(The same principles work for mental health and developmental disabilities intervention.)
Developmental Disabilities Intervention:
Right Care, Right Time, Right People, Right Context.
“When we speak of ideal health care that we
want to receive or that providers aim to deliver, the phrase that jumps to mind
is: “the right care, the right place, the right time.” This phrase in this context is so ubiquitous
that tracing its origin is nearly impossible, but it does roll off the tongue
easily and captures the concept accurately.
Perhaps because of how easy it is to say and remember, the difficulty of
actually delivering care that meets this standard has been trivialized by those
who do not actually provide health care.”
John R. Brumsted, MD: President and Chief Executive Officer of the
University of Vermont Medical Center
Purpose
Expand the capacity of children’s
developmental disability intervention services in Idaho so that every child/family
in the state who qualifies, needs, and wants the services, can receive quality
services in a timely manner.
Problems
1. Millions
of dollars are spent annually on less effective interventions while hundreds of
Idaho’s children and youth who need quality intervention, go without.
2. Many
children/youth go on long waiting lists to receive services, often for well
over six months before receiving services.
3. Most
of the children/youth we serve in the more rural areas of Idaho never receive
intervention services beyond the Infant Toddler Program (other than through the
school).
4. Many
of the more difficult children/youth do not receive intervention or it is
extremely limited. Those who have
services, are frequently terminated.
5. Services
are often provided without fidelity to research while billed as evidence based
practice.
6. Children/youth/families
are often not receiving the potential benefit from services.
7. Many
if not most providers do not have the additional requisite skills to coach
parents/natural caregivers.
8. Our
current system is not well prepared in the eventuality of a pandemic.
Solution Summary
1. Financially
incentivize the right care, at the right time, in the right place, with the
right people, in the right context.
2. Financially
incentivize service provision for the children/youth with the greatest needs.
3. Allow
robust telehealth options for intervention.
Question
Are we as a state incentivizing the right
care, at the right time, with involvement of the right people? Is intervention contextualized?
What does the research say?
There are two primary models of intervention
for ASD: Behavioral and Developmental; however, as Tristram Smith related
before his passing, the two are converging.
One example of this convergence is The Early Start Denver Model. (1)
The Early Start Denver Model has been
replicated multiple times around the world to include through telehealth. This
has occurred in the United States and verifiably effective aspects have been
made available through the internet in less prosperous countries.
See examples in references: (2) (3) (4) and
(5)
While ABA is well researched and sometimes
considered the “gold standard” for intervention for children/youth with Autism,
a recent report The Department of Defense Comprehensive Autism Care
Demonstration Quarterly Report to Congress Second Quarter, Fiscal Year 2019
found very poor results from ABA for the children served through TriCare. (Incidentally, TriCare is now supporting and
paying for P.L.A.Y. for children with ASD.)
Is the fault ABA or is the fault a defective delivery? Were providers providing the right care, in
the right place, at the right time, and including the right people? Was it contextualized? Were services delivered in natural
environments during natural routines?
Did services include natural caretakers?
Because of the solid research supporting ABA to include EIBI (Early
Intensive Behavioral Intervention) and the known benefits when provided with
fidelity, one can make the assumption that in the case of some or many of
TriCare providers, it was not provided with fidelity.
In the abstract for: O. Ivar Lovaas:
Pioneer of Applied Behavior Analysis and Intervention for Children with Autism
Tristram Smith & Svein Eikeseth, (6) state:
“O. Ivar Lovaas (1927–2010) devoted nearly half a century to ground-breaking
research and practice aimed at improving the lives of children with autism and
their families. In the 1960s, he pioneered applied behavior analytic (ABA)
interventions to decrease severe challenging behaviors and establish
communicative language. Later, he sought to improve outcomes by emphasizing early intervention for
preschoolers with autism, provided in family homes with active parental
participation. His studies indicated that many children who received
early intensive ABA made dramatic gains in development. Lovaas also
disseminated ABA widely through intervention manuals, educational films, and
public speaking. Moreover, as an enthusiastic teacher and devoted mentor, he
inspired many students and colleagues to enter the field of ABA and autism
intervention.”
Most
of the evidence for ASD intervention includes home based and involves parents/natural
caretakers in the natural environment of the child/youth and during the natural
routines. When someone speaks of
research demonstrating the importance of 30 or 40 hours a week of intervention,
if you read the actual research, it almost if not always, includes significant
parental involvement, natural environments, and natural routines. Why?
Because children, (and we too,) respond to contextualized cues in our
natural environment and natural routine.
Have you ever driven somewhere and realized you did not remember part of
the drive? (Not recommended.) Have you
ever purchased or ate something out of habit?
We all respond to naturally occurring cues. These cues simply cannot be fully or even
close to fully replicated in a center. These
cues often include naturally occurring circadic and ultradic rhythms, satiation
from eating, sensory from touch, humidity, smells, sight, sound, routines,
etc. The naturally occurring cues in a
home around a bedtime routine are in the hundreds. They cannot be replicated
outside of the natural environment and natural routine. For most of the children/youth we serve,
while their behavior may change in the provider setting, those changes are
difficult to generalize because the provider cannot duplicate the naturally
occurring cues, to include the parent.
See also: INTENSIVE HOME-BASED EARLY
INTERVENTION WITH AUTISTIC CHILDREN (7)
Researchers are becoming more and more aware
of the need for contextualized intervention, and some, such as Sally Rogers,
are becoming more vocal about the need. In
a recent presentation at the UC Davis Mind Institute, Sally Rogers, Ph.D.,
commented: ‘We need to
stop training children and start training parents.’ (8)
Home Based Developmental Interventions
Developmental interventions have been widely
researched, accepted, and provide positive outcomes. For example:
P.L.A.Y. (9) An interesting note, P.L.A.Y.
has demonstrated better progress for lower functioning, more severely impacted
children with ASD than other peer reviewed, journal published models.
JASPER (UCLA) (10)
PACT (UK) (11) PACT is well researched and well accepted in
the United Kingdom.
And in general: Effect of Parent Training
vs Parent Education on Behavioral Problems in Children With Autism Spectrum
Disorder A Randomized Clinical Trial (12)
Why are natural environments and natural
routines essential for evidence-based practice intervention?
Research
has clearly shown that interventions in the natural environments, during the
natural routine, and including natural caretakers is the most impactful for
children. Inclusion and the best
opportunity for a “best life” are part of the reason, but there is more, it is the
science of habits and contextualization, which will be discussed later.
See
references: (12) & (13)
Are
we really helping children/youth/families achieve their Best Life?” (14)
Can
a “best life” be achieved through center-based intervention?
Required by law… and strongly encouraged
As
we are all aware, natural environments are required by law for Part C of IDEA
and routine based interventions have long been emphasized.
See
references: (15) (16) (17)
and:
Family Guided Routines Based Intervention (FGRBI) and
Caregiver Coaching (18)
While
the ages often identified here are birth to five, the same theoretical
framework applies to a ten-year-old and a fifteen-year-old, etc.
The
Infant Toddle Program in Idaho, as required by law, has been strongly moving in
this direction for many years through Evidence Based Practices in the natural
environment, during the natural routine, and provided by parents and natural
caregivers through coaching (contextualization). We are building the right foundation in the
Infant Toddler Program. We need to further
solidify the foundation and build the next floors. Older children (and adults) need
contextualized intervention. For the
Infant Toddler Program, this paradigm shift has recently included P.L.A.Y. as
an effective intervention, which is creating excitement because of the positive
recognizable results.
Habits
Habits
control anywhere from 40 to 90% of our behavior depending upon: cognitive
functioning, stress, fatigue, and substances such as alcohol. This is crucial because habits are contextually
cue dependent. A cue in a clinic or
center is not the same as a cue in the home, natural environment, during
natural routines, and with natural caretakers. Take a sleep deprived child (and consequently
parent), the cues surrounding sleep in the home, at night, in the family
setting, are significantly different from the “sleep” cues in a center in the
middle of the afternoon. There are
literally hundreds of cues associated with the bedtime routine for a typical
child/adult.
Some
research has determined that habits form approximately 43% of behavior for most
humans. (19) However,
for many, habits direct the majority of behavior. Habits are primarily formed and directed by
the basil ganglia. Many with deficits affecting the cerebral cortex, have well-functioning
basil ganglion and are significantly more driven by habits. For example: individuals who have been
addicted to alcohol, typically have altered brain chemistry, even if not still
drinking and are significantly more directed by habit. (20) It is similar for many of the children we
work with. The research on developmental disabilities and
habitual behavior is extensive and can be easily found through a search
with those key words on google scholar.
“The
basal ganglia are involved in cognition and emotion and play an important role
in 'reward and reinforcement' of behavior, 'response to a stimulus', addictive
behavior and habit formation.” (21)
Habits
are cue dependent. The vast majority of
cues which press or compel us to do things occur during our natural routines
and in our natural environment, to include natural caretakers and supports. They are contextualized and contextually
dependent. To attempt to significantly
alter behavior across environments without addressing naturally occurring cues,
is often futile over time.
What is the answer now?
Incentivize
providers to provide contextualized intervention in the right place, at the
right time, and involve the natural caretakers.
Incentivize providers to provide services to the most at-risk children
and youth as identified by adjudication (or charges) as a risk to the
community.
Provide:
5%
increase for providing services off hours (between 6:00 P.M. and 8:00 A.M. and
on weekends).
5%
increase for providing services in the natural environment, during the natural
routine, and coaching natural caretakers
10%
increase for providing services to the most at-risk children and youth as
identified just above.
In
addition:
While
telehealth intervention may not be an immediate answer, because it would
require systemic and rule changes, it is evidence based, it is effective, it
will reach most of our more rural families, and there are out of state
providers “waiting in the wings” right now, anxious to provide the service in
Idaho. Telehealth is a paradigm shift
for many in Idaho; however, it has been successful in the medical area and is
demonstrating good results in delivering Speech, Physical Therapy, and
Occupational Therapy on a limited basis.
We should be moving in this direction planfully, but as quickly as
possible.
Were
the above incentivization provided and rules changes to allow for telehealth
for intervention we would dramatically increase service capacity and
availability throughout Idaho. We would
make services available to the children/youth/families most in need.
Cost
Because
this will require travel, there will be less billable time. Because the right care will be provided at
the right time, in the right place, and involve the right people, overall long-term
costs will be reduced significantly if services are provided with fidelity. There have been multiple studies that demonstrate
this in both the medical as well as the developmental disabilities fields.
See
references: (22) (23) & (24)
If
we do not, when we do not, provide intervention in the right place, at the
right time, to include the right people, we must often provide significantly
more expensive interventions through either juvenile corrections or Medicaid
paid placement, typically through EPSDT.
Unfortunately, the long-term results from these more expensive
interventions, often have not, provided the outcomes for the youth or family
that we or they might wish.
In
a time of limited capacity and funding, the benefit of parent coaching, parent
directed intervention, cannot, should not be overlooked.
For
example: P.L.A.Y. is provided at a
fraction of the cost of the amount typically spent on most young children with
ASD in the United States. Other
developmental or hybrid developmental/behavioral programs, which are also
evidence based, can be provided at a fraction of the cost and provide
demonstrable results.
Conclusion
We
have created a system where the easiest children often receive the most
services in the wrong place. Many if not
most providers will take the path of least resistance (easiest) and most
profit. Many providers are providing
services exclusively or almost exclusively in centers/clinics, billing for and
calling it evidence based. There is no
current research that supports this.
Going all the way back to the Lovaas research, he emphasized work in the
home with the parents. Subsequent ABA
research did the same. If you look at
the actual original research on the Even Start Denver Model (ESDM), time spent
by the parent was virtually the same as the time spent by the
professional. Subsequent ESDM related
research has relied even more heavily on parents. Today, most evidence based developmental interventions
used in the United States and around the world rely extensively or primarily on
parents to provide the actual intervention, with professional coaching.
We
do not have the capacity to provide the services needed by the children in
Idaho. Without very significant budget
increases and significant increases to Medicaid spending, we will not catch up
to or keep up with the demand. Coaching
parents/natural caregivers is the best way to bridge this gap. Incentivizing this model is the most
effective way we have to get there. This
is not easy work. It requires different
skills to work with a parent/family in the home or community, then to work with
a 4-year-old (or any age child/youth) in the center. Without a strong financial incentive, most
providers will not make this essential change in their service delivery. They will not make the effort to learn the
requisite skills.
ABA
is evidence based and effective if provided with fidelity to the model, contextualized
in natural environments, during natural routines, and including natural
caretakers. However, as Prizant asked in
his article (and others) Treatment Options and Parent Choice Is ABA the Only
Way? (25) ABA is not the only way. It can be effective when delivered correctly;
however, it is often more expensive, requires more professional hours per
child, limiting service capacity.
References
(1) Randomized, Controlled Trial of an
Intervention for Toddlers With Autism: The Early Start Denver Model Geraldine
Dawson, Sally Rogers, Jeffrey Munson, Milani Smith, Jamie Winter, Jessica
Greenson, Amy Donaldson and Jennifer Varley Pediatrics, January 2010, 125 (1)
e17-e23; DOI: https://doi.org/10.1542/peds.2009-0958
(2) Delivery of Group-Early Start Denver
Model in an Australian early childhood setting https://pdfs.semanticscholar.org/6ec9/027da6d65f2366cc9404d0b92a857236300e.pdf
(3) Telehealth Parent Training in the Early
Start Denver Model: Results From a Randomized Controlled Study Laurie A.
Vismara, PhD, Carolyn E. B. McCormick, PhD et al Focus on Autism and Other
Developmental Disabilities May 26, 2016
(4) Implementation of the Early Start Denver
Model in an Italian community Costanza Colombi, Antonio Narzisi et al Autism October 20, 2016
(5) Extending the Parent-Delivered Early
Start Denver Model to Young Children with Fragile X Syndrome Laurie A. Vismara,
Carolyn E. B. McCormick, Rebecca Shields & David Hessl https://link.springer.com/article/10.1007/s10803-018-3833-1
(6) O. Ivar Lovaas: Pioneer of Applied
Behavior Analysis and Intervention for Children with Autism Tristram Smith
& Svein Eikeseth, Journal of Autism and Developmental Disorders volume 41,
pages375–378(2011) https://link.springer.com/article/10.1007/s10803-010-1162-0
(7) INTENSIVE HOME-BASED EARLY INTERVENTION
WITH AUTISTIC CHILDREN Stephen R. Anderson, Debra L. Avery, Ellette K.
DiPietro, Glynnis L. Edwards and Walter P. Christian Education and Treatment of
Children Vol. 10, No. 4, SPECIAL ISSUE: New Developments in the Treatment of
Persons Exhibiting Autism and Severe Behavior Disorders (NOVEMBER 1987), pp.
352-366
(8) Sally Rogers, Ph.D. with the UC Davis
Mind Institute recently stated in her presentation: Innovations in early
intervention for ASD: new findings, new tools, and new methods: ‘We need to
stop training children and start training parents.’ 2019-20 Distinguished Lecturer Series https://www.youtube.com/watch?v=K62E4K9B6cs&t=4718s
(9) P.L.A.Y. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181375/
(10) JASPER (UCLA) http://www.kasarilab.org/treatments/jasper/
(11) PACT
(UK) http://research.bmh.manchester.ac.uk/pact/about
& https://www.sciencedirect.com/science/article/pii/S0140673616312296
(12) Effect of
Parent Training vs Parent Education on Behavioral Problems in Children With
Autism Spectrum Disorder A Randomized Clinical Trial
Karen Bearss, PhD; Cynthia Johnson, PhD;
Tristram Smith, PhD; et al JAMA. 2015;313(15):1524-1533.
doi:10.1001/jama.2015.3150 https://jamanetwork.com/journals/jama/article-abstract/2275445
(12) http://www.eiexcellence.org/evidence-based-practices/natural-environments/
(13) https://leader.pubs.asha.org/doi/10.1044/leader.FTR2.13042008.14
(14) https://www.lifecoursetools.com/
(15) https://www.wrightslaw.com/info/ei.index.htm
(16) http://eieio.ua.edu/routines-based-model.html
(17) https://www.pacer.org/ec/early-intervention/natural-environments.asp
(18) Family Guided Routines Based
Intervention (FGRBI) and Caregiver Coaching Florida State University http://fgrbi.fsu.edu/
(19) Habits in everyday life: Thought,
emotion, and action. Wood,
Wendy,Quinn, Jeffrey M.,Kashy, Deborah A. Wood, W., Quinn, J. M., & Kashy,
D. A. (2002). Habits in everyday life: Thought, emotion, and action. Journal of
Personality and Social Psychology, 83(6), 1281–1297. https://doi.org/10.1037/0022-3514.83.6.1281
(20) https://pubs.niaaa.nih.gov/publications/arh314/340-344.htm
(21) https://www.braininjury-explanation.com/consequences/impact-by-brain-area/basal-ganglia
(22) https://www.sciencedirect.com/science/article/abs/pii/S0890856717303131
(24) https://jamanetwork.com/journals/jamapediatrics/article-abstract/2583518
(25) http://barryprizant.com/wp-content/uploads/2015/07/asq5_aba_only_way_part_2_spring_2009.pdf
Additional
Thoughts:
Parental
Coaching:
Provides:
1. Greater
self-efficacy for the parent
2. Reduces
parental stress
3. Provides
for improved skills and behavior for the child through naturalistic
interventions.
4. Evidence
based
Telehealth:
1. Provides
for a safe interaction when there is a concern of a transmission of
illness. This would include during a
pandemic as well as if the health/immune system of the child/parent is particularly
fragile (which is fairly common)
2. There
are providers who are experienced, ready and willing to provide this service in
Idaho right now (we need to allow qualified providers to provide intervention
without a physical location in Idaho)
3. Facilitates
easier provision of services in rural areas.
4. Would
eliminate the waiting lists if we allowed out of state providers.
5. Allows
for healthy social distancing when necessary.
6. Evidence
based
Additional
Video Resources/Information:
Telehealth:
https://www.youtube.com/watch?v=rmRhAgXCO8w
https://www.youtube.com/watch?v=RNmVcJjvR3k
https://www.youtube.com/watch?v=3KpQh8A3AsM
https://www.youtube.com/watch?v=nsHXNTkif7w
https://www.youtube.com/watch?v=REMUaaQHJ5I
https://www.youtube.com/watch?v=REMUaaQHJ5I
https://www.youtube.com/watch?v=PQO9aog3A3U
https://www.youtube.com/watch?v=c23GwTuUeqo
https://www.youtube.com/watch?v=IeTgpdJ6Or8
https://www.youtube.com/watch?v=3GAHmiI1K64
https://www.youtube.com/watch?v=WyqZMeGY8j4
https://www.youtube.com/watch?v=LMxS6D6oxmI
https://www.youtube.com/watch?v=7vHWbPMOznM
https://www.youtube.com/watch?v=K62E4K9B6cs
Influencing/helping
parents
https://www.youtube.com/watch?v=yH8XTwLOoVk
