New Diagnosis - Now What?

Considerations Following a Diagnosis

Immediately after receiving a diagnosis of Autism Spectrum Disorder or another developmental disability, there are a few areas of focus that can serve as good places to start. Below is a short list of considerations; you can also connect with our Family Support Team at any time for resources, information, guidance, or a listening ear.

Explore financial assistance options for your child's care.

It is a daunting task to learn about existing interventions and treatments for ASD and other developmental disabilities, begin to understand how to navigate systems to coordinate your child's care, and cope with the emotional reality of receiving a diagnosis all at once. Gaining clarity around your options for financial assistance can remove one variable from an already-complex equation.

Steps you can take:

• Contact your health insurance provider to find out what services are covered by your health insurance policy.
• Explore government Medical Assistance (Medicaid) services. In Rhode Island, the state agency responsible for administering the Medicaid Program is the Rhode Island Department of Human Services.
• Explore whether your child may be eligible for Katie Beckett. In Rhode Island, certain children under age 19 who have long-term disabilities or complex medical needs can become eligible for RI Medical Assistance coverage through the Department of Human Services Katie Beckett eligibility category. Katie Beckett eligibility enables children to be cared for at home instead of in an institution and covers services like participation in peer social groups.

For details about RI Medical Assistance and the Katie Beckett waiver, visit the Department of Human Services’ website.

Find a few reliable, quality sources of information you can turn to continually.

Rhode Island has a few resources specifically for families of children with special healthcare needs, including The Autism Project. It can provide peace of mind to have these resources handy, bookmarked, and/or on speed dial.

• Download the RI Resource Guide for Families of Children with ASD, published by the Rhode Island Department of Health.
• Visit the Rhode Island Medical Home Portal, which includes contact information for area providers and interventions entered by our Family Support Team.
• Schedule a phone call or face-to-face meeting with a Family Support Specialist.

Consider connecting with other parents, families, and caregivers of children with ASD or other developmental disabilities.

Fostering community is central to our mission at The Autism Project, and many of us know from experience that there is a certain kind of support that can only be found in someone who has also navigated the journey of diagnosis. We offer several options for parents, families, and caregivers to connect with others and, hopefully, find a sense of support and community.

• Join our private online parent/caregiver support group via Facebook.
• If you are a grandparent, consider coming to one of our in-person support groups. Check our events page for the next support group date.
• Register for Parent to Parent, a five-week training and coaching series for parents and caregivers of newly diagnosed children.
• Start planning to attend or assemble a team for our annual Imagine Walk & Family Fun Day (always held on the last Sunday in April).
• Reach out to our Family Support Team! All of our Family Support Specialists are parents of children on the autism spectrum.