Partnering with Family Caregivers to Improve Healthcare Experiences for Children with Autism

Patricia Sullivan Author

03/23/2021 Added

6 Plays

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[00:00:03.150]Good morning.
[00:00:06.380]I'm gonna begin with a story.
[00:00:09.380]About four years ago on Christmas Eve Day,
[00:00:13.090]in the wee hours of the morning,
[00:00:14.800]I was in a deep sleep and I felt this tremor.
[00:00:21.149]It felt like an earthquake.
[00:00:23.660]And I woke up with a start,
[00:00:25.590]and I sat on the edge of my bed and I was looking
[00:00:28.940]around the room and everything looked calm and in order
[00:00:33.200]and I was trying to make sense of what I experienced.
[00:00:38.238]And I was a sitting on the end of the bed.
[00:00:39.800]I realized I couldn't feel my hands.
[00:00:45.150]Well, I spent the next four days,
[00:00:47.220]including Christmas Eve Day and Christmas Eve
[00:00:50.960]in the cardiac care unit recovering from a heart attack,
[00:00:54.197]and the earthquake had in fact been a heart attack.
[00:00:59.110]And when I was released, I spent the next 12 weeks
[00:01:04.560]wearing something called the Life Vest.
[00:01:07.560]And it's a vest with a defibrillator on it
[00:01:10.220]so that if your heart stops suddenly,
[00:01:13.750]the vest will shock you and bring you back to life.
[00:01:21.850]You're sitting there thinking, okay, interesting story.
[00:01:26.930]I don't really know you, but glad you're alive.
[00:01:30.700]Oh, what does this have to do with why we are here today?
[00:01:34.780]I promise you there's a reason.
[00:01:36.280]So hang with me a few more minutes.
[00:01:38.860]So when a life event like that happens,
[00:01:42.960]it feels like a tsunami,
[00:01:44.880]and a tsunami is either going to swamp you
[00:01:49.750]or it's gonna take you to a very different place.
[00:01:53.470]And in this case, my heart attack,
[00:01:56.280]my tsunami, took me to a very different place
[00:01:59.720]and it took a few years to get there
[00:02:02.020]but I realized that I needed to take stock
[00:02:06.730]of what my life meant and what I should be doing.
[00:02:11.820]And it basically led me to Children's Hospital
[00:02:17.730]to become the coordinator of a program
[00:02:21.160]that we have called PATCH.
[00:02:24.010]And so today I wanna share with you the PATCH story
[00:02:29.990]and then spend some time dialoguing
[00:02:32.830]with you after this recorded video
[00:02:35.700]about how we can take PATCH to the next step.
[00:02:40.940]So let me stop there and share my screen,
[00:02:52.370]and I'm almost there.
[00:02:58.260]All right.
[00:03:02.770]So the title of this presentation is
[00:03:05.827]"Partnering with Family Caregivers
[00:03:08.737]"to Improve the Healthcare Experience for Children
[00:03:11.637]"Diagnosed with Autism Spectrum Disorder."
[00:03:14.350]Again, my name is Dr. Pat Sullivan,
[00:03:16.750]and I am the PATCH program coordinator
[00:03:19.420]at Children's Hospital.
[00:03:21.940]Now children diagnosed with autism spectrum disorder present
[00:03:25.240]with unique challenges when seeking healthcare.
[00:03:29.480]The PATCH program at Children's Hospital was created
[00:03:32.300]in response to feedback from parents
[00:03:35.240]on how we could all work together
[00:03:37.470]to improve the healthcare experience
[00:03:40.110]by creating individualized plans
[00:03:43.080]to support each child's unique needs,
[00:03:47.310]using information from parents and guardians
[00:03:50.220]as experts on their children.
[00:03:53.240]The program borrow strategies from the IEP
[00:03:56.220]such as use of social stories
[00:03:58.720]and augmentative and alternative communication devices
[00:04:02.220]as well as that direct parental involvement.
[00:04:05.370]But it differs in that it is specific
[00:04:08.560]to the healthcare environment, and it shouldn't be confused
[00:04:12.690]with the 504 plans or IHPs, which I will go
[00:04:16.140]into greater detail later in this presentation.
[00:04:19.830]So hang in there with me for the next 30 or minutes or so
[00:04:23.720]while I share what we have learned
[00:04:25.480]through the implementation
[00:04:26.940]of Adaptive Care Plans at Children's Hospital
[00:04:30.100]as well as its place among other plans
[00:04:33.970]and services that support children with special needs.
[00:04:39.120]So before we can explore how to improve
[00:04:42.560]the healthcare experience,
[00:04:44.950]we first need to understand it.
[00:04:50.210]There are numerous research studies that provide evidence
[00:04:53.590]that children with autism have more healthcare encounters
[00:04:57.710]in any given year when compared
[00:05:00.060]with children who do not have autism.
[00:05:02.740]And this includes a comparison group of all children,
[00:05:06.120]including those with chronic conditions
[00:05:09.660]nor developmental disabilities and nor typical children.
[00:05:14.550]This study shows that children ages three through nine
[00:05:19.770]who have an autism diagnosis
[00:05:23.240]have 66% more outpatient visits,
[00:05:28.240]2.5% more inpatient hospital admissions,
[00:05:32.940]and 5% more trips to the emergency department.
[00:05:37.200]And this is only part of the picture.
[00:05:39.660]Research further suggests that increased barriers
[00:05:44.530]and limitations to healthcare access
[00:05:46.900]are also an issue for patients with autism
[00:05:50.100]because of behavioral challenges related
[00:05:52.410]to disruption and routines, transportation challenges,
[00:05:56.730]and providers who may not have experience working
[00:05:59.870]with children and providing care to individuals with autism.
[00:06:06.470]The increase in healthcare encounters make sense
[00:06:09.800]when you consider that 93% of children
[00:06:13.350]with autism spectrum disorder
[00:06:15.350]have one or more co-occurring health condition,
[00:06:19.040]such as epilepsy, seizure disorders, ADHD,
[00:06:23.640]sleep disorders and disturbances, GI disorders,
[00:06:27.310]feeding, eating challenges, obesity, anxiety,
[00:06:31.030]depression, bipolar disorder, and the list goes on,
[00:06:36.590]and then factor in the healthcare environment.
[00:06:40.130]When children are unable to make sense
[00:06:42.960]of their surroundings, it can be frightening.
[00:06:46.230]For the child with autism who may have sensory differences,
[00:06:50.290]the healthcare environment can even feel hostile
[00:06:53.870]with crowded areas, unfamiliar lights and sounds,
[00:06:58.840]and machines and equipment.
[00:07:01.250]Most children on the spectrum function best
[00:07:04.840]with fixed routines and going to the hospital
[00:07:08.510]or the clinic is anything but routine.
[00:07:12.880]Then you consider the frenetic pace,
[00:07:15.850]strange people coming and going in and out of the room,
[00:07:19.570]being transported to other areas, noises in the hallway.
[00:07:24.850]82% of children in our PATCH program
[00:07:29.420]have an aversion to loud or sudden noises.
[00:07:34.090]70% are challenged when they're in an environment
[00:07:38.560]that's crowded and crowded can mean
[00:07:41.190]just simply having more than one person
[00:07:43.870]in the room at any given time.
[00:07:46.410]50% have sensory to light, bright, fluorescent,
[00:07:51.880]or flickering lights.
[00:07:53.690]And 34% have an aversion
[00:07:58.450]to being touched in specific areas,
[00:08:01.960]such as the hair, the eyes, the face, the nose, hands, feet.
[00:08:09.887]And when it comes to touch beyond physical examination,
[00:08:13.560]anything that comes in contact with the patient
[00:08:16.030]could be a potential trigger,
[00:08:17.410]such as instruments, topical solutions, linens,
[00:08:21.270]scratchy, rough fabrics, clothing tags, ID bands,
[00:08:25.340]band-aids, ECG leads, gel from an ultrasound machine.
[00:08:32.250]In our PATCH program, we looked at data,
[00:08:37.110]and 70% of our PATCH patients are needle-phobic.
[00:08:42.790]That is, they will have a visceral reaction, anxiety,
[00:08:46.560]or fear when you approach them to draw blood
[00:08:50.080]or to administer a shot or even medications.
[00:08:53.530]56% may react to the placement of the ID band on the wrist,
[00:08:59.490]which is a very common practice.
[00:09:02.610]One quarter of all of our kiddos are unable
[00:09:06.130]to lay comfortably on a gurney, sorry, gurney.
[00:09:10.810]And 28% have an aversion to band-aids,
[00:09:14.670]sticky substance of the band-aid,
[00:09:17.300]whereas another 20% actually see a band-aid as an incentive.
[00:09:21.920]They like getting band-aids.
[00:09:23.510]It can be a good reward.
[00:09:25.610]And it's impossible to know specifically
[00:09:29.720]for any given child, whether or not
[00:09:31.920]they're sensitive to something.
[00:09:34.370]And then lastly, let's figure in the child's emotional
[00:09:39.360]and physical state, again, that disruption in routine
[00:09:42.810]just taking a different route in the morning,
[00:09:46.740]driving to the hospital, parking the car,
[00:09:49.530]walking into the clinic, again,
[00:09:52.420]faced with that hospital environment,
[00:09:54.730]frustration at a change,
[00:09:57.200]or maybe not being able to articulate how scared they are.
[00:10:02.960]They may be tired and hungry.
[00:10:05.770]Many of our procedures require that patients
[00:10:08.560]not have anything to eat or drink.
[00:10:10.940]So in the morning they can be hungry,
[00:10:12.910]or maybe they're not able to have their medications
[00:10:15.680]to help manage fear and anxiety.
[00:10:18.730]And lastly, they're in a healthcare environment.
[00:10:21.680]So it's entirely possible that they're actually
[00:10:24.470]experiencing pain or physical discomfort.
[00:10:30.180]These challenges, all of these challenges together,
[00:10:34.050]can compromise the success of medical care
[00:10:37.230]whether or not we're able to actually successfully
[00:10:40.110]complete a procedure, can compromise patient
[00:10:44.130]and staff safety because some children
[00:10:47.860]are aggressive or may engage in self harm.
[00:10:51.480]It can compromise access to care
[00:10:53.970]just making it so challenging again
[00:10:56.450]that it becomes difficult
[00:10:57.670]for parents to actually bring their children in.
[00:11:00.490]And it can also compromise developmentally
[00:11:03.220]appropriate patient autonomy.
[00:11:05.270]That is the ability to participate in one's own care.
[00:11:10.027]And even as a child,
[00:11:12.010]the ability to make some decisions,
[00:11:15.750]engage in their own care is so vital
[00:11:19.340]as they increase that patient autonomy
[00:11:24.500]moving into adolescence, young adulthood, and adulthood.
[00:11:29.690]So Children's Hospital considered all of this context
[00:11:35.210]and had worked with other hospitals
[00:11:37.790]in looking at what a potential solution could be.
[00:11:42.550]And what we came up with was an Adaptive Care Plan.
[00:11:46.580]And we use this model based
[00:11:49.300]on some collaboration with Cincinnati Children's Hospital,
[00:11:52.980]who's had an Adaptive Care Plan program for about 10 years.
[00:11:58.290]So the Adaptive Care Plan basically
[00:12:04.220]takes information based on past healthcare experiences,
[00:12:10.060]triggers, calming suggestions, coping skills,
[00:12:14.380]and communication skills, and takes that information
[00:12:17.780]and shares it with staff.
[00:12:20.790]The staff, they can work together on coordinated strategies
[00:12:24.950]on how best to use that information
[00:12:27.830]to manage that environment.
[00:12:30.460]So that way we can keep the child
[00:12:34.100]from escalating or melting down.
[00:12:39.450]And then that information making it part
[00:12:42.428]of the electronic medical record
[00:12:45.290]for that child for future admissions.
[00:12:47.620]So when they come to the emergency room
[00:12:50.590]or if they're being admitted as an inpatient
[00:12:53.060]or coming in for another procedure, we have that information
[00:12:56.490]and then we can easily update it with parents.
[00:13:00.090]But the most important aspect
[00:13:02.370]of the Adaptive Care Plan is that this is all done
[00:13:06.250]in partnership with parents, guardians,
[00:13:09.350]and family caregivers who know the patient best.
[00:13:13.350]Standardized questions and response options
[00:13:16.120]related to developing rapport.
[00:13:18.780]Again, behavioral triggers,
[00:13:20.330]calming strategy, sensory aversions.
[00:13:23.270]This is all done in partnership with the parents
[00:13:26.420]through a consultation with our child life specialists.
[00:13:30.010]So we work together to create this Adaptive Care Plan.
[00:13:34.170]And then every time that child comes in
[00:13:35.980]if we need to update it, we're able to update it.
[00:13:40.270]So this is an over simplification
[00:13:44.070]of something called function-based thinking,
[00:13:47.470]but this is really the underlying principle
[00:13:50.320]on how the Adaptive Care Plan works.
[00:13:54.420]So children with autism or just children in general
[00:13:58.720]simply do not act out to act out.
[00:14:02.800]There's always an antecedent.
[00:14:04.940]There's an event or an action that occurs
[00:14:07.540]just prior to the behavior.
[00:14:09.910]And then the behavior is how the patient responds
[00:14:13.190]to the event or action.
[00:14:15.300]And then we have a consequence.
[00:14:16.800]What happens after that patient's response?
[00:14:21.060]So behavior can be out of pain, fear, frustration,
[00:14:26.620]or an unmet bodily need.
[00:14:28.870]Maybe they have to use the bathroom
[00:14:31.420]or they're hungry, or they're tired.
[00:14:34.380]Behavior can be used to get attention
[00:14:36.960]or for sensory stimulation or simply to get access
[00:14:40.940]to something, like they really want that iPad
[00:14:43.870]or their stuffed animal or an item.
[00:14:47.420]And it can also be to avoid
[00:14:49.860]or escape that's unpleasant or frightening,
[00:14:54.590]which is again very common in the healthcare environment
[00:14:59.140]to want to escape something that the child's afraid of.
[00:15:04.390]So we take behavioral function-based theory
[00:15:08.640]and we apply that to behavior.
[00:15:11.750]So how the Adaptive Care Plan works is we have
[00:15:15.350]what's called an escalation curve.
[00:15:17.750]Now a child coming into the hospital
[00:15:20.350]is very rarely in a completely calm state.
[00:15:24.460]They've already started to move up
[00:15:27.170]on this escalation cycle,
[00:15:29.190]just by virtue of that disruption of routine.
[00:15:32.820]And then they might get triggered by the noise
[00:15:38.640]in the waiting room or having to wait
[00:15:43.430]or any number of things in the environment.
[00:15:46.600]And if those triggers go unmanaged
[00:15:50.210]then we have escalation, acceleration, and peak
[00:15:53.960]and that can lead to a full-blown meltdown
[00:15:56.820]with that deescalation and recovery period
[00:15:59.530]taking maybe 15 minutes to two hours to even several days.
[00:16:06.760]So the Adaptive Care Plan by identifying specific triggers,
[00:16:13.470]we're able to work to flatten that curve
[00:16:16.850]by mitigating those triggers,
[00:16:18.960]changing the environment as much as possible.
[00:16:22.570]Now we're healthcare,
[00:16:25.260]and we can't always change the environment.
[00:16:29.310]There's only so many ways that we can administer medications
[00:16:33.560]or draw blood.
[00:16:37.020]There are protocols that we have to follow for safety.
[00:16:40.230]So some level of agitation's expected
[00:16:44.020]but when we know that
[00:16:47.120]and we know what a child's specific response is going to be,
[00:16:51.890]what are those early warning signs
[00:16:54.350]that they are becoming anxious
[00:16:57.780]or scared or frustrated or might act out?
[00:17:01.960]Then we introduce calming techniques,
[00:17:05.280]specific calming techniques that are unique to that child.
[00:17:09.100]Again, recognizing early signs of agitation
[00:17:12.470]and being prepared with those calming techniques
[00:17:14.930]we're able to potentially prevent
[00:17:17.550]that massive escalation that might require
[00:17:20.570]having to actually reschedule the procedure.
[00:17:24.240]And then we have safety concerns to consider.
[00:17:27.570]Again, looking at the data from our pilot program
[00:17:31.350]45% of our children had shown some sort
[00:17:35.140]of aggression towards others in a previous environment
[00:17:38.550]in a previous situations.
[00:17:40.087]And 42% have engaged in self harm,
[00:17:43.700]such as pulling it hair or scratching.
[00:17:48.280]One fourth of our kiddos are an elopement risk.
[00:17:51.800]And so knowing that and being able to manage the environment
[00:17:56.170]so that they can't escape and get out of the room
[00:17:58.920]and maybe into an area that might be less safe.
[00:18:02.850]And 22% of our parents have reported
[00:18:05.690]that in previous experiences,
[00:18:08.350]not necessarily at Children's Hospital,
[00:18:10.460]but in other environments,
[00:18:12.060]they've had to be restrained or held down in the past.
[00:18:16.070]And we'd like to do everything we can to mitigate that
[00:18:18.730]to not have to do that.
[00:18:22.030]So that way we can proceed very calmly with the procedure.
[00:18:28.650]As we look at familiar or calm,
[00:18:33.270]frequent calming and coping strategies,
[00:18:36.290]58% of our children simply need a quiet place to recover
[00:18:41.970]to be able to make sense of the environment
[00:18:44.520]to sort of return to that baseline.
[00:18:47.290]About half of them can do that
[00:18:49.140]with a tablet or iPad or iPhone,
[00:18:54.130]time and hugs with family caregivers.
[00:18:57.240]Half of our kiddos, if we could just provide that time
[00:19:00.150]and space to just cuddle with a family caregiver,
[00:19:03.450]again, bringing that deescalation process.
[00:19:10.190]Having a comfort item from home
[00:19:12.920]and 10% of our kiddos really benefit
[00:19:15.410]from noise canceling headphones.
[00:19:19.970]So this is what the Adaptive Care Plan actually looks like
[00:19:25.060]in Epic, our electronic medical record system.
[00:19:28.090]Now I know this is a very busy, complicated slide.
[00:19:31.410]So I'm gonna take you through each area
[00:19:34.690]of the Adaptive Care Plan to explain what it is
[00:19:37.397]and how it's used.
[00:19:39.260]The first part is communication.
[00:19:41.370]And we deliberately have this
[00:19:43.190]as the first area of the Adaptive Care Plan,
[00:19:47.400]so that way caregivers know how to develop rapport
[00:19:51.230]and trust with that child right out of the shoot.
[00:19:54.870]So a preferred name, how to approach that child.
[00:19:59.310]In this case, approach at their level, make eye contact,
[00:20:03.210]but don't touch, no fist bumps, or high fives.
[00:20:06.490]Some children, they like that.
[00:20:09.770]They want the physical contact,
[00:20:12.180]the high fives, the cheery, upbeat greeting.
[00:20:17.810]Does the child have a particular interest
[00:20:20.350]or a favorite toy that we should know about?
[00:20:22.740]What's the best way to prepare that child
[00:20:25.500]for transitions and procedures?
[00:20:28.420]Is it best to use a timer, such as in five minutes
[00:20:31.650]we're going to do this, and then we're gonna do this,
[00:20:34.190]or a visual schedule, or is this kiddo, just do it?
[00:20:39.333]Just come do it and get it done.
[00:20:42.420]And then we'll manage afterwards.
[00:20:46.910]Expressive communication.
[00:20:48.670]It's so vital that we understand
[00:20:51.090]how a child is able to express themselves.
[00:20:54.260]In this case, it's sign language, a communication board,
[00:20:58.010]or a communication device.
[00:21:00.840]It could be that they're verbal or they're partially verbal
[00:21:04.840]or perhaps non-verbal.
[00:21:06.730]Fully one third of all of our children are non-verbal.
[00:21:11.650]Receptive communication.
[00:21:13.570]How then do we communicate with that child,
[00:21:16.090]so that they understand what we're saying?
[00:21:19.450]So in this case, the advice is to speak slowly
[00:21:23.720]and only present as much information that's needed.
[00:21:26.900]Use that communication device.
[00:21:29.240]And this child really benefits from demonstration
[00:21:32.610]or modeling on a parent or a stuffed animal.
[00:21:36.420]And then how does that child express discomfort?
[00:21:40.160]Some children have different pain tolerances.
[00:21:43.020]So we need to know how to recognize
[00:21:46.040]that they are experiencing pain or discomfort.
[00:21:49.170]Do they engage in some repetitive motions?
[00:21:51.810]And if so, what does it mean?
[00:21:54.490]In this case, this child will engage in hand flapping,
[00:21:58.610]and it means agitation and excitement.
[00:22:01.920]Sometimes it means that they're happy
[00:22:04.300]and sometimes it can be the last thing that we see
[00:22:06.920]before they engage in a full meltdown
[00:22:09.480]or perhaps some sort of outward aggression.
[00:22:12.670]So that's the communication area.
[00:22:15.510]And then we move into something
[00:22:16.980]that we call PATCH priorities.
[00:22:19.370]And this is if the caregiver only has a millisecond to look
[00:22:23.970]at the Adaptive Care Plan, what are those five things,
[00:22:27.190]four or five things that they really need to know
[00:22:30.170]about engaging with this child?
[00:22:32.550]This is where we put any risks, any safety risk.
[00:22:36.050]In this case, this child has a history of trying to escape.
[00:22:41.340]There has been aggression towards healthcare providers
[00:22:44.380]such as hitting, kicking or head butting, and biting.
[00:22:48.290]So we need to know that.
[00:22:51.260]And then what are their anxiety triggers?
[00:22:54.440]Behavioral challenges, sensory actions.
[00:22:58.610]Do they have sensory reactions?
[00:23:00.070]And if so, to what?
[00:23:01.430]In this case, it's loud noises, unexpected noising,
[00:23:05.520]and the beeping of the hospital equipment.
[00:23:07.740]So if there's any way that we could silence
[00:23:10.040]that hospital equipment that would sure go a long way.
[00:23:13.800]And then calming suggestions.
[00:23:15.910]Does the child have a favorite item?
[00:23:18.330]What are things that have worked in the past?
[00:23:20.530]Again, getting that information from parents
[00:23:23.130]and then how do we calmly prep for that procedure?
[00:23:27.880]Do we do a first then, allow the child to touch instruments,
[00:23:32.760]distract the child from the examination?
[00:23:35.540]What are some strategies that we can engage in
[00:23:39.450]to create a more calm environment?
[00:23:43.160]Then we go into healthcare specific considerations
[00:23:46.160]and I'm not gonna go through all of these,
[00:23:48.010]but is there a specific ID band placement?
[00:23:53.600]Will they wear a hospital gown?
[00:23:55.300]What should we avoid?
[00:23:57.910]Are there other things that we need to know
[00:23:59.810]about past healthcare experiences?
[00:24:02.570]And then lastly, sensory processing.
[00:24:06.210]Do they have sensory processing differences?
[00:24:09.010]And if so, is it a sensitivity
[00:24:11.370]or does it trigger a behavioral response?
[00:24:14.870]Again, all very important to know.
[00:24:17.320]So all of that information is
[00:24:19.140]in the Adaptive Care Plan that's available
[00:24:21.370]for our care providers.
[00:24:24.510]Now, this is our second year in the PATCH program.
[00:24:31.090]We have more than 500 children
[00:24:34.210]that we have developed Adaptive Care Plans for.
[00:24:37.660]We had an 18 month pilot
[00:24:39.400]and then we have gone hospital-wide for the last 12 months.
[00:24:43.810]And I need to put a caveat here.
[00:24:45.620]If you do go to Children's Hospital
[00:24:47.800]it's still in limited areas.
[00:24:49.660]It's in the inpatient environment, certain areas
[00:24:53.170]with scheduled procedures, and we are working to expand it
[00:24:57.260]in specialty clinics and then physicians' offices.
[00:25:02.137]And it takes a lot of work to do this because there's a lot
[00:25:05.270]of staff education that goes hand in hand with this.
[00:25:08.800]But to date, we are 500 plus PATCH patients.
[00:25:14.130]And of our PATCH patients,
[00:25:17.200]we have about 150 of those kiddos
[00:25:21.540]where parents have again reported
[00:25:23.960]that there is a significant concern
[00:25:28.190]about aggression and significant concern
[00:25:31.390]from the parent that it might be challenging to get
[00:25:35.360]through the healthcare experience.
[00:25:37.660]What we've learned in implementing the Adaptive Care Plan
[00:25:42.880]and doing some proactive work again
[00:25:45.160]with staff in the environment is that for all
[00:25:48.570]but two specific circumstances, we have been able to go
[00:25:53.570]through the procedure without any sort
[00:25:58.370]of significant behavioral outbursts,
[00:26:01.530]and those other two instances, basically, it was recommended
[00:26:06.880]by mom and dad that the deescalation time might impact
[00:26:11.520]and we needed to reschedule the procedure
[00:26:14.200]but that's pretty impressive to have so many cases
[00:26:18.690]at risk that we were able to manage successfully
[00:26:22.750]with a little extra care.
[00:26:25.340]Now, we are also working
[00:26:27.030]with our anesthesiologists in our cares area
[00:26:30.700]which is our pre- and post-procedural area.
[00:26:34.270]And we actually presented a key study
[00:26:36.540]at a national conference where we had a kiddo who was coming
[00:26:41.670]in for procedures and required pre-meds to get them back
[00:26:47.730]into the procedure room
[00:26:49.010]before anesthesia could be administered
[00:26:51.720]and before the procedure.
[00:26:53.590]But when we implemented the PATCH program
[00:26:56.980]we realized that we didn't need to use those pre-meds.
[00:27:02.040]And by being able to bring the patient back
[00:27:04.870]to the procedure room in a naturally calm state,
[00:27:09.930]when administering the anesthesia
[00:27:12.250]that recovery was that much easier.
[00:27:15.530]So we're actually seeing a tangible difference
[00:27:19.840]in how we're administering pre-meds.
[00:27:24.117]And this is in very, very early stages
[00:27:26.730]that we're beginning to look at this,
[00:27:28.200]but it's very promising.
[00:27:30.680]And then when it comes to quality care, again,
[00:27:34.070]staff are very enthusiastic
[00:27:36.490]about having this information and working
[00:27:38.760]with the parents and the families.
[00:27:40.840]We've actually started to create sensory kits
[00:27:44.380]that we're piloting in our emergency department
[00:27:47.070]that have sensory items that are available
[00:27:49.220]to all our staff to be able to give to kiddos
[00:27:52.840]during a waiting period
[00:27:55.100]if they didn't bring anything from home,
[00:27:57.330]so that we can again, manage and mitigate those triggers.
[00:28:02.660]And then when it comes to the patient and family experience
[00:28:09.120]we have had almost universal support
[00:28:13.880]from our parents and our families.
[00:28:16.690]In fact, we have a 96% offer to action ratio,
[00:28:23.150]which means 96% of the time where we have offered PATCH
[00:28:28.170]to the parents and explained the program,
[00:28:30.340]they wanted to participate in it.
[00:28:32.560]In those 4% that did not,
[00:28:35.080]they said their children were either high functioning
[00:28:38.700]or simply didn't have the issues
[00:28:40.410]in the healthcare environment.
[00:28:42.270]So we know that these PATCH Adaptive Care Plans
[00:28:46.480]looking at our impact metrics really do make a difference
[00:28:50.790]to the experience for the child.
[00:28:53.680]So let me walk through a case report,
[00:29:00.960]and I'm going to introduce you to Tommy.
[00:29:04.430]I need to get my notes here.
[00:29:10.010]So Tommy is an amalgamation of many cases.
[00:29:18.002]So this is for illustration purposes.
[00:29:20.600]And Tommy is six years old.
[00:29:22.530]He was diagnosed with autism spectrum disorder
[00:29:25.250]when he was four.
[00:29:26.310]He lives at home with mom and dad.
[00:29:28.540]He has an elopement risk.
[00:29:31.150]He has tried to escape from uncomfortable situations
[00:29:34.780]in the past.
[00:29:36.000]He has shown signs of aggression towards others
[00:29:40.630]when he is triggered or experiencing anxiety.
[00:29:46.870]And here's some information from his Adaptive Care Plan.
[00:29:52.770]His preferred name is Tommy.
[00:29:56.330]He prefers that you make eye contact
[00:29:58.730]and that you're cheery and upbeat with him.
[00:30:01.490]He likes trains and dinosaurs.
[00:30:03.990]He is minimally verbal
[00:30:05.690]and likes to use his communication device.
[00:30:10.250]And when it comes to receptive communication
[00:30:13.190]his mom told us that he liked to be spoken to slowly
[00:30:19.160]using as few words as possible,
[00:30:21.590]but actually engage in making eye contact
[00:30:24.360]with Tommy rather than engaging with mom.
[00:30:28.670]Healthcare considerations.
[00:30:30.190]When prepping for the procedure
[00:30:33.080]explain the procedure, demonstrate it on someone else,
[00:30:36.870]and offer him choices when it's possible.
[00:30:39.600]And again, it's not always possible
[00:30:41.580]but where it's possible and allow Tommy
[00:30:44.300]to make some decisions.
[00:30:46.220]When it comes to the exam or waiting area,
[00:30:50.820]sitting on a gurney is 50 50.
[00:30:52.890]Sometimes he will and sometimes he will put up a tantrum.
[00:30:59.120]Hospital gowns also just sort of depend
[00:31:01.760]on the day and things to avoid
[00:31:04.850]are blood pressure cuffs and needle pokes.
[00:31:07.670]Tommy is needle phobic.
[00:31:10.348](clears throat)
[00:31:12.680]His sensory aversions.
[00:31:14.440]No socks on the feet,
[00:31:17.530]When he starts flapping his hands, that means he's happy.
[00:31:20.920]He's excited.
[00:31:23.280]When he does start to show signs of agitation,
[00:31:26.640]the best thing to do is to talk to him,
[00:31:29.650]engage him in conversation.
[00:31:31.450]Talk about his interests.
[00:31:33.410]Give him some low stimulation environmental space,
[00:31:36.970]such as quiet, dim the lights,
[00:31:40.380]allow space and time with mom or dad,
[00:31:43.480]and let him participate in his own care.
[00:31:46.300]Again, Tommy really likes to be given choices,
[00:31:50.040]that interaction.
[00:31:52.990]Again, additional considerations,
[00:31:54.820]keeping Tommy informed what's next, no surprises.
[00:32:01.350]So our adaptive care strategies
[00:32:05.410]for Tommy was to enter the Adaptive Care Plan information
[00:32:10.740]in Epic and share this information with the team.
[00:32:14.260]On the day of the visit,
[00:32:15.620]it was important to have a little prep time
[00:32:19.180]to prepare the room with his preferred toys,
[00:32:22.510]lowering the lights, having the TV off,
[00:32:25.190]but having a movie on a device that's cued,
[00:32:28.020]his favorite movie, so it was just ready to go.
[00:32:31.070]And then really working with staff
[00:32:33.130]so that they understood the best way to interact with Tommy
[00:32:37.580]because interacting in a way other than his preference
[00:32:42.520]would definitely be anxiety producing.
[00:32:46.520]Discuss the strategy with mom
[00:32:48.730]about going back to the procedure room.
[00:32:51.100]She requested that she be allowed to go back
[00:32:54.190]if it was permissible to help keep Tommy calm.
[00:32:58.240]And then it was decided that Child Life
[00:33:01.080]would also accompany the patient back
[00:33:04.080]to the procedure room through out the induction.
[00:33:10.030]Our results were that Tommy was happy.
[00:33:18.210]The first thing we did in prepping that room
[00:33:21.370]we brought him back and we needed him to lay on the gurney.
[00:33:24.240]So we just put his favorite toys on the gurney.
[00:33:27.170]And after about two minutes of playing with the toys
[00:33:30.470]on the gurney, Tommy got up on the gurney himself
[00:33:34.410]and stayed there quietly with his toys with no reaction.
[00:33:39.940]There were no actions of deflecting care.
[00:33:45.040]He never tried to escape.
[00:33:47.780]And he actually started to show hand flapping,
[00:33:51.700]which again, for Tommy meant that he was happy and relaxed.
[00:33:56.720]He was able to go back.
[00:33:58.680]The procedure was successfully done.
[00:34:01.270]He emerged from the anesthesia with no reactions,
[00:34:06.080]and he was out the door with his mom
[00:34:09.830]with a very successful experience.
[00:34:12.210]And as you look at the Adaptive Care Plan
[00:34:14.490]and some of those triggers, again,
[00:34:17.390]you can imagine a different outcome
[00:34:20.220]if we hadn't been prepared
[00:34:22.150]and had not used that information.
[00:34:26.270]So you might say, this is great.
[00:34:30.130]This is a great program.
[00:34:33.034]It sounds wonderful for Children's,
[00:34:35.230]but how does the Adaptive Care Plan
[00:34:39.880]fit into these other services that we have,
[00:34:43.030]the IEP, the 504, the IHP, and then again
[00:34:47.570]that new kid on the block, the Adaptive Care Plan?
[00:34:51.530]So let me walk through each one
[00:34:57.780]separately so that we can look at the entire
[00:35:04.490]tools and resources in total.
[00:35:08.210]So first we'll begin with the IEP
[00:35:10.910]and I realized that this is a review for most of you.
[00:35:13.370]You could probably present this better, but for some of you
[00:35:17.810]maybe it's a refresher and for others
[00:35:19.980]maybe this is new information.
[00:35:21.470]So just hang with me through this.
[00:35:24.520]The IEP stands for Individualized Education Plan.
[00:35:28.520]It is used for special education services.
[00:35:32.490]This is federally mandated law,
[00:35:36.740]and the oversight is through the Department of Education.
[00:35:40.759]To be eligible a disability that impacts education services.
[00:35:48.093]And the preparation is by the IEP team.
[00:35:51.720]The services provided are special services
[00:35:54.470]and accommodations for children in school
[00:35:58.110]up through 12th grade or high school graduation or age 21.
[00:36:03.470]It is applied in elementary and secondary schools
[00:36:06.620]and it does not transfer to higher education.
[00:36:10.570]It is in a standardized format
[00:36:12.840]that is standardized by state.
[00:36:14.340]So the IEP in Nebraska will look different
[00:36:17.270]than it does in Iowa.
[00:36:21.560]The 504, section 504, is also federally mandated.
[00:36:27.170]But in this case, it falls under the Civil Rights Act.
[00:36:32.040]And it is the oversight
[00:36:34.920]is through the Office of Civil Rights.
[00:36:38.830]Eligibility is any disability
[00:36:41.940]that impacts a major life function.
[00:36:46.110]And that could be learning,
[00:36:50.580]hearing, walking, speaking, breathing,
[00:36:53.960]manual tasks, self care.
[00:36:58.020]The 504 allows for accommodations
[00:37:02.390]and modifications to be made to the environment in schools.
[00:37:07.260]This does transfer to college and also in the workplace.
[00:37:11.310]And it too is in a standardized format
[00:37:13.760]that is standardized by state.
[00:37:17.750]And then we have IHP, the Individual Health Plan.
[00:37:23.640]And I could see where there might be some confusion
[00:37:26.040]between the IHP and the Adaptive Care Plan.
[00:37:30.030]So we walked through the IHP.
[00:37:32.856]The IHP is not governed by law.
[00:37:38.350]The oversight is through the National Association
[00:37:41.410]of School Nurses.
[00:37:43.610]So the IHP is created by the school nurse
[00:37:48.010]for any child that has healthcare interventions
[00:37:52.310]or specific needs that need to occur during the school day.
[00:37:58.250]The services that are provided are
[00:38:01.360]healthcare management plans for school staff
[00:38:04.840]to provide necessary care,
[00:38:07.260]which may include other plans
[00:38:09.410]such as an emergency action plan,
[00:38:12.350]a diabetes medical management plan, asthma action plan.
[00:38:16.890]And these plans include clear instructions
[00:38:20.390]on who will provide the healthcare services,
[00:38:23.450]who will be trained, how they will be trained,
[00:38:26.650]and then a services evaluation plan to make sure
[00:38:29.570]that everything is working as it should.
[00:38:33.080]IHPs are applied in elementary and secondary schools.
[00:38:38.340]The format is not standardized.
[00:38:41.850]And the IHP does not follow the student to higher education.
[00:38:49.410]So specific medical needs and procedures
[00:38:53.610]that need to occur to maintain that child's health
[00:38:59.060]while at school.
[00:39:01.890]Now the Adaptive Care Plan.
[00:39:04.400]This is, again, this is the new kid on the block,
[00:39:09.290]is definitely not law.
[00:39:11.630]There is no oversight for an Adaptive Care Plan.
[00:39:15.160]And in fact, it's simply created individually
[00:39:18.640]by any hospital or healthcare facility that wishes to work
[00:39:24.420]on this collaboration with parents
[00:39:27.747]to improve the healthcare experience for their child.
[00:39:34.010]Now, speaking to the Children's Hospital program,
[00:39:37.050]specifically, eligibility is voluntary participation
[00:39:43.220]for any patient that's been diagnosed
[00:39:45.270]with autism spectrum disorder.
[00:39:48.000]We've limited the scope to autism at this point,
[00:39:51.470]but we do see expanding that circle to include children
[00:39:55.700]with any neurodevelopmental disability, anxiety,
[00:40:00.680]behavioral concerns, anything that might compromise
[00:40:05.370]the ability to provide
[00:40:08.970]a calm healthcare environment in which to achieve
[00:40:15.130]our healthcare outcomes.
[00:40:17.470]There are no age limits.
[00:40:19.220]So if you're a patient at Children's Hospital
[00:40:21.620]and the patient has autism spectrum disorder,
[00:40:26.430]be children, adolescents, young adults, even adults.
[00:40:31.310]So if you're a patient at Children's,
[00:40:33.740]you are eligible for the Adaptive Care Plan.
[00:40:37.460]The Adaptive Care Plan, again, is applied
[00:40:40.380]in hospitals, clinic, and the emergency department,
[00:40:43.420]as well as other ancillary healthcare settings.
[00:40:46.970]Again, a caveat is to remember
[00:40:50.150]'cause hopefully some of you are getting really excited
[00:40:52.210]about the potential of this program right now,
[00:40:56.050]it is in the hospital environment
[00:40:59.240]and with specific scheduled procedures
[00:41:02.320]as we build it out within the Children's enterprise
[00:41:06.260]over the next year.
[00:41:08.520]The format is not standardized
[00:41:10.940]among other healthcare organizations.
[00:41:14.050]It is standardized within Children's Hospital.
[00:41:17.300]So that is the Adaptive Care Plan.
[00:41:20.500]And that's basically how it fits in among these other plans.
[00:41:25.990]There's always a little bit of overlap,
[00:41:29.700]but you can see how they all fit together
[00:41:32.710]to provide really meaningful, helpful services
[00:41:36.440]for our children.
[00:41:40.010]So to steal a page from the What So What Now What protocol,
[00:41:46.750]the what is the Adaptive Care Plan and the so what by now
[00:41:52.120]I'm sure you'd be able to speak to is the impact
[00:41:55.340]on healthcare experience, outcomes, and safety.
[00:42:00.310]So now we get to the now what.
[00:42:02.700]What is the next thing beyond expanding the circle
[00:42:06.270]within the Children's enterprise?
[00:42:09.180]What else is on the horizon?
[00:42:10.810]How else can this be used?
[00:42:13.270]And to come up with one word,
[00:42:15.010]I would say it's it's advocacy,
[00:42:18.740]self advocacy for the patient.
[00:42:23.380]There are many different definitions of advocacy,
[00:42:26.360]but my intent in using the word is advocacy
[00:42:30.980]is to speak, write, and stand up for something or someone
[00:42:36.670]and to encourage support for someone.
[00:42:40.520]So using the Adaptive Care Plan model
[00:42:43.570]as a means to give voice to the patient
[00:42:48.030]not just at Children's Hospital,
[00:42:50.660]but anywhere that a children is being cared for,
[00:42:54.130]anywhere across the state or the region or the country.
[00:42:59.460]Like this is a plan, this is a process that we know works.
[00:43:04.250]So how can we take it to the next step?
[00:43:09.570]So, again, as an advocacy tool
[00:43:13.860]this is a Children's Hospital service.
[00:43:16.430]We are also building what we call the PATCH Playbook
[00:43:20.440]'cause we we've learned a lot over the last couple
[00:43:23.170]of years of what works and what doesn't work
[00:43:26.620]and really how to make this as effective as possible.
[00:43:31.440]And so we're putting all of that information
[00:43:34.360]into a how-to manual that we will happily willingly share
[00:43:39.590]with any hospital or facility that would like
[00:43:43.720]to create their version of an Adaptive Care Plan program.
[00:43:50.040]That is our mission.
[00:43:51.700]It's our charter, not to keep this to Children's,
[00:43:55.430]but to share as others have shared with us
[00:43:58.210]and continue to widen the circle
[00:44:00.570]so that eventually these plans are ubiquitous.
[00:44:04.660]They're just available wherever a child is going for care.
[00:44:09.710]And then we're also building a PATCH website
[00:44:15.090]for resources, resources for healthcare providers,
[00:44:18.410]resources for healthcare facilities,
[00:44:22.150]and resources for parents.
[00:44:24.434]At the time of this recording our website is being updated.
[00:44:28.890]So hopefully when you're watching this in April,
[00:44:31.380]when you go to the website,
[00:44:32.830]you will see our new and improved website.
[00:44:35.520]If not, I'll be able to give an update on that date
[00:44:38.110]on where we're at in that process
[00:44:40.510]because we would like to have this information again
[00:44:43.190]out there to be able to share.
[00:44:46.220]So that's what we're doing internally for advocacy,
[00:44:51.140]but now I'd like to step back a little bit
[00:44:54.460]and look at the Adaptive Care Plan model
[00:44:59.210]as a general communication and advocacy tool.
[00:45:04.810]So take away the healthcare perspective
[00:45:08.660]and looking at the communication preferences,
[00:45:12.550]the anxiety-inducing triggers, the calming mechanisms,
[00:45:18.830]the sensory differences.
[00:45:22.240]In the hands of other environments of other professionals,
[00:45:26.910]how could it be used to coordinate adaptive care strategies
[00:45:31.360]to determine the best way to approach a child,
[00:45:35.030]to communicate and develop rapport,
[00:45:37.130]to identify and manage safety risks, to mitigate triggers,
[00:45:41.120]to recognize early signs of agitation,
[00:45:43.840]to introduce coping and calming strategies
[00:45:46.770]because I will tell you out of the 500 Adaptive Care Plans
[00:45:50.170]that we have in our system, no two are alike.
[00:45:54.070]No two children are alike
[00:45:56.620]and no two children with autism are alike.
[00:46:00.830]So this concept of individualized information
[00:46:06.820]to share in other environments.
[00:46:09.610]So in the hands of parents to be able to give
[00:46:13.480]to a camp counselor or a teacher or a school nurse office
[00:46:20.120]when they're building the IHP
[00:46:22.390]so that they have this information,
[00:46:24.780]or a church group, or when traveling, or when seeking care
[00:46:29.300]at a facility that doesn't have this.
[00:46:31.840]For a parent to have this, to be able to explain what it is
[00:46:36.160]and then how that person, that they're giving it to
[00:46:40.380]can use it to engage more effectively with their child.
[00:46:45.700]I just think there's tremendous potential.
[00:46:48.780]And so with that, I'm going to do a quick summary
[00:46:56.960]and then we'll open this up for discussion
[00:46:59.750]so I can get some of your ideas and we can dialogue
[00:47:02.610]and I can answer your questions.
[00:47:04.860]So I'm an educator and you're always supposed
[00:47:09.840]to present your objectives in the beginning,
[00:47:11.360]but I thought, I'm gonna do this at the end
[00:47:14.210]because this is a way that we can do a checklist to see
[00:47:16.540]if we really effectively achieved our objectives.
[00:47:20.470]So hopefully at the end, now that we're through this,
[00:47:24.620]if asked you would be able to describe the challenges
[00:47:29.270]patients with autism spectrum disorder face
[00:47:31.870]in the healthcare environment;
[00:47:34.810]that you would be able to describe how healthcare workers
[00:47:38.110]can effectively partner with parents;
[00:47:43.030]that you would be able to explain the similarities
[00:47:45.580]and differences among Adaptive Care Plans
[00:47:48.940]and IEP, IHPs, and 504;
[00:47:52.820]and that you would be able to describe the potential,
[00:47:57.210]how parents and guardians and family caregivers
[00:48:01.460]could use the Adaptive Care Plan model to advocate
[00:48:05.250]for their children in other environments.
[00:48:10.900]So I'd like to close with this concept
[00:48:16.240]of Adaptive Care Plans
[00:48:18.580]and an advocacy tool in giving the voice
[00:48:22.570]to the child or the patient or the individual with autism.
[00:48:27.210]And going back to my experience in CCU,
[00:48:32.100]and I have 20 years of experience working in hospitals.
[00:48:36.620]I'm pretty unflappable,
[00:48:38.520]but when it's you or your family member,
[00:48:43.400]I remember being really quite scared
[00:48:47.650]and not being able to think clearly
[00:48:49.990]and not being able to maybe share and articulate my thoughts
[00:48:55.300]and in reflection how important it was
[00:48:58.760]that I had family there who would be able to act
[00:49:03.580]as my voice when I wasn't fully able to do so.
[00:49:08.740]And so that is really important for all of us.
[00:49:13.150]And if we could take this Adaptive Care Plan
[00:49:17.510]and use it in that way,
[00:49:20.050]I think we could really make a difference.
[00:49:22.030]So I thank you.
[00:49:24.968]I've got my contact information here,
[00:49:27.100]psullivan@childrensomaha.org.
[00:49:30.600]Any questions about PATCH or specifically direct to me,
[00:49:34.430]totally great or you can just email
[00:49:37.030]patch@childrensomaha.org.
[00:49:40.140]And if you don't write this website down,
[00:49:43.690]and you're interested in seeing our website,
[00:49:45.640]Google is our friend.
[00:49:47.030]Go to Google and Google and PATCH program
[00:49:49.520]at Children's Hospital Omaha
[00:49:51.080]and it will take you to our home page.
[00:49:53.290]So I thank you for your attention,
[00:49:55.410]and I'm going to stop sharing my screen
[00:50:00.210]and we will now stop the video
[00:50:03.950]and open it up for a chat and questions.
[00:50:06.680]So thank you.

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Partnering with Family Caregivers to Improve Healthcare Experiences for Children with Autism

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