Seeking Services & Benefits for Autistic Children & Teens

Caregivers sometimes struggle to identify what is needed to support their Autistic child or their family. Below is a list of questions to help narrow down the possible services required and what may be necessary to access them.

Step 1: Identify the need.

What is the goal? What is the problem to be solved?
What has helped in the past? What are you hoping to avoid in the future?
What is your Autistic child’s or teen’s vision for themselves, or, if unknown, what is the vision for the Autistic child’s life in a year’s time?

Step 2: Survey the current support landscape.

What services or supports is your Autistic child and/or your family already accessing?
Is the Autistic child approaching a key transition period, such as turning 18?
How much assistance will your Autistic child or family require to apply for and navigate services?
What are the potential barriers to accessing services (time, transportation, translation, interpretation, finances, etc.)?

Step 3: Prepare necessary documentation.

When was your Autistic child’s most recent evaluation from a medical professional and/or the public school system?
Did the evaluator make recommendations about which services the child needs?
Does documentation need to be located, compiled, or copied for filling out applications (proof of residency or insurance, for example)?

If the direction is still unclear, the LifeCourse Tools may be useful for establishing the vision for an Autistic child and/or your family, the resources and relationships you currently have around you, and where other help may be required.

Once there is a firmer sense of what is needed, below are some leads on how to find the “right” service or support in your state, as well as assistance with untangling various systems.

State-Based Services

OlmsteadRights maintains information on disability resources by state. These include organizations and agencies focused on developmental disability services, mental health services, employment, disability advocacy, Medicaid, and other community resources like housing.

State offices or departments of Developmental Disability Services offer eligibility-based supports for Autistic people. Eligibility criteria will vary by state and by age and the extent of services or funding provided will depend on individual needs. Some examples of services include case management, direct programming or community support, flexible funding or stipends, and family support. These agencies also often oversee Medicaid waiver programs, which also vary by state. Waivers are designed to provide support in the home and/or the community for Disabled people who qualify.

Education

Each state has one or more Parent Training and Information Centers (PTIs) to assist caregivers of school-aged children, teens, and young adults with accessing services through the public schools. They provide technical assistance, training, resource referrals, and more. PTIs also offer state-specific information regarding special education rights and post-secondary transition planning services for students 14-16+.

Sometimes people want to consult with an educational advocate or a special education attorney when trying to understand or assert their child’s educational rights. Caregivers may be able to find advocates or attorneys to interview through the COPAA (Council of Parent Attorneys and Advocates) professional directory. COPAA has published guidelines to use when hiring an advocate or an attorney. AANE is available to assist people through parent coaching or an IEP review.

Early Intervention services are available in each state for babies and toddlers with developmental delays or identified disabilities. AANE has information available about Early Intervention for Autistic children.

Healthcare Coverage

Healthcare.gov has general information about Medicaid and the Children’s Health Insurance Program (CHIP). You can use their site to look up your state’s Medicaid office. Some states have Medicaid ombudsman programs for 1:1 assistance and benefits counseling.

Social Security

The federal Social Security Administration has published information about determining whether an Autistic child may be eligible for Supplemental Security Income (SSI) or an Autistic adult may be eligible for Social Security Disability Insurance (SSDI). Details about Medicare/Medicaid and Children’s Health Insurance Program (CHIP) are also included. The National Disability Institute maintains a Q&A on Social Security Benefits to address common questions.

Employment

State Vocational Rehabilitation Agencies assist people with disabilities in preparing for, finding, and maintaining employment. Pre-Employment Transition Services (Pre-ETS) are available for students with disabilities (mostly documented through IEPs or 504s) from transition age (14-16+) through young adulthood. Caregivers can often find Pre-ETS information on a state’s vocational rehabilitation department or agency site or by searching online for Pre-ETS + your state.

Service Navigation Support

Local chapters of The Arc can help people with system and service navigation, resources, and advocacy. They also often provide direct, community-based services.

Autism Society affiliates may have family support, local provider directories, or guidance regarding service system navigation.

Parent to Parent USA offers 1:1 peer parent matches for people raising children with disabilities. While peer parents may not provide direct assistance, their lived experience and mentorship can often help families not feel alone in the process and may help them to identify new avenues for support.

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Tips & Suggestions

Know timelines. Ask agency personnel or providers what a reasonable timeframe is for a response to your application or inquiry. Verify the name and contact information of the person you should check in with after that time period has elapsed.

Documentation is critical. Make sure to note what materials should accompany any applications or intake forms. Evaluation reports, medical or psychiatric assessments, financial information, proof of residency, legal documents, educational records, and historical information may be required.

Be proactive about consents for release of records. If agencies or providers are going to need to communicate with one another, contact all parties to request their release of information forms. Share completed forms with all those relevant. Note: if you are assisting an Autistic young adult 18+ with applications, you may need a signed HIPAA or FERPA (educational privacy law) waiver from them to do so.

Follow up in writing. As a general advocacy best practice, document phone calls, meetings, and other conversations in writing. Following a phone call, you can write an email thanking someone for their time with a summary of your understanding of the conversation and next steps, for instance.

Keep track of actions you’ve taken and when. Application processes and the wait time until eligibility is established can feel interminable. Some caregivers find keeping a log of action steps they’ve taken useful for those days when nothing seems to be happening. A diary of phone calls, emails, meetings, appointments, research, etc., can help keep information straight, particularly when pursuing multiple applications at once. This kind of running record also allows you to keep track of when follow-up may be required.

Seek clarification and support. Service systems are notoriously hard to untangle. Access is often knotted up in jargon, complex processes, deadlines, and other barriers. Ask questions and don’t be afraid to go higher in the chain to get answers. AANE and other organizations are available to assist you.

If you have options, take care when selecting providers. Finding a provider who works well with your Autistic child or your family can take a lot of trial and error. Search for references and referrals from other families or local resource centers. Interview clinicians to see if they have a solid understanding of Autism and a neuro-affirming approach. Establish your non-negotiables in a clinician or practice, your “nice to haves,” and your deal-breakers. For instance, you may be willing to deal with delays in scheduling with a highly regarded practitioner or if there are limited options in your area. Ultimately, if a provider isn’t working out, trust your gut. People don’t regret changing providers. They regret waiting too long to do so.