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Rule Out Model for the Early Identification and Treatment of Children with Developmental Disabilities
2. Rule Out Model for the Early Identification and Treatment of Children with Developmental Disabilities Tools for Early Identification and Intervention- 0-5 years By James J. Messina, Ph.D.
Rule Out Model for the Early Identification and Treatment of Children with Developmental Disabilities
Rationale and Strategies for Early Identification
O-3 Brain Research
When addressing the potential for the presence of a developmental disorder in children, it is imperative to remind us of the well-publicized data coming out on the newborn developing brain. Using powerful new research tools, including sophisticated brain scans, scientists have studied the developing brain in greater detail than ever before. Five major findings from these studies summarized in the Carnegie Corporation’s 1994 report, "The Quiet Crisis: Starting Points for Meeting the Needs of our Youngest Children," are worth noting:
·The brain development that takes place during the prenatal period and first year of life is rapid and extensive
·Brain development is much more vulnerable to environmental influences than previously known
·Influence of early environment on brain development is long lasting
·Environment affects not only the number of brain cells and the numbers of connections between them, but also the ways these connections are "wired"
·There is a negative impact of early stress on brain function.
The Carnegie report concluded to utilize these advances in understanding the young developing brain, four key areas that constitute the vital starting points for our youngest children and families must be addressed. They are:
·Promote opportunities for responsible parenthood
·Guarantee quality child care choices for children under three
·Ensure good health and protection of infants and children
·Mobilize communities to support young children and their families
Young children not only have the basic needs for safety, nourishment, warmth and nurturing but also the need for cognitive, social and emotional stimulation. Research, through its stunning revelations about human development from birth to three, confirms the importance of the critical role that parents and caregivers play in a child’s development. The importance of the first three years of life lies in the pace at which the child is growing and learning. In no other period do such profound changes occur so rapidly. The newborn grows from a completely dependent human being into one who walks, talks, plays and explores. The three year old is learning and, perhaps more important, learning how to learn. Brain research indicates that preschoolers are able to learn to:
·Interact with computers
·Learn foreign languages
·Learn abstract thinking processes during the time their brains are still in the growing phase of life.
At age three, children can, given good care and sufficient stimulation, attain a high degree of "competency." Competent three-year-olds are:
·Self confident and trusting
·Able to use language to communicate
·Physically and mentally healthy
·Able to relate well to others
·Empathic towards others
Many children with these communication and learning disorders have not accomplished these competencies by their third birthday. There is a need to continue to provide them stimulating, nurturing and developmentally relevant learning environment so as to "catch up" to those competencies, which they are expected to have achieved prior to entering a five year old, Kindergarten. Early Intervention Programs need to take into account the relevant information from brain and cognitive research in developing a learning environment, which will enhance and remediate the competencies of these developmentally delayed students.
A group of neurologists have made this bold declaration: "Children whose neural circuits are not stimulated before Kindergarten are never going to be what they could have been" (Newsweek1996). Scientists know the following about the developing brain that:
·A baby is born with all the brain cells he/she will ever have, but with relatively few connections--called synapses--between these cells
·During gestation, neurons are created at a rate of 250,000 per minute
·The average number of neurons a child is born with is 100 billion
·Neurons, which are used, are integrated into the brain’s living circuitry. Unstimulated neurons die
·Synaptic connections are forged by the growing child’s experience with the surrounding world
·In the first year of life, a child generates up to 15,000 connections to each one of the 100 billion brain cells
·By age two, the number of synapses reaches adult levels and surpasses them between ages four and ten
·A child’s brain has twice as many neurons, twice as many connections between them and is twice as energetic as an adult brain
·At six years of age, the brain has reached its full weight of about three pounds, tripling its weight at birth and that the gain is caused, in main, by growth of the cells
·The brain remains a work in progress during childhood
·The developing brain is so robust that it sometimes can overcome even severe physical trauma.
·Neurons physically blossom in response to stimulation like a flower responding to sunlight
·The period prior to six years of age is a critical period in which the brain develops vision, language, muscle control, emotional response and reasoning ability
·That learning is a powerful enriching influence on the brain’s cells. The brain of an active college graduate may have up to 40% more neural connections when compared to that of a high school dropout
·The brain is hungry for stimulation and with proper attention early enough in life, scientists have proven that they can raise a disadvantaged child’s IQ 30 points, cut the risk of some forms of mental retardation in half and correct common learning disabilities
·Conversely, denied proper stimulation, the brain atrophies and its neural connections wither like dying leaves (Hotz, 1997).
The developing brain is so malleable it can incorporate behavioral problems into its circuits as readily as it might pick up a love of music. For this reason, preschool programming, which is focused on the children with communications and learning disorders, should provide enough neuron energizing activities as possible to insure that these developing brains do not atrophy. Caine and Caine (1991) detail a number of strategies to utilize the advance in brain research in the restructuring and design of curriculum in teaching students with developing brains. They emphasize learning strategies, which are based on the following concepts:
·Engaging the entire physiology
·Recognizing that the search for meaning is innate and occurs through patterning
·Involving the emotions which are critical to patterning
·That the brain simultaneously perceives and creates parts and wholes and
·That the brain is a parallel processor.
Early Identification Strategies
Children should be identified as soon as possible for assessment of a suspected communications and learning disorder from 12 months of age on if they display any warning signs for developmental delay. It is imperative to have these children receive developmental assessment as soon as possible from developmental specialists. It is clear that at present there are no "cures" for these disorders but when children receive appropriately structured early intervention programs in their early years this can enhance their functioning in later life (Howlin, 1997). In most cases a multidisciplinary approach to early intervention is recommended due to the behavioral and developmental aspects involved in these disorders (Williams & Bloom, 1999). Unique methods of early identification have been researched such as analysis of body movement of infants (Teitelbauum et al. 1998) and analysis of infantile urine (Huang, 1999).
Carnegie Corporation (1994). The Quiet Crisis: Starting Points for Meeting the Needs of our Youngest Children.
Hotz, R. L. (1996). Deciphering the Miracles of the Mind, Los Angeles Times, October 13.
Howlin, P. (1997). Prognosis in autism: do specialist treatments affect long-term outcome? European Adolescent Psychiatry June;6(2):55-72.
Huang, C. (1999). Urine Test Diagnoses Newborn Cerebral Palsy. The New England Journal of Medicine 341:328-335, 364-365.
Newsweek, "Your Child’s Brain," February 19,1996
Teitelbaum, P., Teitelbaum, O., Nye, J., Fryman, J., & Maurer, R. G. (1998). Movement analysis in infancy may be useful for early diagnosis of autism. Proceedings of the National Academy of Sciences, USA November 10;95(23):13982-13987.
Williams, P.G. & Bloom, A. S. (1999). Case reports in autism: issues in diagnosis and treatment. Journal of Kentucky Medical Association February;97(2):56-60.
Overview of Rule Out Model of Diagnosing Developmental Disabilities
What are Developmental Disorders?
These disorders are any neurologically, emotionally, or physically based behavioral issues, which keep a child from interacting normally with his or her peers and/or keep a child from learning skills or knowledge that his or her peers are learning. They often involve:
·The lack of full coordination of gross and fine motor skills and poor motor planning
·Lack of age appropriate speech, language and communications skills
All of these disorders involve limitations or deficits in many of the same areas of developmental functioning, such as:
·Speech and/ or language
·Motor planning (sequencing of actions or behaviors)
·Social interactions and social relatedness
·Cognition & perceptual functioning (visual, auditory and kinesthetic).
Although label help to get funding for services, I have found in my practice that it is more important to adopt broader "functional descriptions" with broader eclectic intervention and treatment options to accommodate for each individual child’s needs, rather than the child accommodating to the unitary treatment approaches offered. Each child, no matter what label or diagnosis given by behaviors, displays unique patterns of functional deficits and must be treated as an individual rather than as a "child with a diagnosis."
A way to avoid premature incorrect labeling
Labels or diagnostic categories are needed because:
·Third party payers demand a "label" for reimbursement
·Parents often demand and find comfort in a label. They insist on knowing what's wrong and what the prognosis is.
The "RULE OUT" approach recommends a step wise model of assessment and intervention with developmental disabilities. Step One: rule out all physiological problems which might be the real reasons for the observed behaviors. Step Two: rule out all sensory, motor planning and cognitive issues which might be the real reasons for the observed behaviors. Step Three: rule out other potential social, emotional, cognitive, sensory, motor, familial issues which might be the real reasons for the observed behaviors. Step Four: rule in what remains unchallenged to explain the reasons for the observed behaviors.
By using the Four Step Rule Out Model, we can clearly identify those behaviors, which are modifiable and potential ways to modify them. This will avoid pre-mature labeling incorrectly. Once all factors have been ruled out and only the relevant factors have been ruled in, then and only then can an accurate diagnosis and intervention program be offered.
What constitutes "Rule Out Model" Assessment Team
General Team Evaluation by a Developmental pediatrician anddevelopmental clinical diagnostician
Developmental Screening by Treatment Team consisting of, as needed, a child developmental psychologist, speech pathologist, occupational therapist, special education specialist, social worker, child development specialist and a developmental pediatrician or pediatric neurologist.
"Rule Out" Rules within the Assessment Process
In having a child assessed for a developmental disability it is imperative that the developmental team:
·"Rule Out" all physiological or bodily dysfunctions
·"Rule out" all relevant sensory, motor, motor-planning and cognitive dysfunctions
·"Rule out" all social, emotional, cognitive, sensory, motor and familial issues
·"Rule in" all levels of the child's functioning before finalizing a plan of action to insure that only those issues which could not be "rule out" are the reasons for the observed developmental delays or problems
Recognize that ongoing setbacks for children in current intervention programs may be due to the presence of Physiological-Sensory-Motor planning issues, which have not been adequately identified previously.
Rule Out Step Two: Sensory, Motor, Cognitive Factors
Rule out: Vision problems, Hearing problems, Auditory and Visual Perceptual & processing problems, Motor control or motor planning problems, Sensory Integration problems, Intellectual and Cognitive functioning and potential
Rule Out Step Three Social, Emotional, Cognitive, Sensory, Motor, Familial issues
Rule out: Cultural deprivation, physical abuse or neglect, failure to thrive, impulse control problems, learning disabilities
Rule Out Step Four - Rule in what remains as not ruled out
Rule in: remaining issues which have not been ruled out as the cause of the observed behaviors and functioning and planned a relevant treatment intervention based on the "rule in" factors.
Ideal Intervention Components
What is needed in providing appropriate intervention services for children with developmental disabities is to have them enrolled in programming, which is inclusionary in nature. Such programming should be eclectic and involve components many of the following components, which are selected to meet the needs of the individual children:
Overall Social/Relational Approach:
·One on One Communications play i.e. Floor Time
Language and Communication:
·Speech & Language Therapy
·Listening and auditory processing programs
·Oral motor therapy
·Meliorate processing deficits through remediation
·Sensory modulation with a sensory diet to desensitize the child to a gradual increase of external sensory stimuli
·Oral motor therapy
·Motor planning intervention
·Applied Behavioral Analysis
·Discrete Trial Learning
·Behavioral modification and intervention
·Medication for seizure, or neurological disorder in child
·Food allergy control
·Improving eating patterns
Rule Out Step 1
Rule Out Step 1: Background on Physiological Characteristics
These are the genetic and fundamental biochemical and structural components of the child’s body, brain, and nervous system that are essentially unchangeable. Note that certain aspects of the biological state may be predictable and/or preventable at some earlier point in development and as technology improves may indeed be modifiable. However, at the current state of the art, we must regard them as unmodifiable. The components of the biological state are DNA (basic genetic structure), brain and nervous system, sensory and motor organs, the immune system and all other biological systems.
Genetics: Advances have been made to find the genes involved communications and learning disorders (Folstein, Bisson, Santangelo & Piven, 1998). There have been findings that relatives are affected by difficulties that appear conceptually related to these disorders (Bailey, Palferman, Heavey & Le Couteur, 1998 & Gilberg, 1998).
Brain Structure: Research has demonstrated that the brain of people with communication and learning disorders is structurally different from the normal brain. They found abnormalities in the cerebellar vermian lobules, parietal lobe, and the posterior regions of the corpus callosum (Saitoh & Courchesne, 1998) as well as intrinsic neocortical dysfunction present in autism (Minshew, Luna & Sweeney, 1999) and the frontal area of the brain as most involved in ADHD (Zametkin et al.1990).
Sensory Motor: Positron emission tomography (PET) researchers have shown abnormalities in the language and auditory perception areas of the brain in people with these disorders (Muller et al. 1999).
Neurotransmitters: Levels of neurotransmitters such as serotonin and beta-endorphin have been found to be indicative of the presence of autism and other communication and learning disorders (Chugani et al. 1999, and Leboyer et al. 1999).
Autoimmune Disorder: Research seems to support the hypothesis that a virus-induced autoimmune response may play a causal role in autism and other communications and learning disorders (Sing, Lin, & Yang, 1998; Comi et al., 1999; & Connolly et al., 1999).
All of the research to date comes to the prevailing view that many of the communication and learning disorders are caused by a pathophysiologic process arising from the interaction of an early environmental insult and a genetic predisposition (Trottier, Srivastava, & Walker, 1999).
Other factors which impact the physiological state of a child
A child's physiological state is constantly acted upon by environmental factors. Recently, researchers have investigated how use of antibiotics (Bolte, 1998), abnormal sleep patterns (Patzold, Richdale & Tonge, 1998), diet (Carlsson, 1998), medical illness (Volkmar, 1998) and epilepsy (Kobayashi & Murata) have exacerbated the developmental functioning of children. These external factors include:
·The Womb Environment: the mother's nutrition, stress, antibiotics, drug use-street or prescribed, alcohol or tobacco abuse, diseases (HIV, CMV, chicken pox etc.), radiation exposure (pre or post conception)
·The Environment: air, water or noise pollution, vanishing ozone layer, other noxious stimuli
·Medical Interventions: vaccinations, inappropriate antibiotics for otitis media (ear infection) or pharyngitis (sore throat)
·Intentional modifying factors: brain surgery, medications such as neurotransmitters, endocrine agents, anti-seizure drugs, steroids
·Plus other, not yet identified primary therapies that directly manipulate the biological state and impact on primary traits.
Typically biochemical interventions are generally targeted at this results of these impacting factors to modify an identified or theorized physiological dysfunction.
Step 1: Physiological Assessment Approach
This assessment should examine: metabolic abnormalities, brain lesions, seizure activity, and immune disorders. Plus the impact of outside factors such as: biochemical stressors, contaminants, medications, etc.
PhysiologicalState Assessment should include:
·Pediatric neurological evaluation
Services Needed for Physiological State of Child
To address the physiological factors the follwoing might be needed: Brain Surgery, Nutrition therapy, Immune Suppression Medications, Anti-seizure Medications, Stimulant Medication (Ritalin, Cylert, Adderol)
Rule Out Step 2
Rule Out Step 2: Sensory Motor and Cognitive Components
All children have biologically based "individual differences" with regards to theirmotor, sensory, reasoning, and affective patterns, etc. These traits may or may not be modifiable, depending upon where the child is in the developmental biological life cycle. The earlier one intervenes with the child, the more likely that one can modify these traits. The earliest possible intervention is important to increase the chance of modifying any trait.
These traits, for the purposes of early evaluating and treating can be represented as strengths or weaknesses in i.e.:
·Motor planning and sequencing
·etc, etc, etc
Factors which impact sensory, cognitive and motor functioning
Sensory stimuli from the environment and all individuals who interact with the child can impact the functioning of sensory, cognitive and motor traits. These external factors include:
·Parents, siblings, caregivers and peers
·TV, radio, games, etc.
·All other tactile, auditory, visual, gustatory and olfactory stimuli
·Interactions with therapists
The interactions of the child with all these personal, interpersonal and sensory/communications factors can result in dysfunctional behaviors. For most children the external factors impacting their physiological state, sensory, cognitive and motor traits are sufficient to produce constructive, socially appropriate behaviors and allow the child to progress appropriately through the developmental levels. However for children at risk for a developmental disorder these modifiers can result in more dysfunctional behaviors.
Step 2 Assessments
This assessment should examine strengths and weaknesses in functioning in:
·Auditory reception and processing
·Visual-spatial perception and processing
·All other sensory input and processing modes
·Plus: cognitive functioning, speech and language, motor planning
The impact of external factors needs to be identified, especially with respect to:
·Caregivers Interactions with Child
Children's sensory, cognitive and motor traits need at the same time of the recommended medical evaluations the following screening:
·Audiological/Central auditory processing/hearing evoked potential evaluation by pediatric Audiological specialist
·Visual acuity/visual-spatial processing evaluation by pediatric visual specialist
·Intellectual, cognitive, or developmental functioning evaluations
Services Needed to Address Sensory, Cognitive and Motor Traits
There are three (3) areas which are the direct result of the child’s physiological state plus sensory, cognitive and motor traits and the basic interactions with his caregivers and the environment. They are:
1. The child’s developmental level
2. “Normal” coping behaviors
3. “Abnormal” coping behaviors
It must be true that, if we were to know the child’s physiological state, sensory, cognitive and motor traits, all of the relevant impacting factors on them and the developmental level, then all observed "dysfunctional" behaviors would be understood as predictable given the entire scenario. Unfortunately, many diagnoses are made only on observed behaviors with no consideration for the issues address in steps 1 and 2. . This can be very misleading, since many of these "abnormal" behaviors may be caused by very different combinations of physiological state and sensory, cognitive and motor traits and their interaction with relevant impacting factors. This combination of issues identified in steps 1 and 2 requires VERY different intervention strategies to be successful.
Secondary Behaviors which are a result of the interaction of the physical state, sensory, cognitive and motor traits and impacting factors include:
·Socialization: (unusual responses to sensory stimuli, resistance to change and insistence on routines, difficulties with typical social interactions, social and emotional unrelatedness, stereotyped behavior - routines, rituals and attachment to objects, lack of eye contact).
·Fine Motor Skills: (clumsiness, poor pencil grip, poor letter formation): Impaired fine motor skill, including dysphasia and apraxia, impaired motor planning, Hypotonia - low muscle tone, soft ears, double jointed, upper body weakness
Developmental Level and Executive Developmental Functions:
The four executive developmental functions are a result of the interaction of the physiological state, sensory, cognitive and motor traits and external impacting factors. Executive functions are any behaviors, which serve to organize a series of events over a long period of time, i.e.:
Prolongation: Holding & evaluating events in working memory
Separation & regulation of affect: Splitting facts from feelings
Internalization of language: Reflection, self-control, will power
Reconstitution: Break events into parts and reassemble into new ideas
Diminished proficiency in executive functions may contribute to a developmental disorder by leading to:
·Deficient self-regulation of behavior, mood, response
·Impaired ability to organize/plan behavior over time
·Inability to direct behavior toward the future
·Diminished social effectiveness and adaptability
Theory of the Mind Research Addresses Learned Behaviors
Theory of the Mind (TOM) research offers an explanation for the social, cognitive, and communicative impairments of children with developmental disorders (Baron-Cohen, 1996; Happe, 1995, 1997; Tager-Flusberg & Sullivan, 1994). TOM is the ability to understand the mental states of the self and others, including such states as wanting, feeling, believing, and thinking (Baron-Cohen, Leslie, & Frith, 1985; Bartsch & Wellman, 1995 through the acquisition of such skills as eye contact and joint attention (Greenspan, 1995). Children with these disorders seem to develop these early TOM related abilities much later in age (Sparrevohn & Howie, 1995) and have problems generalizing these abilities beyond the tasks, due to the lack of the sense of "self" for lack of healthy social contexts and contacts with the community (Hadwin, Simon Baron-Cohen, Howlin, & Hill, 1997).
The dysfunctional behaviors typical to children with developmental disabilities evoke responses from everyone the child interacts with: parents, friends, but also society in the form of schools, public places, legal system, the community at large, etc. Their responses help modify these dysfunctional behaviors. In the case of abnormal behaviors inappropriate intervention will further damage the child’s functioning. Some inappropriate interventions are:
·Sole use of drugs to control behavior
·Isolating the child in a locked facility
·Restricting the child to a special needs environment and not including "typical" children
These inappropriate interventions can lead to even more disruptive behaviors
Step 3 Assessments
The child’s "developmental level of functioning" must be assessed at this step of the rule out process. A determination must be made of how the child’s physiological state, sensory, cognitive and motor traits have interacted with the caregivers and the environment to bring the child sequentially through the essential developmental levels.
Assessment used in Step 3 include:
·Individual developmental evaluation and observation of child
·Observation of parent(s) - child interaction
·Developmental history, with history of marriage, family and parents’ own families
· Functional assessment of Child
·Assessment daily functioning in activities of daily living
·Developmental assessment or intellectual assessment
Additional assessments needed to do a complete diagnostic work up:
Physical therapy evaluation
Educational achievement in reading and math/processing/perceptual evaluation
Services Needed at Step Three
Discrete Trial Learning, Play Therapy, Parent Training, Child and Behavioral Management, Organizing Skills Training, Study Skills Training, Social Skills Training, Tutoring, Language Enhanced Classroom, Inclusion Classroom, Classroom Modifications, Resource Room, Contained Treatment Setting, Medications (last resort).
Rule out Step 4: Rule in what remains as True
Step 4: What Remains is Ruled In
If we have been successful in exhaustively ruling out the physiological conditions and the sensory, cognitive and motor traits as reasons for the observed dysfuctional behaviors then we have ruled out quite a bit. Once we rule out all the extenuating factors which impact the functional capacity of children we have rule out more. What we have left then are the behaviors, factors, and traits which consitute the real problem.
Need for Inclusive Educational and Social Programming to Address Dysfunctional Behaviors
There have been a number of effective programs of early intervention with children with these dysfunctional behaviors. There are the behavioral (Lovaas, 1981, 1987), highly structured (Campbell, Schopler & Hallin, 1996; Miller & Miller, 1989, 1991 & 1992; Rogers & Lewis, 1989; Schopler, Mesibov & Hearsey, 1995; and Strain & Hoyson, 1988), multidisciplinary (Robinson, 1997), and relational (Weider, 1992, 1996). Research has demonstrated programs for children with these dysfunctional traits which have been effective in facilitating communication (Bondy & Peterson, 1990; Greenspan, 1992a; Greenspan and Wieder, 1997, Greenspan and Wieder, 1998), decreasing inattention and irritability (DeGangi & Greenspan, 1997), improving cognitive and social skills (Olley, Robbins, Morelli-Robbins, 1993), and creating generalization and maintenance (Stokes & Osnes, 1988) but these all have been self-contained programs which did not include socialization with typical children.
Research seems to indicate that there is a way to prevent dysfunctional behaviors from developing and that is by placing children with these disorders in "inclusion environments" in which they can gain the positive social and communications role modeling of typical peers. Mesibov (1984) suggests that many children with these disorders may exhibit social deficits because they have few friends and limited opportunities to socialize with peers. Evidence from previous studies demonstrates that children with these disorders are responsive to social stimuli. Strain et al. (1979) and McHale (1983) both found increases in social behavior when peers actively engaged children with these disorders in social interaction. Research also demonstrates that children with severe disabilities as well as their typical peers make gains, in language, cognitive, social and motor and other developmentally appropriate skills, when fully included with typical children, as compared to self-contained preschool classrooms. (Bricker and Cripe 1992; Carlberg & Kavale, 1980; Fewell and Oelwein, 1990; Giangreco et al. 1993; Harris, Handleman, Kristoff, Bass, & Gordon, 1990; Hoyson, Jamieson, & Strain, 1984; Mahoney, G., C. Robinson and A. Powell 1988; Mahoney and Powell, 1992; Odom and McEvoy, 1988; Peck, et al, 1993; Roeyers, 1996; Strain & Kerr, 1981; Wang and Baker, 1986; & Yoder, Kaiser and Alpert, 1991). Effective and creative curriculum, which insures inclusion of students with learning differences, has been documented (CISP, 1997; Sizer, 1992; & Onosoko and Jorgensen, 1997)
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