This section will help to understand individual rights. There are government support opportunities, future planning, and organizations to help families in the processes. Federal and state laws have also been put in place to ensure rights for individuals and families within the school and other systems.
What is Self-Advocacy?
Self-advocacy is a form of advocacy in which individuals are empowered and informed to represent themselves in a number of settings. Self-Advocates of Indiana is one notable group dedicated to encouraging and helping individuals with disabilities, including ASD, to make their voices heard.
What Legal Rights do Individuals with ASD and their Families Have?
Individuals with ASD and their families have a number of rights that are protected by federal and state legislation. For more information on these protections, visit the Federal Mandates & Guidelines and State Mandates & Guidelines pages.
Oftentimes, parents/caregivers of individuals with ASD keep focusing on the individual him/herself, and forget to evaluate their own level of stress and health. Without a chance to let out their emotions or finding a chance to relax and accept the diagnosis, family members may neglect their own needs.
There are several things that parents/caregivers need to consider:
Ask for help: Do not hesitate to look for any support available – from family members to support groups.
Find a person to talk to: Find a person who can listen to how you feel. Letting your feelings out can be a great source of strength.
Join a support group: Knowing that what you and your family and child go through can help better relate to your own experiences. Additionally, support groups can be a great source of information and resources at each stage of your child’s growth.
Spend time with other children individually: All children need to feel loved, therefore it is important to find time to spend time with other children as well.
Learn about ASD: The more comfortable you are about the disorder, the easier it is for you to share your knowledge and experience with others. Leanr how to talk about ASD to educate your families and community. This will ultimately make you and your family more at ease to engage in community events.
You are not alone! All siblings of individuals with ASD experience challenges. Join a support group for siblings to be able to share how you feel with those who are like you.
Be a proud brother or sister! Learn how to talk comfortably and openly about autism. If you are comfortable talking about it, your friends will be too. It is also normal to be occasionally upset about your brother or sister, so do not be afraid to have such feelings. However, if you feel that you are upset or angry for too long, talk to your parents and/or seek a professional with whom you would be comfortable sharing your feelings.
Find activities that you can do with your sibling: Try to find a game or other activity that both you and your sibling can enjoy. This will give you a chance to get to know each other better.
Spend time with your parents: You are a family, so it is OK to occasionally spend time alone with your parents to have time to share what you feel and how you feel.
Research shows that parents of individuals with ASD often experience higher stress levels than parents of children with other developmental disabilities or neurotypical children. Increased stress around the time of diagnosis is often connected to accepting the diagnosis and determining how to support their child. However, with age, parents/caregivers are often worried how they are going to take care of their child later at life or what happens to the child if they pass away.
Additionally, parents/caregivers of individuals with ASD are often less involved in recreational and sporting activities that contributes to their social isolation.
Originated in 2005, the Indiana Interagency Autism Coordinating Council (IIACC) began as a state-mandated entity implementing theIndiana Comprehensive State Plan for Autism Services. The IIACC serves as a means for improving shared dialogue, understanding, planning and goal-setting with regards to autism services in Indiana.
With oversight by the Family and Social Services Administration (FSSA), the Council has been facilitated by the HANDS in Autism® Interdisciplinary Training & Resource Center since 2014.
Mission
The primary mission of the Indiana Interagency Autism Coordinating Council (IIACC) is to facilitate engagement in efficient and effective dialogue, resource sharing, and collective implementation as it pertains to general awareness-building, lending content and community/field expertise and experience, and considering evidence-informed strategies valid across the range of needs and lifespan considerations for individuals with autism spectrum disorder (ASD). This mission is accomplished through a diverse composition of member agencies and stakeholders spanning individuals with ASD, families/caregivers, service providers and professionals, as well as other community representatives who engage with, support or have influence within the ASD field. The intent in facilitating a diverse array of stakeholders is the enhanced ability to collectively work towards shared measurement and goals, to leverage resources and experiences, and to address common issues and outcomes to fill identified gaps for individuals with ASD statewide.
Core Four Areas of Emphases: Facilitated implementation and shared measurement occurs across four core areas of emphases, including:
Networking: Collaboration and networking within and across member groups and community at large
Information sharing: Information and dissemination of evidence-based and best practices
Dissemination: Recognition and distribution of local, state, and national innovation efforts
Training: Training and development through member organizations and community partners
These core areas will serve to:
Assess for readiness and identify barriers and facilitators across diverse groups in order to support individuals with ASD across the lifespan
Recruit and cultivate relationships by building internal and interprofessional partnerships
Capture and share local knowledge
Collect resources and establish technical assistance to bridge identified gaps
Create collaborative efforts to foster learning
Inform local opinion leaders and legislators
Model and simulate change
Promote acceptance, fairness, equity, and adaptability across professional groups and community members
Continually assess current needs across different regions of the state to inform the Indiana Comprehensive State Plan for Individuals with ASD and efforts aimed at supporting and advancing the independence of individuals with ASD across the lifespan
Seek out expertise to inform and promote the work of the IIACC
IIACC Conduct Creed
IIACC member agencies and representatives will maintain the Conduct Creed of the IIACC:
Embrace respect, responsibility, fairness and honesty towards individuals with ASD, family members, peer professionals, and community members
Recognize the rights and dignities of each individual
Uphold the reputation and good standing of the IIACC
Act in general interest of individuals with ASD and those supporting or working with individuals with ASD in any capacity
Listen with an open mind to alternate points of view – even those that they may disagree with.
Respect the intellectual property rights and copyright laws when recommending, disseminating or otherwise engaging with resources and training
Act in a way that helps create a safe and harassment-free environment for members and attendees of IIACC-sponsored events or platforms to feel welcome, regardless of race, age, gender, sexual orientation, gender identity, gender expression, immigration status, disability, ethnicity, religion, culture, national origin, social/economic class, educational level, color, size, family status, political beliefs, veteran status, or other group identity
Provide professional critique of ideas and behaviors without focusing on an individual sharing the ideas
Fairly and accurately represent my professional experiences, credentials, qualifications, and abilities
Improve the public understanding of autism spectrum disorder, strengths and challenges of individuals with ASD across the lifespan to advance their independence and integration into the community
Support and advance efforts of self-advocacy among individuals with ASD
How Gaps Are Identified
In order to best understand gaps in resources, services, trainings and other needs, it is important to have a number of data sources and data types that are representative of and from the groups that are in need of these areas of support. We use a number of community, statewide, and national data sources spanning regularly released literature and research and an ongoing comprehensive, research informed autism needs assessment. Data from across surveys, interviews and focus groups informs the autism needs assessment and serves to collect and share stories, insights, experiences and barriers in the format that is best suited to each group. Groups such as medical providers, educational personnel, justice and public safety personnel, early intervention through to transition providers, non-medical community providers, families, caregivers, and individuals with ASD and related disabilities are included across all formats. Field and community-based insights are shared through consultation and collaboration among key stakeholder groups and input through the HANDS in Autism® Local Community Cadres.
IIACC member agencies or representatives can participate in a capacity and with a frequency that is reasonable for them and adequately contributes to the foundational IIACC mission, including but not limited to:
Quarterly meetings
Information and resource design and dissemination
Engagement in social media and other community-engaged dissemination avenues to inform and provide materials within and across communities
Participation within community advisory groups to share and learn more about local, regional, and state needs
Review and recommend materials and resources as part of the IIACC dissemination and awareness-building efforts
Recently Active IIACC Member Organizations
Facilitators of the IIACC will continuously work towards recruitment and engagement of diverse membership within and across a range of stakeholder groups to ensure collective, representative contributions are available to inform the areas reflected within the Indiana Comprehensive State Plan for Individuals with ASD. Below reflects the array of members invited and participating currently within the IIACC:
Click on the icons below to explore other sections:
Safety is a primary concern for all individuals, especially those with ASD who may sometimes face challenges avoiding dangerous situations. The information in this section outlines common safety concerns for individuals with ASD, tips for keeping individuals out of harm’s way, and strategies to proactively prepare for dealing with a crisis situation should it arise.
In this section, you can explore the following topics:
It is important to understand the state regulations that protect the rights of individuals with disabilities, including ASD, across settings. Below is information about Indiana-specific laws pertaining to individuals’ access to education, employment, and other essential aspects of their lives.
What State Laws are in Place to Ensure the Rights of Individuals with ASD in Indiana?
Indiana Special Education Rules, Article 7 (Article 7)
Section 11, Article 7 of the Indiana Administrative Code (which contains the State’s Special Education rules), commonly referred to simply as “Article 7,” is a state-level regulation protecting students in federally funded schools from discrimination on the basis of a disability. Article 7 outlines the implementation of federal IDEIA requirements at the state level and describes how special education and related services should be provided by Indiana’s local public educational agencies. Article 7 covers all Indiana students with disabilities. The most recent version, updated in 2014, is available at http://www.doe.in.gov/specialed/laws-rules-and-interpretation.
Indiana Health Insurance Mandate for Autism Spectrum Disorder
The Indiana Health Insurance Mandate for ASD (sometimes referred to as the “Autism Mandate”) is a state regulation passed in 2001 that requires insurance providers to provide coverage–or at least offer coverage as an option–for individuals with ASD. The law does not apply to self-insured companies, nor does it apply to companies headquartered in a state other than Indiana. Indiana was the first state to adopt such a mandate, and as of 2017, almost every state in the United States has enacted a similar mandate. For specific information on mandate coverage requirements, review the Indiana Resource Center for Autism’s (IRCA) mandate synopsis or contact the Arc of Indiana Insurance Advocacy Resource Center.
What Rights do I have as a Parent or Caregiver in the State of Indiana?
As a parent or caregiver of an individual with a disability, including ASD, in the state of Indiana. you are granted a number of rights by federal and state-level legislation. The Indiana Department of Education has published a list of its protections, referred to as procedural safeguards, as they relate to the educational setting.
Generally, parents and caregivers have the right to determine what educational and medical services an individual with ASD should receive based on the individual’s unique strengths, behaviors, needs, and challenges. Several organizations in Indiana, including Indiana Disability Rights and the Indiana Governor’s Council for People with Disabilities
