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Understanding Intellectual Disability Definitions, Intervention, and Resources — Transcript

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0:11okay well good afternoon everybody thank
0:17you for coming or joining us for this
0:21webinar my name is dr. Anna Merrill I am
0:26a psychologist at children's resource
0:29group and we're going to be sharing some
0:32information today about intellectual
0:36disability so the title of this
0:39presentation is understanding
0:41intellectual disability definitions
0:44intervention and resources there are
0:48handouts of this PowerPoint that have
0:51been uploaded to the GoToWebinar so feel
0:56free to download those as well as a
0:58reference and we will go ahead and get
1:02started
1:08okay so the outline for what we're going
1:12to be covering today we're gonna start
1:14with talking about what is intelligence
1:18so that we really have an understanding
1:20of what that word means and how that
1:23relates to the diagnosis of intellectual
1:27disability then we're going to talk
1:29about what is an intellectual disability
1:32we're gonna walk through how its defined
1:35and also how its typically diagnosed
1:40including talking about what a
1:41psychological evaluation will look like
1:45we're also going to talk about how can
1:48we help people with intellectual
1:50disabilities thinking about intervention
1:53and other strategies that are important
1:57for families teachers or other providers
2:01working with individuals with an
2:03intellectual disability and then finally
2:06the last thing we'll be talking about
2:08today are some resources so we'll be
2:11reviewing
2:13what resources will be helpful for
2:15people to know about when they're
2:18working with this population and while
2:21that will not be an exhaustive list of
2:23everything there is to know I sure hope
2:25that that's a good start
2:26for anyone looking to gather more
2:28information about intellectual
2:30disability so let's start with this
2:35question of what is intelligence because
2:39there's often a lot of personal meaning
2:43that people might bring to that word
2:44what does it mean to be smart what does
2:47it mean to be intelligent but when we
2:49talk about intelligence um from the
2:53perspective of a psychologist for
2:55example we're actually talking about
2:57something pretty specific so there's
2:59actually different ways that we might
3:01think about intelligence
3:03the first way can be biological so
3:07everybody's given intelligence has some
3:11source of biology there's a limit that
3:15is set by your genetics and by your
3:18brain that determines level of
3:20functioning um and usually we think
3:24about that as kind of the the limit
3:27being that's the most that someone is
3:30going to be able to achieve based on
3:32their genetics their biology things like
3:35that on the right side of the screen
3:38you'll also see what we call social
3:41intelligence and social intelligence is
3:44when we think about intelligence across
3:47different environments different
3:49contexts and somebody's ability to
3:52perform and do what's required of them
3:55in these different environments for
3:57example some people might think of
3:59street smarts as a type of intelligence
4:01somebody who's really good at navigating
4:03the world around them that might be more
4:04of a social type of intelligence we also
4:07think of somebody's ability to perform
4:09well at work or somebody's ability to
4:12get good grades or have good academic
4:14achievement that's really more about
4:16intelligence in response to a specific
4:18environment if we think about how we can
4:22kind of combine these two types of
4:25intelligence biological and social
4:26intelligence
4:28the overlap that psychologists are
4:31trying to measure is what we call
4:35psychometric intelligence so
4:38psychometric intelligence is what's
4:39measured in a psychological evaluation
4:42through a standardized test so it's
4:45related to your biology it's influenced
4:47by the context and the culture but it's
4:50our best way to really measure
4:53intelligence and that is typically what
4:57we refer to as an IQ the score that
5:01comes from a psychological evaluation
5:03from participating in standardized
5:05testing so with this understanding of
5:09that there's a lot of different types of
5:12intelligence as psychologists we tend to
5:16look at intelligence this way
5:18our ability to reason abstractly to
5:23solve complex problems and to acquire
5:27new knowledge so if we really tried to
5:29boil it down this is kind of the
5:33concrete way that we try to think about
5:36when we think about what are we
5:38measuring when we measure intelligence
5:41psychometric intelligence or IQ in an
5:46individual when we're looking at their
5:49overall level of cognitive functioning
5:52so then what happens when these
5:56abilities are delayed that's when we
6:02start to think about this diagnosis of
6:05an intellectual disability so the
6:09definition of an intellectual disability
6:11is when we see that there are
6:14significant difficulties in two areas
6:17the first area is intellectual
6:21functioning so that's what I was just
6:23talking about those thinking learning
6:25reasoning and problem solving skills but
6:29there's also another area that we have
6:31to look at when we're considering a
6:33diagnosis of intellectual disability and
6:35that is what we call adaptive
6:37functioning an adaptive functioning
6:40is more related to some of maybe that
6:44social intelligence we talked about
6:46before the way I like to think about
6:48adaptive functioning is it is the actual
6:50application of somebody's intellectual
6:53functioning in their day to day life so
6:56we look at social skills we look at
6:59conceptual skills things like academic
7:01performance and we also look at
7:03practical skills like somebody's ability
7:06to get dressed in the morning for
7:09example or to have a bank account or
7:14something that is the actual application
7:16of a day to day functioning that helps
7:20them to get through the day so we have
7:23to see that there is difficulties in
7:26both of these areas when we are
7:29considering this diagnosis intellectual
7:33disability has been called other things
7:35in the past so for example the previous
7:38term for this diagnosis was mental
7:41retardation that term has since been
7:44replaced with in our new diagnostic
7:47manual the term intellectual disability
7:50but if an individual is familiar with
7:52this idea of mental retardation that is
7:55the same concept we've just changed the
7:57name in the diagnosis of intellectual
7:59disability the other thing to keep in
8:02mind is that an intellectual disability
8:05is a neurodevelopmental disability which
8:09means it comes from the way that the
8:12individuals brain has developed over
8:15time and as a result this disability
8:18needs to exist in childhood so it can't
8:22be something that is acquired for
8:24example later in life so if we think
8:27about somebody who's lost skills in
8:29their intellectual functioning or their
8:31adaptive functioning maybe because of an
8:33injury or because of an illness we
8:36typically would not think about that as
8:38a true intellectual disability someone
8:41who's receiving this diagnosis has had
8:44these difficulties since they were a
8:46child through their brain development
8:48through their neuro development over
8:50time
8:54so when we think about the distribution
8:58of any human skill not just intellectual
9:03functioning or cognitive functioning but
9:05any human skill we typically think about
9:08that there are those of us in the
9:10population that tend to perform in the
9:12average range and that's going to be the
9:15majority of people and then there's
9:17going to be those individuals who are
9:19high performance performers who have
9:21above-average skills in that area and
9:24then there's going to be those
9:25individuals that are low performers
9:27those that have more difficulty with
9:30that particular area so we applied this
9:32same concept when we think about
9:34intellectual functioning so the
9:38intellectual disability population is
9:41this population over here to the left
9:44they're the individuals the small group
9:48of the entire population who's
9:50performing on the lower end of the scale
9:54of intellectual functioning and then we
9:57might say the opposite end of this curve
10:01would represent really high performers
10:03individuals who we might call gifted for
10:06example but most people are going to
10:09fall in that average range so when we
10:14think about an actual IQ score we apply
10:18that to what we call the bell curve and
10:21the bell curve represents the population
10:24so most people are gonna fall in that
10:28average range which is why we see that
10:30the curve of the bell curve goes up
10:33because that's most people and then the
10:35tails of the curve are small because
10:37it's such a small percentage of the
10:38population so when we think about an IQ
10:42score we typically think about that 100
10:46is average and we consider the average
10:49range to usually be around a score of 85
10:53to 115 and if you look at this picture
10:55here you can see that about 68% of the
10:58population is going to have a score
11:00between 85 and 115 95% of the population
11:05is going to have a score between 70 and
11:08thirty so when we talk about
11:10intellectual disability we often use the
11:13cutoff of 70 or below when we're looking
11:17at an IQ score because that's falling
11:20within that less than 2% lower end of
11:24the population but I want to make a
11:27point about something so if the
11:29intellectual disability range is this
11:33bottom range all the way to the left
11:35it's really quite arbitrary that we have
11:38this cutoff of 70 when we think about an
11:40actual person so somebody who has an IQ
11:44score that's falling in what we call the
11:46borderline range which is that rein
11:48range just outside what we call the
11:52intellectual disability range so for
11:55example somebody whose overall IQ score
11:57perhaps is a 73 or a 76
12:00that individual may have some traits
12:03that are still going to be similar to an
12:06individual with an intellectual
12:08disability they might have a harder time
12:11learning information may have a lot of
12:13difficulty in school they might need a
12:15lot more reminders to get things done at
12:17home so we while we do have to make
12:20these cut-offs and how we think about a
12:23diagnosis it's important to understand
12:26that individuals who are falling in the
12:27borderline range may also have some
12:30difficulties that can be consistent with
12:32somebody with an intellectual disability
12:35so this is the piece of intellectual
12:39disability that includes looking at
12:41cognitive functioning or that IQ score
12:44that measures intelligence but as I
12:46mentioned before we also have to look at
12:49adaptive functioning and like I said
12:53adaptive functioning are the skills that
12:55are needed but to make it through just
12:58everyday life okay so when we think
13:01about conceptual adaptive functioning
13:04that often includes language and
13:07communication it includes our ability to
13:11read write do math so those academic
13:15skills tend to fall under that
13:16conceptual area our reasoning perhaps
13:20our memory our
13:21to hold on to information so all of that
13:24falls under this conceptual area of
13:27adaptive functioning and that's an area
13:29that we're going to want to look at when
13:30we're considering an intellectual
13:32disability as well as social functioning
13:36so somebody's interpersonal skills their
13:40ability to use language functionally or
13:43other forms of communication
13:44functionally are they able to build
13:47friendships with other people what does
13:51their play look like are they able to
13:53engage in those typical kinds of leisure
13:55skills do they have hobbies or
13:57extracurricular activities that they're
13:59involved in all of that falls under the
14:02social realm of adaptive functioning and
14:05then finally we have more practical
14:09adaptive functioning this is when we
14:12look at areas like personal care so
14:14somebody's ability to really get through
14:16that morning routine and then get up in
14:18the morning brush their teeth take a
14:20shower brush their hair how are we doing
14:25at a younger age with toileting for
14:27example so that's gonna be all part of
14:29practical abilities as well as just
14:31somebody's ability to stay organized
14:33maybe to turn in their homework
14:36assignments for example to know what
14:39their homework is that day other
14:42practical skills might include out in
14:45the community so an individual's ability
14:48to go to a store and make a purchase on
14:54their own it could be somebody's ability
14:57to know safety out in the environment so
15:01for example does somebody know that they
15:02should look both ways before they cross
15:04the street do they understand stranger
15:07danger as for an older individual do
15:11they know how to use an ATM to make a
15:16transaction right so when we think about
15:19adaptive functioning we're looking
15:21across all these different areas to get
15:23a better understanding of does this
15:25individual have the skills needed to
15:28make it through everyday life have they
15:30developed any of these independent
15:32living skills
15:35so when we talk about what does
15:39intellectual disability look like
15:41there's a lot of different things that
15:44we can think about
15:45so to start up at the top the first
15:48thing that we notice is that learning
15:50tends to be more concrete and in
15:54particular abstract concepts are going
15:57to be difficult so for example someone
16:00with an intellectual disability might do
16:03much better with rote learning learning
16:06by memorizing as opposed to having to
16:09think about things more abstractly so we
16:13might see that somebody does better in
16:15for example early elementary school type
16:19curriculum where we need to remember our
16:21ABCs or remember how to count but might
16:24have a harder time when we have to apply
16:27those skills to different situations for
16:29example now we need to read a passage
16:32think about what it means and answer a
16:34comprehension question that becomes much
16:37more abstract and can be much more
16:39difficult we also see that learning
16:44tends to be more active and not as
16:48passive meaning that those of us working
16:52with or around an individual with an
16:54intellectual disability tend to have to
16:57be more direct in our teaching have to
17:00be more purposeful because the
17:03individual with an intellectual
17:04disability is less likely to just pick
17:06up on something by watching or observing
17:09they're gonna have to really be taught
17:11what to do and probably repeatedly be
17:15taught what they need to do in any
17:17particular circumstance or with any
17:18particular skill we also see that
17:22individuals with an intellectual
17:24disability tend to have a limited use of
17:27strategies for learning or
17:30problem-solving and so if we only have
17:33so many different strategies that we can
17:35use for learning this is actually one of
17:38the things that tends to lead to more
17:40rigid behaviors more black-and-white
17:42thinking in an individual with an
17:45intellectual disability because they
17:47don't have as many different strategies
17:48that
17:49can go to to problem-solve so it's a lot
17:52easier if things are more predictable if
17:55they know what's coming next individuals
17:58with an intellectual disability often
18:00have a difficult time thinking ahead
18:03planning for the future because that's
18:06difficult we might see that they ask a
18:08lot of questions about what's coming
18:10next because it's harder for them to
18:13keep that organized they might not be
18:15able to think about what's coming in a
18:17week they might really only be able to
18:19think about what's coming later that day
18:21for example so because that's difficult
18:24sometimes those of us around an
18:26individual with an intellectual
18:27disability need to adjust how we talk
18:30about the future as well we also see
18:33that individuals with an intellectual
18:35disability tend to have slower
18:37processing and slower responding which
18:41means that once again we need to adjust
18:44and be patient so sometimes even though
18:48we've asked a question to someone they
18:51might need more time to think about it
18:53before responding and rather than just
18:55continuing to ask that same question we
18:57should give them a little bit of time to
18:59process that information and to then get
19:02their response out we also see that an
19:07individual with an intellectual
19:09disability often has a hard time with
19:12internal motivation and self-direction
19:14right so this is where we see that a lot
19:18of families will tell us they have to
19:21repeat themselves a lot a lot of
19:23teachers might say that they have to
19:25provide a lot more direction to get
19:27somebody through their day so for
19:30example even if somebody knows what
19:31comes next they might not have the self
19:34direction or internal motivation to
19:36really get up and get going so we might
19:39have to be providing a lot more
19:40prompting letting them know it's time to
19:43transition to something new and really
19:46getting them going and finally we might
19:49also see that individuals with an
19:51intellectual disability have a hard time
19:54generalizing things that they've learned
19:56that can be across different people or
19:59across different places and a lot of
20:02times what this
20:03looks like to an outside observer is
20:06that there's a lot of inconsistency
20:10because we have perhaps maybe a child
20:13who does really well with a certain
20:15skill when they're working with their
20:17mother but then when they're at home
20:19with another person at school perhaps
20:22they aren't as good at that skill in a
20:24different context with a different
20:26person in a different place and so then
20:28we can be confused about why is that the
20:30case but sometimes that can be because
20:32there's this lack of generalization so
20:34we might have to actually practice a
20:37skill across different people and across
20:40different places in order to really get
20:43to the point where we've mastered that
20:44skill so when we're looking for the
20:49kinds of difficulties that we can see in
20:51an individual with an intellectual
20:53disability these are the types of things
20:55that families and parents will report
20:57that teachers will see more other
21:01healthcare providers or professionals
21:03that are working with this individual I
21:07also want to make a point about the
21:10difference between an intellectual
21:12disability and a learning disability
21:14because a lot of times this can be a
21:17little bit confusing and there is really
21:20a difference especially from a
21:22psychologists perspective on what an
21:25intellectual disability is versus a
21:27learning disability so typically we
21:30think about a learning disability or
21:32what we might call a learning disorder
21:34or a learning difference as being
21:38difficulty in a specific academic area
21:42so a child with a learning disability
21:44might have a significant difficulty with
21:48reading for example which the other term
21:51for that might be dyslexia we might see
21:54that a child has a lot of difficulty
21:56with writing or what we might call
21:59dysgraphia or even with math which we
22:03might call dis calculator so a specific
22:06learning disorder is really talking
22:09about that difficulty that is specific
22:12to that area of learning and we
22:15typically measure
22:17that area of learning through academic
22:20achievement testing or standardized
22:23testing of that academic area whereas
22:25when we talk about an intellectual
22:27disability we're measuring overall
22:30functioning right that overall
22:33intellectual ability that adaptive
22:36functioning across all different areas
22:38and of course as we've discussed an
22:41individual with an intellectual
22:43disability may have difficulty with
22:46reading writing or math but we have to
22:50ask ourselves is it better explained by
22:53overall cognitive functioning overall IQ
22:57level for example that adaptive
23:00functioning being delayed or is it
23:03better explained by no this is actually
23:05just a discrete specific difficulty with
23:09reading for example writing or math so
23:13IQ testing is always going to be a part
23:16of how we look at an intellectual
23:18disability but for a learning disability
23:21we're really trying to zero in closely
23:23at the actual academic areas whether
23:26that's their standardized academic
23:28testing or also through looking at
23:30performance at school talking with
23:32teachers how are they doing on different
23:35state-based tests for example and that's
23:38going to give us more information about
23:39a learning disability and typically
23:42there's patterns that we would look for
23:44in a child's cognitive profile and how
23:48their IQ testing looks that are
23:50consistent with a specific learning
23:52disorder that is different than what we
23:55see in a child with an intellectual
23:57disability so even though those terms
24:00can sound really similar it's important
24:03to understand that there is a pretty
24:04significant difference between a child
24:07with an intellectual disability or a
24:09child with a learning disability so how
24:15do we figure out whether or not an
24:18intellectual disability really is the
24:20appropriate diagnosis so the best thing
24:24that we can do to really answer that
24:26question is the psychological evaluation
24:30psychological evaluation has many parts
24:32to it so it's going to involve some sort
24:36of administration of standardized
24:38testing that's going to give us that
24:40information about the level of
24:42functioning that's going to help us to
24:43make some decisions but it's also going
24:46to involve talking with the family
24:48talking with the individual talking with
24:53their parents or other caregivers who
24:56are spending a lot of time with that
24:57person usually if as part of a
25:01psychological evaluation that will
25:02involve either what we call an interview
25:04or an intake with the family as a whole
25:07to talk about what are the difficulties
25:09we're seeing at home at school in the
25:12community um
25:13what kinds of behavioral challenges
25:15might we have what are the learning
25:17challenges specifically so we talk about
25:19that and get to know the individual we
25:22also tend to use questionnaires that can
25:25be completed by a parent a caregiver
25:29teachers who spend time with the child
25:32and can tell us more about what types of
25:34behaviors are they seeing what things
25:37tend to be difficult how much help do
25:39they need across different areas and
25:41then we can compare how these different
25:44individuals respond on these
25:46questionnaires to give us more
25:48information and more data and of course
25:51behavioral observations are another
25:53really important part of any
25:54psychological evaluation so as an
25:57individual is participating in an
26:00interview or participating in
26:02standardized testing we're observing
26:04their behavior to see how they respond
26:06across these different contexts what
26:08their language is like their mood all
26:11sorts of different things that are going
26:13to be a part of this comprehensive
26:15picture that we try to create through a
26:18psychological evaluation so for example
26:22in our office here at Children's
26:23Resource Group an individual comes in
26:25for a psychological evaluation they
26:28usually are going to participate in an
26:29interview with the psychologist first or
26:31that intake appointment and then they
26:33come back for some testing where we
26:35complete the standardized testing we
26:37might have family members or others
26:39complete questionnaires and we do those
26:40behavioral observations so
26:44let's talk about what that measurement
26:47of the cognitive functioning really
26:49looks like so as i've mentioned before
26:51we're typically measuring cognitive
26:53functioning or intellectual functioning
26:55through an IQ test and there are many
26:59different IQ tests out there and i've
27:02listed a few here on the PowerPoint just
27:04so that somebody who's looking for a
27:06reference of what those letters might
27:09look like when we are talking about the
27:11names of these tests there are several
27:14different tests that can be used the big
27:17thing is that um the individual who's
27:20doing the testing is gonna make a choice
27:22about which tests they would like to use
27:24and different things they might consider
27:26would be the age of the individual so
27:30for example that first bullet point
27:32lists several tests that are all from
27:35the Wechsler family of tests but the
27:38WIPP see that first one listed that's in
27:41the picture here actually is the test
27:43that has been developed to give with
27:45children who are younger who are more
27:46preschool aged versus the whisk is for
27:50six years old up through fifteen or
27:54sixteen years old so that's kind of
27:56middle childhood versus the lace is an
27:59IQ test that's developed for adults so
28:02part of this is going to be that the
28:03individual is going to choose a test
28:05based on the child's age but there's
28:07other factors that might go into why
28:09someone might choose one test or another
28:11such as the length of the test the
28:13attention level of the individual
28:15whether they want to do things that are
28:16more hands-on versus more verbal so all
28:19of that's going to be factored in into
28:21choosing one of these tests but the
28:23score that comes from any individual IQ
28:26test can be compared to the score from
28:29any other IQ test because they're all
28:31measured using the same standardized
28:33scoring process and typically an IQ test
28:37is going to be administered by a trained
28:39psychologist in a one-on-one setting
28:43usually that's going to be just the
28:45psychologist and the individual being
28:47tested occasionally if a child needs
28:49support from a parent or is having a
28:51hard time separating then there might be
28:53a parent in the room as well but
28:55typically this is going to be a
28:56one-on-one setting I
28:58dealing with not too many distractions
28:59where they can really try to do their
29:01best work and cognitive functioning
29:04through an IQ test can be measured in a
29:07clinical setting like children's
29:09resource group or a hospital or other
29:10private practices that you might go to
29:12for a psychological evaluation or it can
29:15be measured in a school setting by a
29:16school psychologist and this is often
29:19part of the process of developing
29:22eligibility decisions for special
29:24education completing an IQ test as a
29:27piece of that evaluation as well and
29:28there's no difference between the type
29:30of IQ testing that might be done in a
29:33school setting or in a clinical setting
29:34we're all trained to use the same types
29:37of instruments so the other thing that
29:40we're measuring is adaptive functioning
29:43an adaptive functioning can be a little
29:45bit harder to measure but remember it's
29:47the other essential piece when we talk
29:49about looking at whether or not an
29:52intellectual disability is appropriate
29:54so starting the information that we're
29:56gathering or about somebody's adaptive
29:58functioning is coming through the
30:00interview when we're talking with the
30:02family or the teachers about how
30:04somebody's functioning across different
30:06areas but we also typically tend to use
30:09some sort of questionnaire and on a
30:11questionnaire usually what's happening
30:14is a parent a caregiver or a teacher is
30:17answering questions about lots of
30:20different areas of functioning and their
30:22rating does the individual not have this
30:25skill yet do they have the skill but
30:27they need support or reminders to
30:29complete the skill are they completely
30:31independent on that skill and there's
30:35two examples listed here of different
30:38questionnaires that exist
30:39one is called the Vineland one is called
30:42the a bass but they're both pretty
30:44similar and typically these types of
30:47questionnaires can be pretty long but
30:49they're really important because they
30:51give us really good information about we
30:55can look at how the individual responds
30:57to how independent the person is across
31:00these different areas and then we can
31:02compare that to other people their age
31:03and then we get a sense of are these
31:06skills delayed and if they are delayed
31:08how much are they delayed
31:12so once we've completed all of the
31:15pieces of the psychological evaluation
31:17what we tend to do is look across all of
31:20the information that we've gathered the
31:22information from the standardized
31:24testing the interview interview with the
31:26family with the individual what we've
31:28observed questionnaires we've have
31:31completed we take all of that into
31:32consideration to determine whether or
31:34not that diagnosis of intellectual
31:36disability makes sense and then the
31:41other piece of information that we're
31:43going to consider is the level of the
31:46intellectual disability so this becomes
31:49important because the level of the
31:52intellectual disability often drives
31:54what services are going to be
31:56appropriate when we think about planning
31:58for the future what's going to be needed
32:00so it's really important that
32:03individuals are also paying attention to
32:06the level of the intellectual disability
32:08so this chart here is in by no way an
32:12absolute resource but it really gives us
32:15a sense of how severity level is
32:17determined so the first level of
32:20intellectual disability would be what we
32:22call a mild intellectual disability and
32:26individuals with a mild intellectual
32:28disability may take longer to learn
32:33skills but they typically are for
32:36example learning to talk have the
32:39ability to learn some self-care skills
32:40they are able to learn at school but
32:44they perhaps require a smaller group
32:47setting lots more repetition to learn
32:50skills but they typically are able to
32:53acquire some academic skills sometimes
32:57individuals with a mild intellectual
32:59disability are able as adults to live
33:01independently on their own with minimal
33:04support from others sometimes that might
33:08not be the case but a lot of times if we
33:11do our best to really prepare and
33:13practice the skills they are able to do
33:15that so the IQ score for an individual
33:19with a mild intellectual disability is
33:21typically going to fall around the range
33:24of 50
33:25- that 69 or 70 range and we typically
33:30would think about that as an adult this
33:33individual may be functioning somewhere
33:36in the range of around a 9 to 12 year
33:38old what we would consider in typical
33:40development so that's the level of
33:43intellectual intellectual disability
33:45that we call mild the next level would
33:47be what we call a moderate intellectual
33:50disability in an individual with a
33:53moderate intellectual disability maybe
33:55slower at their acquisition of language
33:58um they're typically as adults gonna
34:02require more support in the community
34:05with a lot of work they may be able to
34:07learn for example how to read or to
34:09master some basic reading skills but
34:12there's a little bit more of a delay
34:15than we see in the mild range so this is
34:18typically individuals whose IQs are
34:20scoring around the 35 to 50 range and we
34:26typically think that as an adult
34:28these individuals are functioning
34:30similar to a child between 6 to 9 years
34:34of age the other levels of intellectual
34:38disability are what we call the severe
34:40and profound range and when we talk
34:43about individuals who are falling into
34:45this level of intellectual disability
34:48these are individuals that are going to
34:51need significant support from their
34:53environment for the rest of their life
34:55they're going to need assistance with
34:57self-care there are going to have a hard
35:00time understanding safety an individual
35:04may need support with mobility for
35:07example at this level they may be in a
35:09wheelchair they may not have the ability
35:11to communicate very functionally so
35:16these types of individuals often are
35:18going to require a high level of support
35:21from their environment and so when we
35:25talk about an individual with a severe
35:26or profound intellectual disability we
35:30have to think about making sure that we
35:32are doing everything we can to keep them
35:34safe and to help them to have a high
35:37quality of life
35:39despite their difficulties with a lot of
35:42the daily living tasks that are they're
35:46going to need support from those around
35:47them to get through their day so one of
35:52the most common questions that will come
35:55up when for example a child is diagnosed
35:59with an intellectual disability as that
36:02families might want to know why why did
36:05this happen to my child and in some
36:09cases we might have some understanding
36:12about what could be reasoning for why an
36:15individual has developed an intellectual
36:17disability but sometimes we might not so
36:20in about two-thirds of cases of
36:22intellectual disability we might be able
36:24to identify some sort of cause um but
36:28about one-third of the time we're not
36:31able to do that the types of things that
36:34might really increase the risk of a
36:36child having a neurodevelopmental
36:38disability or specifically an
36:40intellectual disability are things like
36:42genetic disorders exposure to alcohol
36:46or lead in utero issues with pregnancy
36:51or delivery can increase the risk of
36:53having a child with an intellectual
36:55disability and then of course
36:57neurological disorders that can be
36:59associated with brain development that
37:03kind of goes awry so diagnoses such as
37:07epilepsy or CP are often associated with
37:11an intellectual disability but as I said
37:14there's about one-third of the time
37:15where we're not sure why a child is born
37:18with an intellectual disability and that
37:20can be a very hard thing for a family to
37:22hear or to understand but what I always
37:25try to assure families is that typically
37:28this doesn't necessarily change the
37:31course of treatment in some cases if
37:33there's a known medical cause that might
37:35be related to certain medications or
37:37treatments or things that we can do to
37:39help a child but a lot of times the way
37:42that we're going to respond what our
37:43teachers and our other providers working
37:46with this individual are going to need
37:47to do isn't going to change based on the
37:50cause or where the intellect
37:52disability comes from we're typically
37:54going to respond the same way regardless
37:56so other considerations that we think
38:01about when we're diagnosing an
38:02intellectual disability we want to think
38:04about community or environmental factors
38:07for example if a child has experienced
38:10trauma or significant neglect that might
38:14be impacting how they're performing and
38:16that might not be a true intellectual
38:18disabilities we want to take those types
38:20of factors into account we want to look
38:22at cultural or linguistic factors if a
38:25child's first language is not English
38:27but they're being given an IQ test in
38:30English we want to consider how that
38:31might be impacting their performance are
38:33there cultural differences that might be
38:36impacting how they're performing at home
38:39or at school we also want to take into
38:42account other disabilities that might
38:43impact functioning such as physical
38:45disabilities if there's a mobility issue
38:47we want to consider how that might be
38:49impacting their performance if there's
38:51blindness or deafness or other mental
38:53health diagnoses all of that needs to be
38:56taken into consideration so that we're
38:58really looking at whether this diagnosis
39:00is appropriate or not there's also a
39:05frequent co-occurring conditions with an
39:09intellectual disability so children who
39:11are diagnosed with an intellectual
39:13disability are about three to four times
39:15more likely to be diagnosed with another
39:19neurodevelopmental disorder another
39:22mental health diagnosis or possibly
39:24another psychiatric condition so it
39:27doesn't necessarily mean that they will
39:30not struggle with other difficulties as
39:32well the types of kuu occurring
39:35diagnoses we might see in children with
39:38an intellectual disability include
39:40autism spectrum disorder speech and
39:43language disorders ADHD anxiety or mood
39:47disorders or even schizophrenia so a
39:51child with an intellectual disability
39:52should continue to be monitored to see
39:55if they meet criteria for any other
39:57diagnosis and individuals that are
39:59working with someone with an
40:01intellectual disability should be
40:03considering whether any of these other
40:05diagnoses
40:06also be applicable which might help
40:08guide or change treatment decisions
40:10educational decisions or things like
40:13that so what does intervention for
40:18individuals with an intellectual
40:19disability look like the first thing
40:22that we always want to think about is
40:24how can we ingest adjust the environment
40:27and the expectations to meet the needs
40:31of that individual with an intellectual
40:33disability so a lot of times this
40:36includes
40:36educating parents siblings teachers or
40:40clinicians that are working with that
40:42individual to really understand um what
40:46is an appropriate expectation or think
40:50about how can we change our environment
40:52that we're creating for this individual
40:54so that they can be as successful as we
40:56want them to be and a lot of times this
40:59also includes establishing realistic
41:01expectations so we have to think about
41:05when we're trying to intervene for an
41:07individual with an intellectual
41:08disability how are we gonna help them
41:11learn how are we going to reduce
41:14behaviors for example that might be
41:17getting in the way of their ability to
41:19learn or function in their environment a
41:22lot of times it's not uncommon for us to
41:24see that behavior difficulties can
41:27develop in an individual with an
41:29intellectual disability for example at
41:32school we might see that children with
41:34an intellectual disability develop
41:36disruptive behaviors
41:38perhaps because they're frustrated when
41:42expectations around them or what they're
41:45being asked to do is something that they
41:47don't have the ability really to do on
41:49their own perhaps they need more support
41:51perhaps we need to lower our
41:53expectations for what the work level is
41:56that they can complete and a lot of
41:58times by adjusting the environment
42:00around the individual we actually see
42:02that some of those disruptive behaviors
42:04may decrease or go down so how do we
42:08adjust the environment or what kinds of
42:11strategies can we use to be more
42:13productive with when we're working with
42:15an individual with an intellectual
42:17disability the first thing we might
42:20I think about our visual supports so
42:22because an individual with an
42:24intellectual disability might require
42:27more reminders more repetition to get
42:30things done how can we use a visual or
42:33some sort of picture or something a cue
42:36that is in their environment that they
42:38can see to help increase their
42:40independence so that we don't have to
42:41verbally prompt all day long to move
42:46from one thing to another so that's why
42:49also a schedule can be really helpful so
42:52use of a schedule sometimes a visual
42:54schedule that they can see that shows
42:56them what's coming next can be really
42:58helpful typically keeping a similar
43:01routine from day to day can be really
43:04important and can really help reduce
43:06some of the anxiety that comes from that
43:09difficulty of understanding time and
43:11difficulty planning ahead and because we
43:15know that transitions are hard we often
43:18want to think about how can we allow for
43:21more time when we have to transition
43:23from one activity to another or one
43:25place to another how can we generally
43:28just decrease the number of transitions
43:30that this individual has throughout
43:32their day so that they don't have to
43:33stop and start as many times and then
43:37when we do have a transition how are we
43:39helping to prepare them for that
43:40transition letting them know what's
43:42coming helping to externalize time for
43:45them so that they can see for example
43:47maybe with a timer they can see okay
43:49there's two minutes until I have to do
43:50something different
43:52we know that repetition and
43:55reinforcement is the best way to teach a
43:58new skill to an individual with an
44:01intellectual disability so that means we
44:04show them what they need to do we tell
44:06them what they need to do we model for
44:08them what they need to do we repeat that
44:10process and every time that they do
44:13complete a skill we reinforce that so we
44:17give positive praise or perhaps access
44:20to reward like a sticker or some sort of
44:24edible reward that they enjoy could be
44:26time doing something they enjoy but when
44:29we reinforce that and repeat the skill
44:31over and over again
44:33that's how the individual actually
44:35starts to develop that skill over time
44:38in general it's important that we work
44:43to decrease the stimulation in the
44:46environment of someone with an
44:47intellectual disability so for example
44:50when we're having behavioral
44:52difficulties if someone's acting out or
44:55is upset or anxious it's typically
44:57helpful to talk less and think about how
45:01we can actually decrease the stimulation
45:03around that person give them a chance to
45:05take a break to calm down
45:08without talking or adding lots of people
45:12around them which is a common response
45:14when we want to help but perhaps we
45:17should just have one person who's the
45:18point person that comes when that
45:20individual needs that type of support
45:21and perhaps we have a visual that we can
45:24use that use them to calm down or take a
45:27break rather than talking to them
45:30another thing to think about is how can
45:32we infuse choice into the day-to-day
45:36life of an individual with an
45:38intellectual disability so rather than
45:40just creating a schedule and how telling
45:44them this is what they have to do in
45:46every moment across the day can we
45:49provide choices you can either do this
45:51or this and that tends to help increase
45:53compliance because it allows the
45:56individual to actually have some say in
45:58what comes next and make some choices
46:00about what they would like to do and it
46:02might be hard for them to verbalize that
46:04on their own
46:06finally for some individuals with an
46:08intellectual disability in particular if
46:11we see some co-occurring mental health
46:14diagnosis or other conditions behavioral
46:18challenges we might also consider
46:20medication as another form of treatment
46:22for individuals with intellectual
46:24disability and sometimes working with a
46:28provider who really has experience
46:31working with children or adults with
46:34neurodevelopmental disabilities can
46:36really help families to learn more about
46:38how medication might be a piece of the
46:40puzzle as well so when we can
46:44sitter intervention there's a lot of
46:47things that we can ask ourselves the
46:49first thing we might want to think about
46:51are is am I asking too much too fast
46:56sometimes we may not even realize how
46:59many directions we gave in one
47:01particular timeframe did we say too much
47:06too fast and now the person is just
47:08confused about what they're being asked
47:10to do so you might want to think about
47:12should I step back can I be more
47:14concrete can I be more can I be shorter
47:17and what I'm asking in this direction
47:19and that can really increase compliance
47:22and can increase the individuals ability
47:24to learn we also have to recognize that
47:28individuals with an intellectual
47:30disability have their own needs wants
47:33desires there's things that they don't
47:36like right and we have to consider that
47:39the things that they would like to do
47:41and like to learn might be different
47:44than the agenda of all of those around
47:46that individual so take that into
47:49consideration when you're thinking about
47:51what's going to help that individual to
47:54be successful and to be happy and to
47:57feel some agency in their lives so we
48:01want to establish a routine that is
48:03going to be fulfilling for that
48:05individual but also not be
48:07overstimulating which really goes back
48:09to that question of are there things
48:11that is there potentially too much
48:13that's going on is that potentially too
48:16stimulating when we have all of this
48:18happening at one time and how can we
48:20maybe pull back some of what we're
48:22including in an individual's day provide
48:25more opportunities for breaks or for
48:27choosing an activity for enjoyment for
48:31example we also want to make sure that
48:34basic needs are always being met not
48:38just for the individual but for the
48:40caregivers too because it's very
48:42important so we want to make sure are
48:44they getting enough sleep are they
48:46eating healthy are they getting exercise
48:49because of that difficulty with self and
48:51internal motivation we might have to
48:54prompt these types of behaviors for the
48:56individual they have to pray
48:57healthy you're eating going to bed
48:59sooner getting some exercise taking a
49:02walk because um that's really actually
49:05going to help their overall health and
49:07their overall functioning so now I'm
49:11going to spend the last few minutes
49:13reviewing some resources that can be
49:15useful when we think about working with
49:18children or adults with an intellectual
49:21disability this could be resources that
49:24will be helpful for families or
49:25providers and while this is by no means
49:28an exhaustive list I hope that it's at
49:30least a start and that you can click on
49:34these links or Google some of these
49:36organizations to learn more so I want to
49:40start by talking about resources you can
49:42go to for just general information about
49:44intellectual disability the Ark is a
49:47national organization that is known for
49:50advocating and serving people with
49:52intellectual and developmental
49:53disabilities and their families and the
49:57ark has a local chapter and here in
49:59Indiana called the Ark of Indiana
50:02they have a fantastic website and a lot
50:04of really great resources for families
50:06or providers that are working with
50:08individuals with intellectual and
50:10developmental disabilities there's also
50:12an organization called family voices
50:15family voices provides information
50:17training and support to families and
50:20children with special healthcare needs
50:22and professionals that are supporting
50:24that population
50:25it's a family to family organization so
50:28it's parents of children with special
50:32healthcare needs that tend to be who you
50:36can talk to and work with if you get
50:37connected with family voices and they
50:39have a really fantastic website as well
50:41with lots of information in particular
50:43when it comes to healthcare financing if
50:45that's something that you'd like to
50:47learn more about nationally there's also
50:50some organizations that might be helpful
50:52to take a look at the American
50:54Association on intellectual and
50:56developmental disabilities is kind of
50:58one of the premier national
51:00organizations that represent this
51:01population they have a conference that
51:04you can attend to learn more there's
51:06also the association of university
51:08centers on disabilities that
51:11focuses more on supporting research and
51:14policy changes that impact individuals
51:17with intellectual and disabilities
51:18there's a really great um YouTube
51:22webseries that I also want to point out
51:25called Tuesdays with Liz um Liz is an
51:28amazing disability advocate in
51:31Washington DC she also happens to have
51:33an intellectual disability herself and
51:35she has a weekly youtube series where
51:38she interviews people to talk about
51:39topics related to this population um and
51:43I think it's really fantastic so that's
51:45another great resource that you might be
51:47interested in checking out in terms of
51:50different government agencies that are
51:52important to be aware of Indiana first
51:55steps is the early intervention
51:57programming from birth to three years
51:59old here in Indiana every state has
52:02their version of this in Indiana it's
52:05called first steps this is a way for
52:07families to access free therapies if
52:11their child has a delays in their
52:13development
52:14this can include occupational therapy
52:17speech therapy physical therapy or
52:20developmental therapy and oftentimes
52:22this is provided in the home so if a
52:25child is showing evidence of delays in
52:28their development
52:29before age three it's important to get
52:32that child and that family connected
52:34with first steps so they can get some of
52:35those services on the other end of the
52:39spectrum there's vocational
52:40rehabilitation vocational rehabilitation
52:43or vr works with families who have an
52:46individual with a disability who is
52:47transitioning to adulthood and can work
52:50to provide support with transition to
52:53employment or to post-secondary
52:56education and that is another important
53:01organization to get connected with
53:02typically during the high school years
53:04to help with that transition it's also
53:07important to know about the bureau of
53:08developmental disabilities there is a
53:11lot of information on their website
53:13about how Indiana supports families who
53:17have a child with an intellectual or
53:19developmental disability I would like to
53:21point out that there are financial
53:23supports that are
53:24available for families and children who
53:27have this diagnosis these are non income
53:31based financial supports so for example
53:34the family support waiver is money that
53:37a family can qualify qualify for that
53:40can be used to pay for therapies case
53:43management respite transportation adult
53:46day services um there is an application
53:49process that is required and I encourage
53:52you to learn more about this if that
53:53might be applicable family voices has a
53:57lot of information about getting
53:58connected with the family support waiver
54:00there's also another waiver called the
54:02community integration and habilitation
54:03waiver and this is a little bit more
54:06specific that's money reserved for
54:09individuals who have priority status
54:11because of specific circumstances such
54:14as death of a caregiver if there's
54:16evidence of abuse or neglect or if
54:18there's evidence of some sort of extreme
54:19health or safety risk so if an
54:22individual has an intellectual
54:23disability they typically can qualify
54:25for example for the family support
54:27waiver but there is paperwork that needs
54:30to be signed and there is a wait list
54:31for receiving these services finally
54:35from an education standpoint it is
54:37important to know about special
54:39education and a lot of families want to
54:43know about pathways to graduation or
54:45what that looks like for their child
54:47with an intellectual disability so I
54:49encourage you to learn more about that
54:51there is a great youtube link here about
54:56individuals in Indiana talking about
54:58what the certificate of completion looks
54:59like and there is information about
55:01different pathways to graduation
55:04there's an excellent organization in
55:06Indiana called insource where families
55:09can get connected with advocates who
55:11also have children who've been through
55:13special education to learn more about
55:15how they can navigate the special
55:16education system and then also the
55:19council for Exceptional Children is a
55:21national organization that provides
55:23information about special education and
55:26finally if last couple things here with
55:29the transition to adulthood
55:30many families have questions about their
55:33child with an intellectual disability
55:35when it comes to
55:37guardianship and supported
55:39decision-making that's the legal process
55:41in which someone is appointed to support
55:44or be responsible for and other
55:47individuals property their finances and
55:50if a family wants to learn more about
55:53that the arc of Indiana has a lot of
55:55great information about this there's
55:57also something called a special needs
55:59trust that allows an individual to have
56:02access to financial resources well not
56:05have pub having public benefits taken
56:08away you can find more information about
56:10this through the arc as well and when
56:13all else fails if families have
56:14questions about these types of planning
56:17for the future we absolutely recommend
56:19that they consult with an attorney
56:21through the for through example the
56:23special needs Alliance so I know that I
56:27have just about run up to one o'clock so
56:31I would like to say thank you very much
56:32for attending this webinar we appreciate
56:36your time if you have any questions feel
56:39free to get in touch with us here at
56:40children's resource group or visit our
56:43web page thank you so much and have a
56:45great afternoon

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