don't understand and they just escalate), then discharge.
Your son will be in a dormitory room with at least one other roommate. It will be a cheerful institutional setting. The kids are expected to follow very strict rules: up at 7, make bed, breakfast, art therapy, meet with psychiatrist, individual therapy, lunch, group therapy, exercise, quiet time, dinner time, maybe a video, bedtime. Kids don't get to opt out.
He will go from the normalcy of his current life (all his toys and tech and friends and lovey items and of course, you) to this, and it won't ever really be explained in a satisfactory manner (esp. if he lives with ASD). He will think he is being punished, because it is a very regimented life. So he'll be with a whole lot of traumatized kids; not a setting for success.
If kids don't want to partake in an activity (and with a bunch of traumatized little ones that happens about hourly), the situation usually escalates until a kid is acting out violently and has to be restrained. Of course, all the other kids are watching this.
I'm certified in CPI restraint. Even though it's the gold standard, we are essentially abruptly taking hold of a child and immobilizing them. Although completely safe, it is terrifying for the kid and for the audience. It is also scary for staff, and that combination of adults being hypervigilant and kids feeling that creates a toxic atmosphere.
Anyway, the goal will be to stabilize your kid, but it's mostly guesswork because a 6yo on the spectrum isn't the most accurate self-reporter.
Your child will not be able to accurately report their feelings and why their behavior has changed, so they will try medication.
That will probably mean mood stabilizers. Those are great in many cases; they're not great for a first line defense in a kid. He will be sedated. His behavior will deescalate and may be discharged, but the only thing that's changed is your son is now being dulled by meds.
I wish I could paint a rosy picture of pediatric psychiatric hospitalization, but I can't--and again, I WORK FOR ONE.
I would do everything in my power to find a day program--they're the unicorns of the mental health world. They're not advertised, you need to ask mental health professionals, school counselors and every parent you know. Someone will know a program.
I don't know where in CA you are, but UCLA has the Autism Evaluation Clinic which offers outpatient programs for kids. The STAR Center at UCSF will know of outpatient programs. Good luck with whatever you decide.
posted by yes I said yes I will Yes at 1:05 AM on March 5, 2019 [1 favorite]
What happens in pediatric inpatient facilities: the goal is to stabilize, perhaps teach rudimentary therapeutic tools (red light/green light, count to 10---I mean, there's not a lot we can do with little kids with ASD because they lack self-control developmentally, they don't understand and they just escalate), then discharge.
Your son will be in a dormitory room with at least one other roommate. It will be a cheerful institutional setting. The kids are expected to follow very strict rules: up at 7, make bed, breakfast, art therapy, meet with psychiatrist, individual therapy, lunch, group therapy, exercise, quiet time, dinner time, maybe a video, bedtime. Kids don't get to opt out.
He will go from the normalcy of his current life (all his toys and tech and friends and lovey items and of course, you) to this, and it won't ever really be explained in a satisfactory manner (esp. if he lives with ASD). He will think he is being punished, because it is a very regimented life. So he'll be with a whole lot of traumatized kids; not a setting for success.
If kids don't want to partake in an activity (and with a bunch of traumatized little ones that happens about hourly), the situation usually escalates until a kid is acting out violently and has to be restrained. Of course, all the other kids are watching this.
I'm certified in CPI restraint. Even though it's the gold standard, we are essentially abruptly taking hold of a child and immobilizing them. Although completely safe, it is terrifying for the kid and for the audience. It is also scary for staff, and that combination of adults being hypervigilant and kids feeling that creates a toxic atmosphere.
Anyway, the goal will be to stabilize your kid, but it's mostly guesswork because a 6yo on the spectrum isn't the most accurate self-reporter.
Your child will not be able to accurately report their feelings and why their behavior has changed, so they will try medication.
That will probably mean mood stabilizers. Those are great in many cases; they're not great for a first line defense in a kid. He will be sedated. His behavior will deescalate and may be discharged, but the only thing that's changed is your son is now being dulled by meds.
I wish I could paint a rosy picture of pediatric psychiatric hospitalization, but I can't--and again, I WORK FOR ONE.
I would do everything in my power to find a day program--they're the unicorns of the mental health world. They're not advertised, you need to ask mental health professionals, school counselors and every parent you know. Someone will know a program.
I don't know where in CA you are, but UCLA has the Autism Evaluation Clinic which offers outpatient programs for kids. The STAR Center at UCSF will know of outpatient programs. Good luck with whatever you decide.
posted by yes I said yes I will Yes at 1:05 AM on March 5, 2019 [1 favorite]
I know this is late, I really do. And I hope you have made the decision that is right for your family.
Many people have significant reservations about inpatient treatment for kids with very very good reasons. I've also been on the other side though, and worked with parents of kids who have suffered significant injury or death due to dangerous behaviors. It is rare, but it does happen.
So I really believe inpatient has a place and long medical hospital stays due to injuries is also highly traumatic.
This is not your fault, you are trying your best in a system that doesn't have good answers for kids with the level of need that he currently has.
I hope you are getting the support you need.
posted by AlexiaSky at 10:10 PM on March 5, 2019
Many people have significant reservations about inpatient treatment for kids with very very good reasons. I've also been on the other side though, and worked with parents of kids who have suffered significant injury or death due to dangerous behaviors. It is rare, but it does happen.
So I really believe inpatient has a place and long medical hospital stays due to injuries is also highly traumatic.
This is not your fault, you are trying your best in a system that doesn't have good answers for kids with the level of need that he currently has.
I hope you are getting the support you need.
posted by AlexiaSky at 10:10 PM on March 5, 2019
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Talking to family members of other patients can be helpful.
posted by MexicanYenta at 11:56 AM on March 3, 2019 [3 favorites]