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Alpha Family Resource Center Padlet / El Padlet del Centro de Recursos Familiares

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Alpha Family Resource Center Padlet / El Padlet del Centro de Recursos Familiares

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Session 2: Orador de Cierre / Closing Speaker 

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Session 2: Orador de Cierre / Closing Speaker 

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Dr. Ivan D. Alvarez, Bilingual School Psychologist
Psicólogo Escolar Bilingüe
SBCEO
ialvarez@sbceo.org
805-293-1898

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Session 2: ¿Cómo mejoramos la transición de la Parte C a la Parte B?                                                                           How do we improve Part C to Part B transition? 

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Session 2: ¿Cómo mejoramos la transición de la Parte C a la Parte B?                                                                           How do we improve Part C to Part B transition? 

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Add to the Jamboard/ Añadir al Jamboard: https://jamboard.google.com/d/1dJMLExJIJwXyirCxyFDET5rzQ4XOR7NqKwnQmG2bOpA/viewer?f=0

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Jamboard How do we improve Part C to Part B transition_ _ ¿Cómo mejoramos la transición de la Parte C a la Parte B_

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Session 2: Part C Breakout Room / Sala de Grupos Pequeños Parte C

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Session 2: Part C Breakout Room / Sala de Grupos Pequeños Parte C

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Mika Harris, Services & Supports Manager
Manager de Servicios y Apoyos
tharris@tri-counties.org
Anabel Negrete, Early Start Coordinator
Coordinador de Comienzo Temprano
anegrete@tri-counties.org
Santa Barbara TCRC/Centro Regional de los Tres Condados:
805-962-7881
Santa Maria TCRC/Centro Regional de los Tres Condados:
805-922-4640

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Session 2: Part B Breakout Room / Sala de Grupos Pequeños Parte B

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Session 2: Part B Breakout Room / Sala de Grupos Pequeños Parte B

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Jennifer Connolly, Coordinator / Coordinadora
Santa Barbara County SELPA / SELPA del Condado de Santa Barbara
jconnolly@sbcselpa.org
805-683-1424
Kirsten Escobedo, Assistant Superintendent / Asistente Superintendente Special Education
Santa Barbara County Education Office / Oficina de Educación del Condado de Santa Barbara
kescobedo@sbceo.org
805-964-4711

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2022 Refresh Summit Early Start Transition to Preschool- Schools Break Out

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Session 2: Promotores Network of Santa Barbara

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Session 2: Promotores Network of Santa Barbara

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Josefa Rios, Health Advocate / South County Promotores Coordinator Santa Barbara County Education Office
jrios@sbceo.org
805-964-4710 ext. 4404

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Session 2: Turning Three / Cumpliendo Tres

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Session 2: Turning Three / Cumpliendo Tres

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Jennifer Connolly, Coordinator Santa Barbara County SELPA
Coordinador de SELPA del Condado de Santa Bárbara
jconnolly@sbcselpa.org
805-683-1424

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Welcome to the Second Sesison of the Summit! September 22nd / ¡Bienvenidos a la Segunda Sesión de la Conferencia de Actualización! 8 de septiembre

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Welcome to the Second Sesison of the Summit! September 22nd / ¡Bienvenidos a la Segunda Sesión de la Conferencia de Actualización! 8 de septiembre

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Information for the Family Empowerment Center

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Information for the Family Empowerment Center

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Información del Centro de Empoderamiento Familiar

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Información del Centro de Empoderamiento Familiar

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https://www.surveymonkey.com/r/KV8GHGC

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Article: Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

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Article: Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

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Journal of Developmental and Behavioral Pediatrics

ABSTRACT:

This special article uses a biosocial-ecological framework to discuss findings in the literature on racial, ethnic, and sociodemographic diagnostic disparities in autism spectrum disorder. We draw explanations from this framework on the complex and cumulative influences of social injustices across interpersonal and systemic levels.

Index terms: ASD, health inequities, systemic racism, disparities

The prevalence of autism spectrum disorder (ASD) has increased dramatically in the past 2 decades, with current reported US prevalence rates of around 1 in 54 children.1 Behavioral symptoms of ASD have been detected in children between 12 and 14 months of age,2 and ASD can be reliably diagnosed by 2 years of age3,4; however, parents often have to wait an average of 3 years between their first concerns and their child receiving an ASD diagnosis.5 The average age of diagnosis remains between 4 and 7 years,6 with this delay being more pronounced with children from lower-income, ethnic/racial minority, and rural backgrounds.7 Although the prevalence of ASD has been found not to differ across racial and ethnic groups, studies have found that White children and those of higher socioeconomic status are more likely to be both identified and diagnosed with ASD earlier compared with Black, Latinx, and Asian children, as well as children from low-income families.8,9 As a result, non-White and lower-income children are less able to capitalize on early autism-specific intervention services during important developmental windows when optimal neuroplasticity and synaptic proliferation occur.7,10

Health equity is defined as "the state in which everyone has the opportunity to attain full health potential, and no one is disadvantaged from achieving this potential because of social position or any other socially defined circumstance."11 Unfortunately, significant racial inequities exist in diagnosis and treatment of children with ASD. In a recent study, Constantino et al.12 found that the average age of diagnosis for Black children was over 5 years and over 3 years after parents' first concerns about their child's development. Although the study did not include a comparable sample of non-Latinx White children, this is consistent with research that has found delay in diagnosis to be more pronounced in children of color. In a study of over 260,000 children younger than 8 years of age, up to one-fourth of children were undiagnosed, with most of these children being Black or Latinx.13 Another study found that White children were 19% and 65% more likely to receive a diagnosis of ASD than Black and Latinx children, respectively.14 Sadly, the findings of Constantino et al.12 mirror previous studies, some of which were published almost 2 decades ago and suggest little progress in equitable care and that health disparities for children of color with ASD persist. Although there are little empirical data on the mechanisms and causality of these inequities in ASD, a multitude of factors, including structural racism (i.e., a system of White dominance in which non-White individuals are excluded from equal access to societal resources),15 discrimination, education, and income, are undoubtedly involved and serve as co-occurring and interrelated operational drivers for maintaining disparities.16

The biosocial-ecological model is a useful framework to understand the complex processes that underlie the onset, perpetuation, and exacerbation of health disparities.17,18 This model is represented by a series of concentric circles and can simultaneously consider individual, family, service system, and cultural factors that result from the complex interactions within and across socioecological levels (i.e., intrapersonal, interpersonal, organizational, community, and policy levels).19 To bring to light health inequities in ASD, we use this framework to discuss findings in the literature on diagnostic disparities in ASD and draw explanations from this framework on the complex and cumulative influences of social injustices across interpersonal and systemic levels.20 We should note that studies have typically examined health disparity factors in an isolated manner and do not consider the collective influence of the socioecological contexts surrounding the individual level.

INDIVIDUAL, FAMILY, AND CULTURAL-LEVEL FACTORS

The reasons for the disparities in age of diagnosis for children of color with autism spectrum disorder (ASD) are multifactorial and may include intertwined sociodemographic influences related to financial and educational resources as well as language and cultural barriers.21 A lack of financial resources can in turn limit access to information, education, and access to quality health care.21 Historical practices such as redlining have led to cyclic and serial divestment in low-income neighborhoods of people of color and have resulted in limited access to community resources and stark inequality in the ability for upward mobility.22 Poverty rates are typically higher in communities of color, and studies in both the United States and other countries have found a positive socioeconomic status (SES) gradient in ASD prevalence, with prevalence increasing with higher SES indicators.14 Regardless of ethnicity, those with higher maternal education and ASD knowledge have increased access to care.23 It is likely that these parents have a higher level of health literacy to recognize atypical child development and also a higher ability to pay for and better navigate existing health care systems and to advocate for care in the face of discrimination or other systemic obstacles.21

Discrimination, fear of stigma, and uncertainty regarding the diagnostic process and services also continue to negatively affect the receipt of early identification for children of color with ASD. One study found that compared with White parents, Black parents of children with ASD reported significantly fewer autism concerns and fewer social, restricted, and repetitive behavioral concerns, which may be due to lower ASD knowledge or differing perceptions of whether specific behaviors are concerning.24 In addition, having low awareness of ASD and its symptoms as well as increased stress during the diagnostic process has been reported barriers for Latinx families accessing care.25 In fact, in a subsample of Latinx families with limited English proficiency, more than 85% of families indicated a lack of knowledge about ASD.25 This lower level of awareness of ASD symptoms may be in part due to systemic barriers to developmental education for parents of color but may also reflect a lack of research on the heterogeneity of symptoms in diverse populations. Indeed, most extant research and measurement development for the evaluation of ASD has relied heavily on White, middle-class samples, and thus, the traditional knowledge base of ASD symptoms may not accurately represent the experiences of families of color.

Given these findings, educational campaigns and community awareness activities are needed. The expansion of early ASD awareness campaigns such as "Learn the Signs. Act Early" or the Autism Speaks Early Access to Care and the Global Autism Public Health initiatives can help create greater ASD awareness in low-income and communities of color.26 Educational community engagement efforts within communities of color can enhance awareness of the early indicators of delayed development consistent with ASD and can provide advocacy training and support for marginalized families. With increased knowledge and awareness, parents and providers are more likely to observe behavioral symptoms and whether these phenotypes are consistent with ASD. Parents, in turn, are better equipped to navigate the health care and social service systems to secure the services for their child. Pediatric providers should ensure that efforts to educate families about available resources and services be performed in a way that is targeted to diverse consumers, is culturally responsive, and is in languages accessible to community members.27 Simple parent-focused ASD education programs that do not take into account cultural factors (e.g., community acceptance) may be inefficient and leave disparities intact.18 Diagnostic delays and misdiagnosis can have significant downstream effects on the care journey pathway. Racial and ethnic minorities with ASD have been found to have decreased access to treatment services because of language and logistic barriers (e.g., transportation, childcare, and job accommodations), as well as a lack of knowledge of existing services.27 These challenges, coupled with cultural factors, ultimately lead to lower use of health care and treatment services (e.g., school-based services, occupational therapy, speech and language therapy, and recreational programs).27

HEALTH SYSTEM-LEVEL FACTORS

Access to Care

An increase in the proportion of children with autism spectrum disorder (ASD) who receive a diagnostic evaluation by 36 months of age has been a part of the Healthy People 2020 federal prioritization. The percentage of children with an ASD diagnosis by 48 months has increased from 58% in 2014 to 71% in 2018.28 However, a shortage of trained professionals, the time it takes for diagnostic evaluations, and reimbursement constraints all continue to contribute to delayed referral and increased evaluation wait times.7 The lack of available specialty services and limited workforce capacity have resulted in diagnostic bottlenecks for all children suspected to have ASD. This shortage of specialists is even more pronounced in low-income and communities of color that rely on Medicaid, thus leading to even greater delays for families living in these areas.16 Moreover, low rates of Medicaid reimbursement for diagnostic services can make it challenging to support and maintain or expand workforce capacity.16 Compared with White children, Black and Latinx children have been found to have increased difficulty in accessing specialty care for developmental disabilities and ASD.29,30 Nearly one-third of respondents in the study by Constantino et al.12 indicated that a lack of specialists contributed to a delay in a child being properly diagnosed, and another 35.6% reported significant wait times to see a specialist. Even when a child screens positive for ASD, a family often experiences long wait times for a subsequent diagnostic evaluation by a specialist, with reported wait times up to 12 months in some geographic locations.7 Those families from more marginalized backgrounds may not have the same financial and educational resources as others and face additional systemic and interpersonal discrimination; thus, these families have increased difficulty navigating the complex diagnostic and treatment process, particularly in light of extended wait times.

Time to Diagnosis

Black parents in the study by Constantino et al.12 reported that the average age at which they first had concerns about their child's development was around 2 years. Nearly half of the children were evaluated by multiple providers before being diagnosed, and 14% were seen by at least 6 professionals before finally receiving a diagnosis. This resulted in costly delays, with children not receiving a diagnosis until, on average, over 3 years later. Similar findings have been reported with Latinx children who receive an ASD diagnosis after an average of 8 doctor visits.31 These delays likely further exacerbate health disparities by leading to increased stress and frustration for the parents, along with the increased monetary costs (e.g., health care visits, transportation, and time off from work) that come with having to be seen by numerous providers before finally receiving a diagnosis. The core and associated symptoms of ASD can also mirror other conditions, including attention-deficit/hyperactivity disorder (ADHD) or obsessive-compulsive disorder. Children of color with ASD are more likely to receive an initial diagnosis other than autism (e.g., ADHD, conduct disorder, and adjustment disorder) during their first specialty visit before receiving an accurate ASD diagnosis.13 This is likely due to the lack of provider training in recognizing ASD symptoms in children of color. In addition, provider implicit bias may negatively affect their communication with families and gathering of behavioral symptoms, which in turn can affect their judgments or assessment of presenting symptoms and ultimately lead to providers attributing ASD symptoms to behavior problems stereotypical of children of color.

Provider General Education

The American Academy of Pediatrics (AAP) recommends the implementation of universal developmental and ASD screening32,33; however, a lack of knowledge, lack of familiarity with screening tools, and lack of confidence in identifying ASD symptoms continue to serve as barriers for many providers to successfully implement these recommended screening practices.34 With increased uncertainty, providers may resort to a "wait-and-see" approach that can perpetuate further diagnostic delays. Even then, not all children who screen positive are referred for a diagnostic evaluation because rates for referral for an ASD evaluation are low.35,36 In addition, given the nondiverse samples used to develop and validate screening and diagnostic instruments, these tools may function differently in populations of color and may not identify all clinical phenotypes equally.37 In fact, the specificity and positive predictive value of the Modified Checklist for Autism in Toddlers Revised have been found to be lower in children of color and those from lower-income household, resulting in a higher rate of false positives35,38; thus, more sensitive screening instruments are needed. Providers have also reported feeling less comfortable in identifying ASD risk with Spanish-speaking families.39 To help address disparities in ASD screening, Harris et al.40 recently validated a visually based ASD screening tool for those with low-literacy levels or with limited English proficiency. Even with universal screening practices, children who are of color, are from lower-income households, receive public insurance/Medicaid, and are exposed to a language other than English are more likely to be missed.38 As a result, providers would benefit from tools to facilitate communication and shared decision-making with families.41 In addition to ASD-specific screening, providers should screen for important social determinants of health that are consequences of structural racism, including housing difficulties, lack of safety in their neighborhood, poverty, food insecurity, and connect them to appropriate resources.22

Because additional education and training for ASD can be beneficial for providers in pediatric practice, there has been an emergence of research on strategies to improve access to timely diagnostic evaluations, including training of primary care providers (PCPs),7 creating integrated behavioral health practices to streamline assessment and diagnosis,42,43 and use of telemedicine to reach underserved areas.44 For example, the Project Extension for Community Healthcare Outcomes Autism Screening Tool for Autism in Toddlers and Young Children pilot study was developed to train community-based PCPs in underserved areas in screening and diagnosis of ASD to accelerate early access to diagnosis and treatment.34 This hub-and-spoke model allows for telemonitoring of primary care physicians to consult with specialists regarding diagnosis and management of ASD and has resulted in increased self-efficacy and increases in knowledge around timely diagnosis and management, although most recent data have not yet shown significant changes in ASD screening.45 In addition, the REAL-START intervention has been found to increase ASD screening overall, provider adherence to screening guidelines, and rates of referral in Latinx communities.46 Finally, some have recommended that offering ASD screening at preschool well-child visits might lower the overall age of diagnosis, particularly for low-income and children of color.41

The AAP has also recently released updated guidance for the identification, evaluation, and management of children with ASD.32 This comprehensive clinical report discusses a standardized approach to screening and highlights the importance of more accurate and culturally sensitive screening practices. In addition, the AAP has also offered an online learning course titled "Identifying and Caring for Children with Autism Spectrum Disorder: A Course for Pediatric Clinicians" to complement this material and aid clinicians in identifying and caring for children with ASD, available at https://shop.aap.org/identifying-and-caring-for-children-with-autism-spectrum-disorder-a-course-for-pediatric-clinicians/. This training is only the first step toward competent ASD diagnosis and management and should be supplemented with additional education on culturally sensitive care and antibias training.

Patient-Provider Relationship

Children and their families benefit from increased awareness by providers of diverse cultural practices and racial biases. Given the frequency of contact with families during the first years of life, pediatric PCPs serve as a link of continuity and are uniquely positioned to build strong rapport and trust with families. For this reason, pediatricians are uniquely positioned to mitigate the consequences of racism and ensure that all families receive timely diagnosis, management, and referral for ASD.47 Yet, there is a lack of diversity in health professionals in general, which can negatively affect patient-provider relationships.16 Providers must be comfortable with being uncomfortable and be willing to get proximal to the problems of racism and engage in self-education.22 In addition, pediatric providers must be aware of their own implicit biases, which can affect their judgments and clinical decision-making about patient care and negatively affect patient ratings of patient-centered care, including trust and interpersonal treatment (e.g., care, concern, and respect).48,49

Studies have shown that health care providers have similar levels of implicit racial bias as the general population, and those with more implicit bias tend to have higher verbal dominance in communication with patients and lower ratings of patient-centered care.50

Patient-Provider Communication

Compared with children with other developmental disabilities, families of children with ASD have been more likely to report that the doctor did not spend enough time with the child, did not listen, and was not sensitive to the families' values and customs.29 This is especially pronounced for Black families who report ongoing experiences of racism, marginalization, and dismissal of concerns in health care settings, including in the pursuit of an ASD diagnosis for their children.51 Caregivers of Latinx children have reported that limited English proficiency, a lack of knowledge of ASD, and difficulty navigating the health care system as well as feeling their concerns were dismissed by the provider were all barriers to diagnosis.25,41 This resulted in caregivers normalizing their child's early behaviors and losing trust in the medical system. Further research on provider attitudes, cultural competence, linguistic barriers, and provider communication in the pediatric literature is warranted to help bridge the disparity gap. This will require providers to identify and mitigate the effects of their own implicit bias on care with children and families and also work to ensure that care provided in culturally competent ways that is consistent with the families' values.48 Given that trust in providers has been found to be problematic in populations of color, employing bicultural and bilingual staff, using trusted brokers (e.g., community members and Latinx parents of children with ASD), having language concordant helplines, and incorporating family navigators may engender trust, decrease the stress of the diagnostic process, and assist families in accessing services.25 Family navigation is a case management model that has been identified as a promising intervention to target low-income families and minoritized groups to improve the timely diagnosis of ASD52; however, large evaluations have demonstrated variable outcomes and family experiences across different health care delivery systems.53

APPROACHES TOWARD EQUITABLE CARE

The barriers to access autism spectrum disorder (ASD) assessment for underserved populations highlight the need for innovative approaches to ASD screening, evaluation, and diagnostic decision-making that can increase access to earlier detection and intervention of ASD for all children. There have been increased interest and a growing literature on the feasibility of using either Real-Time or Store-and-Forward telemedicine for ASD diagnostic assessments and interventions.44 For example, Smith et al.54 compared the use of Naturalistic Observation Diagnostic Assessment with the in-person evaluation and found high rates of both diagnostic sensitivity and specificity (84.5% and 94.4%, respectively). Using a real-time method, Reese et al.55 found improved access to diagnostic services and high agreement between face-to-face and videoconferencing for the diagnostic assessment of children with suspected ASD. Overall, the use of telehealth in the field of ASD has been shown to be an effective, acceptable, and usable modality for both clinical evaluation and behavioral intervention44 and represents a scalable alternative to traditional methods. Telehealth offers advantages for increasing access to diagnosis and care, expediting the diagnostic process and receipt of early intervention services, decreasing provider and patient costs, and increasing provider coverage area.44 It is important to note, however, that educational, socioeconomic, language, and literacy factors may minimize the impact of telehealth services for populations of color, who are more likely to suffer from the digital divide. Although not a panacea for health disparities, telemedicine can be a viable option for families in remote and underserved areas, which allows for extended and expanded access to quality services, including for children of color.

Some have noted that the use of data-driven methods that leverage advances in artificial intelligence (AI) and machine learning are promising approaches to augment the practicing physician's clinical decision-making for diagnostic evaluations.38 As mentioned previously, factors contributing to disparities in ASD diagnosis and access to early intervention include ethnic/racial-minoritized parental underreporting of certain symptoms, physician bias in diagnosis and discrimination in interactions, and limited access to specialists because of insufficient numbers of clinicians and geographical barriers. Integrating AI-based technology into standards of practice in clinical care can address these root causes of disparity by decreasing reliance on parental report of symptoms and reducing the potential impact of physician bias. By integrating massive data sets, the AI algorithms can assess thousands of traits and features and build on the findings to assist clinicians in making an accurate, timely, and unbiased diagnosis. With the use of racial-conscious and ethnic-conscious data sets, researchers and AI developers can control for the influence of cultural biases and identify the most predictive traits that are commonly linked to ASD for different races and ethnicities. These AI-based technologies can also be implemented in primary care settings, thereby reducing reliance on specialists and increasing accessibility of diagnosis in underserved geographic areas. Ultimately, when coupled with provider education and technical assistance, AI-based tools can be used to address the bottlenecks in the diagnostic process by increasing efficiency and decreasing the demand on specialists, thereby allowing for a scalable process for assessing ASD in children.56 AI is not without limitations, however, because an AI algorithm or model is only as good as the data from which it was derived. Stated differently, if the data used to derive the model or algorithm are biased or otherwise do not fully represent all potential groups of individuals, then the output will only further perpetuate these biases.57

CALL TO ACTION

Kilbourne et al.58 developed a 3-component model or roadmap for health services researchers, practitioners, and policymakers to guide health disparities research, including (1) detecting or identifying disparities, (2) understanding the determinants that underlie the disparities, and (3) developing strategies and interventions for reducing or eliminating these disparities. The literature for simply identifying disparities in autism spectrum disorder (ASD) has been well established over the past 2 decades. The time is now to systematically advance health disparities research and for the field to progress toward identifying root causes (phase 2) and develop effective system-level and culturally sensitive approaches to close existing gaps and move toward more equitable care (phase 3). The dimensions of equity must be identified, addressed, and transformed through clinical care, education and training, research, mentoring, and service.59 Furthermore, the construct of race must be better measured, carefully used, and potentially replaced to further advance research in pediatric health disparities.60 This includes clearly defining race in a way that clearly references the sociopolitical nature of the concept and not genetic interpretations of race.61

Studies unfortunately have typically examined health disparities in isolation without consideration of other socioecological factors/levels.18 A more thorough understanding of how parent (e.g., beliefs and preferences, education, and race/ethnicity), provider (knowledge, attitudes, racial biases, and competing demands), clinical encounter (e.g., provider communication and cultural competence), and health care system (e.g., health services organization, financing, and organizational culture) factors interact warrants more empirical research and system change. Intervention and prevention efforts to reduce disparities should consider child-level, family-level, school-level, community-level, and policy-level influences and should seek to elevate the perspectives of the families being affected at every stage from intervention development to implementation.

As the growing literature on race, socioeconomic status, and ethnicity in ASD indicates, disparities persist, resulting in worse health outcomes for non-White and low-income children with ASD, and necessitate a call to action to address the systemic drivers of inequity.62 We cannot ignore the centuries of oppression experienced by marginalized groups, and change is needed. The need for action has currently been highlighted given the COVID-19 pandemic, the current sociopolitical climate, and events of racial injustice that reverberate throughout and have been thrust into the forefront of national media. The work to address the longstanding system of oppression and exclusion to eliminate inequities in a meaningful way will be both difficult and complex and will require a shared commitment and multifaceted approach.59 This work is critical to make meaningful change to the structural drivers of inequity and associated barriers to equitable care.16 The solutions are not as simple as providing increased education, and the focus should shift from changing individuals to changing the structures and systems that surround individuals.63 In fact, for some approaches, short-term interventions merely serve as a band-aid solution for addressing systemic, interpersonal, and historical racism.63 Most child health interventions are focused at the individual level and not structural interventions at the system or policy level, which, in isolation, will likely only perpetuate inequalities.63 More research is needed to develop and validate interventions that address both health disparities and the core issue of racism.59 For example, changing existing systems will necessitate dedication to increasing ethnic and racial diversity in both clinical and research roles by making education and training more accessible to communities of color and by making medical training more culturally responsive. In addition, examining reimbursement rates and removing restrictions on who is qualified to make a diagnosis are a needed step in the process.16 Health care systems can support economic growth in communities that have historically seen serial divestment in their neighborhoods and work to dismantle policies and structures that systematically drive social determinants of health (SDoH).48

In a recent editorial, the Journal of Developmental and Behavioral Pediatrics expressed its commitment to fostering publications on the role of racism and discrimination as determinants of child health and well-being as well as at the interpersonal and structural/systemic level in health care.64 Relatedly, Valdez22 put out a call for pediatric providers to engage in antiracism and social justice for children through self-education to increase racial awareness and comfort in discussing race with patients, partnering with community agencies and advocacy groups to lobby for structural community improvements, and screening patients for SDoH (e.g., housing difficulties and neighborhood safety) that are both social and economic consequences of structural racism. Pediatrics should be at the forefront of addressing racism, as a failure to do so will continue to undermine health equity for all children and their families.47

The dimensions of equity must be identified, addressed, and transformed through a significant investment in clinical care, education and training, research, mentoring, advocacy, and service.59 Developmental and behavioral specialists can help mitigate the social injustices that low-income and families of color face and work together toward ameliorating the oppressive forces that limit access to timely evaluation and treatment services. This will require engaging in efforts to optimize clinical care, workforce development, professional education, systems engagement, and research.47 Although there is a shortage of pediatric specialists overall, a recent workforce survey showed that only 2% of developmental-behavioral or neurodevelopmental pediatricians are Black.65 To recruit a workforce that reflects the diverse populations served, the Academic Pediatric Association has created the New Century Scholars, a mentorship program aimed at increasing the workforce diversity in academic pediatrics that spans educational, research, and clinical care and at increasing the representation of underrepresented minorities.66 In addition to diversifying the workforce, increasing cultural humility and a self-reflection and commitment to unpacking internalized or implicit racial biases and discriminatory practices will also be needed. Drawing from social psychology, health care educational interventions designed to reduce implicit bias have typically included both an approach to identify and increase awareness of one's own implicit biases and an instruction on how to reduce the activation of these biases or control how they influence judgment and behavior. Unfortunately, only a few studies have examined the effectiveness of these steps in isolation or together with health care providers. Regarding ASD, more research is needed to provide direct evidence on the processes at work in provider bias with the diagnosis and management in children of color.

Further advancement is needed to meet federal initiatives aimed at eliminating disparities for low-income and children of color who present with developmental and/or behavioral concerns, including those with ASD. Eighteen years ago, the Institute of Medicine report titled Unequal Treatment highlighted the multifactorial disparities in health care quality received by individuals of color and provided a conceptual lens for identifying determinants to help understand and address the root causes of these disparities.67 Despite this report, disparities persist into the present day and remain relatively unchanged, which can be explained, in part, by a failure to acknowledge that racism is at the root of these racial disparities.62 There has been an increased focus on diversity, equity, and inclusion in pediatrics over the past 10 years. Yet as a recent policy statement stated, pediatrics has yet to systematically address the influence of racism on child health outcomes and to prepare pediatricians to identify, manage, mitigate, or prevent the harmful impact of these inequities.47 The collective call is loud and clear, and the time for change is now.

Footnotes

B.S. Aylward and D.E. Gal-Szabo are consultants of Cognoa. S. Taraman is an employee of Cognoa and has stock options in the company. Cognoa is a pediatric behavioral health company focused on improving the lives and clinical outcomes of children and families living with behavioral health conditions, including autism spectrum disorder (ASD). S. Taraman also receives consulting fees from Cognito Therapeutics, volunteers as a board member of the American Academy of Pediatrics (AAP)-OC chapter and AAP-California chapter, is a paid advisor for MI10 LLC, and has stock in NTX, Inc. and HandzIn. The remaining authors declare no conflict of interest.

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# data[].attributes.attachment_link.title
Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

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Journal of Developmental and Behavioral Pediatrics This special article uses a biosocial-ecological framework to discuss findings in the literature on racial, ethnic, and sociodemographic diagnostic disparities in autism spectrum disorder. We draw explanations from this framework on the complex and cumulative influences of social injustices across interpersonal and systemic levels.

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Article: Latino Parents' Perspectives of Barriers to Autism Diagnosis

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Article: Latino Parents' Perspectives of Barriers to Autism Diagnosis

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Acad Pediatr. Author manuscript; available in PMC 2015 May 1.

Published in final edited form as:

Background

Latino children are diagnosed with Autism Spectrum Disorders (ASDs) at older ages and at the point of more severe symptoms.

Objective

To qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children.

Methods

Five focus groups and four qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audio recorded and transcribed. Transcripts were coded by two researchers, and data were analyzed using thematic analysis.

Results

Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care due to poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system.

Conclusions

Additional educational outreach to Latino families, de-stigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.

Keywords: Autism Spectrum Disorder, Delayed Diagnosis, Hispanic Americans, Health services accessibility, Qualitative Research

Recruitment and Eligibility

We recruited parents of Latino children with ASD to participate in a focus group or semi-structured interview. Eligible parents spoke English or Spanish and had a child age 2-10 diagnosed with ASD. Participants were recruited from a university autism clinic research registry, a county developmental disabilities service, and a community advocacy organization for Latino children with disabilities. We used purposive sampling to include parents in urban and rural areas, and parents with English or Spanish primary language. Participants were initially approached via mail and telephone; interested individuals were invited to participate in a focus group in their geographical area and preferred language. We made special efforts to accommodate parents facing barriers to attendance by reimbursing for public transportation, and providing food and child care. Participants who were still unable attend a group due to timing conflicts, geographical distance, child care problems, or severity of their child's ASD, were offered an individual interview via telephone or in person. Recruitment continued until we reached thematic saturation. The Oregon Health & Science University Institutional Review Board approved the protocol.

Procedures

Focus groups were conducted by a bilingual Latina facilitator and a bilingual research assistant. Groups were conducted in English or Spanish, took place at community settings in Oregon, and lasted approximately ninety minutes. Individual interviews were conducted by a bilingual research assistant at a time and place convenient for the parent.

Verbal informed consent was obtained prior to interviews or focus groups. Interviews and focus groups followed the same interview guide ( Appendix Table 1) which was informed by literature on delayed diagnosis for other developmental and behavioral disorders. The guide had three domains: community perceptions and knowledge of ASD, barriers experienced before and during the ASD diagnostic process, and suggested ways to overcome barriers. The facilitator asked probing and clarifying questions or asked participants to elaborate on emerging themes. After the focus group or interview, parents completed a survey assessing child and parent demographic characteristics ().

Table 1

Data Analysis

Focus groups and interviews were audio-recorded and transcribed verbatim in their original language. Data were analyzed using thematic analysis, an inductive approach at the semantic level that uses an essentialist paradigm (i.e. we theorized participants' motivations and meanings based on what they said, rather than from existing literature, theoretical constructs, or the socio-cultural context that enabled their accounts). The PI, two bilingual/bicultural research assistants, and two Latina parents of children with an ASD read selected transcripts, discussed their general impressions, and identified preliminary themes. Based on the results of these discussions, we developed preliminary codes. The research assistants then independently coded each transcript in its original language, using QSR NVivo 10 (Victoria, Australia). The PI reviewed all codes and independently coded selected transcripts. Both research assistants met with the PI after coding each transcript to resolve any coding disagreements by consensus. The code list was updated when new ideas emerged. After initial analysis, the team met to review coding and to generate themes and subthemes. We particularly considered themes that were frequently endorsed, that were less frequently endorsed but were emphatically endorsed by some participants, and that may be unique to Latinos (as opposed to all parents seeking an ASD diagnosis). Codes were reviewed a final time to assess variations within each theme, differences in views among participants, and differences between interviews and focus group results. Final themes were reviewed by one Latina parent of a child with ASD to assess for face validity. Spanish quotations selected for this manuscript were translated by a bilingual team member with training in medical translation; translated passages are marked with an asterix.

Sample

66 families were invited to participate; of those, 36 were reachable by mail or phone. 24/36 families (33 parents) eventually participated in 5 focus groups (ranging from 2-12 parents) and 4 individual interviews. All but one participant identified as Latino (one participant's partner was a Mexican-origin man; she considered her son Latino). Most participants were Spanish-speaking, Mexican-born women with less than high school education. Median age at ASD diagnosis was 2.8 years, with an older age of diagnosis in children whose parents attended Spanish focus groups ().

Themes

We identified themes describing barriers to ASD diagnosis and organized these themes into three categories: Latino community knowledge and perceptions of ASD, parent and family factors, and health care system factors. From these factors, additional adverse consequences resulted. shows the relationship of themes to each other and to ASD diagnostic delays.

Latino Community Knowledge and Perceptions of ASD

Lack of parent and community information about ASD

Nearly all parents felt there was little knowledge about ASD in the Latino community, and that lack of knowledge impeded early ASD identification. Many said that they knew little or nothing about ASD prior to their child's diagnosis. One mother commented:

"I didn't know anything. The day that they told me [that my child had autism] I didn't know what it was."*

Some parents were still unsure what it was. In every focus group and interview, parents cited "lack of knowledge" or "ignorance" about ASD as a problem in their community. Parents pointed to lack of attention to ASD in the Latino media relative to mainstream media as one important cause of low information availability.

Parents also felt that their community knew little about ASD because conditions like autism "do not exist" in many Mexican communities. Children in Mexico might behave differently, or have a disability, but these children would not be labeled with a medical condition:

"Well sometimes Latino people do not understand, because in reality in Mexico we don't have a diagnosis of autism. No one knows about it. It's like, here you come to understand so many things that over there, we didn't know what they had or didn't know the name of it." *

As a result, sometimes a child's ASD would go unexplained or poorly understood.

Mental health and disability stigma prevented parents from seeking care. Parents thought many in the Latino community perceived disabilities, and particularly mental health problems, as embarrassing or shameful, and that this might be a reason that families did not discuss developmental concerns with community members, health care providers, or even each other.

"...but all of us know that in Mexico they call them idiots. ... I remember when I was a young girl I saw one, an autistic person. I asked, 'What is that?', and they told me, 'That's an idiot.'..."*

""so there [Mexico], parents ignore their children if they have some disability. If they are born with a deformed ear they say 'this child isn't worth anything' or if they go to a party and they have a child in a wheelchair, all the children go out [to play] and leave the child in the wheelchair behind. Or if the mother goes outside the house to talk with someone selling something, she closes the door so no one can see him."*

Parents felt that in many Mexican communities, a family of a child with ASD would hide a child that acted differently. Community members might think that the child was improperly disciplined (especially, in need of spankings). They might also think that the child was crazy, had an intellectual disability, or had Down syndrome. As a result, when parents observed their child's behavior, they felt uncomfortable sharing their concerns or even admitting they had a concern.

or a traditional view of Latino male gender roles, was perceived by mothers as particular problem for their male partners. Mothers felt fathers saw having a "weak" or "disabled" boy as a poor reflection on them as a man:

"There are still too many men still that are way too macho, and their kids can't be, this is my son's dad's issue.... He doesn't get it or he's too macho to understand, to have a child that sick and that's a big deal. How's he gonna have a sick kid when he's this big tough guy?"

"I mean, one of the questions he wanted me to ask at the evaluation is, is he gonna be able to have a normal life and have children and get married? And I said they're not gonna be able to tell us that..... And he's like, if that's the case, I need to know so that we can have another child."

As a result, fathers might discredit mothers' concerns, be uncooperative with the diagnostic process, or take a passive role in their child's care. Notably, no fathers stated specifically that machismo affected their interaction with their child, or how they perceived their ASD diagnosis; however, they stated that ASD changed how they envisioned their son's ability to perform "normality" in a culture influenced by traditional gender norms and expectations. For instance, one father described how he had hoped to show off his boy at rodeos, which now seemed hard to imagine given the boy's autistic behaviors.

Parent and Family Factors

Limited English Proficiency (LEP) made every step of the diagnostic process more difficult - Parents in every focus group and 2/4 interviews cited LEP a significant barrier. Even parents in English focus groups and interviews pointed to LEP as a barrier for other parents who spoke English less well. Language issues made scheduling appointments and arranging transportation particularly difficult. Poor interpreter access or quality also made it difficult for parents to express their concerns and navigate the diagnostic process.

Poor awareness of available services and lack of empowerment to take advantage of services

This theme was more prevalent in the English focus groups and interviews. English-speaking mothers felt that less-acculturated Latina mothers did not realize their child was entitled to services, or did not feel comfortable "speaking up" or "being strong with people" to get the needed services:

Parent 1: "They didn't speak up. Either because they didn't have the voice or they just, I don't know.

Parent 2: "Or they're intimidated.... A lot of these parents are also immigrants. That I think is a big one. But just the fact that, I don't know, I think it has a lot to do with the fact of not speaking up."

Poverty and its associated problems made seeking care more difficult. Although few parents directly said they lacked money to pay for diagnostic appointments (probably because most children in the study were publicly insured), several said cost of appointments might affect other families. However, poverty indirectly affected families' access to care: for instance, restrictive insurance coverage or lack of money for transportation or child care made appointments harder to schedule. Some parents worked multiple poorly-paying jobs, in temporary or seasonal work, with no flexibility to take days off to take their child to appointments. Also, because of poverty, some parents may "push aside" their developmental concerns because of more pressing economic needs.

Health Care System Factors

Primary care provider dismissed parents' concerns

Experiences with primary care providers were mixed. Some parents felt their provider helped them obtain an ASD diagnosis quickly; others felt their concerns were ignored. Some parents switched health care providers several times before finding one who took their concerns seriously. Parents felt that providers' dismissive behaviors and/or lack of inquiry into parents' concerns delayed diagnosis. One parent recounted such dismissive behavior:

"I brought him to the doctor, telling her that I was worried because my son didn't speak, I mentioned the four words [that he used to say] and since then, he doesn't talk at all and it's like he is mute... So the doctor examined him, saw that he ran and all that, but she never said anything to me about autism. She said: 'Don't worry. Let's wait until he is 3 years old. There are some children that start to talk at 3 years. Sometimes not all children speak early, others [speak] late. Don't worry..."*

Few parents thought that these behaviors were due to bias or racism; however, some English speakers felt that providers underestimated their level of education or understanding, and many Spanish speakers felt that language barriers prevented them from expressing their concerns optimally with providers.

The diagnostic process was complex and slow

Getting an ASD diagnosis often entailed visits with multiple medical and school personnel. There were often long waits to get care. Because many providers were involved, and did not communicate well, the process felt slow and disjointed.

"The most difficult part was the fact that I was sent to so many different specialists. And the specialist will only look at one piece of a puzzle; they just don't put everything together. And that's what I found mostly, is that the time between seeing different people was a long time. So that made it really, really difficult to be able to get any kind of answers and any kind of help for [child]."

The complexity of the process was particularly challenging for less acculturated families. Many small delays added up to larger delays for parents seeking diagnosis and treatment for their child.

Getting an ASD diagnosis was inconvenient

For the most part, children could not be diagnosed with an ASD in their community. Getting a diagnosis for many families meant arranging child care for other children, taking time off from work, and often having to rely on medical transportation or public transit to take them long distances.

Getting an ASD diagnosis was uncomfortable for the child

Given that many children with ASD have challenges with sensory issues, changes in their routine, and interacting with strangers, ASD diagnostic evaluations were often unpleasant for the child. This was particularly the case for families who had to come for multiple visits. These factors may have made parents reluctant to follow up after an initial experience, especially if that experience was a negative one.

Consequences

ASD concerns were normalized, leading to inaction

Because parents had little information about ASD, community members were uncomfortable discussing it, and because providers sometimes dismissed parent concerns, parents heard many normalizing messages about their child's problem.

Interviewer: "Okay. And when you told your husband, 'Something is going on with the child.' What did he say?"

Parent: "That I was the one who was crazy. That the child didn't have anything."*

As a result, parents doubted their concerns or delayed taking action on them.

Parents felt confused and conflicted about ASD

As many parents noted, even doctors are confused about ASD, which has no clear cause or cure. However, when parents had little information and doctors and community members suggested parents' concerns were invalid, their confusion was compounded. Parents were not sure what ASD meant, or what they should do, even after receiving an ASD diagnosis. This was particularly the case for children with diagnoses of pervasive developmental disorder, not otherwise specified (PDD-NOS); parents were unsure whether the child really had ASD or not. Parents often left their diagnostic appointments unsure exactly what their child had, or what to do next.

Parents initially denied that their child had ASD

Receiving an ASD diagnosis was stressful for many families, and many needed time to emotionally adapt, which may have delayed care-seeking.

"It took like four months to understand autism and find help. I had to look in the mirror and say, "what am I doing? What am I going to do? Where? Who do I have to go talk with?" I didn't want to talk with my family or my husband about it. My husband also couldn't get over it. It took a long time, but eventually he accepted it, and we moved ahead..."*

Several parents also speculated that other Latino parents purposefully avoided seeking out an ASD diagnosis because it would be too depressing to accept that the child had a serious problem.

Parent trust in the health care system eroded

Most parents trusted providers throughout the diagnostic process; this was particularly the case in Spanish focus groups. However, as the process stretched out over time, parents became frustrated. Some began to doubt whether providers were acting in their child's best interest. One parent suggested that perhaps providers were deliberately making services difficult to access for Latinos in order to save money. Another felt that her ASD diagnostic visit was mainly for conducting autism research rather than for diagnosing her child. Because providers' diagnoses and recommendations seemed less trustworthy, some parents may have put off acting on these recommendations.

Table 2

Study finding

Recommendations

Sample Quotations

Latino Community Knowledge and Perceptions of ASD

Lack of parent and community information about ASD

Providers should not assume that Latino parents have heard of ASD or know its symptoms.*

Primary Care Providers could make more information about ASD available at routine visits, or during ASD screening. Non-print material may be particularly helpful for families with low literacy.*

Health care professionals could conduct educational outreach to Latino communities; campaigns should stress the importance of early diagnosis.*

"Maybe like for places where a lot of the Latino community comes together, possibly churches, have somebody come in that's knowledgeable about it and present it to them like, 'If you have concerns, then come to us so we can refer you'."

"I think with every well child check, they should have a checklist of autism symptoms... just to get people thinking or talking about it ... I think it just needs to be brought up every chance that you can especially at school, and with doctors."

Mental health and disability stigma

Providers should more actively and sensitively elicit parent developmental concerns.*

Formal developmental and ASD screening (in English and Spanish) should be implemented at routine visits and any time a parent has a concern.*

Providers should explain the purpose of developmental screening to parents so that they feel comfortable participating.

Trusted community members could assist as information brokers.

Information provided to families should emphasize that ASD and developmental delay are biological conditions and not the result of poor parenting or the child being "crazy."

Provide bilingual parent and family counseling for families of recently diagnosed children.*

Parent and family factors

Limited English Proficiency

High-quality interpreters should be made available for all clinical encounters.*

Clinics should hire more bilingual/bicultural staff and providers.*

Clinical programs should aggressively recruit and train bilingual providers.

"Just making sure that you do have those Spanish-speaking people available to anybody ... If you see a child's M-CHAT test come out negative, and it's a Hispanic family, they should throw somebody in there, and say, "Okay, we had these red flags." ...Throwing somebody in there with the language right away."

"The most important thing is that the whole world be informed about autism, that they find out, that they know that children with autism have the same rights as everyone."**

Poor awareness of available services, and lack of empowerment to take advantage of them.

All parents should be advised of their child's disability rights.

Newly diagnosed or at-risk families should receive enhanced case management.

Newly diagnosed or at-risk families could be paired with mentor families.

Poverty

Providers should advise families that Early Intervention and Early Childhood Special Education incur no cost to families.

Information should be made available to families about other free or low-cost community resources.

Families who may be eligible for Supplemental Security Income (SSI) should be advised of the program and encouraged to enroll.

Health Care System Factors

Primary Care provider dismisses parent concerns

Providers should respond to any parental expressions of developmental concern, since these concerns may be very difficult for parents to raise.*

Providers should be trained in early identification of ASD and in normal language development among bilingual children.*

"Doctors should listen to parents, because sometimes I think that they don't [listen]".**

"They need to learn to identify the characteristics, and don't wait until [the child] displays all of them. At the slightest suspicion, refer them."**

Diagnostic process is complex and slow

Efforts should be made to increase the number of providers trained to diagnose ASD, including training non-specialist providers.

At-risk children should be referred immediately to autism specialists.*

Diagnostic process is inconvenient

Diagnostic process is uncomfortable for child

​

Latino parents of children with autism spectrum disorder (ASD) report low information about ASD, mental health and disability stigma, lack of empowerment, dismissive provider behaviors, and a slow and confusing diagnostic process as barriers to ASD diagnosis.

The authors would like to acknowledge Drs. Ellen Lipstein and Somnath Saha for their guidance regarding qualitative methods; Dr. Christina Bethell for material support; Teresa Gomez for her help in recruitment; and Susie Larios and Eréndira Valdivia for their helpful perspectives and assistance with data analysis.

Funding Source: This project was funded by #1K23MH095828 from the National Institute of Mental Health (PI = Zuckerman). It was also partially funded by an Academic Pediatric Association/Commonwealth Fund Young Investigator Award (PI = Zuckerman).

Financial Disclosure: The authors have no financial relationships relevant to this article to disclose.

Conflict of Interest: The authors have no conflicts of interest to disclose.

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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# data[].attributes.attachment_link.title
Latino Parents' Perspectives of Barriers to Autism Diagnosis

# data[].attributes.attachment_link.description
Acad Pediatr. Author manuscript; available in PMC 2015 May 1. Published in final edited form as: Latino children are diagnosed with Autism Spectrum Disorders (ASDs) at older ages and at the point of more severe symptoms. To qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children.

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Session 1: Part B Breakout Room / Sala de Grupos Pequeños Parte B

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Session 1: Part B Breakout Room / Sala de Grupos Pequeños Parte B

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Jennifer Connolly, Coordinator / Coordinadora
Santa Barbara County SELPA / SELPA del Condado de Santa Barbara
jconnolly@sbcselpa.org
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Kirsten Escobedo, Assistant Superintendent / Asistente Superintendente Special Education
Santa Barbara County Education Office / Oficina de Educación del Condado de Santa Barbara
kescobedo@sbceo.org
805-964-4711

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2022 Refresh Summit Early Start Transition to Preschool- Schools Break Out

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Session 1: Part C Breakout Room / Sala de Grupos Pequeños Parte C

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Session 1: Part C Breakout Room / Sala de Grupos Pequeños Parte C

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Mika Harris, Services & Supports Manager
Manager de Servicios y Apoyos
tharris@tri-counties.org
Anabel Negrete, Early Start Coordinator
Coordinador de Comienzo Temprano
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805-962-7881
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805-922-4640

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2022 Refresh Summit- TCRC--  Breakout Session 1

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Session 1: Early Start History / Historial del Comienzo Temprano

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Session 1: Early Start History / Historial del Comienzo Temprano

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Patty Moore, Help Me Grow Director
Directora del Programa Ayúdame a Crecer
pjmoore@alphasb.org
805-570-3665

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Session 1: Mixteco Indigena Community Organizing Project / Proyecto de Organización Comunitaria Mixteco Indígena (MICOP)

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Session 1: Mixteco Indigena Community Organizing Project / Proyecto de Organización Comunitaria Mixteco Indígena (MICOP)

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Liliana Manriquez, ACCESO Project Coordinator
Coordinadora del Proyecto ACCESO
Liliana.manriquez@mixteco.org
Ana Huynh, Program Director
Directora de Programa
Liliana.manriquez@mixteco.org
Ricardo Cruz, Proyecto Acceso Case Manager
Administrador de Casos Proyecto Acceso
Ricardo.cruz@mixteco.org
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Welcome to the First Sesison of the Summit! September 8th / ¡Bienvenidos a la Primera Sesión de la Conferencia de Actualización! 8 de septiembre

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Welcome to the First Sesison of the Summit! September 8th / ¡Bienvenidos a la Primera Sesión de la Conferencia de Actualización! 8 de septiembre

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Gina Stabile, Alpha Family Resource Center Manager
Manager del Centro de Recursos Familiares
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National Early Childhood Transition Center - Research Brief 2020

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National Early Childhood Transition Center - Research Brief 2020

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Department of Linguistics - UC Santa Barbara

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The Department of Linguistics at the University of California, Santa Barbara stands at the forefront of several converging trends in the field of linguistics, thanks to a series of key decisions made when the department was founded in 1989. UCSB Linguistics was created to realize a vision of linguis…

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Comunidades Indigenas en Liderazgo (CIELO)

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Comunidades Indigenas en Liderazgo (CIELO)

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Comunidades Indígenas en liderazgo (CIELO) is an Indigenous women-led non-profit organization that works jointly with Indigenous communities residing in Los Angeles. One of our priorities is to fight for social justice through a cultural lens. Our fight for social justice includes ending gender-based violence, providing language access rights, cultural preservation, and reproductive justice. CIELO is a link, a resource, and a liaison for migrant Indigenous communities residing in Los Angeles.

Learn about Indigenous migrant communities through CIELO's, We are here map:

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Centro Binacional del Desarrollo Indigena Oaxaqueño (CBDIO)

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Centro Binacional del Desarrollo Indigena Oaxaqueño (CBDIO)

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The Centro Binacional para el Desarrollo Indígena Oaxaqueño (CBDIO) was created to serve the indigenous communities from the state of Oaxaca, Mexico that reside in California.

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Common Acronyms Used in California Special Education

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Both Individualized Education Programs (IEPs) and 504 plans can offer formal help for K-12 students who are struggling in school. They're similar in some ways but very different in others. This chart compares them side by side to help you understand the differences.

A blueprint or plan for a child's special education experience at school.

A blueprint or plan for how the school will provide support and remove barriers for a student with a disability.

To get an IEP, there are two requirements: A child has one or more of the 13 disabilities listed in IDEA. The law lists specific challenges, like learning disabilities, ADHD, autism, and others. And the disability must affect the child's educational performance and/or ability to learn and benefit from the general education curriculum. The child must need specialized instruction to make progress in school.

To get a 504 plan, there are two requirements: A child has any disability. Section 504 covers a wide range of different struggles in school. And the disability must interfere with the child's ability to learn in a general education classroom. Section 504 has a broader definition of a disability than IDEA. (It says a disability must substantially limit one or more basic life activities. This can include learning, reading, communicating, and thinking.) That's why a child who doesn't qualify for an IEP might still be able to get a 504 plan.

There are strict legal requirements about who participates. With a few exceptions, the entire IEP team must be present for IEP meetings. The team must include:

The rules about who's on the 504 team are less specific than they are for an IEP. A 504 plan is created by a team of people who are familiar with the child and who understand the evaluation data and special services options. This might include:

* The child's parent or caregiver

* General and special education teachers

* The school principal

* The child's parent or caregiver

* At least one of the child's general education teachers

* At least one special education teacher

* A school psychologist or other specialist who can interpret evaluation results

* A district representative with authority over special education services

The IEP sets learning goals and describes the services the school will provide. It's a written document. Here are some of the most important things the IEP must include:

There is no standard 504 plan. Unlike an IEP, a 504 plan doesn't have to be a written document. A 504 plan generally includes the following:

* Specific accommodations, supports, or services for the child

* Names of who will provide each service

* Name of the person responsible for ensuring the plan is implemented

* The child's present levels of academic and functional performance - how the child is currently doing in school

* Annual education goals for the child and how the school will track progress

* The services the child will get - this may include special education, related, supplementary, and extended school year services

* The timing of services - when they start, how often they occur, and how long they last

* Any accommodations - changes to the child's learning environment

* Any modifications - changes to what the child is expected to learn or know

* How the child will participate in standardized tests

* How the child will be included in general education classes and school activities

When the school wants to change a child's services or placement, it has to tell families in writing before the change. This is called prior written notice. Notice is also required for any IEP meetings and evaluations. Families also have "stay put" rights to keep services in place while there's a disagreement about the IEP.

The school must notify families about an evaluation or a "significant change" in placement. Notice doesn't have to be in writing, but most schools do so anyway.

How to resolve disputes

IDEA gives families several ways to resolve disputes (usually in this order):

Section 504 gives families several options for resolving disagreements with the school:

* Mediation

* Alternative dispute resolution

* Impartial hearing

* Complaint to the Office for Civil Rights (OCR)

* Lawsuit

* Mediation

* Due process complaint

* Resolution session

* Civil lawsuit

* State complaint

* Lawsuit

And if you need help navigating special education law in your state, consider reaching out to your local Parent Training and Information Center. The people there can answer questions and give practical advice on issues specific to your area.

Do you want to learn more about how IEPs and 504 plans compare? Watch as an expert explains the differences between them.

About the author

About the author

The Understood Team is made up of passionate writers and editors. Many of them have kids who learn and think differently.

Reviewed by

Reviewed by

Andrew M.I. Lee, JD is an editor and attorney who strives to help people understand complex legal, education, and parenting issues.

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The difference between IEPs and 504 plans

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Individualized Education Programs (IEPs) and 504 plans are similar but different. See how they compare in what they provide and the processes and laws involved.

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Helping Children with Special Needs Transition to Kindergarten

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Helping Children with Special Needs Transition to Kindergarten

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Teacher-tested tips for preparing children in early childhood special education for kindergarten.

Bob Ebbesen / Alamy Stock Photo

The transition from a small early childhood special education (ECSE) class to kindergarten can be exciting yet overwhelming for students with disabilities and their families. Students face a lot of adjustments: a longer school day, a larger class size, new classmates, and new teachers.

For the past five years, I've worked with dozens of children and their families to help them adjust to this new environment. I've learned that the following strategies facilitate a smooth transition, decrease students' anxiety, and prepare them for success.

Using Social Stories

Social stories were developed for higher-functioning students with autism; however, they can be helpful for students with other disabilities as well. According to Carol Gray, the creator of social stories, the goal of a social story is to "share accurate information using a content, format, and voice that is descriptive, meaningful, and physically, socially, and emotionally safe."

Social stories should include descriptive sentences ("Next year, I will be in a new classroom with a new teacher and new rules"), perspective sentences ("I may feel scared or nervous in my new classroom"), directive sentences ("I will work on learning the new rules and listening to my new teacher"), and affirmative sentences ("My new teacher will be happy when I follow the new rules"). For preschool-age children, pictures also can make the story more comprehensible.

The following is a social story I have used with my students.

Transition IEP Meeting

Although there are currently no laws requiring schools to have a transitional individualized education program (IEP) meeting when a student exits an ECSE program, it can be helpful for the kindergarten staff and families to hold such a meeting. These meetings allow the ECSE and kindergarten special education staff to collaboratively create a transition plan and IEP that will support and meet the needs of the student. Depending on the situation and the school's setup, it may also be beneficial to have a general education kindergarten teacher attend the meeting in order to answer the family's questions, discuss accommodations and modifications, and make a plan for inclusion.

Observations

The student should have the opportunity to visit their new classroom(s) and may benefit from participating in story time or snack time there. This will also allow staff to see what additional supports the student may need to be successful in their new environment (such as noise-canceling headphones in a large group setting or a designated spot to sit on the carpet).

Additionally, the kindergarten special education teacher and/or teaching assistants may benefit from observing the student in the current ECSE classroom. Observation will show them how the student communicates, interacts with staff and peers, participates in group activities, and demonstrates self-help skills.

Photo Book

Another transition support that can help students is a teacher-created book with photos of the student's new special education teacher and teaching assistants, kindergarten teacher, classrooms, lunchroom, etc. Families can read this book with the child over the summer. This is different from a social story in that it does not include feelings, expected behaviors, or perspective taking.

Orientation Considerations

At the beginning of the school year, many school districts host a kindergarten orientation, when students and their families meet the teacher, drop off school supplies, and learn the policies, procedures, and expectations for kindergarten. These orientations usually have a group of four to five students attending at a time. For some students with disabilities, an individual orientation may be more appropriate and/or less overwhelming. The family may also feel more comfortable asking questions and sharing relevant information about the student and their disability.

Modifications

What visuals, language, and expectations can I introduce so my students have a smooth transition?

What activities, materials, or expectations might need to be adapted or modified for my students once they're in kindergarten?

What self-help or functional skills do I need to work on with my students to promote independence and confidence in kindergarten?

Lastly, I recommend that ECSE teachers observe both the general education and special education kindergarten classrooms. Some things to consider while observing the new environments:

The end of the year is always bittersweet for me: I'm so excited for my students to begin the next chapter in their lives as kindergarteners, but at the same time, I'm sad to say goodbye to students I've had the joy and privilege of working with for two to three years. Each year, I utilize all of these tips to individually support my students as they transition to kindergarten.

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Helping Children With Special Needs Transition to Kindergarten

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Teacher-tested tips for preparing children in early childhood special education for kindergarten.

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Black and Latino students in Berkeley Unified are overrepresented in special ed

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Black and Latino students in Berkeley Unified are overrepresented in special ed

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Washington Elementary School fourth grade teacher Dawn Bail instructs her class on Aug. 16, 2021. Credit: Kelly Sullivan

A disproportionate number of Black and Latino students are enrolled in special education at Berkeley Unified, and over the last five years, those numbers have increased, according to data the school district submitted to the California Department of Education.

This spring, the board approved a plan to address the "significant disproportionality" of Black students in certain special education categories, a requirement for all school districts with racial disparities in their special education enrollment at least three years in a row. BUSD submitted a similar plan to the state during the 2019-20 school year.

In 2017, a quarter of the Black students in the district were in special education. By 2021, that number increased to 28%, ticking upward by about 1% per year. The share of Latino students in special education also rose from 13.8% to 16.3% over the same period. By comparison, the overall percentage of students in special ed is much lower, though it also increased, from 11.3% to 12.2% of the student body.

Parents and advocates say the plan - and the data included in it - should be a wake-up call for the district, which has had disproportionate numbers of Black students in special education for years and could soon face the same problem for Latino students.

"I am completely in awe of this district's complacency around such results, and it is not acceptable," Laura Babbitt, vice president of the school board, said at an April 13 meeting. "We must work towards real systemic change and dispense with the window dressing."

From 2011 to 2016, the state identified BUSD as having too many Black students classified as "emotionally disturbed."

In 2019-20, BUSD had disproportionate numbers of Black students in special education overall and in certain categories, specifically learning disabilities like dyslexia, intellectual disabilities like Down syndrome, and other health impairments like ADHD. Disparities in the same special education categories are reflected in this year's plan.
Read the full 2021 plan Berkeley Unified was required to submit to the state.
The topic is a wrought one in Berkeley schools, where some parents fight to get special education services for their children, while others feel their kids have been unnecessarily placed in the program.

"On the one hand, it can be a good thing if we provide the resources to empower these individuals. But the other side of the disability idea is that it can also be used to exclude and stratify," said Alfredo Artiles, a professor at Stanford University specializing in special education.

Shawn Mansager, the director of special education at Berkeley Unified, wrote in an email to Berkeleyside that the data reveals "problems with the fairness and effectiveness of the overall educational system that need to be addressed."

But however hard a school district works to address disproportionality, factors outside of its control - things like intergenerational poverty and the demographic makeup of its schools - will continue to play a significant role.

"School systems have their hands tied because they have no way of addressing those broader, troubling effects," Artiles said.

A plan to address disproportionality

The school board approved the latest Comprehensive Coordinated Early Intervening Services, or CCEIS, plan in April, sharing what the district will do in the coming three years and some data about how the interventions worked this year.

The latest plan identifies students who are more likely to be referred to special education - who are struggling academically, miss a lot of school, come from low-income families, or have been referred to the office multiple times - but do not receive special ed services. The idea is to see if schools can help students without putting them in special education.

It targets a small sample of struggling students in Berkeley schools. There are 173 students included in Berkeley's 2021-22 plan, 60% of whom are Black, and 36% are Latino. They come from Longfellow Middle School, Berkeley Arts Magnet, Malcolm X Elementary, Oxford Elementary, Washington Elementary and a handful of preschools.

According to the plan, the students' test scores, as well as their behavior and attendance, are closely monitored for improvement over the next three years. They should receive a host of support, including tutoring, instructional coaching for their teachers, regular family meetings, and an attendance team looking out for them.

Instead of an Individualized Education Plan (IEP), which outlines the services students with disabilities are legally entitled to receive, the chosen students - called "vision scholars" - get Individualized Learning Plans (ILP).

BUSD allotted $340,000 for its most recent plan, though much more money is devoted to other programs designed to raise achievement and belonging for Black and Latino students such as the STEM Steps Program, Bridge and Umoja.

The government requires that districts spend 15% of their special education dollars on CCEIS.

Overall, it's not clear to what extent the 2019-20 plan has helped support Black students without resorting to special education, partly because the pandemic has made the program harder to implement, and enrollment declines make the data harder to understand.

Over the next two years, the number of Black and Latino students in special education increased, more than students of other races or ethnicities. The total number of students in special education - 12% - held about constant. Since BUSD lost about 900 students over the course of the pandemic, the actual number of students receiving services fell overall, including the number of Black and Latino students.

At the April school board meeting, Ruth Steele-Brown, the district's director of data and research, shared data on how students in the CCEIS program were faring this year. The data, which shows how students' test scores changed over the course of the first semester, were somewhat positive for reading but dismal for math.

The most positive outcome of the program so far is that this year the students receiving support are not falling further behind their peers in reading. Students in the program at Longfellow have made particularly strong gains in reading compared to their peers. It's a different story in math, where the gap in student outcomes grew larger.

Overall, student outcomes fluctuated between grades, suggesting that standout teachers might be making a big difference in student outcomes. However, the results, which are only for one semester, are tentative.

The district is expected to give the school board quarterly updates on the progress of the CCEIS program.

Long-standing trends in the United States

The trend is not new: Historically, Black and Latino students have been overrepresented in special education, though the trends vary on the local level.

After the Brown v. Board of Education decision required schools to desegregate in 1954, some Black students were assigned to special education to separate them from white students. Two years after the ruling, the number of students in Washington, D.C.'s special education program doubled. By 1956, 77% of students in the program were Black.

English learners are also more likely to be placed in special education and misdiagnosed with learning disabilities without being tested in their native language.

Academics have written about the problem of disproportionality in special education for decades, establishing extensive research on the topic. More recently, the federal government required school districts to do something about it through the CCEIS plans.

This year, 109 school districts in California were required to submit a CCEIS plan. Of those districts, 29, including Berkeley, had disproportionate numbers of Black students in certain special education categories. Twenty-eight had disproportionate numbers of white students - many were for emotional disturbance - and 48 had disproportionate numbers of Latino students.

In theory, disabilities would be equally distributed across all demographic groups. But in reality, "chronic intergenerational exposure to poverty" impacts child development and increases the likelihood that someone will be diagnosed with a disability, Artiles, the Stanford professor, explained.

Because race and poverty are deeply entwined in the United States, we shouldn't expect students of different races to be enrolled in special education at the same rates.

Research by Paul Morgan, who directs the Center for Educational Disparities Research at Pennsylvania State, has called into question long-standing beliefs about race and special education.

In an analysis that gained national media attention, Morgan and other researchers found that Black and Latino students are actually underrepresented in special education when compared to "otherwise similar White, English-speaking children." Morgan's findings cast doubt on the federally mandated initiatives to reduce racialized disproportionality.

Other scholars disagreed, pointing out flaws in Morgan's research. In a response paper, Artiles and other researchers countered that Morgan's data shows no evidence that poverty fully accounts for racial disproportionality and that his report ignores the impact of local factors that shape special education enrollment by race, including state, district size, district demographics and disability. For example, Black and Latino students are more commonly overrepresented in special education in districts with more high-income students.

Why is it happening in Berkeley?

The Berkeley school district, advocates, and parents tend to agree on the underlying reasons that there are more Black and Latino students in special education: A failure of the school district to meet the students' needs in the general education classroom.

The district's CCEIS plan lists four "root causes" to explain the persistent racial disproportionality in special education. The reasons included in the plan were developed from interviews with teachers, as well as Black parents and students:

The educational community "lacks the political will and focus to make sustained and evidence-based change to improve the outcomes" for Black students

The district fails to share data about students' academic progress

The district does not implement culturally responsive instruction or consistent interventions, nor does not discipline students fairly

Black students lack caring relationships with adults that could help them succeed.

"To be honest, there has always been a concerted effort to appear to address the problem, which is different from a concerted effort to actually address the problem," said Jennifer Obidah, a parent who holds a doctorate in education from UC Berkeley and whose daughter just graduated from Berkeley High."

To some parents, the plan and the numbers included in it tell a story of a school district repeatedly failing to meet the needs of many Black and Latino students and, instead of addressing that failure, depositing students in special education, raising the issue of misdiagnoses.

"I get worried when I look at all these English language learners that get placed in special education," said Gladys Ocampo Stout, a parent involved in Latinos Unidos de Berkeley, a parent advocacy group for Latino students. "It's hard not to assume" that students are getting placed in special education unnecessarily. There's such a history of that."

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Some disabilities are relatively clear cut, like Down syndrome, while others are more subjective, requiring judgment calls from people assessing the child. This is where many fear that bias filters in and lead to misdiagnosis.

"You would think that if a child is placed in special education, they will be placed there because they need it, and not because they're just lacking in a little area where they can get the extra help," said La'Shonda, whose son will be in fourth grade next year. (She declined to use her last name.)

La'Shonda's son isn't in special education, but he gets extra support in math and reading. With some one-on-one attention, she says her son has succeeded. When La'Shonda learned about how many Black students were in special education, she said it motivated her to get involved with the issue.

One of those alternate resources is a 504 Plan. A step down from an IEP offered to students in special education, the 504 plan affords students tailored support but doesn't come with the label. Students with a wider range of disabilities are eligible for a 504 plan. The 2019-20 CCEIS plan listed that Black students may be less likely to be offered 504 plans than their peers.

When you look at 504 plans, that racial disproportionality vanishes. From 2017-2020, white students made up 47% of students with 504 plans, while Black students were 12%, Latino students were 18%, and Asian students 7%.

Tatiana Guerreiro Ramos, a special education advocate, believes the problem isn't so much that more Black and Latino students are getting Individualized Education Plans (IEPs); rather, schools are failing Black and Latino students in general education and using special education as a band-aid.

In her job as an advocate, she fights for students to get more special education resources, not less. Though, she agrees that some students are being misdiagnosed.

"It's a lack of creativity," Guerreiro Ramos said. "Sometimes kids don't need an IEP. What they need is a space where they're made to feel good about themselves as learners."

Gaps in student outcomes have persisted for decades, but during the pandemic, many students faced additional challenges, from isolation to financial instability, that set them behind further.

In 2019, 57% of Black students met UC and CSU course requirements, compared with only 24% of Black students in 2021. The share of white and Latino students who met UC and CSU requirements also plummeted, dropping from 91% to 73% for white students, and 70% to 50% for Latino students, respectively. Asian students meeting UC requirements declined slightly from 78% to 74%.

BUSD has implemented a host of programs over the years to improve outcomes for Black and Latino students. In the last two years, the school board has passed two resolutions specifically dedicated to the academic achievement and belonging of Black and Latino students - the Black Lives Matter and the Latinx resolutions.

Those resolutions have led to the development of plans over the last year, but it remains to be seen how they will be implemented.

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Black and Latino students in Berkeley Unified are overrepresented in special ed

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A disproportionate number of Black and Latino students are enrolled in special education at Berkeley Unified, and over the last five years, those numbers have increased, according to data the school district submitted to the California Department of Education.

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Disproportionality is the overrepresentation of a specific race or ethnicity identified in one or more of four areas: identification of a disability in general; identification of a specific race or ethnicity in a specific disability category; discipline; and placement.

Significant Disproportionality is the identification of disproportionality for three consecutive years in the same indicator and category of disproportionality.

Under the Federal Individuals with Disabilities Education Act (IDEA) requirements, if a local educational agency (LEA) is identified as significantly disproportionate, the LEA must reserve 15 percent of its 611 and 619 IDEA grant funds to provide Comprehensive Coordinated Early Intervening Services (CCEIS) to students in the LEA. These services are for children from age 3 through grade 12, particularly, but not exclusively, children in those groups that were significantly over-identified who need additional academic and behavioral supports.

These LEAs have been identified as significantly disproportionate for the 2021-22 school year.

For more information about Disproportionality, Significant Disproportionality, and the CCEIS process in Special Education, please refer to the State Performance Plan Technical Assistance Project website .

For questions regarding Disproportionality, please email Dispro@cde.ca.gov.

For questions regarding Significant Disproportionality in Special Education, please email SigDisp@cde.ca.gov.

Last Reviewed: Thursday, July 22, 2021

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Disproportionality is the overrepresentation of a specific race or ethnicity identified in one or more of four areas: identification of a disability in general; identification of a specific race or ethnicity in a specific disability category; discipline; and placement. Significant Disproportionality is the identification of disproportionality for three consecutive years in the same indicator and category of disproportionality.

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Center on the Developing Child at Harvard University

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What could our society look like if racial disparities in health and learning outcomes didn't exist? According to extensive studies, the U.S. would save billions in health care costs alone. The value of realizing the potential contributions of so many people around the world who are impaired by-or die from-preventable chronic illnesses is enormous, and the human costs are incalculable.

Advances in science are presenting an increasingly clear picture of how significant adversity in the lives of young children can disrupt the development of the brain and other biological systems. These early disruptions can undermine young children's opportunities to achieve their full potential. And, while they may be invisible to those who do not experience them, there is no doubt that both systemic racism and interpersonal discrimination can lead to chronic stress activation that imposes significant hardships on families raising young children.

It's time to connect these dots. This infographic explains in basic terms how racism in particular gets "under the skin" and affects learning, behavior, and lifelong health. There is much more to say, but by starting with a shared understanding, we can work together toward creative strategies to address these long-standing inequities.

Sources
Panel 1
Forde, A.T., Crookes, D.M., Suglia, S.F., & Demmer, R.T. (2019). The weathering hypothesis as an explanation for racial disparities in health: a systematic review. Annals of Epidemiology, 33, 1-18.e3
Panel 2
Geronimus, A.T., Hicken, M., Keene, D., & Bound, J. (2006). "Weathering" and age patterns of allostatic load scores among blacks and whites in the United States. American Journal of Public Health, 96(5), 826-833.

McEwen, B.S. (1998.) Protective and damaging effects of stress mediators. New England Journal of Medicine, 338(3), 171-9.
Panel 3
Williams, D.R., & Wyatt, R. (2015). Racial Bias in Health Care and Health: Challenges and Opportunities. JAMA 314(6): 555-556.

Williams, D.R., Mohammed, S.A., Leavell, J., & Collins, C. (2010). Race, socioeconomic status and health: Complexities, ongoing challenges and research opportunities. Annals of the New York Academy of Sciences, 1186, 69.

Panel 4
Agency for Healthcare Research and Quality (2019). 2018 National Healthcare Quality and Disparities Report. Rockville, MD. AHRQ Pub. No. 19-0070-EF https://www.ahrq.gov/sites/default/files/wysiwyg/research/findings/nhqrdr/2018qdr-final-es.pdf

Manuel J. I. (2018). Racial/Ethnic and Gender Disparities in Health Care Use and Access. Health Services Research, 53(3), 1407-1429.
Panel 5
Heard-Garris, N.J., Cale, M., Camaj, L., Hamati, M.C., & Dominguez, T.P. (2018). Transmitting trauma: A systematic review of vicarious racism and child health. Social Science & Medicine, 199, 230-240.

Pachter, L.M., & Coll, C.G. (2009). Racism and child health: a review of the literature and future directions. Journal of Developmental and Behavioral Pediatrics, 30(3), 255-263.

Clark, R., Anderson, N.B., Clark, V.R., & Williams, D.R. (1999). Racism as a stressor for African Americans: A biopsychosocial model. American Psychologist, 54(10), 805- 816.
Panel 6
Trent, M., Dooley, D.G., & Dougé, J. (2019). The impact of racism on child and adolescent health. Pediatrics, 144(2), e20191765.

Williams, D. R., & Cooper, L. A. (2019). Reducing Racial Inequities in Health: Using What We Already Know to Take Action. International Journal of Environmental Research and Public Health, 16(4), 606.
Panel 7
Collins, C., Asante-Muhammed, D., Hoxie, J., & Nieves, E. (2017). The road to zero wealth: How the racial wealth divide is hollowing out America's middle class. Washington, DC: Prosperity Now and Institute for Policy Studies.

Weir, K. (2016). Policing in Black & White. Monitor on Psychology, 47(11). Retrieved from http://www.apa.org/monitor/2016/12/cover-policing
Panel 8
National Scientific Council on the Developing Child. (2020). Connecting the Brain to the Rest of the Body: Early Childhood Development and Lifelong Health Are Deeply Intertwined: Working Paper No. 15. Retrieved from www.developingchild.harvard.edu

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How Racism Can Affect Child Development - Center on the Developing Child at Harvard University

# data[].attributes.attachment_link.description
What could our society look like if racial disparities in health and learning outcomes didn't exist? According to extensive studies, the U.S. would save billions in health care costs alone. The value of realizing the potential contributions of so many people around the world who are impaired by-or die from-preventable chronic illnesses is enormous, and [...]

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¿Cómo se preparan los niños para la escuela? Vea nuestra infografía sobre cómo la preparación para la escuela comienza desde el nacimiento.

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How do children become ready for school? Learn how school readiness begins at birth since everyday experiences shape early learning.

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NCLD has created the IDEA Parent Guide to help you become an informed and effective partner with school personnel in supporting your child's special learning and behavioral needs. Use this guide to understand:

How the federal law, the Individuals with Disabilities Education Act (IDEA), generally works in most states;

What the law requires to determine whether your child has a learning disability;

What is new to IDEA since Congress last updated the law in 2004;

What questions you should ask and what information you should prepare in order to be a full and active advocate for your child, and

What resources are available to you.

In developing the IDEA Parent Guide, we worked with parents of students with learning disabilities from around the country. NCLD is thankful to these parents for their invaluable input. Together, we have tried to address the questions, challenges and barriers parents face as they navigate their way through the special education process. Parents have also contributed their own personal stories so that you can hear firsthand that you are not alone in this journey.

NCLD has created the IDEA Parent Guide to help you become an informed and effective partner with school personnel in supporting your child's special learning and behavioral needs.

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To access the full report, please provide your information

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NCLD has created the IDEA Parent Guide to help you become an informed and effective partner with school personnel in supporting your child's special learning and behavioral needs. Use this guide to understand: How the federal law, the Individuals with Disabilities Education Act (IDEA), generally works in most states; What the law requires to determine [...]

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Parents of children with disabilities from ages three through twenty-one have specific educational rights under the Individuals with Disabilities Education Act (IDEA). These rights are called procedural safeguards. Individuals serving as surrogate parents and students aged eighteen receiving special education services, are also entitled to these rights.

A number of staff in the child's district and special education local plan area (SELPA) may answer questions about the child's education and the parents' rights and responsibilities. When the parent has a concern, it is important that they contact their child's teachers or administrators to talk about their child and any problems they see. This conversation often solves the problem and helps maintain open communication.

Parents must be given opportunities to participate in any decision-making meeting regarding their child's special education program. Parents have the right to participate in individualized education program (IEP) meetings about the special education eligibility, assessment, educational placement of their child and other matters relating to their child's free appropriate public education (FAPE).

When a parent cannot be identified or located, a district may appoint a surrogate parent to represent a child with a disability.

What Are Parents' Rights in California Special Education?

Parents and students over age eighteen have the right

Parents have the right to refer their child for special education services, to participate in the development of the IEP and to be informed of all program options and alternatives, both public and nonpublic.

Parents have a right to receive prior written notice, in their native language, when the school district initiates or refuses their request to initiate a change in their child's identification, assessment, or educational placement in special education.

Parents must provide informed, written consent before their child is assessed or provided with any special education services. Parental consent must also be provided before any change in special education services may occur. The district must ensure that parents understand proceedings of the IEP team meeting including arranging for an interpreter for parents with deafness or those whose native language is other than English.

Parents may refuse to consent to an assessment or the placement of their child in special education.

Children must be assessed for special education through the use of methods that are not culturally biased or discriminatory.

If parents disagree with the results of the assessment conducted by the school district, they have the right to ask for and obtain an independent educational evaluation (IEE) at public expense.

The parent is entitled to only one IEE at public expense each time the public agency conducts an evaluation with which the parent disagrees.

When a parent requests an IEE at public expense, the school district must, without unnecessary delay, either ensure that an IEE is provided at public expense, or request a due process hearing if the district believes their assessment was appropriate and disagrees that an IEE is necessary. The school district also has the right to establish the standards or criteria (including cost and location) for IEEs at public expense.

Parents have a right to inspect, review, and obtain copies of their child's educational records.

If parents disagree with the district regarding their child's special education placement or a proposed change in placement, the law requires the student to "stay put" in the current program until the dispute is resolved.

Parents have the right to present a complaint relating to the provision of a FAPE for their child; to have an attorney, an advocate, and the student, if appropriate, present at the due process hearing; and to make the hearing public. Under certain conditions, the hearing officer may award, reduce, or deny the reimbursement of attorneys' fees and fees paid to nonpublic institutions by parents in the settlement of a case. To request a due process hearing or to receive a complete notice of procedural safeguards related to a due process hearing, contact the Office of Administrative Hearings (see contact information below).

Parents are encouraged to consider settling disagreements regarding their child's special education program through voluntary mediation, a process through which parties seek mutually agreeable solutions to disputes with the help of an impartial mediator. Mediation is available for:

Mediation of State Complaint - the California Department of Education is required to offer mediation to the parent or the local educational agency (LEA) but both must agree, and participation is voluntary.

Office of Administrative Hearings (OAH) Mediation Only - Parent or LEA may file for OAH mediation only. Participation is voluntary.

Parents may seek mediation alone or separate from due process, or they may participate in mediation pending a due process hearing. Mediation cannot be used to delay parents right to a due process hearing.

If parents believe their child's school district has violated the law, they may file a complaint with the California Department of Education. The Department must investigate complaints alleging violations of noncompliance with IDEA, state special education laws, or regulations, and issue a written report of findings within 60 days of receiving the complaint.

There are specific rules regarding the suspension and expulsion of students with IEPs. Generally, a student with a disability may be suspended or placed in an alternative educational setting to the same extent that these options apply to students without disabilities.

If the student with a disability is in such a placement for more than ten days, an IEP meeting must be held to consider the appropriateness of the child's current placement and the extent to which the disability is the cause of the misconduct. Regardless of the child's placement, the district must provide FAPE

School districts are responsible for identifying, locating and assessing students with disabilities enrolled in private schools by their parents. However, school districts are not required to provide special education or related services to these students. There is no entitlement for services, though some private schools and students attending private schools may receive some services from the school district.

Additional Resources

This notice is an abbreviated summary of procedural safeguards under federal and state laws (20 United States Code Section 1412[d]; 34 Code of Federal Regulations 300.504; California Education Code sections 56301[d][2], 56321, and 56341.1[g][1]). Special Education Rights of Parents and Children, a more extensive description of these rights, is available from the California Department of Education, Special Education Division.

To obtain more information about parental rights or dispute resolution, including how to file a complaint, contact the California Department of Education, Special Education Division, Complaint Support Unit, by telephoning 800-926-0648 or writing to:

Email: speceducation@cde.ca.gov
Fax: 916-327-3704

California Department of Education
Special Education Division
Complaint Support Unit
1430 N Street, Suite 2401
Sacramento, CA 95814

To file for mediation or a due process hearing, contact:

Office of Administrative Hearings
Special Education Division
2349 Gateway Oaks, Suite 200
Sacramento, CA 95833-4231
Telephone: 916-263-0880
Fax: 916-376-4207
Secure Electronic Filing

Hearings and Mediations Accessibility and Accommodation Program Guidelines (Posted 17-Oct-2018)
This web page states a California Department of Education contractor conducting special education hearings and mediations must have and follow policies and procedures for equitable services to all participants.

Last Reviewed: Thursday, August 31, 2023

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A brief summary of Procedural Safeguards for students with disabilities receiving special education services.

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Si la crisis pone en peligro inmediato a cualquier persona, llame al 911. Si la crisis no implica peligro inmediato y si la persona en crisis tiene cobertura de seguro mediante un plan de salud, llame al plan de salud para que lo refieran a un proveedor de salud mental apropiado.

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Behavioral Wellness | Santa Barbara County, CA - Official Website

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Si la crisis pone en peligro inmediato a cualquier persona, llame al 911. Si la crisis no implica peligro inmediato y si la persona en crisis tiene cobertura de seguro mediante un plan de salud, llame al plan de salud para que lo refieran a un proveedor de salud mental apropiado.

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MEDICAL

FINANCIAL, FOOD & CLOTHING

LEGAL

Legal Aid Foundation has information for renters on Evictions & Paying Rent during COVID-19 as well as sample letters for landlords in English & Spanish.

OTHER

California Parent and Youth Helpline: provides support and resource referrals to parent and youth during the current COVID-19 pandemic, 7-days a week from 8:00 a.m. to 8:00 p.m. Call or text 1-855-4APARENT (855-427-2736) for services in English, Spanish and other languages. caparentyouthhelpline.org

Disaster Distress Hotline (Free multilingual crisis & counseling support): The Disaster Distress Helpline is a national hotline dedicated to providing immediate crsis counseling for people who are experiencing emotional distress related to any natural or human-caused disaster. They are available 24/7 to all residents in the US and its territories, 365 days a year, are multilingual and confidential. Call 1-800-985-5990 (press "2" for Spanish) or text "TalkWithUs" to 66746 ("Hablenos" for Spanish services) to connect with a trained crisis counselor.

Watch & listen

Volunteer & make a difference

Education & learning resources

SCHOOL DISTRICTS

ONLINE RESOURCES

LIBRARY & BOOKS

eBooks
**many apps only require a library card which you can sign up for with the local library.

Epic - [ask your school for a login] digital library for kids 12 and under

Libby App - read ebooks & audiobooks

Hoopla - borrow movies, music, audiobooks, ebooks, comics and TV shows on your device

Mango - learn a new language

RB Digital - read magazines

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Youth and Family Mental Health Resources

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YouthWell works collaboratively with our Santa Barbara County community organizations to simplify access to resources for youth ages 10-25 and their families. Find a complete list of organizations providing youth and family mental health and wellness services. Find crisis resources, therapists, treatment programs, parent and youth support groups, and more.

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Children are our most valuable resource. The investment we make in them today will benefit all of California tomorrow. Early intervention services make a difference in the lives of infants and toddlers with developmental delays or disabilities and their families.

The federal Individuals with Disabilities Education Act (IDEA), Part C, and the California Early Intervention Services Act (CEISA) ensure that infants and toddlers with disabilities and their families receive coordinated services early enough to make a difference. In California, Early Start is the system of early intervention services developed in accordance with IDEA and CEISA to supports and enhances the capability of every family with an infant or toddler with a disability to meet the special developmental needs of their child. The California Department of Developmental Services (DDS) is the state's lead agency to implement the statutes and regulations of both IDEA Part C and CEISA through the Early Start program.

Through Early Start, California is committed to support infants and toddlers with disabilities and their families. Based on the needs of the child and family, early intervention services maximize the developmental potential of infants and toddlers with disabilities within the context of their daily routines and activities, increasing their potential to live independently and exercise their full rights as citizens. The earlier intervention is started, the more likely it is that the educational achievement and quality of life for children with disabilities will be higher.

This Central Directory of California Early Intervention Resources was developed in accordance with federal and state statutes and regulations* to "include information on early intervention services, resources, and experts available in the state..." [20 United States Code 1435 Section 635(a)(7); 34 Code of Federal Regulations Section 303.117; CEISA Section 95022(a)]. The "Central Directory" is a product of DDS, produced and maintained through a contract with the California Early Intervention Technical Assistance Network at WestEd Center for Prevention & Early Intervention.

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1 About the Early Start Directory | CEITAN Early Start

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Children are our most valuable resource. The investment we make in them today will benefit all of California tomorrow. Early intervention services make a difference in the lives of infants and toddlers with developmental delays or disabilities and their families.

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Copyright © 2014-2022 Understood for All Inc.

Understood is a tax-exempt 501(c)(3) private operating foundation (tax identification number 83-2365235). Donations are tax-deductible as allowed by law. Understood does not provide medical or other professional advice. The health and medical related resources on this website are provided solely for informational and educational purposes and are not a substitute for a professional diagnosis or for medical or professional advice.

Use of this website is subject to our Terms of Use and Privacy Policy.

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Copyright © 2014-2022 Understood for All Inc. Understood is a tax-exempt 501(c)(3) private operating foundation (tax identification number 83-2365235). Donations are tax-deductible as allowed by law. Understood does not provide medical or other professional advice.

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Explaining privilege to children through a race | The School That Tried To End Racism

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CenCal Health | Medi-Cal Assistance, affordable health insurance for Santa Barbara, San Luis Obispo Counties | CenCal Health Insurance Santa Barbara and San Luis Obispo Counties

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Low Cost Health Insurance Plans in California for individuals, students, families

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SB 75 Report Addendum: Part C to B October 2021

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SB 75 Report Addendum: Part C to B October 2021

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Senate Bill 75 Part C to B for CA Kids Workgroup Recommendations 

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Senate Bill 75 Part C to B for CA Kids Workgroup Recommendations 

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CommUnify - Formerly Community Action Commission of Santa Barbara County

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CommUnify, formerly Community Action Commission, provides low-income assistance programs to individuals and families in Santa Barbara County. We offer a variety of education and support services aimed at promoting the independence of individuals of all ages.

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Lifespan Support Services Team / Equipo de Servicios de Apoyo de Por Vida

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Lifespan Support Services Team / Equipo de Servicios de Apoyo de Por Vida

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LSS Contact Information & Alpha QR Codes

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Family Resource Center Team / Equipo del Centro de Recursos Familiares

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Family Resource Center Team / Equipo del Centro de Recursos Familiares

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FRC Contact Information & QR Codes August 2022

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The primary provider of services for school-aged children is the publicly funded educational system. In some situations, the planning team may determine that additional, non-educational services are needed to support a child and that Regional Center funding would be appropriate. Such services might include respite, behavioral services, supplemental daycare, or another service related to the child’s developmental disability.

A Public School Education
The primary provider of services for school-aged children with developmental disabilities is the publicly funded educational system. Children are entitled to free appropriate public education with non-disabled peers of similar ages. In some situations, the planning team may determine that additional, non-educational services are needed to support a child and that regional center funding would be appropriate. Such services might include respite, behavioral services, supplemental daycare, or another service related to the child’s developmental disability.

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Children’s Services - Tri Counties Regional Center

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Tri-Counties Regional Center provides supports and services for children and adults with developmental disabilities living in San Luis Obispo, Santa Barbara and Ventura Counties.

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Transition - What is It?
Transition is the process of change that occurs as your child approaches his/her 3rd birthday and the Early Start program ends. This is a time of many changes so we do our best to plan ahead. We call this process 'Transition Planning'.

Planning for transition typically starts 6 months before your child turns 3 to ensure that there is a plan of support in place to prepare you and your child for a change in services. Your Service Coordinator will schedule a transition meeting to discuss your plans for your child as his/her third birthday approaches. At this meeting you will review a variety of options that are available to all children in your community. Special education and regional center services after age 3 will also be discussed.

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Turning Age 3 - Tri Counties Regional Center

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Transition - What is It? Transition is the process of change that occurs as your child approaches his/her 3rd birthday and the Early Start program ends. This is a time of many changes so we do our best to plan ahead. We call this process 'Transition Planning'.

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Recursos para niños en condado de Santa Barbara pago 1

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Recursos para niños en condado de Santa Barbara pago 1

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Recursos para Niños en condado de Santa Barbara pago 2

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Recursos para Niños en condado de Santa Barbara pago 2

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Resource For Children in SB County page 2

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Resource For Children in SB County page 2

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Resource for Children in Santa Barbara County

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Resource for Children in Santa Barbara County

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_Simplified Resources for Children (Spanish) (2)

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If you are concerned about your child's development

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If you are concerned about your child's development

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Centers for Disease Control and Prevention

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Talk to Your Child's Doctor

As a parent, you know your child best. If your child is not meeting the milestones for his or her age, or if you think there could be a problem with the way your child plays, learns, speaks, acts, and moves talk to your child's doctor and share your concerns. Don't wait. Acting early can make a real difference!

Complete a Milestone Checklist for Your Child's Age

Ask About Developmental Screening

The American Academy of Pediatrics recommends that children be screened for general development using standardized, validated tools at 9, 18, or 30 months and for autism at 18 and 24 months or whenever a parent or provider has a concern. Ask the doctor about your child's developmental screening.

Easterseals, provides parents with FREE access to the Ages & Stages Questionnaires®, Third Edition, one of many general developmental screening tools. Click here to learn more and take the screening. Be sure to share the completed questionnaire and results with your child's doctor.
Learn more about developmental screening >

If you or the doctor thinks there might be a delay, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child.

Doctors your child might be referred to include:

Developmental pediatricians. These doctors have special training in child development and children with special needs.

Child neurologists. These doctors work on the brain, spine, and nerves.

Child psychologists or psychiatrists. These doctors know about the human mind.

At the same time as you ask the doctor for a referral to a specialist, call your state's public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor's referral or a medical diagnosis to make this call. Where to call for a free evaluation from the state depends on your child's age:

Children 0-3 Years Old

If your child is younger than 3 years old, contact your local early intervention system.

Find your state's early intervention contact information here.
Learn more about early intervention >
Children 3 Years Old or Older

If your child is age 3 or older, call any local public elementary school (even if your child does not go to school there) and say: "I have concerns about my child's development and I would like to have my child evaluated through the school system for preschool special education services."

If the person who answers is unfamiliar with preschool special education, ask to speak with the school or district's special education director.
Learn more about this process

Why Act Early?

If you're concerned about your child's development, don't wait. Acting early on developmental concerns can make a real difference for your child and you.
Learn more >

What to Say

If you're not sure what to say when you talk with your child's doctor or when you call to request an evaluation, visit our web page for some tips.
Tips for what to say >
While You Wait

If you have to wait to get an appointment to see a specialist or start intervention services, know that there are some simple things you can do today and everyday to help your child's development.
Tips for while you wait >
Recordkeeping Worksheet

Use this recordkeeping worksheet to help you keep track of your notes.
Sample recordkeeping worksheet >

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If You're Concerned About Your Child's Development

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If your child is not meeting the milestones for his or her age, or if you have concerns about development, talk to your child's doctor, share your concerns, and ask for a developmental screening.

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Centers for Disease Control and Prevention

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Skills such as taking a first step, smiling for the first time, and waving "bye bye" are called developmental milestones. Children reach milestones in how they play, learn, speak, act, and move.

Click on the age of your child to see the milestones:

"Learn the Signs. Act Early." materials are not a substitute for standardized, validated developmental screening tools.

Special acknowledgments to the subject matter experts and others who contributed to the review of data and selection of developmental milestones, especially Paul H. Lipkin, MD, Michelle M. Macias, MD, Julie F. Pajek, PhD, Judith S. Shaw, EdD, MPH, RN, Karnesha Slaughter, MPH, Jane K. Squires, PhD, Toni M. Whitaker, MD, Lisa D. Wiggins, PhD, and Jennifer M. Zubler, MD.
Sincere gratitude to Natalia Benza, MD and José O. Rodríguez, MD, MBA for their thoughtful review of the Spanish-language translation of these milestones.

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“learn the signs. act early.” milestones

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Developmental milestones are things most children can do by a certain age. Track your child's milestones and talk with your child's doctor at every visit about the milestones your child has reached

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CA Department of Developmental Services - Agency through which the State of California provides services and supports to individuals with developmental disabilities.

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Vision:

People with intellectual and developmental disabilities experience respect for their culture and language preferences, their choices, beliefs, values, needs, and goals, from a person-centered service system made up of a network of community agencies that provide high quality, outcome-based and equitable services.

Visión:

Las personas con discapacidades intelectuales y del desarrollo serán respetadas por sus preferencias culturales y lingüísticas, sus decisiones, creencias, valores, necesidades y metas, apoyados por un sistema de servicios centrado en las personas formado por una red de agencias comunitarias que brindan servicios de alta calidad con resultados y servicios equitativos.

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State of California & Department of Developmental Services

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Home - CA Department of Developmental Services

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People with intellectual and developmental disabilities experience respect for their culture and language preferences, their choices, beliefs, values, needs, and goals, from a person-centered service system made up of a network of community agencies that provide high quality, outcome-based and equitable services.

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Family Resource Centers Network of California

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Family Resource Centers Network of California

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Family Resource Centers Network of California

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As a coalition of Early Start Family Resource Centers, we train together, we set standards together, and we unite our voices together to advocate for better policies across the state.

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Home - Family Resource Centers Network of California

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A statewide network of Family Resource Centers dedicated to improving the lives of children with disabilities

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Special Education - Santa Barbara County Education Office

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Special Education - Santa Barbara County Education Office

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Special Education / Special Education Overview

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The Special Education division of SBCEO is comprised of three departments (Early Start, Special Education Preschool, Regional Center) that provide services to students with unique needs.

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Santa Barbara County Promotores Network - Santa Barbara County Education Office

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Santa Barbara County Promotores Network - Santa Barbara County Education Office

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Santa Barbara County Promotores Network / Promoters Homepage

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Promotores History The Promotores began in 2002 with three women who, while working in the Health Program Center for the Santa Barbara Neighborhood Clinics, through the clinic outreach, discovered that health issues were interconnected. Diabetes, Cancer Prevention, Well Child Check-ups, HIV/AIDS,…

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Santa Barbara County Education Office / SBCEO home page

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As we all grapple with the innumerable impacts that are reverberating throughout the world and in our close-knit communities due to the COVID-19 pandemic, on behalf of the Santa Barbara County Education Office, I want to first thank all those who are serving to support others during this unprecedented time.

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CAPTAIN California Autism Professional Training and Information

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CAPTAIN California Autism Professional Training and Information

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CAPTAIN Vision Statement

Establish a statewide training and technical assistance network focused on promoting the acceptance, support and quality of life for individuals on the autism spectrum, that is inclusive of partner agencies who will work collaboratively so that individuals on the autism spectrum and their families can benefit from effective services, supports and resources.

CAPTAIN Mission Statement

Increase knowledge about autism and Evidence Based Practices (EBPs) through systematic dissemination of information that is culturally relevant and respectful of the varied perspectives of people on the autism spectrum.

Improve implementation of EBPs with fidelity in schools and community settings through high quality training, coaching, and systems level support.

Increase consistency of EBPs use across systems by convening multiagency and regionalized workgroups that will assist with autism EBP integration into local service delivery systems.

Create an equipped workforce by collaborating with higher education, preparation programs and early career mentoring programs so that professionals entering into their careers will understand how to effectively support individuals on the autism spectrum.

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CA Autism Professional Training and Information Network - CAPTAIN

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CAPTAIN California Autism Professional Training and Information Network

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https://ncsi.wested.org/resources/leading-by-convening/

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Leading By Convening – National Center for Systemic Improvement

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Sustainable change depends on having people with the problem internalize the change. Heifetz and Linsky, 2002

For 15 years, the IDEA Partnership has been continuously learning how stakeholders can join with decision makers to achieve what has not been accomplished through other strategies. The Leading by Convening Blueprint presents lessons learned, particularly focusing on authentic engagement as the core commitment and convening as the leadership strategy that makes learning partnerships possible.

Contents
Download the Leading by Convening Blueprint Full PDF
In order to put the content of the blueprint into practice, below are a list of tools found within the Blueprint that can be used when meeting with partners and communities.

Coalescing Around Issues Tools

Ensuring Relevant Participation Tools

Doing the Work Together Tools

Bringing It All Together Tools

Meetings to Co-Create Tools

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Leading by Convening: A Blueprint for Authentic Engagement

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Sustainable change depends on having people with the problem internalize the change. Heifetz and Linsky, 2002 For 15 years, the IDEA Partnership has been continuously learning how stakeholders can join with decision makers to achieve what has not been accomplished through other strategies.

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Transition from Early Start (Open Access) FREE Course!

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Transition from Early Start (Open Access) FREE Course!

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https://www.cpeionline.net/local/intellicart/view.php?id=112

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Transition from Early Start (Open Access)

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https://earlystartneighborhood.ning.com/

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Posted by Ross Adams on January 3, 2022 at 8:00am

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The Early Start Neighborhood is a virtual community for Early Start professionals and partners to connect and find resources.

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https://alphasb.org/

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https://www.tri-counties.org/

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Tri-Counties Regional Center provides supports and services for children and adults with developmental disabilities living in San Luis Obispo, Santa Barbara and Ventura Counties.

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https://mixteco.org/

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https://centroderecursosalpha.org/