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5 Early Identification and Interventions for Developmental Disabilities Emerging in Childhood
Pages 37-48

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From page 37...
... ENSURING QUALITY AND ACCESSIBLE CARE Heather Johnson, acting director and chair of the Family and Women's Health Nurse Practitioner Programs at the Uniformed Services University of the Health Sciences (USUHS) Daniel K
From page 38...
... For example, the nurse practitioner students at USUHS receive training on typical and atypical development, 504 plans, individualized education programs, individual family service plans, and advocacy for children. Another lesson is that parents have a major role as advocates and not just bystanders, Johnson said.
From page 39...
... Yet white students, who make up only 9 percent of the student body, represent 30 percent of the ASD population in Los Angeles public schools. "Disparities are real," she said.
From page 40...
... , problem behaviors are more common in individuals with ASD than same-age peers, observed Nathan Call, director of the Severe Behavior Program at the Marcus Autism Center in Atlanta. Common problem behaviors include aggression, tantrums, self-injury, disruptive behavior, property destruction, pica (the persistent eating of nonnutritive items)
From page 41...
... "They end up being dropped off in an emergency room, or if they are lucky, they end up in an inpatient or residential psychiatric center." The Severe Behavior Program at the Marcus Autism Center focuses on producing long-term effects, which requires several treatment components, said Call. The first is function-based treatments.
From page 42...
... Many have a host of other issues with which they must deal, such as poverty, underemployment, lack of social supports, or barriers to treatment success. The Severe Behavior Program at the Marcus Autism Center does preadmission assessment of the home environment and identification of barriers to treatment success, with care coordination to provide wrap-around services.
From page 43...
... "This is just one more area that needs to be clarified," Call said. IMPROVING THE QUALITY OF POLICIES A variety of policies, from the Community Mental Health Act and Medicaid in the 1960s to the Mental Health Parity Act and the Affordable Care Act in the past decade, have affected people with ASD, noted David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania's Perelman School of Medicine.
From page 44...
... Furthermore, the effects of community intervention on children with autism are, according to Mandell, "woefully small." The effect size of usual care on improving cognition is just 0.26, and the effect sizes on adaptive behavior, improvements in social ability, and improvements in communication are also small. "Whatever we're providing in community care is not meeting the benchmark that we've established in efficacy trials.
From page 45...
... developed by the National Institutes of Health, Johnson pointed out that one of the difficulties with the database is the lack of people who can translate information into practices that can be implemented in schools, homes, and communities. Mandell added that NDAR has "beautiful clinical characterization" for understanding clinical features of people with autism, but "if you want to look at trajectory and treatment effects, it's not a good database." One problem he identified is that a standardized set of instruments does not exist for measuring treatment components or fidelity of implementation.
From page 46...
... " For example, Johnson continued, specific reading interventions might improve phonemic awareness or fluency, "but what we don't have is meaningful data showing that this intervention or this combination of interventions improves the ability to read, including understanding and being able to articulate back to somebody what was read." Call pointed out that caregivers are highly constrained by the options that are available to them. They tend to put much of their effort into wellknown interventions that they consider effective while also devoting some time to less substantiated approaches.
From page 47...
... EARLY IDENTIFICATION AND INTERVENTIONS 47 of outcome measures and committed to sharing data so that everyone can learn from each other's practices. The challenge for the autism community is agreeing on the important outcomes not only within the medical setting, but also within the other settings in which children live, including their schools and homes.


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