Child Study Center Grand Rounds 9.29.2020

March 30, 2021

Information

Caring for a Child with Complex Physical and Mental Disabilities Confronting the Enormous Barriers to Care

ID6358

To CiteDCA Citation Guide

00:00Welcome everyone, my name is Laurie Cardona.
00:05I'm a psychologist here at the Child
00:08study center, Anna pediatric psychologist.
00:11Today is our first in a series of
00:15rounds that we will have throughout
00:17the year and this particular rounds
00:20is called Compassionate Care rounds.
00:24I will begin by letting you know the
00:26goals of compassionate care rounds.
00:29The goal of compassionate Care rounds
00:32is to promote compassionate care of
00:35patients by discussing the social,
00:38emotional, and interpersonal challenges
00:40that we as providers experience in the
00:44process of caring for patients and
00:47families so compassionate care rounds
00:50focuses primarily on our experiences as
00:53care providers rather than on all the
00:57clinical details of a particular case.
01:00Today, I'm really excited to introduce
01:03you to a wonderful interdisciplinary
01:05panel that was challenged in the care
01:08of a child in a family that we saw
01:11on our inpatient psychiatric unit.
01:13And this panel is going to share the
01:16lessons they learned that will hopefully
01:19improve our care practices into the
01:22future after the panelists speak and
01:24they'll be speaking for about 35 minutes,
01:27I'll then invite you as the
01:29audience members to share your own
01:32personal perspectives on this case.
01:35That will help us guide us to think
01:37even more deeply about about the
01:39case that we're about to present.
01:42The case that we chose is a child that
01:45was on our inpatient psychiatric unit,
01:49so we asked for confidentiality regarding
01:51the material that we're about to present.
01:54We chose a child who presented
01:57with complex physical disabilities
01:59and psychiatric challenges.
02:01We chose this case because we know
02:04that children who struggle with
02:06physical disabilities and coexisting
02:08psychiatric questions.
02:14Present with complex needs that
02:16are challenging to me in mental
02:19health and medical settings.
02:21Surveys have revealed that primary care
02:23physicians and mental health providers,
02:26such as ourselves,
02:27have reported lack of knowledge,
02:30skills and comfort in treating patients
02:32who have physical disabilities and
02:35comorbid psychiatric vulnerabilities.
02:37So I hope that we can learn a lot in this
02:40compassionate care rounds about this case
02:43example that presented in this complex way.
02:46Our first panelist, who will be
02:50speaking to you today is Doctor Suman.
02:53Badam Suman Baddam is associate medical
02:57director on our inpatient psychiatric unit.
03:00I'll just go ahead and tell you a
03:03little bit about the other panelists.
03:06Suman will then be followed by Kashif Ahmed.
03:09He's the Pgy four resident from the Soul Net
03:13Integrated Program who took care of Selena,
03:15the patient that we're going to be discussing
03:18will then be followed by Maggie Sullivan,
03:21the nurse that took care of our
03:24patient on Winnie one and then
03:26our psychiatric social worker,
03:28Melissa Bourque,
03:29will be our final panelist who
03:31will speak about this case.
03:34Then we'll open it up for
03:37audience participation.
03:38So our first presenter is Doctor Badam.
03:46Thank you Lori.
03:48Can everybody hear me? Alright.
03:53So I'm just going to give you
03:56a brief introduction into.
03:58How Selena came into the unit and
04:02what were my initial impressions?
04:07So Selena, the first time that I heard
04:10about her was through Doctor Martin
04:12that there's a child who is in the
04:15ER who is in the wheelchair and she
04:17needs to come into the inpatient unit.
04:21And just to put things in perspective,
04:24this was I became the second
04:29attending and I was.
04:31Taking over from Doctor Taylor.
04:36At the beginning of July,
04:37so this was end of June.
04:39So I had started a few days earlier.
04:43So the first impressions in my mind was.
04:47There's a child in a wheelchair and I
04:49have never covering the inpatient unit.
04:52I've never seen,
04:53or we have never taken care
04:55of a child in a wheelchair.
04:57And I mean you attending.
04:59What are the struggles going to be?
05:01What are the challenge is going to be?
05:04So after moving beyond that Selena
05:07she was brought to the unit.
05:11And as we looked at the history,
05:14and as we looked at what the mom had
05:17presented in the ER emergency room it,
05:20it sounded like a child who had struggled
05:23a lot and the family had struggled a
05:26lot with agitation and aggression at home.
05:29Hitting mother severe tantrums.
05:31Pushing mother down the stairs and
05:34these are these kind of behaviors are
05:37something which we see all the time.
05:40But within the context,
05:42I'll give you a little bit
05:44more context about this child.
05:47She is a 9 year old with cerebral
05:50palsy and she also has tremors and
05:53she has her muscles have low tone.
05:56She can't keep her. Next air act.
06:02And she also has what are called as
06:06a contractors and tight muscles.
06:08So she can't.
06:12It's hard her for her to.
06:15She does not stand without support
06:17and she needs two people to support
06:20her to walk whenever she walks,
06:23so she is wheelchair bound and she also
06:26has to need support to transfer from
06:29the bed to the wheelchair as well as
06:33help with feeding and also toileting
06:35and all the activities of daily living.
06:39So. After I read about this
06:43history and got this history.
06:46In and also considering this agitation and
06:49the episodes of that she struggles with.
06:52And we also heard from the mother that the
06:56medications which she was on or not helping,
06:59and Mother also reported a history that
07:02there was a manic kind of changes in this.
07:06In the presentation of the child.
07:09So with all of this in context and some
07:12history which we were able to obtain,
07:14was that.
07:16There was the child had suffered from.
07:20It is called as a shoulder dystocia or not
07:23having oxygen at the time of the birth,
07:26which more than likely had led
07:29to these challenges that she had.
07:31So there's a lot of emotional material,
07:33but also mental health related
07:36challenges that she was having at home.
07:39And to add to all of this,
07:41mom was extremely distressed that
07:44she had tried. She was a single mom.
07:47She was taking care of her child by
07:50herself and had a full time job and
07:53she had tried all the avenues to
07:56get as many services as possible,
07:58but she was.
08:00Constantly refused because of multitude
08:03of reasons that you're going to.
08:06So just to put all of these things
08:10in perspective.
08:11So this was the time of transition where.
08:16Some of the fellows who had who the
08:19second year fellows were transitioning
08:21the first year fellows were
08:23transitioning to into the second year,
08:24and there were new fellows coming,
08:26so there was a lot of questions.
08:29And I,
08:30being the new attending although
08:33covering the inpatient.
08:34Infrequently.
08:35Are we as a unit equipped to take
08:39care of this child's medical needs?
08:41And does she need to be constantly moved
08:45around this so that there's no bad source?
08:48And also we are equipped to take
08:50care of this child children with
08:53emotional and mental health needs.
08:55But this complexity of this medical
08:58needs and the mental health needs.
09:01I have seen children that's
09:03terrible policy before,
09:03but many of the children that have
09:06taken care of they were they were
09:08able to walk and communicate.
09:10But Selena,
09:12she communicates through the
09:15through the iPad.
09:17And with the tremor to communicate,
09:20just say hello,
09:21it takes at least like 10 seconds.
09:25So I have seen children cerebral palsy,
09:28but how do we communicate?
09:30How do we find what this child is
09:33struggling with and what are the root
09:36causes of these mental health problems?
09:39So those are the questions and and to
09:41put things additional questions where
09:43we live in a world with different
09:47differential diagnosis and diagnosis.
09:49And with this complex mental
09:52mental health as well as
09:54physical health needs.
09:56Wait, is this child fallen?
09:58That in those categories?
10:00So with all of those questions in my mind,
10:05the first time that I met Selena,
10:08she was quite pleasant and very.
10:13Cheerful, but also a little bit
10:15helpless because I was going into this
10:17with a lot of preconceived notions.
10:20So at this time I wanted to.
10:22I raised all of these challenges.
10:24Initial challenges.
10:25That were in my mind and in taking
10:29care of a child with complex
10:31medical and mental health needs.
10:33So I just wanted to transition
10:36now to doctor M.
10:37And who was the primary follow
10:39and how we work together to
10:42take care of this child.
10:46Hello everybody, so I'm
10:47joining from Maggie's laptop.
10:49We're here in the on the unit
10:52together so I'll be speaking from.
10:54From this zoom location and so like
10:57Doctor Badam said when when Selena got
10:59admitted to the unit it really was a
11:02time of transition and she actually
11:05had gotten admitted to the unit.
11:07Maybe just a couple of days before I
11:10started on July 1st and so this was
11:12her first hospitalization and she had
11:15all this sort of nervous excitement
11:17about how the hospital worked and what
11:19all these different specialties were.
11:22What was going on in the unit?
11:25And had all these questions and
11:27curiosity about how things worked and
11:28I really felt the same way it was.
11:30This really nice sort of parallel
11:32thing that I notice just within the
11:35first maybe day or so of working
11:37with her that I also had this sort
11:39of nervous excitement.
11:39And so it was nice that it felt
11:42like we were sort of going through
11:44something together,
11:44and I think it actually helped me
11:46really focus on trying to just sort
11:48of mental eyes this kid and understand
11:50what she was struggling with without
11:52being so sort of fixated on just the
11:55diagnosis that came with the chart.
11:56But really just trying to understand
11:58what is this kids.
12:00Experience on this unit and so
12:02like Doctor Badams,
12:03said one of the real challenges with that
12:06was sort of the communicative deficit.
12:09So this is a kid who has the normal
12:11IQ with no difficulties with abstract
12:15reasoning or receptive language function.
12:18But really really struggled with
12:20expressive language and could sort of,
12:22you know,
12:22give these monosyllabic answers
12:24to some questions like sort of
12:26say yes or uh-huh or mom.
12:28But really couldn't verbalize
12:29beyond that until this is really
12:31really challenging to communicate
12:33with her with the iPad and it's
12:35sort of forced me to really think
12:37about the assumptions I had.
12:38You know,
12:39like in medical school we sort of
12:42learn about open-ended versus closed
12:43ended questions and sort of going
12:45with the patient takes us and to just.
12:48Focus on really using a lot of
12:50open ended questions with Celina,
12:52it was really challenging to do
12:54that because like Doctor Boom
12:55said with the spasticity,
12:57her typing on the iPad is something
12:59that required a lot of you know,
13:01like sort of backspacing,
13:02accidentally hitting the wrong key,
13:04opening the wrong tab,
13:05going back to the typing app,
13:07and it was really hard to watch,
13:10let alone how challenging it must have
13:12been for her to have that as her primary
13:16method of communicating with people.
13:18And so we sort of developed
13:22this interesting system.
13:23Basically,
13:24communicating with each other in
13:25which we would sort of when we
13:27would check in during the day,
13:29we would have this list of closed
13:31ended questions that we would
13:32go through at the beginning.
13:34Sort of are almost like a review
13:35systems where I had certain
13:37questions that I needed to ask her
13:39and she had some questions that
13:41she really wants to ask
13:42me that she asked me every day and
13:44so we spent the 1st 10 minutes of
13:46our session with me asking these
13:48questions in her sort of indicating
13:50yes no or option one option two or
13:52giving brief responses with her iPad.
13:54And then after that then we would
13:56have some more time to sort of answer
13:58questions in a more free flowing
13:59way and I would just say Selena.
14:01What else is on your mind?
14:03What you wanna talk about today and
14:05then for the next sort of 25 minutes
14:07of the remainder of this session?
14:09I'm so sorry.
14:10Sending the most of my time just
14:12patiently waiting for her to type.
14:13You know, for one minute to
14:15ask a ten word question,
14:16and then I'm sort of spending,
14:18then again,
14:18waiting for a long stretch of time.
14:20And so it really forced me to think
14:22about approaching communication
14:23in a much more open minded way.
14:25And we do have this sort of
14:27repository of knowledge about
14:28how to interview patients,
14:29but that sometimes needs to take a
14:31back seat when we need to just focus
14:34on the kid who's in front of us.
14:36In that same lesson sort of
14:38came up when we were balancing
14:39not just her psychiatric needs
14:41for her physical needs as well.
14:43I remember like when I first
14:44came out to the unit and I read
14:46that not only does she have CP,
14:48but she's got a seizure disorder as well
14:51and she's on trileptal and I was like,
14:53Oh my gosh,
14:53I have to like learn how to like
14:55mitigate the risk of seizures
14:57and read up on trileptal dosing.
14:59And none of that really came up.
15:01Thankfully she had no seizure
15:02activity on the unit,
15:03but there was all this other
15:05physical stuff with urinary.
15:06Incontinence or Constipation, or vomiting.
15:08Or things like that,
15:09that some of was informed
15:10by the cerebral palsy,
15:12but some of which was like
15:13volitional or behavioral.
15:14And so I sort of felt like there were
15:17times where I was sort of flip flopping,
15:19between being a very sort
15:21of medicalized doctor,
15:22versus being a therapist,
15:23and really trying to connect with
15:25this kid in a psychological way.
15:27And I felt like it was a difficult balance,
15:29and it was something that really forced
15:31me to think about the interventions
15:33that would do the most to really
15:36help this kid get what she needed.
15:38And so there were times where I could
15:40spend half an hour talking to her and.
15:43Uh,
15:43switching her wheelchair for that
15:45properly fit her was a way more
15:47important intervention than anything
15:49I said to her or heard from her over
15:51like 1/2 an hour conversation and so
15:53really sort of forced me to think
15:56about those types of interventions,
15:57whether it was getting a different kind
15:59of wheelchair or making sure that OT
16:02and PT were coming to theater regularly.
16:04That oftentimes made much more
16:06of a difference than anything
16:07that I could have said,
16:09and so I think one of the big
16:11takeaways from my work with Selena
16:13was just really appreciating.
16:14How important it was to.
16:17Approach each interaction with an
16:18open mind and to have sort of in the
16:21back of my mind what the diagnosis is,
16:23what the medications are,
16:24sort of all the things that
16:26go into the chart,
16:27but to approach the actual
16:28interaction themselves.
16:29With just like what's this kid
16:31struggling with right now and and
16:33how do I support her with that?
16:34And so I'll stop for there for
16:36now and turn it over to Maggie.
16:43Already, so we will do a little switcheroo
16:46here and I will take over from more of
16:50the staff position and nursing position.
16:52Talking about Selena.
16:54So as a nurse on Winchester one,
16:57it is my job to prepare the mill
16:59you for whoever is about to come in.
17:02And in no way was I actually
17:05ready for Selena's presence.
17:07When we initially heard.
17:10Other child with cerebral palsy.
17:13In a wheelchair.
17:15That was going to be admitted for aggression.
17:19We were all our wheels returning.
17:21We were trying to figure out
17:23exactly what we were going to do.
17:25How are we going to accommodate
17:27for a wheelchair on our unit with
17:29the million that we currently had,
17:31we just couldn't fathom it.
17:33On top of it was she going to
17:35bring one in from home?
17:36Or was the hospital going to provide one?
17:38We had so many uncertainties at that time.
17:42We also had no idea how she
17:44was going to communicate.
17:45I mean,
17:46we've seen iPads before.
17:47We've had kids communicating
17:48with iPads before,
17:49but where we actually going to be
17:51prepared for what her day-to-day
17:53life actually looks like at home?
17:55And we're going to be able to
17:57provide her with the resources that
17:59she actually needed to succeed.
18:01Well,
18:02it just looks fuzzy as a lot
18:03of times they always are.
18:05But lo and behold,
18:07I met Selena the next morning.
18:10We all know that as health care providers,
18:12we immediately meet a patient
18:14and we begin assessing for
18:16figuring out what they are like,
18:18their demeanor,
18:19their habitus,
18:19the things that they say and
18:22how they're behaving.
18:23And I will be completely honest that I
18:27initially had many doubts about Selena.
18:30I didn't know what we were
18:31actually going to be able to do,
18:33and that was a huge concern for
18:35me and all of the staff present.
18:38Why is she cognitively limited?
18:41I saw that there was an iPad in front
18:42of her the first time that I met her,
18:44but how well actually was she going
18:46to be able to communicate with us?
18:48Little did I know that the girl
18:51very tiny girl,
18:52my Joe sitting inside atop a
18:54very large massive wheelchair.
18:56And I mean adult sized wheelchair
18:58like she took out maybe 1/3
19:00of the actual chair itself.
19:02But little did I know how brilliant
19:04but yet how broken she would be.
19:08Spending so much time with her one to
19:11one afforded all of us the opportunity
19:13to really formulate relationships
19:14with her and I feel very grateful
19:16that we were all able to to spend one
19:19on one time with her so frequently.
19:21That being said, cracking in and
19:23getting it initially was very
19:25difficult for each and everyone of us.
19:27Gaining her trust was something that I
19:30tried to do with humor and some playfulness.
19:33And apparently she took a liking to
19:35a lot of my corny jokes and mind you,
19:38I tell a lot of corny jokes on the unit.
19:42But eventually she ended up making
19:44a button on her, her communication.
19:49Her communication app and she made a
19:51button for my name and that was when I
19:53knew that I had made it when she could
19:55just click the button and it would say
19:57Maggie over and over again.
19:59But unfortunately this.
20:00This made it more difficult for me when
20:02my maternal instincts began began to kick
20:04in as we all realized how dysfunctional
20:07her relationship was with her mother.
20:09She spoke of how she didn't necessarily
20:12like every single day at home with her mom.
20:16How she was feeling unloved
20:18and unsupported at times,
20:19and she typed very calculated,
20:21very determined,
20:22but some typed about how she felt
20:25and she pulled us from time to time.
20:29She really wanted to make sure
20:30that she was getting points.
20:33But at the same time, we didn't have a ton of
20:36resources on Winnie that we necessarily
20:38should have had at the time.
20:40Again, she was in this large wheelchair.
20:42We didn't have the proper spoons.
20:44We didn't have, you know,
20:45they have rubberized mats for iPads,
20:47and when you put them the iPad down,
20:49it won't fall on the floor like hers did.
20:52Time and time again.
20:53And by the end that she ended up leaving,
20:55it was completely shattered.
20:56I mean, I felt really badly.
21:00So as a unit we began to baby her and
21:03assist her with feeding and feed her and
21:06bathe her and help her with her adls.
21:09But go more above and beyond than
21:12necessarily probably should.
21:13And wine Selena finally realized
21:15that she wasn't going home.
21:16As soon as she liked,
21:17she spiraled into a sadness that
21:20made all of our hearts ache.
21:22We all desperately wanted to help her.
21:24We wanted to give her the love
21:27that she was feeling devoid of.
21:29But we were really only listening
21:31to Selena's side of the story.
21:34We soon realized that the special
21:36treatment that we were giving her
21:38with only thwarting her progression.
21:40And after a lot it was a lot
21:42of discussion and frustrating
21:43discussions between the doctors,
21:45the team, everyone,
21:46social work.
21:47We we talked about this case
21:49frequently because we were frustrated.
21:51We wanted her to feel the love and support,
21:54but we also knew that in order
21:56to get her home we needed to
21:59start promoting her independence.
22:01So though it tugged on our heartstrings,
22:03we started to do just that.
22:06As we prepared her for her
22:07expectations at home,
22:08she began to show us some of the
22:10behaviors that acting out behaviors
22:12that she initially was admitted for.
22:14So there were times when I would
22:16walk in in the morning and go to
22:18give Celina her medications and she
22:20would purposely urinate the bed and
22:22we would have to get her up and help
22:25her help us clean it up so that
22:28she was promoting the independence
22:30that Mom wanted to see at home.
22:32She also did attempt to hit and
22:34bite staff at times and that again
22:36was entirely frustrating because
22:38it wasn't like the little girl
22:40that we had all grown so fond of.
22:43And despite her attempts,
22:45constant attempts mind you to skip
22:47Group and skip therapy and skip her
22:49adls and not go to physical therapy.
22:52We encouraged her and we gave her some
22:55of the tough love that unfortunately
22:57she did need to keep her engaged.
23:01Unfortunately,
23:01we did continue to see the broken
23:04communication with her mother though,
23:06and I witnessed many of Facetimes
23:08that left me personally feeling very,
23:10very drained.
23:11It looked a lot of times like they were
23:14speaking entirely different languages.
23:17Mom would speak and Selena would be typing,
23:19typing and really,
23:20really just trying to get her points
23:23across and Mom would just speak over her.
23:26And it didn't seem like the two of
23:28them were connecting.
23:30And unfortunately,
23:30Selena was just so intent on getting home
23:34and feeling loved and Mom
23:36just wanted to promise that
23:37Selena was going to do better.
23:40Be better, be more independent.
23:44So as staff, we build relationships with all
23:46of the kiddos that come through our unit.
23:49And at times we want so desperately
23:52to save them from their woes.
23:54But what I realized by uncovering such
23:56a broken mother child relationship was
23:59that we needed to begin to heal this
24:02relationship between the mother and the
24:04child in order to promote the well-being.
24:07Of this child that we had grown so fond of.
24:11I think that is my segue to Melissa. Yes,
24:15and now we'll hear from Melissa Bourque or.
24:20Psychiatric social worker who had
24:22the huge task of working with the
24:25mother and the child and repairing
24:28their relationship, Melissa.
24:30Yes, thank you.
24:31So my main role was working with like
24:34Lori had said with Mom and finding
24:36services for when this child leaves.
24:38When I met Mom for the very
24:40first time over the phone,
24:42mother brought up the behaviors
24:43that Doctor Bowman talked about.
24:45And Maggie talked about
24:46the hitting the spitting,
24:48pushing mom down the stairs and
24:50the first thought that came to
24:52my mind is how is this possible?
24:54This petite little girl in a wheelchair?
24:56How could she have possibly
24:59pushed Mom down the stairs?
25:01And it made me realize and think
25:03back to it is possible we've had
25:05kids here as young as three.
25:07So it is possible we've seen kids
25:09of all developmental abilities and
25:10all ages be physically aggressive
25:12and emotionally dysregulated.
25:14When we began to speak to mother
25:15about what she would hope for,
25:17or is he as a goal with Selena?
25:20Which is something we typically
25:21do during the first meeting.
25:23As soon as we brought up going
25:25home mothers Voice raised became
25:27emotional and tearful.
25:28It was clear that mother was overwhelmed.
25:30Did Mom have PTSD from all of these
25:32behaviors that she had witnessed
25:34and endured over Selena's lifetime?
25:38Mother reported she had been
25:40the sole provider for Selena
25:42for an entire T Selena's life,
25:44and that's 24 hours a day,
25:46seven days a week.
25:48Mother had tried to obtain services
25:50through able through Department of
25:52Developmental services, social services,
25:54trying to get Husky insurance and all
25:57of these things were denied due to her
26:00income level or due to Celine's average.
26:03Thank you. As a result,
26:06mother was in over $150,000 of debt.
26:09As a result, the only services mom could
26:13secure was Tele health ABA once a week.
26:16In addition to what school could provide
26:18prior to covid occupational therapy,
26:20speech therapy and a one to 1/8.
26:23I knew this was going to be a challenge
26:26as prior to coming to the unit the
26:28emergency Department had tried to
26:30obtain services to prevent it in
26:32mission and they were unsuccessful.
26:33They attempted hospital for special
26:35care and begin who both said
26:38that they were unable to help.
26:40Once on the inpatient unit,
26:42I contacted every possible service
26:45imaginable in home services
26:47icaps I BHS IOP's outpatient.
26:49Anything imaginable and all of them declined.
26:53They said she was not appropriate
26:55for their level of treatment.
26:56Several family meetings.
26:58A Kurd on the unit all were very similar.
27:01They all ended in the same way.
27:03Mother did not feel ready to take her
27:05home or felt any progress has been made.
27:09Selena stabilized on the unit
27:11and was ready for discharge with
27:13no realistic discharge adoption.
27:14We then spoke with Mother about
27:17obtaining DCF voluntary services,
27:18which is now through Beacon.
27:20Mother agreed to start the process.
27:22We then contacted Ann Hogan,
27:24the Yale New Haven Hospital,
27:26Government Relations hospital coordinator.
27:27To see if she could expedite
27:30the voluntary services process.
27:32As Selena was ready for discharge,
27:34team also collaborated with the
27:36outpatient social worker at the
27:37Cerebral Palsy Clinic as well as the
27:39Office of the Health Care Advocate,
27:41who now becomes involved anytime.
27:43Involuntary referral is made.
27:46Every week we would have a meeting
27:47with all the providers and
27:49mother and it seemed like we were
27:51hitting barriers left and right.
27:55We finally decided to contact the
27:57private practice where Mother was
27:59receiving where Selena was receiving
28:00the Tele health ABA once a week.
28:02They were willing to offer in home, ABA.
28:05Physical therapy, occupational therapy,
28:07and speech therapy.
28:08If a single casement agreement
28:09could be obtained, however,
28:11when it came time for the
28:13single case agreement,
28:14they decided to decline as it was a
28:17lower cost that they would be refunded.
28:20For me this was a feeling of disappointment.
28:23Defeat an immense frustration at this time.
28:25I started to understand what Mother was
28:28going through trying to get services
28:30being Denys Day in and day out.
28:33Despite collaborating with all these
28:34agencies and advocates on a daily basis,
28:36the barrier remained.
28:37It didn't change that the barriers
28:39we were facing where insurance,
28:41appropriate services,
28:41and the COVID-19 pandemic insurance.
28:43There was a lack of coverage.
28:45There was a lack of appropriate
28:47services and on top of that we were
28:49in this COVID-19 pandemic where none
28:51of us knew what was going to happen
28:54and school was no longer in session.
28:56That little bit of break that mother
28:58would have had during the day when Selena
29:01was at school is no longer possible.
29:04Selena is out in mothers care 24/7.
29:06No break.
29:07And it was starting to get
29:09seem like caregiver fatigue.
29:11Was playing an immense role.
29:14At this point,
29:15Selena had been on the unit
29:16for almost two months.
29:18I was getting more discouraged at this time.
29:21Why was Mother Sobers assented,
29:22taking her home mother seemed disengaged
29:25when speaking to Celina over Zoom.
29:28After speaking with mother.
29:29We realized that the caregiver fatigue
29:32was taking a far greater level than
29:34we had even initially realized.
29:36It was time to have a difficult
29:39discussion with mother.
29:40Selena was ready for discharge.
29:42The barriers during the pandemic
29:43that we're not going to change.
29:45We decided to talk to mother about
29:47the option of contacting DCF.
29:49If Mother felt like she would could
29:51not care for patient going forward.
29:53Mother was given the information
29:55about filing for DCF once it finally
29:58DCF 136 and what that would mean.
30:00Mother at that time felt like it
30:02would probably end up going to a 136,
30:04but wanted the night to think about it.
30:07As a mother of special needs son,
30:09there are days that I thought how could
30:11she ever want to do that to her daughter.
30:13Give relinquish the rights to DCS,
30:15but then on the days of
30:17the worst days of my son,
30:19I understood how frustrated it it could
30:21be and understood where she was coming from.
30:23Knowing the limited supports that she had
30:25and the inability to access services.
30:27The next day,
30:28mother called the team and was
30:30certain that she did not want
30:31to relinquish her rights.
30:32She wanted to continue to care for Celina.
30:34For me,
30:34this was the most relieving
30:36feeling we knew we had a lot of
30:38work to do between her and Celina.
30:39We began having weekly sessions
30:41with her and Doctor Ahmed
30:43to help repair that relationship and help
30:46to foster more positive communication.
30:51Somehow, even with all of this.
30:53These feelings are relieved.
30:55I still had concerns that no matter
30:57what we put in place may not be enough.
31:00After all of this hard work,
31:02we finally came together as a
31:03team with providers and we thought
31:05Triple P would be a great option.
31:07Mother still had some concerns
31:08as to if it would be helpful.
31:10After a lot of encouragement,
31:12she decided to give it a try.
31:15We finally fill out the referral.
31:16We're so excited.
31:17They have immediate openings.
31:19And the referral was denied.
31:21We were back at Square one,
31:23collaborating with advocates and agencies.
31:25And I'll turn that back over to Lori.
31:28Alright, so too.
31:31Add the potential drama
31:32of compassionate care rounds.
31:34I never we never reveal the ending of
31:37the case or how the case concluded.
31:39We'll tell you how that the case concluded
31:42from our perspective in a few minutes.
31:45This is the most important part
31:47of compassionate care rounds.
31:49We'd like to hear from
31:51you as audience members.
31:52What are your thoughts about this case?
31:55How would you have responded?
31:57What are the ethical, emotional,
31:59professional dilemmas and
32:00that you hear in this case,
32:02and how do you think our team
32:04did in responding to them?
32:06So I'd like you each to indicate in
32:09the chat that you'd like to either
32:11contribute to comment or to ask a
32:14question of any of the panelists,
32:16and hopefully this will work so
32:18that we can hear from as many of
32:21you for the next 20 minutes or so.
32:23And I promise that we will give
32:25you how the case ended after
32:28this discussion period.
32:29So who would like to offer a
32:32comment or even to ask a question?
32:40Let's see. So let's
32:43see David daversa. I think wants to
32:46comment on the case David, you unmute
32:48yourself and you can say something.
32:58Amy, yes we hear you now.
33:01Also known as.
33:04At the Beacon Terry Program and and
33:07basically fit the child division,
33:09we see a lot of cases.
33:11Unfortunately, his complex medical
33:13needs and complex psychiatric needs an.
33:15It's it's clear that the there is a
33:17lot of debate as to where and who
33:21should take the responsibility.
33:22It is it, mostly medical,
33:24or is it mostly psychiatric or what?
33:27If it's 5050,
33:28should who should be dealing with it?
33:31Should DDS be involved as a DCF?
33:33Is on and.
33:34And you you feel frustrated
33:36because you see you see,
33:38you see like you know,
33:39these kids are almost treated like
33:41a hot potato and it's not 'cause
33:43no one wants to care for them.
33:44It's just who has the money
33:46or to care for them.
33:47I think is the biggest concern and
33:49I think you know you know input
33:51from community providers and big
33:52agencies and collaboration with
33:53all the agencies is how we're
33:55going to solve this problem.
33:57And that's what we're working
33:58on from our end is.
33:59How do we make a system that?
34:02That is collaborative across
34:04medicine across behavioral health,
34:07institutions and cross insurance boundaries.
34:12David could in the first part of
34:15when you spoke was cutoff a little.
34:17Could you just remind the group
34:19of the work, your role, and the
34:21work of this? Yeah, so I am.
34:23I'm the medical director also
34:25have two roles within Beacon.
34:27So my first role is with the base contractor,
34:30the where the S there were the
34:32mysterious organization of the state
34:33of consciousness to Connecticut
34:35contracts out to oversee Medicaid and
34:37Medicaid funds for behavioral health.
34:38And I'm the medical director
34:40of child services.
34:42And there's a whole new division in
34:43Pekin with all these new contracts
34:45and on the child and Family Division
34:47serves its beacon voluntary services.
34:49We have access mental health which a lot
34:52of you know bout is under that division.
34:54Intensive care coordination as well
34:56as integrated family support care
34:58which is another program we have
35:00and so I'm the medical director
35:01that sees overseas both sides of
35:03the so basically all of the child
35:05and Family Division of Beacon.
35:08So as a child psychiatrist we can turn
35:11to you to fix this system, correct?
35:14We're working on it OK?
35:18The chat is open please.
35:19We'd like to hear from more of you.
35:31It looks like Mam has a question. Yes,
35:34I I did. I did raise my
35:37hand. I'd love to just say kudos
35:39and just so a wonderful job as
35:42a an attending who worked over
35:45the weekend with this child.
35:47I got some really great
35:49feedback and direction on how as
35:51a team, we're
35:53treating her and it shows just
35:55such incredible insight into into
35:57the decisions that were made to
35:59specifically treat her more as a.
36:03A bigger kid
36:04and I really appreciated that and I
36:06think that you know there's a lot of
36:09things that we don't have in our control.
36:12There's a lot of things that I wish I
36:15could change about a lot of kids lives
36:17that I see in the emergency Department,
36:20and that I send over to you guys
36:22on Winnie one, but I'm but I'm
36:24struck an I'm so impressed by your
36:27ability to see what you were
36:29doing and continue to
36:30make what you're doing
36:31the most therapeutically
36:32beneficial for this child.
36:34And it made my coverage so much
36:36more meaningful because I could work
36:38within those frames.
36:39So I wanted to say thank
36:41you. I know
36:42there's a lot of things that we can do, but I
36:45did want to bring that up as
36:48a as a special point. Thank
36:51you, Pam. Heather Howell is asking
36:53how did staff keep their spirits and
36:56hopes up over the course of two months.
37:00Heather was there something else
37:01you wanted to ask as part of that
37:04question, I'm just thinking about it from a
37:06self care lens.
37:07Like I, I've never met this
37:09little person and I feel so heavy hearing.
37:11And putting myself in the shoes of
37:14those of you who had the honor of
37:16being with her and I wonder how you.
37:19Managed your own Wellness
37:21during that time, so maybe
37:23we can hear from Maggie Ann
37:26Kashaf on this question.
37:31First OK hi. So yeah I I entirely
37:34agree it is a very heavy heavy feeling
37:37that I mean I feel like I could speak
37:41for the both of us in that sense.
37:46It was, it was very difficult.
37:48I mean, and truly we were initially,
37:50as I said, we were babying her in the
37:53beginning because we so desperately
37:54wanted to make her feel the love that
37:57she had been lacking is what she
37:59was telling us at least, but again.
38:03You know there was a lot of debate and a
38:06lot of discussion between staff on the unit,
38:09and I think you know we're
38:11probably still at a divide today.
38:13If we were to rehash this and
38:15talk about Salinas case again.
38:17As to whether or not you know
38:20we did all that we could.
38:22Because we did,
38:23we let her sit in her room and cry.
38:26For I mean,
38:27it felt like days on end and there
38:29was not a lot that we could do to
38:32kind of help help solve that for her.
38:35So it was.
38:35It was tough and we talked a
38:37lot about we did.
38:39We talked a lot about our feelings
38:41at that point in time and we were
38:43all pretty honest with each other.
38:45So I think that that helped.
38:47But there was really nothing.
38:48I mean it was.
38:50It was a lot of reflection,
38:51I suppose in my practice.
38:53So.
38:56Yeah, and I agree with what Maggie said.
38:58I think one of the big keys was just
39:00sort of the openness within the
39:02team to acknowledge that there were
39:04moments where my spirits were not
39:05high or that I was really frustrated
39:07or disappointed or discouraged.
39:08I think just speaking up about that
39:10and acknowledging that went along way.
39:12Actually, you know there were times where
39:14Selena was really disappointed with
39:16not be able to return home after that.
39:18Sort of initial excitement about
39:19being the hospital had worn off
39:21and so when she would ask me,
39:23am I going to be able to go home
39:25today and I would say Selena no.
39:27We can't get you home today.
39:29Those were really crushing conversations
39:31for her for us and then we would
39:34sit with Mom and we would say,
39:35you know,
39:36this service got denied or you know
39:38something about the income or Sydney's
39:40IQ being within the normal range
39:42has precluded her from this service,
39:44and that service.
39:45Those were heartbreaking conversations for
39:46the family and we definitely felt that.
39:49And so I think there were definitely
39:51moments where it was important for
39:53us to acknowledge that today my
39:55spirit is not up that much and I
39:57do feel discouraged and.
39:58We're going to take it one day at a time and.
40:00Do the best we can for this kid
40:02and her family.
40:03You know one step at a time and I
40:05think just being open about that
40:07went a long way for me.
40:10We have a follow up question from
40:12Peter Castagna who says how does
40:15your team handle situations where
40:17parents themselves seem like they
40:19need a referral like treatment
40:20for a major depression that would
40:22improve the child's outcome.
40:24So Melissa Ann Suman,
40:25maybe you can address this concern.
40:27Did we feel like the mom might
40:29benefit from her own treatment?
40:32And how do we handle that
40:34in a delicate manner?
40:37Yeah, so I can speak a little bit.
40:39Maybe Doctor Duncan jump in Mom
40:41was actually in treatment as far
40:43as we knew Mum Mum had reported
40:45she was in treatment herself.
40:47A man getting therapy.
40:48I don't believe it was for depression.
40:50I think it was for anxiety.
40:52But anytime you have a mother
40:55or a parent or a caregiver who.
40:57You know we're concerned about whether
40:59they have depression or anxiety or it's
41:01impeding their relationship with the child.
41:03It will often bring up,
41:04you know, have they thought about
41:05going into getting you know,
41:07therapy for themselves,
41:08or some type of support in place,
41:09and we kind of delicately bring it up.
41:11But we also want to make sure that you know
41:14it's something that they're thinking about.
41:16Sometimes they'll say yes,
41:17and then other times will say no.
41:19I haven't thought about it,
41:20but I do want to,
41:21and then I will give them some resources.
41:27I was going to so when we spoke
41:30with Mom as Melissa had mentioned,
41:32it depends on the parents readiness.
41:35But one thing which was quite evident in each
41:39of our meetings with all of the providers.
41:43Is the amount of stress that the mom was in.
41:47Despite not having Sydney
41:49with her at that time,
41:52so the emotional burden and the
41:55anxiety of her was always with her.
41:58Even though Sydney was.
42:02For lack of a better word,
42:04let's use the word village and
42:05a lot of people supporting each
42:06other to take care of her.
42:10So one thing which we had personally what
42:13I tried to do as a team that we had to,
42:16we try to do is just to be.
42:20Understanding and compassionate towards
42:23suffering of the mom as well as.
42:27As well as Sydney,
42:28so that was I think one thing,
42:30and that's where as far as the this
42:33kind of relates to the previous
42:35question about keeping the hopes up.
42:38It's the goal was never to push
42:40in such a way that Mom felt
42:43uncomfortable and there was a delicate.
42:46It's almost like learned helplessness.
42:48We didn't want Mom to lose hope.
42:52So that's where we wanted to see any
42:55smaller ends which we could latch
42:57onto and then go a step ahead and just
43:00think about one step at a time as
43:02opposed to an all the whole process.
43:05Try to help Mom understand that it's a.
43:08It's these little steps.
43:10It's not like a major change may not happen.
43:15Have
43:16another follow-up question.
43:17Robert Liberal is asking
43:18how did this staff, Maggie?
43:20I think this question might serve you well.
43:23How did this staff mitigate the risk
43:25factors associated with having a
43:27wheelchair on a psychiatric unit?
43:30Yeah, so that that is always an interesting.
43:35An interesting topic because we don't
43:37necessarily see wheelchairs all too
43:40often and not since I have started here.
43:42I have not seen a wheelchair on the unit.
43:46So initially, when she did
43:47come over in this mind,
43:49you again adult sized wheelchair.
43:51Not only was it hard to navigate
43:54through doorways, let alone navigate
43:56around other children, I mean it was.
43:59It was a huge issue for a little
44:02while and I was always concerned.
44:05That she was going to fall out
44:06because she was slipping and sliding
44:08all over the place and at times a
44:11little bit impulsive and trying
44:12to jump out an unmanned you jump.
44:14I don't necessarily mean really jump,
44:16but she was quick 'cause she was very quick.
44:20So it was very hard and keeping the
44:22other kids in the milieu and having
44:25them be aware that you know it is
44:27a true wheelchair for disability,
44:29not something that they can play with,
44:31not something that they can push her around.
44:34And it was hard,
44:35and we had to have a lot of
44:37conversations about it,
44:39but not as many as I was expecting.
44:41I suppose the kids actually did really,
44:43really well,
44:44and they were quite helpful with Celina,
44:46they they really helped her at times and and.
44:51Looked at it more so from the
44:53perspective of wanting to help as
44:56opposed to seeing it as something
44:58that they could play with or,
45:00you
45:00know, do some harm with I suppose,
45:02and I want to give a shout out.
45:05You know, sometimes just having a
45:07little bit of a professional temper
45:09tantrum helps and that was Andreas
45:12Martin having a little temper tantrum
45:14and saying this would not stand.
45:16We need a pediatric wheelchair on this unit.
45:19Please get one to US stat and
45:22through his insistence we were
45:23able to eventually get a pediatric
45:26wheelchair for her on the unit,
45:27which was appropriately sized and
45:29dimension at cetera and help her
45:31maintain an appropriate posture.
45:33We also had physical therapy and occupational
45:35therapy begin to come on the unit,
45:37so these are all the things we
45:39had to do to maximize her adaptive
45:42functioning on the unit.
45:44Walter Gilliam says thank you
45:45for an excellent presentation on
45:47finding the whole child between
45:49all the medical specialties.
45:50His quick question is.
45:52When we talked about enuresis biting
45:54and hitting we framed it initially
45:56within the context of aggression.
45:58Yet this presentation also mention that
46:01the patients presentation pulled for
46:03infantilizing responses from the staff.
46:05And he asked,
46:06why not frame or think about her
46:09and Reese is biting and hitting
46:12as self infantil isation.
46:14Rather than simple aggression,
46:16Walter did you want to clarify
46:19your question any further?
46:28I wasn't. He'd have to
46:29unmute himself from that.
46:30Sorry bout that. I
46:31was having a hard time
46:33getting the unmute to work.
46:34I can't think of anything else to add
46:36to to it except it just it did kind
46:39of strike me that the whole set up
46:41to that discussion was around health.
46:44Her behaviors pulled,
46:45fronting penalizing response
46:46from the staff and and
46:48but but the the
46:49chief complaint. They got her
46:51in was the aggression. And
46:53then when the staff then tried to
46:55increase her degree of individual,
46:57is azatian herself efficacy that the
47:00those behaviors came back? And since they
47:02seem to come
47:03back in response to a B of
47:06trying to get her to be more
47:08self sufficient, it seemed like
47:10to me it was going to lead
47:13towards a framing of that is.
47:15Being more related
47:17to the self infantilizing nature of
47:19things rather than dislike the chief.
47:22Complaint of aggression.
47:23So I was a little surprised
47:25by the way in which it
47:26was described later, and
47:27I'm just curious but cautious.
47:29Maybe you can clarify how you saw the
47:32waxing and waning of. Yeah, yeah,
47:34yeah, I think it's another example
47:36of how Selena's case is 1,
47:38in which the more that we were able to
47:40keep an open mind about what was happening.
47:43The better we could understand like
47:45idiosyncratically what is happening
47:47with the specific kid. 'cause I.
47:48Similarly when I when I first met her,
47:51understood that there all these
47:53aggressive behaviors at home and actually
47:55Mom had brought in a flash drive.
47:57A little thumb drive with sort of
47:59documented episodes in which Selena
48:00had been violent towards her.
48:02And so my initial conceptualised
48:04conceptualisation was one of aggression.
48:05And I think as we got to know her,
48:08we recognize that none of this quote
48:10unquote aggression occurs in a vacuum,
48:12and that there's there sort of acute
48:13precipitants for what might be happening,
48:15as well as more sort of longer
48:17lasting precipitants.
48:18For why this kid is doing what she's doing.
48:20And so some of that was,
48:22I think, I think,
48:23the way that you describe it is is really
48:26on point with what we saw in many ways.
48:28And I think some of it was sort of a.
48:33Cry for help.
48:34A cry for attention.
48:35When she felt completely overwhelmed and
48:36that she's not getting attention from Mom.
48:38I think Maggie described it really nicely
48:40with sitting through these conversations,
48:42in which mom would not be as
48:44receptive towards what Selena
48:45was saying as we would hope.
48:47And so it sort of puts these behaviors
48:49in a different context and that it
48:51forces people to pay attention to
48:53and to hear what she's if not what
48:55she's saying and what she's doing.
48:57And so I think it was another
49:00example of where.
49:01Sort of the initial conception that we had.
49:04If a patient was reframed by sort
49:06of understanding what else was
49:08going on in what was precipitating
49:09these kinds of behaviors.
49:13And I just I. I also wanted to add that.
49:17In addition to these behaviors,
49:19one thing which we always struggle with this.
49:23Selena had some limitations,
49:27certainly prominent limitations physically.
49:31But also, where are all these
49:34behaviors happening within the
49:37context of not being able to?
49:40Do what a typical 9 year old can do.
49:44Or is it related to that self self
49:47infantilization or the tantrums
49:49which she kind of presents with,
49:52so that's where it became
49:54complex as to where we.
49:57I had to set those limits and boundaries.
50:01Where she can learn to cope with the
50:04distress that she is feeling and where she
50:07has to be provided that kind of support.
50:10And it fluctuated on a day to
50:12day out to our basis actually.
50:17We have a shout out to
50:19the team from the Child
50:21Study Center speech and language
50:24pathologist Leah Booth who says as
50:27a speech and language pathologist.
50:29I was impressed by this team's
50:31awareness that there's a distinct
50:33difference between a receptive
50:36language or comprehension disorder.
50:38An an expressive language
50:39conveying conveying of meaning.
50:41Too often society judges the
50:44capacity of a person developmentally,
50:46intellectually and adaptively.
50:47By the content of the
50:49verbal language formulation.
50:51Things like alternative an
50:53augmented forms of communication
50:55like the iPad app are essential
50:57for people who are not able to
51:00communicate language via speech.
51:02Absolutely.
51:10So I want to give now a couple of
51:13minutes remaining to the summary of
51:16the case 'cause I left you in suspense
51:20about how did the case end and so I
51:23was going to let now Melissa and Suman
51:27kind of give the end of the story. How?
51:30How are hospitilization concluded?
51:32But also all of the follow up
51:35that has been transpiring.
51:38Yeah so. After a lot of
51:43work with Mom in Salina.
51:45And all of the providers we were able
51:48to secure 25 hours of behavioral tech in
51:51the home for direct hands on care that was.
51:54Going to start pretty immediately
51:55or relatively immediately,
51:56so we were able to discharge her home to Mom,
51:59which we were very happy about,
52:01and although it was 25 hours of
52:04behavioral tech in the home,
52:05they were actually working on
52:07increasing that to 40 hours per week,
52:09which is a lot.
52:12So Mom would have a lot of support
52:14in the home we are continuing to
52:16help Mom and Doctor Brown talked
52:18about this a little bit more,
52:20but we are continuing to help
52:21provide mom with documentation as
52:23mother is currently awaiting neuro
52:24psych evaluation and other testing.
52:29So. Mom suddenly it pizza.
52:34Or Salinas needs?
52:36You need a village to take care of her,
52:41and he ran the unit we had worked together,
52:45but at the same time in the outside setting.
52:49So Selina needed school,
52:51but also these outpatient therapy
52:53resources and support for Mom.
52:55So we're after she was discharged
52:57we we had worked towards providing
53:00documentation and detail evaluation
53:03related to how she was on the unit
53:06and what worked and what not work.
53:09What did not work so that
53:11that can be helpful for all of
53:15the providers going forward?
53:17And usually we do not have communication
53:20with the parents after the child gets
53:24discharged because the outpatient
53:26providers take over the care.
53:28But in this case as an exception,
53:32we Melissa specifically and ourselves,
53:34had continued to provide some
53:37support to Mom too.
53:39Guide her in the appropriate direction
53:41and provide the necessary paperwork.
53:48So I wonder if anyone has any final thoughts.
53:51I want to congratulate this amazing team.
53:54I was in team everyday listening
53:57and learning and about this case
53:59and seeing Selena on the unit,
54:01the compassion, the love,
54:03the care that this child received on the
54:06unit was just absolutely extraordinary
54:08and also the care given to the mom and
54:12the advocacy within the community.
54:14We don't often called the Office
54:16of the Health Care advocate.
54:19To help us with children and and we
54:21really had to have a really broad
54:24scope in helping this child at all
54:27of these various systems levels,
54:29so I'm very grateful to be part of this team.
54:32This child received an mother
54:34received exceptional care,
54:35so thank you to our panelists
54:38for representing amazing care
54:40that this child received.
54:42On behalf of our grants coordinator,
54:45Doctor Martin, he asked me to let you
54:49know what is on tap for next week.
54:53Next week we will have a speaker,
54:56Christine Norton.
54:57She is from Texas State University
55:00and very appropriately,
55:02her talk is entitled Outdoor
55:04Behavioral Health Care.
55:06Integrating nature into therapy.
55:08So I think in these times of us.
55:12Thinking about therapy
55:13in the broadest places,
55:14I think it'll be an exciting
55:17grand rounds presentation,
55:18so that's tomorrow.
55:19Sorry next Tuesday,
55:20October 6th and we look forward to
55:22seeing that at that time I'm going to
55:25leave this zoom open with our panelists.
55:28So if anyone wants to stay on the
55:31line and ask a more private question,
55:34I'm going to ask Maggie and Suman and
55:37Kashief and Melissa just to stay on the zoom.
55:40And if anyone wants to stay
55:42back and ask a question.
55:44Will stay on for a few more minutes.
55:48Thank you so much.
55:49Lori,
55:50if you don't mind, I will end
55:52the recording rather than OK.
55:54Thank you. Yes, thank you so much.