If you’ve been asking yourself these questions, this post is for you:

1. What happens when my child no longer has access to autism services?

2. What happens when funding and services for autism are no longer available?

3. Reduced services & funding for autism – now what?

When the funding dries up and services are no longer available, people with autism and their families are left with few options. In the best cases, families can see these changes coming in advance, such as when children age out of services and families can take steps to prepare. But even in the best cases, it is stressful and overwhelming.

Sometimes, changes may come with little to no warning (like this case in Florida and this case in Ontario). When this happens, it can be downright scary.

A long road in a desert.

So, what can you do?

1. Find a community of people who understand what you are going through.

Meet in small groups or big ones, online or face to face. The autism community is famously tight-knit and gives plenty of opportunities to connect, find support, ask for help, give advice, share concerns, and learn about available options: 

2. Inform yourself about the available options for services and supports.

Ask your community for help, or go to your local advocacy group if you have any questions:

The number and type of supports available depend a lot on where you live. It also depends on the age of the person accessing services, the amount of funding available from payers, and the proximity of research institutions, like Child Bright or KBHN.

Because of the variety of available options, one of the best things you can do is learn how to identify a high-quality service or program. Here are some tips:

There are also online resources available for training & education.

3. Go to your local advocacy organization to see if there are creative funding options like grants or scholarships, research studies, and local programs available at low cost

By signing up to be a part of research studies for treatment through your local university or hospital, you can access treatment options for no cost (sometimes they pay you to take part!). All research studies through these channels have to be cleared by a Clinical Research Ethics Board. 

4. Empower yourself by learning how to navigate the system.

Knowing where to find funding, where to access services, where to find respite, housing, and educational opportunities can be a daunting task. You can start with these 2 resources. You can also ask your community & your local autism support organizations (see 1 & 2 above)

The more information you have at your disposal about the person you support, the better equipped you will be to advocate, answer questions, and make good care decisions. Under HIPAA & PHIPA regulations, you are entitled to have access to your complete record of care. Ask your past providers and caregivers to share the records of care, reports, data, and communication notes that were collected during the time you were accessing services.

Bonus tip – Awake Labs has created a free tool to help securely store & share a complete record of care. If you want to download the app for free, click here. For more information, contact the Awake Labs team at hello@awakelabs.com

A promotional image for the app Reveal Stories. Image is of two phone screens and text that reads: "Set Goals, Track Progress, Improve Outcomes"

5. Don’t give up!

Look to your community for support. There are many people who will want to help you if you need it.

Bonus resources: