ASD & Families

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Autism and Families

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.

Learn more about experiences of families of individuals with ASD and what they have found helpful.

Also, check out:

The Father’s Perspective: A Panel Discussion

From CDC’s 2016 Autism Awareness Month Event

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Sibling Support

As a sibling of an individual with ASD, remember:

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.

Organization for Autism Research: Sibling Support

Why Kids Who Learn and Think Differently Might Feel Lonely

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Coping Strategies and Dealing with Stress

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.

Also, check out:

Interactive Autism Network: Stress and the Autism Parent

Mancil, C., & Boyd, B. (2009). Parental stress and autism: Are there useful coping strategies? Education and Training in Developmental Disabilities, 44(4), 523-537

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Nominate for DISI

Do you want to recognize an outstanding organization that:

  • Engages the community and promotes innovative ideas in the field of autism spectrum disorder?
  • Embodies the IIACC’s mission to facilitate the sharing of information on autism-related activities?
  • Drives the implementation of services aligned with the goals in the Indiana Comprehensive State Plan?

Click here to Nominate

IIACC in Action

  • IIACC Zoom Backgrounds: Download for the Quarterly Meeting!

IIACC Zoom Backgrounds

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Originated in 2005, the Indiana Interagency Autism Coordinating Council (IIACC) began as a state-mandated entity implementing the Indiana 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.

Add your voice to the Indiana Needs Assessment

Ways to Engage

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:

Adulthood

Advocacy

Behavioral

Community Providers

Correction sErvices

Early Childhood

Education

Families

First Responders

Insurance

Medical

Mental Health

Oversight/Administration

Policy/Legislation

Regional

Self‐Advocacy

University

Vocational & Transition

Insurance & Trust Funds

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Typically, insurance of some sort is required to access or pay for services and treatment for ASD. It is helpful to understand the different insurance options that are available for individuals with ASD and their families, as well as information to consider when planning financially for individuals with special needs.

What Insurance is Available to Individuals with ASD?

In Indiana, there are two primary types of insurance that typically provide access to ASD-related services: private insurance (generally provided through an employer) and government supported insurance. Private insurance companies generally have their own regulations related to ASD-related service coverage, so families should contact their insurance agencies directly to determine which services are covered. The Arc of Indiana Insurance Advocacy Resource Center is a very helpful resource that can also assist families with determining what is covered by their current insurance.

Government supported insurance options include, but are not limited to:

Supplemental Security Income (SSI)

Supplemental Security Income, or SSI, is an initiative by the Social Security Administration offering monthly benefits to eligible applicants, including individuals with disabilities, and may also guarantee eligibility for Medicaid and SNAP (Supplemental Nutrition Assistance Program) assistance. SSI will provide limited funds for basic necessities, such as food, shelter, and medical care for families with assets lower than $2,000. Upon turning 18, an individual with ASD is considered an adult, and the asset requirement to maintain SSI rests solely on the individual and not on the family. For specific information about SSI, visit the United States Social Security Administration Supplemental Security Income website.

Medicaid

Medicaid is a federally-funded health insurance program for people with low income, including individuals with disabilities. In order to receive Medicaid benefits, individuals must apply and qualify for both disability and income guidelines through the Indiana Family and Social Services Administration (FSSA). To receive Medicaid coverage, family assets must be below $1,500. Visit the FSSA Medicaid Policy website for additional information about eligibility and to apply.

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What is a Medicaid Waiver?

Medicaid Waiver Programs in Indiana are extremely helpful means to obtain the most services possible without having to pay for those services out of pocket. To receive a Medicaid Waiver, an individual must first qualify for Medicaid and have no more than $1,500 in assets and an income no more than 300% of the amount paid by SSI. Additional eligibility requirements can be found by contacting the FSSA Division of Developmental Disabilities Services (DDRS). Indiana currently offers two Medicaid Waivers:

Family Supports Waiver (FSW)

The Family Supports Waiver provides Medicaid Home and Community-Based Services (HCBS) to individuals with developmental disabilities so that they may access services within a community setting rather than residential care facilities. The FSW provides annual funding of $17,300 (with $1,500 of that funding designated for paying for case manager support). Because the FSW is the first point of entry for waiver services, the FSW is issued on a first come-first served basis, and, as a result, there is a waitlist for services.

Community Integration and Habilitation Waiver (CIH)

The Community Integration and Habilitation Waiver also provides access to services and supports to individuals with disabilities, but the services are needs-based and require a more specific set of eligibility criteria compared to the FSW. the CIH Waiver does not have one set monetary allowance, and there is no current waitlist to receive CIH Waiver services.

For more information on waiver eligibility and applications, visit the DDRS website. The Arc of Indiana Insurance Advocacy Resource Center may also be able to assist with questions related to Medicaid Waivers in Indiana.

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What is SSI?

Supplemental Security Income, or SSI, is an initiative by the Social Security Administration offering monthly benefits to eligible applicants, including individuals with disabilities, and may also guarantee eligibility for Medicaid and SNAP (Supplemental Nutrition Assistance Program) assistance. SSI will provide limited funds for basic necessities, such as food, shelter, and medical care for families with assets lower than $2,000. Upon turning 18, an individual with ASD is considered an adult, and the asset requirement to maintain SSI rests solely on the individual and not on the family. For specific information about SSI, visit the United States Social Security Administration Supplemental Security Income website.

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What is a Special Needs Trust Fund?

A trust fund can hold money for the benefit of an individual with disabilities, allowing for the use of those funds to provide items and services to improve the individual’s quality of life without jeopardizing eligibility for public benefits such as Medicaid and SSI. While SSI and Medicaid funds are limited to supporting basic needs, a trust fund allows the beneficiary to pay for items or services beyond simple necessities. Families may set up trust funds through private agencies and financial planners or state-supported groups such as the Arc Master Trust.

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What Should I Consider when Planning for a Dependent with Special Needs?

Some government support programs, such as SSI and Medicaid (as outlined above), place limits on the assets that a family may possess to qualify or maintain that support. Any inheritance or future investments exceeding $2,000 may disqualify an individual from receiving most federal assistance, so it is important that families discuss such stipulations with a financial expert when planning for an individual’s future.

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What is the ABLE Act?

The Achieving a Better Life Experience Act of 2014, (ABLE ACT) allows families/caregivers of individuals with disabilities arrange a special saving account for disability-related costs.  Any savings incurred on an ABLE account is not taxed and funds are not generally considered for SSI or Medicaid.  This act was built upon the current law that makes saving for a child with disabilities difficult.  Individuals eligible for an ABLE account include a person who becomes difficult before age 26 and (1) has SSDI or SSI or (2) submits a disability certification under rules written by the IRS.

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Additional Resources

References

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