How much does it cost to raise a child with autism?
A new study in the medical journal JAMA Pediatrics has estimated the total lifetime cost of supporting someone with ASD to be 1.4 million in the United States. If there is also intellectual disability it's estimated to double to a whooping $2.4 million this calculations would be the best of care and services available.
let's take a real look at the expenses
Of course these calculations would be based off receiving some of the best care and it's for a lifetime which probably includes a care facility of full care and these can be hugely expensive. So don't let the number scare you just yet .
We actually downsized our home when Shay was little because we was feeling the burden already . Along side early intervention we also was doing extra therapy . We are actually a one income family of five and don't qualify for most assistance.
Here is a list of expenses from medical to everything
Insurance premium (payed monthly sometimes yearly)
Insurance deductible ( must reach every year for coverage)
Copay (regular)
Copay (specialist)
Copay (hospital)
Copay (urgent care)
Copay (medicines)
supplements / plant based medicines ( full price not covered )
special diets (not covered depending on diet some are pricey)
Special medical equipment such as strollers, safety beds , safety harnesses (sometimes insurance will assist with these sometimes not)
Indoor/outdoor safety measures this can range from baby gates , locks , doors, cabinet locks, fencing , video surveillance etc ( This list is endless and will always need upgraded when your child figures it out)
Endless amounts of development toys, activities, and electronic devices ( also will always be upgraded )
So I think you are getting the idea . And trust me this is just the tip of the burden. I'm working on this after one cup of coffee at 5 am. I love our 5 am's Shay is so happy in the morning and it took us a long time to get to sleeping until 5.
Let's Talk Helpful Resources
Get a medical waiver this is different by state a good starting point is your local department of human services. Some states have stand alone portals just for autism waivers . How cool is that . My state doesn't but some do. To access these google autism waiver (state).
Safety First
One of the biggest risks for a child on the autism spectrum is elopement . Here are some great resources for this.
National Autism Association & The Big Red Safety Box
National Autism Association is an organization focused on safety from elopement. They provide resources for at home . For schools and information to first responders. They also provide AAC device assistance . They are partnered with vivant home security for discounts to families raising a child at risk of elopement.
Modest Needs
Is an organization for families that can't get most services because they live just above the poverty level but find themselves struggling to get by. They provide
Self-Sufficiency Grant to assist with bills that have gotten behind.
Autism Spectrum Disorder Foundation
ASDF is an organization that has a holiday program for Christmas they usually start applications in October for this. In the summer they help with swim lesson , equine therapy , or social camp grants summer applications are accepted in May. They also have an Ipad program for kids .
United Healthcare Children Foundation
Is a organization that can help with medical for children. This is for children that have commercial insurance and parents are struggling to get much needed therapies because of not being able to afford it.
C.A.R.E
Is another organization to assist with therapies . They provide grants for aba,
speech, and ot . They also will assist with supplements. For families struggling with medical expenses.
Autism Care Today
Is doing a grocery assistance for 2021 you can apply to receive a 100 dollar gift card from select retailers. They also provide an emergency assistance program for needed therapies so they aren't interrupted because of lost insurance or financial struggle. They also have Military family support section for those who serve our country. Also a great informational blog.
First Hands
I saved the best for last this one will cover just about anything that you may need that insurance won't cover.
Car modifications, home modifications need a fence they got you. Need a special bed they can do it. They also will let you request up to 3 times.
(some exclusions apply.)
I hope this links to resources can be helpful for anything you may need. Stressing over financial burden is just that stressful . Raising autism or other special needs shouldn't always be a challenge . It's a huge relief that organizations understand that. Some of these were started by people who was caught in that medium of making enough money but not enough to handle medical. You shouldn't have to choose between having therapies or food for your family.
If the resources here aren't exactly what you was looking for and your in need don't hesitate to contact me. I will do my best to find a resources to help you.
Thank you for reading .