53 – Severe Behaviors and Advocacy


Jackie’s presentation can be found here

Jackie on Facebook: What We Need Yesterday

Jaydne’s Wednesday Warrior.

Synaptic Plasticity – Dr. Richard Huganir, Ph.D.

Crisis in Crisis Care – National Council on Severe Autism

Amazon List

Behavior Analyst Certification Board

NCSA National Grassroots Networks

These are our introductory comments

Our presentation today is on ‘Severe Behaviors and Advocacy.’

I have the pleasure to introduce today’s speaker, Jackie Kancir.  Jackie is the parent to 18-year-old Jaydne who has SYNGAP1. Jackie is also the older sibling of an individual with disabilities. In high school she founded an organization to promote integration of disabled students and their neurotypical peers.

Jackie started blogging in 2008. Her background includes IEP advocacy for families of children with disabilities,  Development Director for a 501(c)3 veterans program, advocacy focus on crisis care, committee member on National Council on Severe Autism Policy, and she’s a Scholar of Partners in Policymaking by Tennessee Council on Developmental Disabilities. Jackie is also Editor of ‘What We Need Yesterday’ which can be accessed via Facebook.

A recorded version of this webinar will be available on the SRF website under Webinars on the Family menu.

By the end of this presentation you will have the opportunity to get the answers to your questions.  We’d love to hear from you. Please write your question in the Q&A.

Webinar Overview

Jackie Kancir is the parent of Jadyne, an 18 year-old with SYNGAP1. She starts the webinar by talking about severe behaviors in SYNGAP1, which include self-injury, aggression, elopement, and property destruction. There are very limited options (if any) to treat these behaviors, so Kancir gives tips to prepare. In Kancir’s experience, she has found that creating a crisis plan and using ABA (Applied Behavior Analysis) therapy are the best ways to manage severe behaviors. She provides an Amazon shopping list of helpful home modifications and technologies to prepare for these severe behaviors, and gives recommendations for items and activities to help SYNGAP1 patients with sensory regulation. Next, she shifts to acquiring benefits as a SYNGAP1 parent and the different long-term supportive services (LTSS) available. She closes the webinar by emphasizing ways to advocate for your children. Kancir talks about how it is incredibly important to know your rights; the 14th amendment protects the right to direct the care of your children, Olmstead v. L.C. protects the right to choose the setting, and EPSDT (early and periodic screening, diagnostic, and treatment services) ensures that funding is available to meet the medically necessary services for your child.


hello everyone and welcome today to today’s webinar my name is Olga Bothe and i’m a syngap parent and volunteer part of the team at SynGAP Research Fund our presentation today is on severe
behaviors and advocacy and I have the pleasure to introduce today’s speaker jackie kancir
jackie is the parent to 18 year old jayden who has SYNGAP1. jackie’s also the elder sibling of an individual with disabilities and in high school she founded
an organization to promote integration of disabled students with their neurotypical peers
jackie started blogging in 2008 and her background includes IEP advocacy for families of children
with disabilities she’s been developmental director for a 501(c)(3) veterans program
advocacy focus on crisis care she’s a committee member on National Council on Severe Autism policy
and she’s a scholar of partners in policy making by Tennessee council on developmental disabilities
Jackie is also the editor of what we need yesterday which can be accessed via Facebook a
recorded version of this webinar will be available on the SynGAP Research Fund website under webinars
which is on the family menu by the end of this presentation you will have the opportunity to get
to answer your questions we’d love to hear from you so please write your question in the q&a below
for those of you just joining us welcome and again our speaker is Jackie Kancir and her presentation
today is on severe behaviors and advocacy jackie it’s now my pleasure to turn things over to you
thank you so much Olga and thank you to SynGAP Research Fund for hosting this webinar today
because this information is something that just really isn’t out there so i’m really excited
to get it out there for you it’s my hope that this really gives some of the parents that may
be experiencing this are going to experience this and a pathway and a guide that i did not
have when we first started into it and also that maybe it sparked some interest in providers and
researchers and legislators to help resolve some of the gaps that we currently have in the system
so i have a lot of to cover today and so i’m just going to get right to get started
so as we get through this presentation let me put that back up to go through the presentation let me
show you we have some icons here if you see them you see the paper that just means that there’ll be
a resource provided if you want to dig into it further we don’t have time to dive as far into that today there is the green button is where you would have an opportunity to advocate on a
particular topic and then the gavel is something to pay attention to regarding your rights
so let’s talk about severe behaviors in SYNGAP1 what the etiology really is of these behaviors
SynGAP is regulates signaling in neurons and it actually serves as a mediate mediator of synaptic
plasticity and so as you see over here when we’re talking about synaptic plasticity this is kind of
the roadmap of that you have your synapse your neuron your neuronal circuitry and then behavior
when synaptic plasticity becomes dysregulated that results in pathological behaviors
this image is one that i’ve actually shared with some of jadyn’s provider so that they really get
an understanding of what is going on in her brain and on the left here we have our neurons normal
neurons that are very clear and crisp so that we can flow that information through and learn and
then on the right is syngap neurons this image is actually by dr refugeer and he is the director of
neuroscience at johns hopkins but he’s also the chair of the SRF scientific advisory board and he
did a webinar for us as well and i’ll provide his link to that if you’d like to dive into that so
when we’re talking about synaptic to circulation this is how i kind of break it down for
um the non-medical side of things so that we can kind of understand what’s going on with SYNGAP1
and the results in sensory dysregulation and so i’m thinking of like when you have a traffic light
out which is very similar for our syngapians then all this kind of chaos assumes and we have the one
guy that’s just going off into a tangent into a different lane and trying to push other people out
and sensory dysregulation you have the car there that is just sitting and overheating and steaming
we get emotional dysregulation we all know that guy that just decides to use the emergency lane
to speed on by and that would be seizures and then the one that decides to take a different
path and just ends up with his wheels being stuck in the mud and that would be perseverations
and perseverations are something that has become a real trigger for us
for behaviors and it’s just obsessive thoughts very extreme obsessive thoughts and so that
would be something if you’re seeing i would really recommend getting with a developmental behaviorist
to look into the possibility that severe behaviors may be coming down the road
and this is the video by Dr Rick Huganir that the SynGAP research fund did and so if you’d like to get more information on that you can see that there
emotional dysregulation is really a lot of it is stems from again that
the difficulty with learning not really even being able to distinguish the difference between
being disappointed and being mad so there is a lot of lack of awareness of what
moods and emotions even are of course we have a very difficult time learning adaptive strategies
so this makes it difficult to engage in goal directed behaviors
additionally other involuntary symptoms we have of course we know that our kids have a difficulty
filtering sensory information and that there is your sensory dysregulation we have communication
language disorders and uh decreased sensitivity to pain which actually becomes very dangerous and
notice i said involuntary and this is your first kind of first time we see the advocacy icon here
and this is really important because when you’re advocating it’s really important to
develop your narrative and we really need to try to destigmatize severe behaviors
it’s not that severe behaviors are new severe behaviors have spanned across developmental disabilities for as long as we’ve been tracking and the problem is that they are often treated
with this stigma as if they’re not a medical symptom which as we just see
they absolutely are and these are episodic medical events notice that i don’t call them
tantrums or meltdowns which i have no judgment how anybody chooses to use the language to describe
their story in any kind of way but personally i choose to use the word episode to further grind
in that this is a medical event and we understand episodic medical events like seizures and
that we need to track their intensity and their duration and their frequency when we’re talking about severe behaviors we need to do this very same thing if we’re going to get accurate data
involuntary means a lot of things and it means that there’s no reason for shame in this this is not a reflection of your child’s character in any way if this comes to
pass it’s not a moral defect or a parenting defect and it means you know if your grumpy
uncle joe told you you just need to get the paddle out or that you’re not being a disciplinarian
enough you can send him the video and show him that image from dr rokugen here and show that
none of those things are going to work that this is something that needs intensive specialized medical treatment severe behavior episodes also are not a criminal offense or a
domestic call so they are a medical event that requires emergency medical response
The Law
the law because this is a medical event protects our children from discrimination and disability
and this means also from medicaid administrators and you know i’ve heard things like from
particular mco directors and employees uh perhaps we should really take out the behaviors of her
person-centered support plan because it’s going to be really difficult to find anybody to to want to take that case and that in and of itself is a discrimination we would never say that to somebody
who had cerebral palsy or another condition that we have become more familiar with it does kind of
bring me reminiscent back into i’m dating myself but i’m old enough to remember when the aids
epidemic was coming out and i had family in medical care and there were nurses who did
not want to work with people who had hiv and that was just they were so comfortable with that level
of discrimination that they were open about talking about it like there wasn’t anything wrong with not wanting to work with the patient for particular symptoms they might have we’ve come
a really long way in disability awareness and acceptance but severe behaviors are still really
leaning on the side additionally we you are protected from expulsion from school i give you the code here to go ahead and look up this is regarding manifestation your child
can’t be expelled from school and they also have the right to go to school until they’re 21 and
you have a right to community based services which we will be covering in just a little bit
Parental Right
parental right the 14th amendment in the united states constitution says that parents have a
fundamental right to direct the care and upbringing and education of their children
and i hear this and i heard it when i was coming through when i was first started letting everyone know we were doing the webinar and people asked
specifically about their state of course i can’t possibly know the individual laws
and policies within every state but what we’re going to be discussing today is federal policy
and it is blanketed above and it supersedes any of the state policies that you might have
so what we know is severe behaviors in singapore are involuntary as a medical symptom our children
have protections under disability discrimination laws and the united states constitution says that we the parents are the ones with the fundamental right to direct their care
so now once upon a time a c switched with a t and i had a magical princess let’s introduce jaden
she is a natural-born princess super creative we have all kinds of art projects going at the house on the regular compassionate
and has a healer’s soul this is her baby doll after i had brain surgery she wanted him to take care of the baby too like mom had her eye covered the resident makeup artist
she has the award for the sweetest reader in school she’s super friendly and social
and she is fun and absolutely hilarious she really loves a good knock knock joe
jaden really was born for greatness and she knows it and you know it as soon as she walks into any room she just has a magnetism about her that we see with many of our singapians
jane’s 18 years old and she has a nonsense soft coat on the 13th exon of her six chromosome
so why not stop there and that that is really the dilemma that we’ve had with with
getting this information out again across multiple developmental disabilities is why
not stop there and if we stop there then we will not get the research that we need
we won’t get the policy changes that we need and this goes into even making sure that
we adjust the curriculum as providers are coming through their coursework in college that includes information on this because a lot of providers just don’t even know that
this subset of the population exists it is so stigmatized that oftentimes we hide it
because it is a medical symptom it isn’t something we need to feel any kind of shame about
severe behaviors don’t define her but they are a challenging symptom of singaporean that in the absence of appropriate sports and services repeatedly resulted in life-threatening crises
What are severe behaviors?
what are severe behaviors one final disclaimer before we get into them is that syngap1 is a spectrum so your child may or may not ever have this level of behaviors but
for me i would rather be over prepared than under-prepared as i was and so it is my hope that
if any of this happens you at least have a toolkit now on how to navigate this to keep everybody safe
severe behaviors include self-injury aggression allotment property destruction pica also would be included in that although we’re not going to discuss that part today
this is self-injury self-injury can include fighting head banging hitting scratching
gouging picking this is obviously jaden’s go-to is fighting herself which is done regularly
daily um and this is really mild in on the continuum of self-injury self-injury is the most
difficult behavior to modify and it is truly the most heartbreaking we don’t have enough research
yet into syngap one specific severe injury to know what how far this really goes but
we do have plenty of information on autism spectrum disorder and intellectual disability
to know what the potential of injury is i i’ve spoken to two different treatment centers this
this year alone already and they were they had just admitted two different patients
who had literally gouged out an eye during a self-interest behavior and so this is something
that we really need more more treatment for we need more ways of keeping our kids safe
aggression can be hitting punching kicking pulling hair pushing biting ripping clothes spitting
scratching so here you know are just a few of my minor injuries in the past couple months averages
but it has gotten much worse in the past we’re in a really good place right now
where we have a safety plan and that’s going to be something that i hope you guys develop
floatment our kids we’ve always known that they’re at risk of that this is a picture micah
shared in another one of the SRF presentations and and this happened so quickly it was just a
couple minutes and she was out the door and on her bike fortunately with her helmet on
speeding down a hill when she doesn’t know how to break her bike and so this is the result of that
property destruction um this is regular see a candle broken on the bottom right there flipping furniture tossing tossing
objects and huge holes in the walls i don’t even attempt to patch them anymore one day when she’s
completely stabilized maybe then but for now we patch them and she kicks holes in them again um
this is our 8 000 aac device which fortunately was under warranty so we were able to get that fixed
complications of traditional treatments most individual individuals with singaporean have drug resistant epilepsy
so our regular pharmaceutical options aren’t going to work for them synga protein plays a
critical role memory in learning so it’s very challenging to teach them adaptive skills
limited communication means obviously that cbt and embr are out
travel to specialists may be extremely dangerous if behaviors occur while the parent is driving i have been i have been subject to a spontaneous aggressive behavior from jayden while i was
driving down i-24 70 miles an hour and as i’m trying to fend her off and continue to drive
with her other hand she went to reach for her door to that the danger of her falling out of the car
driving at 70 miles an hour it was absolutely terrifying and panicked another time we had
to contact EMS and they had to block the street off after we went to an oral surgery appointment
because she didn’t want to leave the dentist she loves the doctor’s office and she went into such a behavior episode of the parking lot that we had to call EMS and so
just simple things like taking them to the doctor become a really really big challenge
department protocols are typically specific to psychiatric crises and that is very different than
developmental disorder crises so for example the the images i showed you of the self-injury
that to her is a soothing thing that’s why she does that um and but yet when you have self-injury
in an emergency department if they don’t have new protocols then they are stuck that they have
to go through their psychiatric protocols which means that self-injury is considered cause for
a psychiatric hold in suicidal risk evaluation you this means that this delays our children
from being able to be stabilized and brought out of a an environment that is very bright and very
loud and very overstimulating so the center for start services has created guidelines for that
i recommend if that’s something that you’re interested in contacting them so that you can
work to get your own emergency rooms with those new protocols there’s very limited options and
i called dozens of locations looking for treatment for jayden whether it was acute
treatment or residential treatment we knew that we were in crisis and every single one of them
um once they got to a point where they heard about that she has lennox gastault syndrome or
especially that she has SYNGAP1 they were out um so the only place that was willing to accept
admission was kennedy kriegers behavioral unit and it is around an 18-month average wait list
and that is just really unacceptable as a system that we can have children in such severe crises
that have no options for treatment it really is a void that we all need to address
Tips to prepare
we’d like more options more information on the crisis in crisis care i actually hosted a webinar just a couple months ago with national council on severe autism and we brought in some really
great speakers on this topic they do a really good job of sharing about that so you can look
more into that there so here is tips to prepare for this and again whether or not you see these
behaviors yet doesn’t matter you can still do these things they i believe they would improve overall quality of life anyways um but additionally it’s just that are safe to be sorry
first thing is crisis planning and you guys can do this today you can start it today it is for me i just use a google drive document so that i can easily share it
between providers on the fly as i need to it’s a crisis plan and you can come back to this we
will have the handouts i’m not going to read through it all we’ll have the handouts and this will be recorded you can come back to it notice i also say determinate police officers
in the community have crisis intervention training and this is really important again
you don’t want to end up in a situation where you need to call 911 and the responding officers
are not trained in this and treat it as a domestic incident or a criminal assault
and so find out if they have it and if they don’t you can advocate that they do our state
our department of intellectual and developmental disability is offering this training to any
departments that would like to have it and so that might be a place to start with your own state
therapies to ameliorate severe behaviors
physical therapy occupational speech therapy most of you probably already have these things and they
were will be things you want to continue because physical therapy is going to help reduce pain pain is oftentimes a trigger for behaviors especially pain that they can’t understand nor can they
communicate occupational therapy is huge because then we’re going to work on the sensory regulation
speech therapy is really big not just for speech and communication but for cognition and
i personally got to understand that after brain surgery i couldn’t do simple fourth grade math for
a while and it was actually speech therapy that helped me overcome my neurocognitive deficits
and so speech therapy really is a good tool for us to continue to help try to build those neural
pathways that are so disrupted from synthetic one ada therapy though takes the absolute cake
ABA Therapy
it is the heavy hitter it’ll be the keystone of all of your therapies and not just your
therapies but your other treatments that you apply for down the road because they’re data
monsters right like these guys they live and read data and that data we can use
for other treatments that we need to apply for and be able to justify medical necessity
Positive ABA outcomes
ada outcomes are the exact opposite of the earlier slide where we talked about emotional
dysregulation you know this is where we’re going to learn how to differentiate between
different emotions and coping strategies that our children can acquire and retain so ada is
really making some positive progress with jayden collaborate don’t eliminate and for us with ada
that really means that we understand that behavior is communication we don’t really want to stop
any type of communication do we especially when our children are still limited in it to begin with
but for jaden um we might be seeing her aggress at us but what does that behavior say
somebody might think that that says if she’s angry and maybe it does but it also for jaden if
she really is in need of some really deep pressure and say she doesn’t have unabated access to
a compression vest or a weighted blanket say she doesn’t have the verbal ability to self-advocate
and ask for that or doesn’t have visual cards to point that out what’s a really easy way to get
that pressure input is through an aggressive behavior and that could just be one reason
why she might have an aggressive behavior that has nothing to do with her actually being angry
and so when you work with a vcva they’re going to be able to help look at those antecedents and the
whole context of the picture to be able to find the true functions of behavior so that you can
develop true solutions for them this is a quote by dr greg hanley teach them when you know them you
see them you hear them and you’re there for them this is the first and crucial step and i really
love this quote i have just recently in the past couple months come on to him this is a
program that we’re doing with jaden now called my way and it’s amazing it’s it’s working so much
more than any other ABA therapy we’ve had in the past so i’m not saying it is the solution for
your children but if you’ve been trying multiple different options and they haven’t worked yet have
your bcba check this out do their own research and see if it might be a good fit for your child
here’s some poll results we put up a poll we asked 35 of you responded how many weekly hours of aba
therapy are you getting and overwhelmingly we know that uh sin singapians are getting 20 more than 20
hours a week i’d be really interested to hear what that final number is like if you did answer more
than 20 hours a week you want to put into chat how many you did end up getting um there also is down
here others six percent and that is because there was some written in responses and one of them was
a concern regarding they were getting only five hours of bcba the other was 15 of RBT hours
and there was another uh written and answered as well but i wanted to give you guys this resource
and so this is the behavior analyst certification board and they actually have a certificate registry oh the other the other one was they were having they
were approved but having a hard time finding providers and so if you go to this website
this website will show you all about the varying credentials between an RBT a BCBA and a bcba
it will let you be able to find providers in your area and it also allows you if you have any kind
of funny feeling about your providers or you just want to check on them it will you can look them
up you can make sure that their licensing is current you can make you can see if they have any disciplinary actions against them or any pending actions against them and this is just a way to do
a fidelity check now myself personally jayden has just gotten the most amazing team of behavioral
providers across the board we’re now into our third set since moving to this particular town
and they just all have been ethics driven trauma informed people who really um they’re just
amazing at their jobs and so i have no personal concerns with hours but i understand that not all
are created equal and this is a really good resource to give you those answers
Home modifications and technology
home modifications and technology you’re not going to be able to afford to do all of these today
but these you can start piecemealing together prioritize what you can do right away oh that
i made an amazon shopping list it is not affiliate links or anything like that
i’ll put the link in at the end also it’s just so you don’t have to type in everything and search for all these things and um this is the first thing we use we use lexan
instead of plexiglas or other options we use lexian you can get it in different thicknesses
and sizes and readily available and we just stick it on with some industrial velcro tape she never
even knows it’s there and this is an additional layer of protection to prevent glass break
which could result in obviously injuries or falling out a window
padded walls these are custom padded walls a team out of her home modification budget but
if you can’t do something like this and you do want to reinforce your walls you can use
lexian again or chipboard and then get some gym mats and it’ll be a temporary solution for me the issue isn’t even the walls again a property i
don’t care as much about i care about her and her foot has been injured she has nerve damage
um because of kicking the wall so much so if you can pad those to make it a little less injurious
smart home devices it doesn’t matter to me whether you use alexa or google i i have
alexa just because i had it i think before google came out the important thing is to find something that you can voice activate your home you are not going to always have your phone with you
but you may need to call for help or activate another device something from another room
some kind of device smart locks and door reinforcers we in every single room of my
house except for her bedroom or her bathroom i have some type of coated or fingerprinted
or bluetooth lock and i also have these door plate reinforcers and this is because if somebody tries
to kick a door in the door is shut in the middle of the door but they’re kicking down here and
they can kick that door in from the bottom these door plate reinforcers prevent that from happening and they are very cheap on amazon to be able to make sure you have that extra layer of security
home security system again i don’t know about the other ones they may offer discounts
i use vivint but they do offer a discount for families that have developmental disabilities i
particularly like that they have glass break sensors and they tell me which if something opens
a door or a window it doesn’t just give me an alarm it tells me which one and from
brain surgery i have single-sided deafness i have no sense of direction so that allows me to immediately go to where i actually need to go to it’ll say master bedroom window open
and i know to go to the source of the issue
smart outlets prior to getting these i was having to go into the garage at night and shut the breaker off and so that if she got up and she wouldn’t turn the stove on or get
try to turn the kitchenaid mixer on but now with smart locks you can just deactivate outlets as
you need to from your phone so these ones you actually install if you’re not comfortable with
those you could use the plug-in kind um but again that’s not going to be as secure because
the electricity is still going to be to the outlet and if you feel like your child would know to replug that into the actual outlet it’s better to go with these kind
smart home cameras so i have five and they’re positioned through all areas of common areas of the house no bedrooms or bathrooms and this is how all this works in
coordination so this is during a behavior you see here tables flipped over bottom right of
the screen there is my bedroom door i have backed myself into that room and while she
was coming at me i have the plate on the bottom that i talked about so she can’t kick the door in
i have already called for crisis support at this point but i i have safe distance and a barrier
between me and her i’m also then watching on the cameras to make sure that she is safe if you i
don’t know if you remember in the beginning with property destruction i showed you a broken candle that would be a situation where i come back out of the room because at that point then there’s
a risk to her being cut and so that’s why i need to have some a visual of her while i’m
not in there but also keep myself safe and allow her to de-escalate out here it has two-way audio
i can continue to try to verbally de-escalate her and this is really a useful crisis situation
plan that we have had we have not had to call 9-1-1 since developing this crisis plan
sensory regulation i’m going to kind of fly through these because i’m sure most of you already know this but hypersensitive hyposensitive sensory avoidance sensory seeking right we know to
keep these tools available for our kids these are the various senses for jaden in particular
proprioceptive is the biggest issue of need for input synoptic dysregulation that we talked about
before will cause the sensory interpretation to vacillate so your kid might this morning be
um maybe fighting themselves and really needing that that intense tactile input and then
an hour later if you barely touch their skin they may react as if you threw something hot
on them you know and and not be able to feel any even light touch and so that is common we deal with these rapid cycling of hypo hypersensitive senses all the time
compression vests compression sheets weighted blankets weighted vests this compression sheet the blue one here they are like 20 25 on amazon and i don’t think we were able to get her to start
sleeping through the night till we bought one i i didn’t even know that they existed for like 17 years so they’re really great rice filled pads i made this one but they also sell them
and they give a little bit of weight so like this one i think it’s four and a half pounds
you put them in the microwave or the freezer so it gives that heat plus uh the way
she really likes them finds them calming visual charts and giving them options right allowing
them to self-advocate and self-suit so she wears this around her neck on on the left here she wears
just a necklace that have various options of what she might need right now maybe she needs
a hug maybe she wants to read a book whatever it might be but these are various adaptive strategies
for mood regulation that she knows about and she can just flip through and look through him herself
without us needing to verbally prompt her this is her sensory or not sensory room it’s just
kind of jaden’s area downstairs and this is where we have for her to go calm down or just watch her
tablet whatever she wants to use it for and you see she has different options of how she might be feeling and she can pair that with on the right hand side what can we do with those feelings
so oral chewies if you guys are a fan or if you haven’t tried them before i reached out to arc
and they gave us a discount code for you guys it’s srf webinar1 and it’ll be available
until april 15th so these are a couple of jaden’s favorites they’re super fun and
she likes going through the catalog with me and telling me she really wants all of them but um but again you know holes in the wall so so oral chewies an arc therapeutic noise
canceling headphones we very familiar with those you’ll have this in the handouts lots of different
options for appropriate acceptance activities we use a lot of things like baking we have a 30 pound medicine ball vacuuming a lot of your household chores will give that input as well
tactile activities shaving cream is probably one of her favorites it’s a dollar at the dollar tree and just spread it on table and let them have fun scorpions love to have
um baths and swimming and water play and that’s another really useful option so acquiring benefits
Acquiring benefits
epsdt this is probably the one i get asked the most about and it is the most important one
early and periodic screening diagnostic and treatment services so why such a mouthful is because it wasn’t actually its own law this is a section
written into the social security act with a lot of teeth and epsdt
the goal of it is the right care to the right child at the right time in the right setting
if your child is under 21 if they have medicaid chip the hcbs waiver or the katie bucket waiver
parts a or c part b doesn’t doesn’t qualify then yes they do have protections under epsdt
you don’t need to have a card for it or a letter saying that you’re eligible it’s again it’s not
its own separate entity it just automatically blankets over top of these insurances
if you’re a provider watching today i went ahead and made this flow chart keep it with you so that
you can kind of navigate through i get asked a lot is you know i’ve got this new patient do you
think that maybe they would apply for or qualify for it this is the road map to epsdt eligibility
aba therapy caps some states have them some don’t we talked about the importance of it we talked about the enormous amount that our children have and have a need for
but yet there’s these caps and some are based on finances some are based on age these will not
match up for what our kids needs are if you look some of these age limits
utah is age limit of 10 i that’s that’s incredible to me jayden didn’t even have this level of
behavior really turn on until she was 15. we always had behavior issues but not anything crisis
support so we wouldn’t even know yet the intensity of services we needed at some of these young ages
but with dpsdt a state’s normal caps on services even whether they normally offer them or not doesn’t matter
the only thing that matters at that point is medical necessity so this is really a big deal
Medical necessity recommendations
medical necessity recommendations this is for providers this is something you can print out and give to them this is the the recommendations i have just from experience of going through this of
what should be included in that original order you don’t need a special form for it your doctor’s just going to write the order just the same way they would any other time
but include this these extra details to try to prevent any kind of denials and delaying
the care that you might need this doesn’t have to go to a special department it just automatically
everything is the same it automatically goes through if they can improve medical necessity
but what if you are denied the only reason you should be denied is that the mco the managed
care organization or medicaid administrator doesn’t feel that you met medical necessity
limits so you still need to prove medical necessity and you have a few ways to do that you do care to peer review which is you know your doctor’s office calls the
insurance company and they can just have a conversation a lot of times that is how it’s resolved just finding out maybe they’re missing some piece of the information you can do an appeal
if you’re within your time limit usually 60 days we’ll check your letter and then if that’s denied
you also ask for administrative hearing and that will go before a judge who very much will be able
to look at all the pieces of the case and he will understand or she will understand epsdp
what if you’re approved but no providers available this is the land we sat in for a really long time
because i myself didn’t know about epsdt either or some of the other things they’re going to be talking about
state medicaid agencies have a responsibility to maintain an adequate provider network so you can
ask them to request a provider search you can also start to contact providers yourself and ask them
if they can do it if they can’t then you can ask them do they have a recommendation a phone number
for you to call somebody else who might you can ask them if they would do a single case agreement
just try not to get off the phone until you get one little piece for the next call a single case
agreement means they don’t have to be a network but they’re willing to work with your insurance company just for your case if they agree to that and your insurance company agrees to that
you’ve got you’ve got a provider even though it’s out of network um and also
wouldn’t out of state telehealth service work for you that’s another way we found services
workforce crises are due in large part to an inadequate compensation for these providers
so advocate with your legislators we this this is something we all should be doing whether our
children have severe behaviors or not we all need access to these services and this is just a really unpaid underpaid profession and so we are working on some legislation here in tennessee they
they have begun to increase wages for direct service providers but it’s it’s a beginning
step there are many more things we could be doing and really big deal advocate with your legislators
let’s get our providers paid many providers don’t even understand that this is going on and what i
was talking about earlier that this isn’t even part of their curriculum most times as they’re coming through their coursework so tell your story whatever is going on for your particular scapian
research it find out about it become the expert on your child and start telling your story because
there might be other providers that resonate with that and who knows it might become the absolute passion jaden’s had providers who after they’ve left her case
they’ve actually joined in with the council on developmental disabilities and begun advocating on particular issues that they saw while they were providing care for her
issues within the system that they decided they want to change them so tell your story
and when all else fails but most likely before partnering with other organizations and disability
groups and for myself i as Olga said in the beginning i sit on a couple committees for
the national council on severe autism and i also am a scholar with the council on developmental
disabilities their partners in policy making class there’s a disability coalition arc there’s
all kinds of different options and no these aren’t specific SYNGAP1 organizations but these are these
these organizations are fighting for change and policy in topics that do affect our syngapians so
absolutely fine whichever ones you like and just start getting involved join email lists
question is did you know about epsdt so state medicaid agencies are required
to inform all medicaid eligible individuals under 21 that epsdp services are available
but yet i don’t know that i’ve ever really started talking about this where people are like yeah i
know about that everybody says what is that i’ve never heard of it i don’t really know why that is
but yeah since the agencies are not telling people let’s work with these disability
organizations and start to develop some awareness campaigns to make sure other parents know
because we need to have informed parents if we’re going to be driving informed care
Treatment settings and choice
treatment settings and choices the last section here
so the cost of care is really high for our children and they need a lot of supports so we have
a variety of different options i do not judge any parent who has made any of these choices
we all have to make one of them right but any parent that has chosen a different choice than i
make i fully support them in their decision i want to give you what these options are so that you can
look into them this is a primer you won’t know everything about them when we’re done but these come out of waiver services and what we were talking about before but um
not just waiver services this is the long term supportive care options
when you are talking with your medicaid administrators or your legislators
regarding these services or any others and you start to hear any kind of pushback about funding
because they will tell you that funding is the issue the federal government has put their money
where their mouth is with fmap federal medicaid medical assistance package or percentage i’m sorry
and right now especially with the american rescue plan act it is really high and so for
tennessee every dollar that is actually spent on jayden’s care tennessee only has
to spend 18 cents of that and the rest of that is coming from the federal government and so the money is there but legislators a lot of times they don’t even know about this stuff
it’s not that they don’t care they don’t know because none of us can possibly know everything about every topic you might have a senator who was a car dealer who owned a car dealership or
you know another that was a farmer and another that might be a pharmacist so they know what
their niches are or what committees they sit in but make sure you know it know how the money’s
coming know what your numbers are research this within your own state so that you can be informed
when you go to advocate for certain things you do have the accurate data when you’re talking to them
Home and Community Based Services (HCBS)
the first model for long-term supportive services is home and community based services just referred to as hcbs commonly this is the particular model that i have chosen for
jaden again that doesn’t make my decision any better or worse than anybody else’s
in this particular model this means that she stays home with me and that i assume some of the burden of care for her i don’t receive 24 7 supports that she might receive in some of the other options
but i do receive supports out of the out of hcbs and this can include a lot of different
things such as the home modifications that i talked about with the maps on her wall
community integration supports independent living skills training so this is the one that
we chose some of these programs have parent caregiver pay i get asked that a lot too
but most of them don’t so just don’t even really worry too much about parent caregiver page it’s
not something that is widely done you can find out your own state waivers list at medicaid.gov
i don’t know why that some places some states switch these words these words and acronyms around
so sometimes it’s called community living supports and sometimes it’s called supported community
living but it’s the same thing either way but this is where we’re talking about growth homes and
the group home still was under the hcbs but one is sacked with employees that come through every
shift you know and the other is a cls family model home that’s not staffed with the changing shift
stop instead it’s not foster care because your child’s not under the state’s care but that’s the
best example i have to give of it where a family that is trained is caring for that particular
individual not a revolving staff and so that’s a cls family model when i went to my last surgery
in november this is the respite model we used for jaden she stayed with a nurse who could provide
her daily skilled nursing services and she stayed there for the week that i was gone in boston
Facility based care
facility-based care there are a variety of facility-based care it’s important to
note once you go into this side of it even if you have the waiver you will lose the waiver
um you you may be able to get it back after you come out but you can’t have both
so psychiatric residential treatment facility is a prtf they are 24/7. they’re
a non-hospital secure facility though but there are tons of therapies available on site
the the downside is i would just say do your research there are good ones and helpful ones
and then there are really dangerous ones truly so do your research with whatever option you have and
it’s important to note the reason i don’t judge fans for however they decide is because abuse and neglect can happen under any setting including parent homes including if the child is stays with
their family right that none of these settings are better than another or more risk reverse than the other but it’s important just to make sure we’re doing our research lake mary prtf in Kansas is
one that has been recommended to me many times by some professionals i know in the community
and so that was the one that i put just as an example here for you guys to check out
neuro behavioral units they’re these are specialized these are the cream of the crop when it comes into if you really need to treat and stabilize a major crisis that is ongoing
this is what you’re going to be looking for for somebody who is medically complex like our children are and have neurological disorders and possibly other physical conditions with these
aggressive and self-injurious behaviors this is and kennedy krieger is the example of that there
Intermediate Care Facilities for individuals with Intellectual Disability
intermediate care facilities and these are otherwise known as ics these are considered the
most comprehensive benefit of medicaid and they are usually around 8-15 but there’s really not
definitive guidance on on what they need to be what these are is the most frequently inspected these are the most regulated out of the
options and they have day programs and that might be vocational or it might be recreational but
the states cannot limit your access to an icf or an icf and this is something that i do here
as an issue coming up repeatedly through the advocacy circuit his parents are being told
you know they they feel that an icf might be the best for their child who has a high level of
support they don’t feel that they personally can manage the behaviors at home anymore on their own
they don’t feel like a group home would be a high enough level of support and they want their child to be in an icf and yet they’re being told by mcos that icfs are all bad or they they’ve shut
them all down or i hear a lot of different things but the law is that they may not limit your access
to an icf or make it subject to waiting lists but they are doing that as well not waiting lists
what they’re doing is they’re housing individuals for months on end in ers with nowhere to go
because we have shut down many of these ics there’s very limited numbers of them left in
the country and so we have children who are teenagers and under months on end who have
severe challenging behaviors neurocognitive issues and they are sitting in an er room
so that is why this is such an important topic that we cannot afford any longer not to talk about
this is the expenditures on HCBS and this is kind of going to give you this is actually
an older this is from 2019 i couldn’t find a more recent one but i would actually say
this has changed a little bit i know specifically for Tennessee but this will give you an idea of how difficult or hard it might be in your state if you do get to a point you feel
that an icf is is a factor it’s going to be really hard in states that are green here
they are very anti all icfs and they don’t they don’t feel that there is a reason for it even
though they do still have to provide it and um but if you have a state where you’re in the light blue
you’re gonna have a really difficult time most likely getting hcbs services
and this is kind of the problem we see right because none of our kids are the same and none of the parents situations are the same and what’s really important is that we have choice
and that we’re able to individualize the treatment options per each child’s choice
and that choice comes out of olmsted so in olmstead in 1999 his court case and it came from lois curtis and not elaine wilson these two
have become like my life heroes because everything that i do today really stems from this case these
are two women who are in georgia and they needed they needed psychiatric treatment and
checked voluntarily checked themselves into the hospital they were stabilized and they went home
and at home they didn’t have the care that they needed so they had to check themselves back into the hospital they were stabilized they went home so this went on until they ended up having to stay
at the hospital for years their providers didn’t feel they needed to be there their providers felt
that they would be able to function in the community and at home if they just had the supports that they needed but they couldn’t find them they couldn’t get the supports they needed
so the only place for them to get the care was to reside in the psychiatric hospital
in the united states supreme court issued that this was a violation of their title ii
that um it was a discrimination to force them to reside solely with other disabled individuals
and it is segregation so if your choice is to keep your children at home or into one of the community
group homes then this is really important information for you here where people with
disabilities must receive the least restrictive most integrated setting appropriate to their needs
right you cannot be forced to have your child go to an icf i personally just fought this
battle with my own state that jaden’s choice is very clear she wants home and she wants mom
she doesn’t communicate a whole lot to us but she is very clear about those things so i do not want jaden where any anywhere else therefore i fought to make sure she has the services at home
i did use olmstead as the argument for that as well as use dpsdt to cover the benefits
of the level service we need it is unusual to have the level of services that we have
we have 112 hours a week of ABA in addition to 56 hours a week of cna care in-home otp in speech
but that’s because we have a child well now an adult young woman who spent four years in crisis
allowing these behaviors to exacerbate to the point where she required hospitalization and none
was available so now we need a really intensive facility level care to be provided for her
and that’s being done in the home and that’s her choices setting until we can stabilize her
so being forced to live solely with other disabled individuals as i said that is described that is defined as segregation you know instead if your choice is to keep your children at home if
someone is in a facility or risk of being placed in one because of lack of services or providers
which was the case with my daughter for so many years that is a violation of olmstead that person is being forced into segregation
that is wrong and someone must be held responsible and that’s from disability rights north carolina
when your choice is facility care and we’re wrapping up here in just a minute we emphasize
that nothing in the ada or its implementing regulations condones termination of institutional
settings for persons unable to handle or benefit from community settings this is straight from the
original olmsted decision they are not condoning that we close these institutions nor is there any
federal requirement that community-based treatment be imposed on patients who do not desire it
owms said very clearly intended choice it would be unreasonable and this is justice kennedy’s quote
during his concurring opinion of olmsted it would be unreasonable it would be a tragic event then
were the american with disabilities act of 1990 to be interpreted so that states had some incentive
for fear of litigation to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision and so it
clearly was not the intent of the justices to make the pendulum shift to one side or the other
they believed that we should have choices setting
so the choice is yours because the 14th amendment protects your right to direct the care for your
child and olmstead protects the right of choices setting an epsdt is there to ensure that funding
is available to meet the medically necessary services that’s kind of all i got for you guys
today there’s a reference page i will put on the i’ll give Olga the handouts so you guys
have those and this is the result of the services jaden has been isolated for a couple of years now
without appropriate sports and now this is what it looks like we’re doing outings again we have tons of help we have multiple behavior staff and a CNA with us when we go out
and she’s getting to go to the store in the parks and we’re really getting back to some
normal life now that we got the services so i hope something in here has helped you guys thanks
thank you jackie that was wonderful absolutely incredible information
we’re going to move on to the questions and answers we have a few here and let’s see
i have a question that’s just come to mind on the aba and i see the state limits um is
that something that’s state limit for insurance or is that outside of the federal legislation
um excuse me let me pull up go back here to the reference list i’ll pull it up for you
what was your reference list number on that that way um you had some numbers some limitations for
on different sciences and insurance states such as is that what it was yeah i didn’t know if
yeah um that’s hard and fast yeah a question you can answer uh pertaining to if you were able to
obtain additional benefits through the federal i’m sorry can you repeat that oh if if you were
able to um obtain additional hours outside of the state what the state mandates yes yes that’s just
very interesting absolutely yeah it doesn’t matter what they’re what they’re what their limits are yeah it doesn’t matter what what matters is what so the i lost hour if i have so many different
pictures there you guys are and so what matters is is it allowable under federal medicaid
so for example experimental drug treatments aren’t something that federal medical medicaid covers
but federal medicaid doesn’t have caps on abn so that’s where if it’s something that federal
medicaid covers it doesn’t matter what the state limitations are we normally do give states the
options to set whatever limits they want determine which services they’re going to cover or not and
how they’re going to spend those dollars but with epsdt it it falls back into federal category okay
good that’s it okay uh we have one question uh asking about how do you get insurance to approve
aba and they’re referring to tenncare which well 10k is my gig so um go ahead and give me
uh you can reach me on the facebook what we need yesterday and i can help you kind of work through
that specifically but with 10 care you need do need to use an autism diagnosis code with that
i would also use SYNGAP1 as the secondary mike and i actually were just talking about that before
the thing today and then you’re going to just need to prove medical necessity and it
really should not be hard with what we know about SYNGAP1 you’re gonna list any kind of
issues you might be having with these particular behaviors that i showed you today make sure that
you can try to track intensity duration frequency it doesn’t have to be perfect keep a tally sheet at home and over you know one two days just start marking down
how many times did you see these particular things was it a lot and start giving this to your providers to say look here’s here’s one i’m experiencing at home and i need some help in here
they’ll order an evaluation and once the bcba comes out to do an assessment the bcba will be who
submits the treatment plan for how many hours that you’re requesting okay and we have somebody
asking if you had to choose between cls and cls fm which would you choose and why cls okay um i am
i i just am so cynical i want to make sure there’s as many eyeballs on my daughter as possible and i
feel like if somebody is just there by themselves then that leaves a lot more opportunity for
for things to occur without there being that accountability whereas if you have staff coming in and out although you are dealing with staff turnover and things like that um i think it would
give her continuity of a relationship more if she was in a family model home but uh i just feel for
safety purposes i would probably go cls but yeah yeah hardcore hard hard decisions all around
yeah and also uh they’re asking about the law similar to olmsted that applies to schools
okay students being forced into special day schools because they are in crisis at schools of zone without adequate supports so in the beginning i posted the
manifestation law on there so the schools cannot remove your child for any longer than 45 days they
they can do 10 days initially and they could do up to 45 days but if you can prove that these
behaviors that that that became the issue are a source of this of the disability is the source
of those behaviors then they have just those 45 days to figure out how they’re going to manage it
right so my suggestion would be if you’ve gotten to that point you’re already in a day program
i’d certainly contact your disability rights network in your state or step or arc or someone
that has disability education advocates available sometimes called disability education mentors now
find one of them to work and partner with you but you want to have a functional behavior analysis
with school you want to have a behavior intervention plan attached to your iep and you want to make sure that you understand their rights under manifestation
and the final question is walking is through the process for requesting services through pe
epsdt would that be disability rights or would that be a different requesting services
through the ep sdt where the state is not fulfilling oh if they’re not
um then contact one of the justice centers with your state or yes you can i think maybe disability
rights north carolina has picked up a couple cases some states their disability rights network is
kind of focusing on education are focusing on the seclusion issue and segregation issue surrounding
Olmstead um but yeah i would contact either your justice center or your disability rights network
there is a lot of phone calls when when you’re advocating and many of them are not fruitful
many of them kind of send you on what feels like a wild goose chase but just keep calling from one to the next until you find that person that will help and take that that on but yes uh epsdt if you
feel you’re covered and they’re giving you caps or denials like that fight it hard i know i know
what it’s like to be there i was there a while and uh we have teresa asking if any additional supports for adults over and beyond hcbs or family
cila so that that is uh not my niche yet and it is terrifying to me because
epsdp only covers until 21. the day she turns 21 she falls off a cliff of services she no longer
has this blanket of protection and it took us so long just to even know that it existed so
uh you know that’s one of the reasons i wanted to share this today so you can get as many services as you can while you can get them but after 21 you do keep hcbs
in fact actually hcvs services depending on your state may even increase once you’re 21. um
but yeah you lose h you lose hcvi or i’m sorry you lose epsdt but you do keep hcbs if you have that
thank you jackie this finalizes our presentation for day it’s a wonderful wonderful amount of
research on your behalf and we really appreciate you doing this for SRF today thank you so much bye thank you