Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial

Taylor, Julie Lounds; Hodapp, Robert M.; Burke, Meghan; Waitz‐Kudla, Sydney N.; Rabideau, Carol

doi:10.1007/s10803-016-2994-z

Cited by 95 publications

(93 citation statements)

References 32 publications

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“…Also, at the follow-up survey, there was an increase in empowerment from the postsurvey to the follow-up survey. This finding confirms previous studies about advocacy trainings and their effect on special education knowledge (Burke, Goldman et al 2016a;Burke, Magaña et al 2016b;Taylor et al 2017). Further, this study extends prior research documenting that the increase in special education knowledge may persist over time.…”

Section: Discussionsupporting

confidence: 91%

“…; Taylor et al . ). Further, this study extends prior research documenting that the increase in special education knowledge may persist over time.…”

Section: Discussionmentioning

confidence: 97%

“…Indeed, when parents have special education knowledge, they report being better able to access services for their offspring (Taylor et al . ). Thus, this finding is especially poignant.…”

Section: Discussionmentioning

confidence: 97%

“…; Taylor et al . ). These latter studies were iterations of the VAP focusing on Latino families of children with autism spectrum disorder (ASD) and families of adults with ASD, respectively.…”

Section: Introductionmentioning

confidence: 97%

“…In a single-group, pre-design/post-design, VAP participants demonstrated significant increases in special education knowledge and advocacy (Burke 2013). In later iterations of the VAP using a wait list control group design among parents of children with IDD, participants demonstrated significant increases in special education knowledge and empowerment (Burke, Magaña et al 2016b;Taylor et al 2017). These latter studies were iterations of the VAP focusing on Latino families of children with autism spectrum disorder (ASD) and families of adults with ASD, respectively.…”

Section: Introductionmentioning

confidence: 99%

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A pilot evaluation of an advocacy programme on knowledge, empowerment, family–school partnership and parent well‐being

Burke

Lee

Rios

2019

J intellect Disabil Res

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Background Internationally, it has been recognised that parents need to advocate for their children with disabilities to receive services. However, many parents find advocacy difficult because of systemic and logistical barriers. As such, parents of children with disabilities may seek a special education advocate to help them understand their child's rights and secure services. Yet little research has been conducted about programmes to develop special education advocates. Methods In this study, we conducted a comparison study to determine the association of an advocacy programme (i.e. the Volunteer Advocacy Project) on a primary outcome (i.e. special education knowledge) and other outcomes (i.e. family–school partnership, empowerment and parent well‐being). Specifically, in 2017, 34 participants, all mothers of children with disabilities, were recruited from disability organisations in the USA. Seventeen mothers participated in the intervention group (i.e. the advocacy training), while 17 mothers participated in the wait list control group. The Volunteer Advocacy Project is a 36 hr advocacy training for individuals to gain instrumental and affective knowledge to advocate for their own children with disabilities and for other families. All participants completed a pre‐survey and post‐survey; only intervention group participants completed a 6‐month follow‐up survey. Results Compared with 17 wait list control group participants, the 17 intervention group participants demonstrated improvements in special education knowledge, P = 0.002, η2 = 0.32, and self‐mastery, P = 0.04, η2 = 0.15, and decreases in the quality of family–school partnerships, P = 0.002, η2 = 0.32. At the follow‐up survey, intervention group participants demonstrated increases in empowerment, P = 0.04, η2 = 0.29, and special education knowledge, P = 0.02, η2 = 0.38. Conclusions Implications for research including the need for a randomised controlled trial are discussed; also, practitioners need to evaluate advocacy training programmes regarding their effectiveness.

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Section: Discussionsupporting

confidence: 91%

“…; Taylor et al . ). Further, this study extends prior research documenting that the increase in special education knowledge may persist over time.…”

Section: Discussionmentioning

confidence: 97%

“…Indeed, when parents have special education knowledge, they report being better able to access services for their offspring (Taylor et al . ). Thus, this finding is especially poignant.…”

Section: Discussionmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 99%

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A pilot evaluation of an advocacy programme on knowledge, empowerment, family–school partnership and parent well‐being

Burke

Lee

Rios

2019

J intellect Disabil Res

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Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study

et al. 2019

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The present longitudinal study investigated changes in service receipt and unmet service needs spanning 14 years before and after high school exit in a large community-based sample of individuals with autism spectrum disorder (ASD) (n = 204), of whom 59% had co-occurring intellectual disability (ID). Using multilevel models, potential discontinuity of service patterns at the point of high school exit was examined, as well as the rate of change in services received and needed during the high school years and into the post-high school period. Differences between those with and without ID were probed. Study findings indicated that overall, sample members experienced a reduction in receipt of services during high school, particularly for those without co-occurring ID. After high school exit, sample members experienced a decline in services received; for those without ID, there was a continuous rate of loss of services after leaving high school but for those with ID, there was a sharp decline in services received. Unmet service needs increased right after high school exit for both those with and without ID. These patterns reflect loss of entitlement for services that accompanies high school exit, and the limited availability of adult services for individuals with ASD. This study documented not only the post-high school service cliff that has been the subject of much concern, but also that the loss of services begins long before high school exit and that subgroups of the population with ASD are particularly vulnerable. Autism Res 2019, 12: 911-921.Lay Summary: In this research, we studied changes in the number of services received before and after high school exit in a large sample of individuals with autism spectrum disorder (ASD). With each passing year during high school, individuals with ASD received fewer services. At the time of high school exit, there was a sharp drop in the number of services received, particularly for those with co-occurring intellectual disability. This study found not only that there is a post-high school service cliff, but also that the loss of services begins long before high school exit.

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Exploring correlates among Latino/a parents of young children with intellectual and developmental disabilities

Rios

Burke

2023

Autism Research

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Parents of children with intellectual and developmental disabilities (IDD), including autism, experience stress in part due to child and parent characteristics. Although there is significant research about the correlates of parent stress, less is known about stress among Latino/a parents of children with IDD. The purpose of this study was to explore the correlates of empowerment, type of disability, stress, and special education knowledge among 61 Latino/a parents of children with IDD. Findings revealed a positive, significant correlation between empowerment and special education knowledge. Parents of children with autism reported significantly greater special education knowledge and stress. Implications for the future research including the need for longitudinal research are discussed.

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Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial

Cited by 95 publications

References 32 publications

A pilot evaluation of an advocacy programme on knowledge, empowerment, family–school partnership and parent well‐being

A pilot evaluation of an advocacy programme on knowledge, empowerment, family–school partnership and parent well‐being

Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study

Exploring correlates among Latino/a parents of young children with intellectual and developmental disabilities

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