Autism ASD: : Developmental Disabilities Intervention: Right Care, Right Time, Right People, Right Context.

I wrote this in a previous capacity before the pandemic was declaired. You may find some of the information useful and enlightening.

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

(23) https://onlinelibrary.wiley.com/doi/abs/10.1002/(SICI)1099-078X(199811)13:4%3C201::AID-BIN17%3E3.0.CO;2-R

(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=PQO9aog3A3U