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Maintaining Safety and Planning for the Future
Insights
This case study highlights safety concerns for a child with autism spectrum disorder and intellectual disability. It emphasizes the need for enhanced safety measures and future care planning for vulnerable individuals.
Area of Science:
- Developmental Pediatrics
- Behavioral Psychology
- Disability Support Services
Background:
- A 12-year-old boy with autism spectrum disorder, intellectual disability, and attention-deficit/hyperactivity disorder requires ongoing medical and behavioral management.
- He lives with his great-great-aunt, his legal guardian, who has health issues and is in her mid-70s.
Observation:
- The child exhibits concerning behaviors, including nocturnal wandering and attempting to "cook" unsupervised.
- Safety interventions such as door alarms and GPS devices have been implemented with varying success.
- The guardian is hesitant to explore residential care options due to fears of separation and mistreatment.
Findings:
- The current home environment presents significant safety challenges due to the child's behaviors and the guardian's limitations.
- The lack of a robust safety plan and the guardian's reluctance to consider external support pose risks.
- There is an urgent need for comprehensive planning to ensure the child's long-term safety and well-being.
Implications:
- Recommendations should focus on supporting the guardian, enhancing in-home safety, and addressing her concerns about residential care.
- Exploring respite care, in-home support services, and specialized training for the guardian may be beneficial.
- Facilitating open communication with the guardian regarding long-term care options and ensuring her involvement in decision-making is crucial.
Case:
Kevin is a 12-year-old boy with autism spectrum disorder, intellectual disability (nonverbal IQ scores in mid-40s), and attention-deficit/hyperactivity disorder who has been followed up by a developmental-behavioral pediatrician (DBP) and a child psychologist for medication and behavioral management since he was 4 years old. Kevin was placed in the care of his great-great-aunt shortly after he turned 2 years of age because of concerns of neglect. She is now his legal guardian.Kevin is predominately nonverbal but does use a few single words to make requests or label items. He attends a public school and receives full-time special education support. He has a personal care assistant (PCA) who provides in-home support 5 to 6 days/wk for 3 to 4 hours at a time. The PCA is working on toilet training, using a "clock-training" approach, and also takes Kevin outdoors to play or on short outings during her visits. In his free time, Kevin prefers to watch cooking shows on television.Over the past year, Kevin's behaviors have become more concerning. There have been several episodes of Kevin waking up during the early morning hours and going to the kitchen to "cook." After one of these episodes, his guardian was not aware that Kevin had woken up until the next morning when she found a concoction of corn starch, coffee grounds, cottage cheese, and powdered drink mix in the blender. Kevin had also woken up during the night and ventured out of the house into the back yard. His guardian had woken up immediately as the alarm system sounded when he opened the outer door from the house to the yard.A door alarm was added to Kevin's bedroom door so that his guardian would be alerted when he leaves his bedroom; however, the alarm is not used consistently because there are times when the alarm cannot be found at bedtime. Kevin's guardian was able to obtain a GPS device for him to wear on his shoe from the local police department. He wears this without resistance every day.Kevin's guardian is in her mid-70s, and she has had several health issues over the past 2 to 3 years. There are no other family members who are willing or able to care for Kevin if his guardian were no longer able to. The DBP and child psychologist have encouraged Kevin's guardian to explore long-term residential care options with the state agency that provides support for individuals with intellectual disabilities and with Kevin's insurance provider, but the guardian is very reluctant to do this. She fears that Kevin will be removed from her care or placed in a "home" where someone will "do bad things to him."What else would you recommend or actions would you take to support Kevin's guardian in ensuring Kevin's safety and planning for his future care?
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