Tag: research

Indiana’s plan to improve conditions for those with autism has been outlined in the Indiana State Comprehensive Plan for Individuals with ASD. To explore the Comprehensive Plan in full, click the image below or DOWNLOAD (also at the bottom of this page).

Each action item noted under the goals below represent the priority action within these goal areas, as determined by the IIACC and workgroups. Other action items are also being addressed (see full Plan) but the priority areas enable a systematic and progressive approach towards stated action items.

Goals from the State Plan:

Click on each goal to read summaries & background research pertaining to the specific goal.

Indiana Autism Needs Assessment and ASD Through Lived Experiences (ASDLE) conducted by HANDS in Autism® are key components to provide a comprehensive overview and foundation for the current state of needs of individuals with ASD, their families, as well as diverse stakeholders working/interacting with individuals with ASD across lifespan and settings. Explore regional data snapshots used in the Comprehensive Plan.

Goal 1: Facilitation of IIACC Vision and Implementation.

• Increase sharing of general awareness and specific autism-related strategies and supports across people in all settings and roles related to ASD (e.g., individuals with ASD, families, service providers, other professionals, and anyone who interacts with individuals with ASD in the community).
• Improve access to resources and share experiences to address common needs within the state.
• Increase information sharing among decision makers about needs related to ASD across communities.

Background Research: Indiana Interagency Autism Coordinating Council (IIACC) is a workgroup of stakeholders that represent key organizations and agencies with interest in autism and that support the IIACC’s primary mission to “facilitate the efficient and effective exchange of information on autism-related activities among the member agencies, and to leverage resources and experiences to address common issues and outcomes, and to fill identified gaps” (INformation Network, 2020). On October 24, 2005, the Indiana Commission on Autism passed the resolution that the Indiana Family and Social Services Agency (FSSA) would serve as the lead agency to oversee and update the development of a comprehensive plan for services for individuals of all ages with autism spectrum disorder. Subsequently, FSSA through the Division of Disability and Rehabilitative Services (DDRS) contracted the Autism Society of Indiana from 2007-2012 and the HANDS in Autism® Interdisciplinary Training and Resource Center from 2014 to present to facilitate the Indiana Comprehensive State Plan for Individuals with autism spectrum disorder. The milestone activities and efforts by the IIACC are represented on the timeline below:

Goal 2: Family, Professional & Interprofessional Partnerships.

• Identify barriers for individuals, families/caregivers, providers, and other professionals to participate in continuous learning and access information.
• Establish opportunities for individual and collective continuous learning to improve awareness, partnership, and collaboration in responsive coordinated plans by actively incorporating reported concerns and integrate care coordination across systems.

Background Research: Individuals with ASD experience lifelong social, behavioral, and health-related impact as a result of the disorder. To address them, individuals with ASD need to have access to care offered by a variety of professionals, such as psychologists, social workers, occupational therapists, physical therapists, education providers, nurses, psychiatrists, healthcare providers and other service providers to name a few (Myers & Johnson, 2007).

Intervention programming is often set on the state level (CDC, 2015). Thus, types of services available may be dependent on state policies, as well as the lack of alignment between policies and clinical care (Doehring & Volkmar, 2016). Additionally, treatment plans, goals, and definition of outcomes vary across professionals representing different disciplines (Pecukonis et al., 2008). In turn, this leads to the disparity in quality and access to services, as well as the lacking standards of collaboration and partnership between families and service providers (Kohler, 1999; Mereoiu et al., 2015). Yet, the engagement of families in education and treatment of individuals with ASD is an important success factor (Bitsko et al. 2016; Kohler, 1999). Additionally, families often must be reactive in her communication and inform other healthcare providers of the situation, which can cause additional delays and break-down of communication (Severs et al., 2020). Families often share that primary care physicians do not adequately promote special services (Brachlow et al. 2007), as well as the discrepancy in understanding the needs of individuals with ASD between caregivers and providers (Carbone et al., 2009; Liptak et al, 2006).

Collaboration that facilitates interaction and shared experiences (joint meetings, shared planning, etc.) offers positive outcomes for individuals with ASD and their families (Loutzenhiser & Hadijistavropoulos, 2008). Positive impact has been shown by the use of a multidisciplinary approach to increase the effectiveness of health care services currently offered to individuals with ASD. Yet, such lack or breakdown in communication across professionals in such partnership may become a major determent (Strunk et al, 2017).

Goal 3: Early and Continuous Developmental and Medical Screening for ASD.

• Identify potential barriers and limitations for establishing awareness about early screening, identification of signs of ASD, developmental monitoring, and other comprehensive developmental evaluations.
• Provide evidence-based information and resources to build awareness across the state about:
  • universal early screening and identification of signs of ASD, developmental monitoring, and other comprehensive developmental evaluation,
  • benefits of such screening, monitoring, and early interventions,
  • recommended training curriculum across services and families, and
  • impact of coordinated and comprehensive service systems.
• Recognize innovative local and state efforts in implementing early screening and monitoring of ASD and dissemination of knowledge in efforts to establish sustainability and early access across the state.

Background Research: The American Academy of Pediatrics (2006) recommends that children be screened for developmental delays and disabilities at their 9-month, 18-month, and 24-month well-child doctor visits. However, some children present with ASD “red flags,” and may warrant ASD screening immediately. There are multiple considerations when screening for ASD:

• ASD is approximately four times more common in males than females (CDC, 2020), but it is possible that females are underdiagnosed (Dean et al., 2017)
• Siblings are 18.7% more likely to be diagnosed with ASD than same-age peers (Ozonoff et al., 2011)
• Additionally, the presence of another intellectual disability or higher levels of social anxiety may also increase the likelihood of parents seeking help and obtaining a referral for ASD assessment

Disparities in diagnosis can also be the result of:

• Lack of awareness of symptoms among parents and caregivers (especially among minority population) (Christinsen et al, 2016; Durkin et al., 2010; Schelly et al., 2019). Yet, it may be insufficient to simply provide information, as families often turn towards “influencers” who may not have sufficient experience and do not necessarily advise to seek medical help (Schelly et al., 2019)
• Differences in practices
• Varying presentation of symptoms (e.g., hand waving not present in younger children) (Charman et al., 2002; Cox et al., 1999; Guinchat et al., 2012; Stone et al., 1999)
• A higher percentage of white children are identified with ASD in comparison to black or Hispanic children; however, this difference is slowly diminishing potentially due to increasing awareness efforts and communities being able to better identify ASD in minority groups. Yet, more effort is needed.
• As research shows, children coming from higher socioeconomic groups or from families with higher educational levels tend to obtain referrals sooner and similarly have greater access to mental health services.
• According to the CDC (2018), most children diagnosed with ASD had concerns about developmental delays noted by age of 3. Yet, less than half received a comprehensive developmental evaluation by this age.
• ASD Diagnosis in Adulthood: While efforts are made to diagnose ASD early on, individuals may end getting the diagnosis well into their adulthood (Courchesne, Campbell, & Solso, 2011). Diagnosing ASD in adults is more complicated, as ASD may overlap with other mental health disorders, like anxiety or ADHD. However, if present, diagnosis is important as it can help explain challenges and past difficulties that individuals have experienced, can provide increased access to relevant information and social support groups, as well as access to disability benefits and available community resources, employment supports, housing options, etc.

Goal 4: Access to ASD Health, Mental, Education, and Social Services For Individuals with ASD.

• Build awareness about and importance of health, mental health, educational, and social services on the local and state levels
• Develop capabilities to provide integrated care across lifespan that are coordinated across providers/services across and are centered on individual preferences, needs, values and variability of health, mental health, educational, behavioral, and functional profiles.
• Promote efforts of advocacy and self-advocacy through awareness building, access to training, support and resources.

Background Research: Individuals with ASD have an increased susceptibility to physical, mental, and social health issues (Croen, Zerbo, Qian, et al, 2015; Fortuna, Robinson, Smith, et al., 2016; Tyler, Schramm, Karafa, et al., 2011). Thus,

• Approximately 10% have co-occuring physical disabilities (Rydzewska, Hughes-McCormack, Gillberg, et al, 2019)
• More than 20-30% of individuals have chronic illnesses or disease (e.g., obesity, hyperlipidemia, hypertension; Tyler, Scharamm, Karafa, Tang, & Jain, 2011)
• Rates of comorbid psychiatric or neurodevelopmental disorders range from 3 to 9 times that of the general population (e.g., bipolar disorder, depression, anxiety disorder; King, 2019)
• Frequently co-occurring medical problems (e.g., pulmonary/respiratory problems, hearing and visual problems, dysphagia/reflux disease, epilepsy, spasticity) (Croen, Zerbo, Qian, et al, 2015)
• Atypical immune responses with high rates of autoimmune disorder (Hughes, Ko, Rose & Ashwood, 2018)

Behavioral concerns, like aggression, destruction of property, disruptive and self-injurious behaviors create obstacles to accessing the needed services and higher levels of health disparity than their neurotypical peers ( (Ali, Scior, Ratti, et al., 2013; Hwang, Srasuebkul, Foley, et al., 2019; Kats, Payne, Parlier, et al, 2013). Yet, the obstacles to care stem from other issues as well, including:

• Lack of knowledge of autism (Nicolaidis et al, 2015; Nicolaidis et al, 2013; Rogers et al, 2020 )
• Lack of information and resources that would be helpful to individuals and families (Frye et al, 2016; Weiss et al, 2013)
• Incorrect assumptions that lead to stigma (Nicolaidis et al., 2015)
• Unclear communication, and provider unwillingness to communicate in writing (Nicolaidis et al, 2013; Nicolaidis et al, 2015; Nicolaidis et al, 2014; Tint et al, 2020).
• Accessibility of services (Nicolaidist et al, 2014)
• Coordination of care (Griffith et al, 2011)
• Environmental factors (e.g., setup of waiting areas, need to call in, stress from uncertainty as to how much time it may take, physical closeness to people, sensory overstimulation) (Nicolaidis et al, 2014)

Additionally, the wide variety of services available and the lack of information and support on what to focus, as well as financial limitations may also lead to the lack of access or even obstacle to such an access to services (Sharpe and Baker, 2007). Intervention programming is often set on the state level (CDC 2015), thus types of services available may be dependent on state policies, as well as the lack of alignment between policies and clinical care (Doehring & Volkmar, 2016). Within the massively overburdened health care, community, education, and social systems, efforts and activities that have served to help families and individuals advocate for care, access or provide continued services, distribute essential resources, or navigate the everchanging circumstances, are especially important.

Goal 5: Successful Youth Transition to Adult Services, Work, and Independence.

• Assess and build readiness for successful transition and improved mobility among transition services and agencies through improved understanding of:
  • ASD in adulthood and
  • core areas of transition planning.
• Support local, regional, and state efforts in promoting awareness about:
  • transition to adulthood
  • needed community efforts
  • needed supports for successful integration of young adults with ASD into the community.
• Promote efforts of self-advocacy through awareness building, access to training and resources, and other opportunities.

Background Research: Often described as a “transition cliff” (Glover, 2012), families and individuals have a tremendous adjustment as school-based services end and they adult services are accessed. The definition “transition age” varies but is typically viewed to range from mid-adolescence (ages 14-16) through young adulthood (ages 24-26). It covers most of high school, postsecondary education or training, employment, and moving towards independent living (Dept of Health and Human Services, 2017).

Transition planning and processes are required to begin within the year at which students enter 9th grade or turn 14 whichever occurs first in Indiana (Article 7). Appropriate transition planning should involve considerations related to healthcare transition, guardianship and supported decision making, education and training, employment, independent living, community participation and much more.

Each year, over 50,000 people with ASD transition into adulthood (Shattuck et al., 2012). Research shows that a majority experience poor outcome across multiple domains, such as employment, education, healthcare, social engagement, and independent living.

In consideration of prominent literature in the field, the following may be summarized about individuals with ASD at the time of transition (Chiang et al., 2012; Chiang et al., 2013; Taylor & Seltzer, 2010; Volkmar, 2017; Wei et al., 2015):

• Lack of financial resources
• Low rate of parent expectations and involvement
• Increases in challenging behavior as structure and supports decrease
• Lack of access to support services
• Limited or less than ideal options for living arrangements
• Lack of long-term care plans
• Lack of interagency collaboration between high schools and adult service providers
• Research focused primarily on white, middle-class, well-resourced families of males with ASD with average/above average IQ
• Adult issues make up only 2% of all autism research spending in 2015

In turn, their risk for poor individual outcomes increases in later life (Buescher et al, 2014; Roux et al, 2015).

The current landscape for transition-aged individuals with ASD is bleak, but improvements are possible.

Nationally:

• 20% achieve independence (e.g., college/university or competitive employment) (Taylor & Seltzer, 2011)
• 56% currently require full-time care/adult day (Taylor & Seltzer, 2011)
• 42% employment gap for individuals with disabilities in Indiana (2017 Unified State Plan, VR)

In Indiana:

• <50% engage in community events (HANDS in Autism®, 2019)
• <80% have limited or no transition planning. Of those receiving transition planning services, only 4.5% find it adequate (HANDS in Autism®, 2019)

Goal 6: Adequate Equitable Access to Resources, Funding, Inclusive Community, and Basic Living Conditions to Meet Quality of Life Outcomes.

• Recognize the need for equitable access to resources, funds and living conditions.
• Assess current barriers and needs in order to access adequate equitable resources, funding, and basic living conditions to meet quality of life outcomes.
• Promote efforts of self-advocacy through awareness building, access to training and resources, and other opportunities.

Background Research: Over the next decade, more than 500,000 teenagers will transition to adulthood (CDC, 2018). Yet, there is a lack of resources and supports that will allow individuals with ASD not only to gain employment, but also to access independent or group housing, funding to support daily needs, or other basic living conditions based on the level of independence (Taylor and Selzer 2011). Indeed, “the availability of support services is often one, if not the major factor in what happens to high-functioning young autistic adults” ( Lord & Venter, 1992, p.). Yet, such accessibility is highly dependent on geographic location of the individual, as well as the path taken by the individual. For example, many universities offer supports to their students on the spectrum, including transition services, career exploration, and networking. Yet, adults not enrolled in college. However, research findings show that only 20% pf adults achieve independence (e.g., college/university or competitive employment) (Taylor & Seltzer, 2011), while 56% currently require full-time care/adult day (Taylor & Seltzer, 2011). A 20-year study of 187 individuals conducted by Skinner et al. (2020) showed that most adults with ASD in the study did not live independently, hold a job, or manage money, which was not necessarily caused by their inability to do so. For example, 99% unable to live independently. Of those, 70% lived at home with relatives, 21% lived in disability homes in the community, and 8% in residential facilities.

Another important aspect that is being brought up in recent research and social media is the need to fit in (Hull et al., 2017). To support a true community inclusion, it is paramount for individuals with ASD to participate and being accepted as a member of the community. Such acceptance may be shown through additional supports and services (e.g., accessibility), addressing sensory needs, access to physical activities, etc. Yet, based on the results of the Indiana Needs Assessment, less than 50% engage in community events (HANDS in Autism®, 2019).

Goal 7: Justice System & Public Safety.

• Provide access to evidence-based and best practice tools, resources, and training to improve:
  • field-based awareness and recognition of ASD
  • use of tools to support identification, interaction and reporting among justice and public safety personnel and settings.
• Support efforts aimed at building empathy and remove implicit bias in order to provide individuals with ASD with equitable and unbiased treatment.
• Promote efforts of self-advocacy through awareness building, access to training and resources, and other opportunities.

Background Research: Autism spectrum disorder (ASD) is not easily recognized by police, fire, security, emergency medical and other first responders. Therefore, the behaviors witnessed from those with ASD during emergency situations may be misunderstood, mishandled and generally worsened. However, individuals with ASD experience natural challenges with misunderstanding events, stress caused by lights and sounds, behaviors of others, and broken routines, as well as problem-solving at the time of crisis. These natural tendencies may draw further suspicion and perception of aggression from first responders about these individuals (Woodbury-Smith & Dein, 2014).

Of added concern, courts often do not accept expert testimony about ASD (King & Murphy, 2014), increasing the chance of misunderstanding and incarceration of those with ASD.

• Individuals with ASD are 7 times more likely to intersect with the criminal justice system, either as victims or offenders (Berryessa, 2014).
• 19.5% of youth with ASD have been stopped and questioned by police by the time they reached their early 20s. Of them, nearly 5% were subsequently arrested (Rava, Shattuck, Rast, & Roux, 2017).
• Yet, the prevalence of actual unlawful behavior of individuals with ASD is relatively low (Woodbury-Smith & Dein, 2014).
• Socio-emotional challenges present in ASD do not allow individuals to have an intent to purposefully harm another person (Berryessa, 2014; Freckelton, 2013; Woodbury-Smith & Dein, 2014).
• Presence of co-morbid psychiatric disorders can be a strong underlying reason for offensive behaviors.
• 20% of children with autism have been physically or sexually abused. However, justice personnel are not sufficiently ready to interact and advocate for these victims (Mandell et al., 2005)

ASD is not easily recognized by police and other officials, therefore their behaviors may seem alike to those of offenders. Such challenges include:

• Misunderstand social cues
• Misunderstand verbal and non-verbal communication
• Fail to deal well with disruptions in routines
• Engage in behaviors viewed as antisocial
• Lack of empathy and repeated behaviors may appear to be intentional
• Poor problem-solving ability may appear to represent a lack of moral values or reasoning
• High IQ may prevent consideration of the legal insanity plea
• Socio-emotional challenges limit likelihood of intent to purposefully harm others
• Presence of co-morbid psychiatric disorders may be an underlying reason for offensive behaviors (Woodbury-Smith & Dein, 2014).

In turn, courts often do not accept expert testimony about ASD (King & Murphy, 2014).

Goal 8: Culturally Responsive Implementation.

• Explore disaggregated national, state, and local data and research to explore cultural differences in ASD diagnoses and services.
• Ensure proportional representation in state and local groups and activities to identify barriers and build awareness about the impact of implicit biases and lack of understanding of differences and commonalities on screening, treatment, education, housing, funding, and other access to equitable resources; as well as how to address them on a local, regional, and state levels.
• Promote efforts of self-advocacy through awareness building, access to training and resources, and other opportunities.

Background Research: Cultural responsivity may be defined as the understanding and appropriate response to the unique combination of cultural, linguistic and individual diversity that the professional and client, patient, or family bring to interactions (ASHA, 2017). In education, cultural responsiveness refers to a culture “that empowers students intellectually, socially, emotionally, and politically by using [terms that reflect] knowledge, skills, and attitudes” (Ladson-Billings, 1994, p. 382). Barriers and challenges in accessing adequate services by individuals with ASD are often compounded due to unfair practices resulting from race, ethnicity, and language minority status (i.e., groups that are historically marginalized or excluded from access to services, supports, etc.). For example, 20-30% of Latino and African American children receive an ASD diagnosis and intervention services (Autism Speaks, 2014; CDC 2018).

Nationally:

• ASD is among the broader category of “disabilities” affecting approximately 15% of the population thus comprising the nation’s largest minority group (CDC, 2018)
• ASD occurs in individuals of all races, ethnicities, social classes, and educational backgrounds (CDC, 2020 Nevison & Zahorodny, 2019).
• A higher percentage of white children are identified with ASD in comparison to black or Hispanic children; however, this difference is slowly diminishing potentially due to increasing awareness efforts and communities being able to better identify ASD in minority groups. Yet, more effort is needed.
• As research shows, children coming from higher socioeconomic groups or from families with higher educational levels tend to obtain referrals sooner and similarly have greater access to mental health services.
• Individuals of color are less likely to receive an early diagnosis than white children (Tek & Landa, 2013)
• Minority individuals with ASD experience higher bias from medical professionals in terms of diagnosis and referral (Aklin & Turner, 2006)
• Minority individuals with ASD are less likely to access quality care (Durkin et al., 2017)

In Indiana:

Accessibility of services that offer diagnosis services in Indiana vary based on the geographic location, which does not align with the need (HANDS in Autism®, 2019). For example:

On average, families have to travel

• 61.8 miles cross counties (of them, 13% travel 100+ miles)
• 52.4 miles within the same county (of them, 17% travel 100+ miles)

These discrepancies are rooted in the following:

• Diversity of cultural values and beliefs about physical and mental illness, healing and help seeking
• Physical limitations or disabilities, like autism spectrum disorder (ASD)
• Differences in language use
• Socioeconomic status and conditions
• Racism, prejudice, and social injustice
• Lack of information about available services
• Immigration status
• Access/ Location of service delivery
• History of previous abuse or trauma
• Lack of data and research
• Segregation and its link to vulnerability
• Lack of diversity in health care providers
• Lack of culturally competent services
• Lack of physicians in rural areas
• Lacking education

For more details about action items for each goal and samples of product, view/download the full Comprehensive Plan below.

To cite this document: Indiana Interagency Autism Coordinating Committee (IIACC). (2021). Indiana
comprehensive state plan for individuals with autism spectrum disorder (ASD). Retrieved from https://indiananetwork.org/about/what-is-indiana-comprehensive-plan/&nbsp;