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Accessing Supportive Services: Parents Caring for Children with Autism Spectrum Disorder
| Content Provider | Semantic Scholar |
|---|---|
| Author | Keegan, Karen |
| Copyright Year | 2016 |
| Abstract | This qualitative research study focuses on exploring parent's strengths, challenges, and experiences of accessing supportive services when caring for a child with Autism Spectrum Disorder (ASD), also known as autism. Previous research has discovered gaps involving resource supportive services, navigation, and formal support systems for parents when seeking additional care for their child with ASD. Four caregivers (three women and one man) were recruited and completed a series of interview questions. This study's findings suggest that the above gaps remain present along with challenges ranging from the difficulties of interacting with other care systems, cost of services, lack of knowledge and service delivery from professionals, the need for a key worker to assist with navigation and coordination of services, and the desire for more general awareness and empathy for those managing ASD. Acquiring a better perspective as to what accessing supportive service involves will assist professionals working within the field to advocate and identify the most effective treatment options and service needs for families. Social workers also need to have a louder voice within the ASD community in order to help create change in the larger systems of medical and metal health care and support the individual needs of all families served. ACCESSING SUPPORTIVE SERVICES iii Acknowledgments For their unwavering support and guidance, I give the biggest thank you to: Research chair, Dr. Michael Chovanec and committee members Kaitlin Barrett, MSW, LGSW, and Karen Janey, BS. Research Participants. Family. Friends. Coffee. ACCESSING SUPPORTIVE SERVICES 1 Table of Contents Abstract i Acknowledgments ii Table of Contents 1 Introduction 2 Literature Review 7 Conceptual Framework 24 Methods 28 Findings 35 Discussion 47 Researcher Reaction 52 Limitation and Recommendations for Future Research 52 Implications for Social Work 54 Conclusion 57 References 59 Appendices Appendix A: Recruitment Flyer 63 Appendix B: Qualitative Interview Questions 64 Appendix C: Research Study Consent Form 68 Appendix D: Additional Resources and Contacts for Participants 71 ACCESSING SUPPORTIVE SERVICES 2 Accessing Supportive Services: Parents Caring for Children with Autism Spectrum Disorder The lobby has become quiet, and only the administrative assistant, myself, and two young boys at the ages of 2 and 5 remain. The boys peer out the window, slightly anxious for their mother to arrive. As the familiar van rushes into the parking lot, we gather up a number of items, including lunch boxes, coats, art projects, and daily forms describing their current treatment goals. The boy's mother hurries inside, and while catching her breath, apologizes for her late stay at the hospital between hugs with her boys. Speaking briefly about their therapy day, we are interrupted by the oldest son throwing his lunch box and crying out. After over eight hours of therapy, he has exhausted his patience and is making sure we are aware he's finished. Their mother and I spend the next five minutes redirecting behavior, gathering up thrown items, and calming the oldest son. As we begin the walk outside, we start to discuss both of the boys' days and the progress they have made in their treatment plans. Their mother begins buckling them into their car seats as I begin to suggest skills to work on at home. Both boys begin to protest at having to wait for their snack in the car. Their mother sighs and asks them to be patient and use their words, but they continue to protest as I go to place their items in the front seat. I open the car door and daily forms from our previous day's together flutter to the ground from a large pile left on the seat of the car. The boys' mother meekly states that she needs to review the forms and then recycle them. Again, I attempt to suggest skills to work on at home, however, she appears distracted and provides me a quick nod, halfACCESSING SUPPORTIVE SERVICES 3 smile, and states, “we'll see you tomorrow.” I close the passenger door as she quickly drives off. The Centers for Disease Control and Prevention's (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network, supports programs helping to research the number of children with an Autism Spectrum Disorder (ASD) diagnosis in communities within the United States. They alarmingly found that 1 in 68 children are identified as being diagnosed with ASD. The CDC states, “This new estimate is roughly 30% higher than the estimate for 2008 (1 in 88), roughly 60% higher than the estimate for 2006 (1 in 110), and roughly 120% higher than the estimates for 2002 and 2000 (1 in 150),” (Centers for Disease Control and Prevention, 2014). ASD is a complex developmental disability that impacts one's social, communicative, learning, and behavioral abilities. These impacts can create numerous challenges ranging from struggles with completing simple interactions with others, emotional regulation and to completing daily living skills (Centers for Disease Control and Prevention, 2014; Hoogsteen & Lynne, 2013; Foxx, 2008; Minnesota Department of Health, 2013; Spreckley & Boyd, 2009). Although ASD varies dramatically in characteristics and severity, it impacts individuals on an international level with differing socioeconomic statuses, ages, and ethnicities (Centers for Disease Control and Prevention, 2014; National Institute of Health, 2015). Understanding these social and economic impacts has become critical due to this rapid increase in diagnoses over the past twenty years. Growing research has stressed the need for early intensive behavioral intervention for children with ASD; however, the costs for intensive therapy treatment can range from $40,000-$60,000 per year (Centers of Disease Control and Prevention, 2014; Hewitt et ACCESSING SUPPORTIVE SERVICES 4 al., 2013). These costs balloon further, and the economic impacts of caring for children with autism become substantial. Lavelle et al., (2014) found these additional costs involving health care, ASD related therapy, family coordinated services, education, and caregiver time, totaled to $17,081 per year. They then applied these costs to the projected 673,000 children, ages 3-17 years, living in the United States with an ASD diagnosis and discovered that the total societal costs of caring for these children was estimated to be $11.5 billion dollars in 2011 (Lavelle et al., 2014). Knowing that autism can at times be challenging to manage, along with its high treatment costs, the need to gather further information on families affected by this diagnosis and service delivery becomes critical. According to the CDC, children can be diagnosed with ASD as early as two years of age; however, most children do not receive a formal diagnosis until the age of four. Caregivers typically notice differences within their child's development, such as fine motor skills, social communication, and vision/hearing impairments around the age of one (Centers of Disease Control and Prevention, 2014). A wide variety of literature has found that parents experience feelings of confusion, loss, being overwhelmed, fatigue, and burnout during the diagnostic assessment process and also after receiving a formal diagnosis (Hoogsteen & Woodgate, 2013; Mulligan, Macculloch, Good, & Nicholas, 2012; O'brien, 2007). Some research studies have also discovered gaps regarding resource supportive services, navigation, and formal support systems for parents when seeking additional care for their child with ASD. (Hoogsteen & Woodgate, 2013; McConachie & Robinson, 2206; Mulligan et al., 2012; O'brien, 2007). Research has shown these gaps exist, and continuing to attain a better understanding of what these ACCESSING SUPPORTIVE SERVICES 5 barriers are and how to effectively address them will help professionals working within the field to better serve parents caring for children with ASD. Another complex element involved with parents navigating the next steps of the healthcare process for their child after a formal diagnostic assessment, is determining what therapy services would be most appropriate. After reviewing research of early intensive behavioral intervention therapy techniques and methods, one of the central themes discovered was the necessity for comprehensive early intervention and early diagnosis (Ortega, 2010; Rabinovich & Labat, 2006 Zachor & Itzchak, 2009; Foxx, 2008; Zachor, Itzchak, Rabinovich & Labat, 2006). However, narrowing what method of therapy will improve cognitive functioning, language development, and adaptive behaviors, continues to be researched and debated. This can potentially lead parents to not only experience further pressures in choosing appropriate therapy methods but also emotional stress and confusion. Due to caregivers experiencing heightened stress, fatigue, role changes, and being generally overwhelmed when caring for a child with ASD, the need to explore parents' own unique challenges with requiring social services, respite, and additional help for themselves also becomes imperative. As a result of the complex nature of caring for and treating a child with autism, it becomes apparent that the social work profession needs a stronger voice within the ASD community. Social workers provide supportive services to a wide variety of vulnerable populations, along with therapy, care coordination, advocacy/policy changes, and resource navigation. Applying these skills, as well as social work professionals' ability to work with multi-disciplinary teams, acts as a significant resource for parents caring for children with ASD. With the diagnostic process and healthcare coordination of services ACCESSING SUPPORTIVE SERVICES 6 being intensive, having a social worker as an additional foundation of support and advocate for parents becomes critical. Recent research has concluded that many social workers lack specific knowledge of ASD and competencies nee |
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| Alternate Webpage(s) | https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1615&context=msw_papers&httpsredir=1&referer= |
| Alternate Webpage(s) | http://sophia.stkate.edu/cgi/viewcontent.cgi?article=1615&context=msw_papers |
| Language | English |
| Access Restriction | Open |
| Content Type | Text |
| Resource Type | Article |
