The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum

Youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. Correlates of service access identified in the literature—such as family resources, race/ethnicity, or youth functioning—can be difficult to change and may not be feasible targets for intervention. This study focused on a potential contributor to service access that is malleable: parental advocacy. Specifically, we examined the association between parental advocacy activities and number of services among transition-aged youth with ASD, after accounting for indicators of youth functioning and family demographic variables (high school exit, co-occurring intellectual disability, social impairments, adaptive behaviors, race/ethnicity, state of residence, family income, and parental depression). Participants included 185 families of youth with ASD who are part of an ongoing randomized controlled trial. Data were collected at baseline (prior to intervention) via parental questionnaire and structured interview. Using hierarchical regression analyses, we found that parental advocacy activities were significantly and strongly associated with service receipt after controlling for youth functioning and family demographic factors. Youth whose parents are less involved in advocacy activities might be at-risk for service disparities. To close the gaps for service disparities, future interventions may target parental advocacy skills. Lay abstract It can be difficult for youth on the autism spectrum to get the services they need after they leave high school. Because of this, many studies have examined the different factors that are related to service access. These studies have shown that youth on the autism spectrum who belong to an underrepresented racial or ethnic group or whose families have lower incomes are less likely to receive the services that they need. However, it is difficult or impossible to change things like race/ethnicity or family income. It is important to also identify factors that might improve service access that we can change. One potential factor that fits into this category is parental advocacy activities. Using data collected from 185 parents of youth on the autism spectrum, we found that more parental advocacy activities were related to youth receiving more services, even after accounting for variables related to the functioning of the youth (e.g. whether they have an intellectual disability, their autism symptom severity) and demographic information about the family (e.g. state in which they live, parental race/ethnicity, and family income). Our findings suggest that building parental advocacy skills may be one important way to increase the number of services that youth on the autism spectrum receive as they transition to adulthood.

“I can't say that anything has changed”: Parents of autistic young people (16-25 years) discuss the impact of the Children and Families Act in England and Wales

Background. In 2014, changes to special educational needs and disability (SEND) legislation were introduced in England and Wales. These reforms aimed for young people and their families to receive the help and support they need, have a say regarding their support needs, and achieve better outcomes. We evaluated the impact of these reforms, five years on, from the perspective of parents of autistic young people (16-25 years). Specifically, we used these reforms as a framework to identify the support parents desired for their autistic children as they transitioned to adulthood.Method. We collected parents’ views and experiences about the impact of the SEND reforms on them and their autistic children. In total, 115 parents of autistic young people in England and Wales participated, via an online survey and/or interview. Results. Despite supporting the principles of the reforms, parents reported that their experiences, and those of their children, had not improved since they were introduced. Parents added that the reforms (which introduced the potential of support for young people up until the age of 25) were simply delaying the inevitable, and there was still limited support for them and their children as they transitioned to adulthood. Parental advocacy, rather than the needs of the autistic young person, was felt to be linked to outcomes.Conclusions. We discuss lessons that can be learned – in England and Wales, but also internationally – to ensure that every autistic young person, irrespective of family background, can access high quality support and achieve their goals.

“We aren’t given the same chances”: Autistic young people’s experiences of transitioning to adulthood following the Children and Families Act 2014

Changes to special educational needs and disability (SEND) legislation in England were implemented in 2014, aiming to provide a radically different system for young people with SEND. In this research, we evaluated the impact of these changes from the perspective of autistic young people aged 16-25 years. Using an online survey and interviews, we examined young people’s views on three key principles of the SEND reforms: the help and support provided to them; whether they were given a say in the choices and support that they were offered; and their satisfaction with their educational journeys and outcomes. The results painted a mixed picture. Our sample of young people reported varied experiences regarding the help and support they received, and how much of a say they had regarding the choices and support available to them. The types of schooling they accessed played a role here, with young people in mainstream schools highlighting particular challenges in accessing appropriate support. Parental advocacy was crucial in this regard, as was having key ‘champions’ in the form of teachers who really knew the young people well. The need for the development of general life and self-advocacy skills was apparent however, especially in preparing the young people for life after school. Encouragingly, most of our participants were generally happy with their current situation, despite identifying several areas for further improvements. Overall, the results highlight the importance of listening to - and learning from - autistic young people; throughout their educational journeys but especially as they transition to adulthood.

Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

Background: Parents of children with complex medical needs describe an internal, personal definition of “trying to be a good parent” for their loved child. Gaps exist in the current “good parent concept” literature: (1) When the idea of “trying to be a good parent” comes into existence for parents, (2) How parents’ definition of “being a good parent” may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. Aim: The purpose of this study was to explore these current gaps in the “good parent concept” knowledge base from the perspective of parents of children with chronic or complex illness. Materials and Methods: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. Results: The term “trying to be a good parent” resonated with 85% of the 67 responding parents. For the majority of parents, the concept of “being a good parent” started to exist in parental awareness before the child’s birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child’s prognosis and changing health as influential on their “trying to be a good parent” concept. Parental advocacy, child’s age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of “being a good parent”. Conclusions: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.

Dyslexia: Conceptualization, Assessment, and Intervention

Scholars, teachers, clinicians, and the general public have puzzled over the nature and consequences of severe reading (decoding) problems for more than a century. With the advances of genetics, neuroscience, and psychology, we know much about the underlying nature of reading disability. However, we still have much to learn, and fierce debate continues about whether there is a subgroup of poor readers who can, or should, be called dyslexic. This issue has become highly contentious, as gaining the label can bring significant benefits in terms of resourcing, various forms of test and classroom accommodation, and more positive and understanding responses from others. Many clinicians argue that special cognitive tests are needed to identify and diagnose those with dyslexia. These may take the form of general tests of IQ, or measures of more specific cognitive or executive functioning. Despite their popularity, the evidence for the utility of such measures is low, and many of the processes examined are often problematic for all poor readers, not merely the subgroup deemed to have dyslexia. A further difficulty concerns intervention. There is no strong scientific support for the notion that intervention programs designed to improve underlying cognitive processes (e.g., memory processes) can successfully improve the reading accuracy of those who struggle to acquire literacy. Similarly, interventions geared to improve visual or motor functioning have not proven successful, despite often vociferous support from adherents. The only approach that has strong scientific support takes the form of an educational program that utilizes systematic, structured phonics teaching as part of a broader literacy curriculum. This finding applies equally to those who have been diagnosed as dyslexic and those poor readers who haven’t. For this reason, it is unclear how a dyslexia diagnosis helps to inform the nature of subsequent intervention. In establishing effective forms of intervention that can cater for any child who struggles with their reading, it would appear most efficacious to utilize what is known as a “response to intervention” approach. This requires early identification of, and intervention with, all those who are making limited progress. Intervention should only utilize those approaches that have strong scientific support. The nature and extent of additional educational support should be determined on the basis of the progress that is made when additional help is given. If insufficient progress has resulted, it may well be necessary to increase and intensify the intervention. Such an approach helps to ensure that all struggling children are helped at an early stage, and no one is missed because of an absence of parental advocacy or a lack of family resource that can cover the cost of diagnostic assessment.

Disney And The Magical World Of Writing; How Combining Creativity With Learning Disabilities Can Promote Academic Success

Through a Disney perspective, this author discusses how students can use creative strategies to cope with learning disabilities in secondary, post-secondary and even graduate levels of academic achievement. In particular, the paper will be presenting how the author, who has an infinity for “everything Disney”, chose to use both Disney Characters and Disney Song titles from movies and television shows, as a creative strategy in the organization of her master’s research thesis. The research study entitled “Why is it so hard to go a good thing? The Paradox and Dilemma of Parental Advocacy within the Individual Education Planning Process” took a qualitative, phenomenological approach to investigate the experiences of parental advocacy and to seek out macro/micro factors that may have contributed to positive or negative outcomes within the IEP process. The author used Disney song titles as an adaptive tool not only to help in the organization of the findings of the research, but also to help illuminate the phenomenological existential themes that were revealed through the analysis. The paper hopes to demonstrate that through the use of creative strategies in otherwise conventional academic expectations, students experiencing disabilities may increase the potential of achieving academic success.

The Transition Process for Adolescents with Learning Disabilities: Perspectives of Five Families

This qualitative study examines, from the perspective of the families, the transition process to employment or postsecondary education for adolescents with learning disabilities (LDs) and the interplay of the roles of parents, students with LDs, and teachers. Using a case study design, series of three in-depth interviews were conducted with five individuals with LDs and with their parents. Data were analyzed inductively. The findings indicate that the families all had informal transition plans; formal transition plans were not written. For four of the families, the transition process was successful and occurred in two phases spanning the elementary and secondary school years. In the first phase parents controlled the transition process, and during the second phase they transferred this responsibility to their children with LDs. Parents’ high expectations and advocacy; students’ hard work, self-determination and self-advocacy; and teachers’ mentoring and support also contributed to the achievement of transition goals. Throughout the process parents, adolescents with LDs, and teachers worked collaboratively. In the fifth case, only the factor of parental advocacy was in place, and it was insufficient to bring about a successful transition for the adolescent with LDs.