Positive Approaches Journal, Volume 10, Issue 3

Thaler | 58-74




Positive Approaches Journal - Volume 2 Title

Volume 10 ► Issue 3 ► November 2021



Serving Children and Youth with Complex Behavioral Support Needs

“No provider will serve him.”

Nancy Thaler



Abstract

When we hear the words, “no provider will serve him,” we know that we have a crisis; our service system is failing a person whose needs are very great. From my experience over five decades as a direct support worker, a houseparent, a provider agency administrator, and a state director, I can say that this is not new. We have struggled, since the earliest years of providing community services in the 1970s, to meet the needs of people whose behavior is problematic and can be dangerous. This article is based on information about 50 children and young adults who were in crisis and referred to the Pennsylvania Department of Humans Services in 2021. The interpretation of their challenges and needs and the description of the strategies that may address their needs is based on a synthesis of my experience in the field of developmental disabilities and developments in the field of trauma and behavioral health over several decades.


Introduction

“People with complex behaviors” is the language we use today to describe “people who are difficult to serve,” or “people with challenging behavior,” or “people who are dually diagnosed.” Regardless of the label, the challenge is the same. These individuals present behavior that is dangerous to themselves or others around them, behavior they cannot control, behavior that can be strange and frightening.

Over the decades, we have acquired new knowledge and additional resources. We know more about diagnoses such as Autism Spectrum Disorder (ASD) and bipolar disorder; we have new medications that are more targeted to a diagnosis than Thorazine and Haldol were. We know about trauma and the profound impact it has on a person’s ability to function; and we have new therapies.

We are doing better. There are many children and adults who have challenged and pushed us to our most creative limits. There are many providers who have expanded their knowledge base, have individualized services, and have learned to serve people with creativity and commitment.

But we need to do more. As a system we need to reach everyone.

Who are the children and youths with complex behaviors? What do we know about them? What makes their behavioral support needs complex?

Since the Department of Human Services’ publication of the Bulletin on Complex Case Planning for Children and Youth Under Age 21, issued August 2021, more than 50 individuals, from many counties across the commonwealth, have been referred to the Department of Human Services (DHS) with a request for assistance. The department receives a referral form and sometimes additional information such as social histories and evaluations. An analysis of the information about the first 50+ children and young adults tells us something about who they are and what their needs are. This group of young people is not a random sample; they are simply the first referrals sent to the department after the Bulletin’s implementation. But because there are similarities in their histories and needs, we can glean information to inform our efforts to improve services to children and youths with similar needs. The most significant information we can glean from a review of available records follows:

Behavior - or more accurately multiple behaviors – this is the issue that is always identified as the reason a provider will not be willing to serve the child or youth. The most common descriptions of problematic behavior include:

o   Hyperactivity

o   Failure to Bond

o   Aggression/hurting others

o   Screaming

o   Sleep Disturbance

o   Property Destruction

o   Fire Setting

o   Refusal to Cooperate

o   Elopement

o   Theft

o   Cannabis Use

o   Enuresis

o   Feces Smearing

o   PICA

o   Suicide Ideation

o   Self-harm (self-hitting, head banging, self-mutilation, running into traffic, attempted suicide)

o   Sexual acting out (public masturbation, promiscuity, predatory behavior)

- A majority (77%) are teenagers and young adults ages 14 to 19

- More than half (65%) are boys

- A majority (76%) have had at least five out-of-home placements, some as high as twenty

- Most are served by multiple systems of care. All are eligible for services from more than one system such as the Office of Children and Youth Services and Families, The Office of Mental Health and Substance Abuse, the Office of Developmental Programs and in a few cases, the justice system. Many receive services from local programs such as youth shelters.

- A significant majority (84%) of these youths have at least one mental health diagnosis, combined with more than one developmental disability. The diagnoses most often recorded are:

o   Cognitive

§  Autism

§  Attention Deficit Hyperactivity Disorder

§  Brain Injury

§  Intellectual Disability

§  Fetal Alcohol Syndrome

§  Lead Poisoning

§  Syndromes including Prader-Willi and Von Willebrand Disease

§  Communication Deficits

o   Health Conditions

§  Diabetes Type I and II

§  Epilepsy

§  Dysmenorrhea

§  G-tube

o   Mental Health

§  Post-traumatic Stress

§  Developmental Trauma

§  Intermittent Explosive Disorder

§  Conduct Disorder

§  Dysregulation Disorder

§  Reaction Attachment Disorder

§  Anxiety

§  Depression

§  Bi-Polar Disorder

§  Obsessive Compulsive Disorder

§  Oppositional Defiance Disorder

§  Impulse Control Condition

§  Psychosis

§  Schizophrenia

§  Gender Dysphoria

- A percentage (38%) are from adoptive or foster families.

- More than half (68%) have a history of complex trauma. defined as trauma that occurs early in life and is persistent. This trauma is most often physical and/or sexual abuse.

- A small number have significant physical health problems or additional issues that require special attention. These include sexual identity exploration, Type II diabetes, problematic sexual behavior, involvement in the criminal justice system

- None of the older youths have a home or family to go to. Often, they do not meet the criteria for admission to a hospital or Residential Treatment Facility

- Unfortunately, race is not specified is the referral documents

When we are successful in meeting the needs of these individuals, what has worked?

Formal and informal interviews with DHS regional staff, county staff, and case managers have provided some insights. Counties, managed care organizations, and providers in many areas of the state are working together and “thinking outside the box.” Success is more likely when cross-systems teams work together to understand the needs of these children and youths and develop solutions.

- Using a System of Care approach and the principles of the Children and Adolescent Service System Program (CASSP).

- When local systems collaborate, bring their knowledge and resources together, and function as a team, it is far more likely that a solution will be found.

- Creating a positive environment that works for the individual. That environment typically involves:

o   A setting for just a few or for a single individual

o   A setting that is trauma-informed to assure there is no inadvertent re-traumatizing. This, of course, requires knowing the youth’s trauma history

o   Enhanced staffing at a 1:1 ratio and sometimes 2:1

o   Routines and activities to match the person’s emotional state

o   Activities that build on the individual’s strengths and preferences, so he/she experiences success and develops self-confidence and self-esteem

o   Treatment - including for trauma – that is aligned with the individual’s diagnoses

- Adjusting rates

o   Negotiated or enhanced rates are often necessary to support a more individualized living arrangement, staffing ratios, and services

- Focusing on building trust and relationships

o   A strengthening of support ties with friends and relatives

o   Consistent, trained staff who are committed to the youth

Digging Deeper - Trauma in Children and Youths with Multiple Disabilities

Trauma is a major factor in the lives of many of these children and youths – and maybe more than we know - who have been referred to the department. Their trauma generally began in early childhood and has persisted. It has often gone unrecognized as the cause of their problematic behavior. Despite descriptions of extensive trauma in their records, that trauma has – incredibly - often not been identified as a diagnosis at all, nor has it been factored into their treatment plan.

Trauma that occurs in childhood is known as “developmental trauma” or “complex trauma” or “neurodevelopmental trauma.” Developmental trauma differs considerably from post-traumatic stress disorder (PTSD). An adult who experiences trauma and then PTSD has, presumably, a “normal” childhood to fall back on, so to speak - a history of stability. But when the trauma happens during a child’s development, it severely undermines “the capacity of the child to form close and secure adult and peer relationships; experience, manage, and express a full range of emotions; and explore the environment and learn…”1 We often see the diagnosis “dysregulation” somewhere in the person’s chart. This refers to an inability to manage thoughts and emotions and therefore to difficulty in controlling impulses and behaviors: the early trauma has made learning to “manage” or “control” simply impossible.

In other words, how a child or teenager or young adult behaves, learns, and relates to people is rooted in their early childhood experiences. A child raised in the security of a loving environment will develop healthy relationships, will trust adults, and will learn from their environment. But a child who experiences serious neglect and abuse – trauma - will develop survival behaviors that may be functional in the environment where the trauma has occurred, but which are dysfunctional in other environments. Fight, flight, or freeze are the words used to describe a person’s response to trauma. Behaviors such as running away, hitting, or lying can be functional as survival strategies but do not work in non-traumatic environments.

Trauma can cause developmental disabilities. All forms of trauma affect brain development. Trauma to the head itself, which may be diagnosed as a concussion or traumatic brain injury, can damage the brain, so that the full range of cognitive functions and adaptive skills are compromised. Childhood trauma is often linked to developmental delay across a several domains including cognitive functioning, as well as language and motor development.2

Children born with a developmental disability are more likely to be victims of trauma and are affected even more profoundly by that trauma. “Maltreatment of children with disabilities is 1.5-to-10 times higher than of children without disabilities.”3 And the difficulty they have in understanding, problem solving, and communicating can intensify the experience and the impact of the trauma.

The behavior in traumatized children, teenagers and young adults with developmental disabilities is often not recognized as trauma-related but is instead interpreted as “negative behavior” that stems from their disability and which needs to be controlled and modified. But we must understand that instead of the typical behaviors we see from youth without developmental disabilities who are traumatized - i.e., elopement, drug use, stealing and self-cutting, etc. – traumatized individuals with developmental disabilities are more likely to engage in face slapping, head banging, feces smearing, and self-stimulating behaviors. Once we understand this, we are more able to identify the presence of trauma and develop appropriate supports and interventions. Self-abusive behaviors are not always the result of trauma. Particularly in neurodiverse children with ASD, the behavior may be a response to stress or anxiety or to communicate when the child does not have verbal communication. It is important to conduct a full functional assessment as well as a social history to determine the reason for the behavior.

Treatment modalities utilized for adults with PTSD are often not effective with individuals with developmental disabilities. Cognitive Behavioral Therapy (CBT), an intervention frequently used for adults, requires a level of interaction that persons with developmental disabilities can find difficult or impossible. But Eye Movement Desensitization and Reprocessing (EMDR), an evidence-based therapy that does not require cognition-based interaction, can be effective. Other models of therapy widely used to treat Developmental Trauma include play therapy, art therapy, therapies using animals, occupational therapy, neurofeedback, various approaches of developmental psychotherapy, and group activities ranging from peer discussion groups to sports or singing.

Fetal Alcohol Syndrome (FAS) and lead poisoning

Both Fetal Alcohol Syndrome (FAS) and lead poisoning are conditions that affect brain development and can result in poor reasoning and judgement, difficulty with attention, impaired memory, irritability, deficits in adaptive behavior, or problems with socialization or self-regulation. A child may have these conditions without having a developmental disability diagnosis...and yet the challenges are the same. Recognizing the presence of either of these conditions is important to securing the right physical health services and behavioral health supports.

Doing What Works

Not all children with problematic behavior have experienced trauma nor do they all have both mental health and developmental disability diagnoses. However, so many children and youths with problematic behavior do have multiple diagnoses and trauma that we should make sure that social histories are exhaustive so that we can rule out conditions before we make assumptions.

Whether we identify trauma or the presence of a developmental disability, the interventions that work best for children with these conditions are also effective for all children and youth with complex behavior support needs.

First, “Don’t ask what the child is doing, ask what has happened to the child.”4 This quote from Dr. Daniel Hughes Ph.D. lays out the road we need to follow. Asking what has happened, when it happened, and for how long will lead to an understanding of both behavior and the best method of support. Trauma is so prevalent among children and youth with complex behavioral support needs, it would be wise to presume trauma and search the child’s records and social history to establish the event or events that may have caused trauma.

What was the trauma experience? Who were the perpetrators? What was the location? The answers to these and other questions are critical to developing a treatment plan and creating a trauma-informed environment. Knowing and consistently sharing with direct support staff the trauma history builds empathy. It helps support staff understand behavior. And empathy and understanding can motivate support staff to “stick with it” even when progress is slow or there are relapses.

A positive, healing environment

To be open to treatment, a child or youth must be receptive. Receptivity is dependent on a sense of comfort and trust. The environment should not present him or her with difficult sounds, experiences, stressors, or interactions, but should calm the flight/fight/freeze response. Making sure that nothing triggers that trauma-response is a place to start. The number of people the individual lives with and their behaviors will affect recovery. Providing a living arrangement with a small number of other residents has been effective for many. In instances of extreme behavior, an individual home provided for a period of time has been effective.

Effective teaching, treatment, and support interventions

The specific diagnoses of each child, teenager, or young adult should be the basis for the type of teaching strategies, treatment, and support approaches that are used. There is an array of options that may be used simultaneously: Trauma Focused Cognitive Behavioral Therapy (TF-CBT); Applied Behavior Analysis (ABA); individual therapy; social stories; group therapy; peer counseling; Internal Family Systems Therapy (IFST); Intensive Systems Therapy (IST); sex education and counseling; education about the mind and body; mindfulness training; Neuro Affective Relational Model Therapy; Dyadic Developmental Psychotherapy4, sensory interventions that calm: e.g., breathing exercises, weighted blankets, warm baths, swinging; Eye movement desensitization and reprocessing (EMDR); Bio/Neurofeedback; Neuro- Entrainment; Play Therapy; Art Therapy; Music Therapy; Psychodrama; Animal Therapy; Movement therapy (Yoga, Tai Chi, exercise); and group activities that involve movement with others – drumming, dancing, singing.

Staffing is the most critical component in the environment

Staffing ratios must allow for spontaneous, frequent, and responsive interaction. Staff must also be well trained to understand the individual’s experiences, the reasons for the behavior, and how best to interact. Direct care staff must be full members of the interdisciplinary team because their observations are important: they are the ones who spend time with the individual and so have the opportunities to help with recovery from trauma and the learning of new behaviors. Emotionally responsive caregiving will lead to positive change.

Children in Foster Care or Adoptive Families

As stated above, a significant percentage (38%) of children and youths who present as having complex behavior to the Department of Human Services have been in foster care or adoptive families. This raises the question: Are we providing adequate training and support for alternate families to assure success for the family and the child? Children with trauma - and often a diagnosed Reaction Attachment Disorder as well - can be wonderfully compelling to be with but also very difficult to live with. Training, in-home supports, and adequate respite care can be determinant factors. If the individual feels that “no one wants me” or that “I am not good enough to have a family” – this will add to his/her trauma history.

Routines and meaningful activity create stability

Routines that are predictable and reliable can reduce uncertainty and build inner stability. Routines that consist of enjoyable activities foster feelings of competence and success. Building on strengths and preferences increases self-confidence and self-esteem.

More good food and less bad food

This can be a significant challenge with teenagers. However, studies in brain science (the gut-brain connection) have revealed a significant connection between what we eat and how the brain works. Too much caffeine, sugar, and highly processed foods can trigger enzyme and hormonal reactions that interfere with thought processes, sleep, and self-control.

Making sure the individual has someone in his/her life who cares about them

Studies on resiliency have established that having an adult who cares is key. While treatment professionals and direct support staff can fulfil this role to an extent, it will be time limited. A treatment plan should include the identification of any permanent relationship and the strategies needed to nurture and support this relationship, such as: access to the internet, a phone for calling or texting, transportation, etc. The adult or adults who have this permanent relationship should be considered primary members of the interdisciplinary team.5

Individualizing rates

If the provider is to be responsive and to customize their program for a child or youth with complex behaviors, they must have support. We must also recognize that their costs may be greater than the standard reimbursement rate allows. An individually negotiated rate, based on the needs of the child or youth, which can be altered as those needs change, is essential.

And to end: Recognize that you are in this for the long term

Older youth and young adults who have been in numerous out-of-home living arrangements and treatment programs often have no family to go back to and are not eligible for a medical facility. For those in this situation, it makes sense to accept that: 1) work toward recovery may be life-long and will require on-going supports and 2) a living arrangement that will carry the youth into his/her adult years should be part of the planning process. Temporary placements make for a feeling of homelessness and hopelessness.






References

1.      Zero to Three Website. ZERO TO THREE. Accessed November 21, 2021.

2.      Van der Kolk BA. Developmental Trauma Disorder. Traumatic Stress Institute website. vanderkolk.indd (traumaticstressinstitute.org). Accessed November 21, 2021

3.      Facts on Traumatic Stress and Children with Developmental Disabilities. National Child Traumatic Stress Network website. Microsoft Word - Traumatic Stress and Developmental Disabilities_final.doc (nctsn.org). Accessed November 21, 2021.

4.      Hughes PhD D. Building Trust with Children who have been hurt in Relationships. PA Cares Partnership website. Daniel Hughes, Ph.D., Relations Between Complex Trauma and Attachment: How to build relationships | PA Care Partnership. Published June 2021. Accessed November 21, 2021.

5.      Minnesota Longitudinal Study of Risk and Adaptation. University of Minnesota website. Minnesota Longitudinal Study of Risk and Adaptation. Accessed November 21, 2021.



Biography

Ms. Nancy Thaler served as the Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), as the Deputy Secretary for Pennsylvania’s Office of Developmental Programs and is currently serving as Senior Policy Advisor to the Administrator of the US Administration for Community Living.  She has a master’s degree in Human Organization Science from Villanova University.

Contact Information

Nancy Thaler

Senior Policy Advisor

Administration for Community Living, U.S. Department of Human Services

nthaler49@gmail.com