1.3 BEST PRACTICES


With proper behavior management and instruction techniques, individuals with CdLS can be educated aca- demically and vocationally and have meaningful lives as adults in environments supportive of their unique needs. For individuals with CdLS who have behavioral challenges (including those with the most severe behaviors like self-injury and/
or aggression), programs based on Applied Behavior Analysis (ABA) are most likely to suc- ceed. If necessary, a behavior plan should be developed based on a functional analysis of the problem behaviors. 

It is import- ant to define the function of the problem behavior. Treatment procedures should include a structured daily schedule, using direct instructions (not ques- tions), differential reinforcement of appropriate behavior, rein- forcement of desired positive behavior with highly motivated reinforcers for the individual, and the offering of choices whenever possible. Such ABA techniques are applicable to adults as well as children with CdLS. People with CdLS fre- quently suffer from increasing anxiety in adolescence and early adulthood, particularly at times of transition (for example, from school to adult services or from living at home to a residence) or a major life event, like the
loss of a loved one. This anxiety requires effective management, whether psychologically, behaviorally, pharmacologically or through a combination of approaches. Individuals with CdLS are often shy and have significant deficits in social skills. They can be helped by explicit instruction in social skills in various settings, as well as by speech therapy aimed at reme- diating expressive language deficits. 

Those who are mildly affected may benefit from socializing with individuals who are similarly affected (informal support groups, participation in social media networking sites, etc.). If verbal language is limited, many people with CdLS benefit from some type of augmentative communication, such as an object or picture exchange or a communication display device. Transitions are frequently difficult for people with CdLS, and they require careful preparation (consider doing this pictorially as well as orally where appropriate). 

Use of a task analysis or breaking down an activity into sequential steps is beneficial. Individuals with CdLS may benefit from visual picture schedules, e.g., showing what is happening next and removing pictures when a task or activity is finished. Given the wide diversity of people with CdLS cognitively, behaviorally and medically, it is difficult to generalize about the kinds of employment opportunities or adult programs that are appropriate. However, many individuals with CdLS are capable of meaningful gainful employment and/or volunteer work, and the lives of all—no matter how severely affected— can and should include appropriate daytime activities.

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