I could fill a book with the number of things I did not know about having an autistic adult. From the time my daughter turned 18 life has been a crash course in post-high education, independent living and finances. Despite what everyone says about preparing yourself, 90% of life after 18 is fumbling around in the darkness hoping you’re doing things right. The other 10% is getting letters in the mail from official places like the Office of Social Security telling you how you did things wrong.
Rather than write a book because I’ll never finish it, I’m going to break down one of the most confusing areas of autism in adulthood: finances.
Here are all of the things we have learned while stumbling through this getting older process:
Disability benefits
We are nearly ten years into this process and I think I’m finally grasping this part. There are two types of Social Security benefits and your child is most likely getting the one that doesn’t sound like the one they would be getting. So simple right? It took me a long time before I finally pushed the right prompts on those long calls to the Social Security office.
SSI is Social Security Income for kids like ours who are unable to earn an income to support themselves on a daily basis. They receive up to around $800 per month depending on where they live, how much they work, if they pay rent, etc. Qualifying for SSI generally immediately qualifies a person for Medicaid as well.
SSDI is for people who have a disability that prevents them from working and are now being paid money because they cannot work due to their disability. This is an earned benefit, you get what you pay into based on your work history. For example, an auto worker gets hurt on the job and is not able to work any longer, he then receives SSDI to supplement his finances based on the income he was receiving prior to the injury.
Make sense? I hope so because it did not make sense to me for a long time.
When applying to SSI, my biggest advice to you is: Leave your pride at the door. Think about long into the future and what your child needs to live their best life.
As parents we tend to downplay the amount of assistance our kids need and what the world to see the best version of our life. Is your child living with you and should they, at their age, be paying you rent? If the answer is yes, tell them that in your interview. What do they NEED if they were without access to your finances tomorrow? This is what you need to ask for and keep in mind while applying for and/or renewing your child’s benefits.
Earning money
People love to tell you an autistic adult can earn all the money they want. There’s no limit! Get a job, do a work study, head to vocational training…! BUT as soon as you begin making money you must report it to Social Security if you are receiving a monthly SSI check or intend to apply. They will begin reducing SSI benefits the minute you begin making money which can be very difficult for someone who is already on a fixed income or living on a tight budget.
It’s very important to weigh out the benefits of the amount of money you or your loved one is able to make vs. what they receive in SSI and what is most needed. SSI also places limits on what you can have in your bank account and how your money can be spent. Keep all the Everything! They will ask for it at some point.
There is also the Medicaid factor, most autistic adults who need staff or any type of home help are able to receive this service because it is paid for by Medicaid. If you begin receiving health benefits at a job you may no longer qualify for staff at home.
Saving money
This is an extremely frustrating part of helping my daughter through adulthood. There are many limitations on what she can earn and save when receiving any type of benefits. As soon as she got a job we had to be very mindful of her finances and how much money was in her account at any point in time. Remember the stimulus money a few years back? She could not save it, Social Security wanted to know how it was spent within six months.
I will not use this post to rant over how the system is set up for people who are struggling to continue that cycle for ever and ever. In the interest of my blood pressure, I’ll stick to what DOES help.
MiABLE has been a sanity-saver. We were fortunate to discover MiABLE accounts when looking for a way to allow my daughter to save money in a way that does not affect any other benefits she is receiving. She can take out money when needed for specific expenses and it allows us a bit of financial freedom when it comes to helping her with finances.
The MiABLE website explains it best:
Individuals with disabilities and their families depend on a wide variety of public benefits for income, health care, food and housing assistance. Many of these benefits require meeting a means or resource test that limits the eligibility of individuals who report more than $2,000 in cash savings, retirement funds and other items of significant value.
For the first time, the legislation that enabled creation of MiABLE accounts recognizes the extra and significant costs of living with a disability. MiABLE accounts provide eligible individuals the opportunity to save and fund a variety of qualified expenses without endangering eligibility for certain benefits that are critical to their health and well-being, such as Medicaid and Supplemental Security Income.
MiABLE website
Honestly one of the best parts for me is that we are able to get kind, helpful, easy to access customer service from the MiABLE team. If you have even the slightest interest in opening an account or if you have questions about how MiABLE can help you in the future check out the MiABLE website.
Moving on
There is more I can write and I’m sure I’ll think of it all as soon as I hit ‘publish’ on this post, but for now I will leave you with this: You are the best tool your child has to get their adulthood off to the right start.
It is so hard to think of them as someone other than that little kiddo we’ve been attending IEPs for since the day after their diagnosis but their life is changing no matter how much they (and you!) want to resist that change. Get ready to fight for them again but in a different way. It’s never easy but I have no doubt that the autism parents and autistic adults of today are going to change adult services for the better in the same way they turned around many a school system.
If you’re an autistic adult or parenting one, what would you add as financial advice?
This post is sponsored by MiABLE, all opinions and experiences are my own.
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Truly appreciate you! My daughter is almost 16 and we see this on the horizon. The push to work also exasperates us. My daughter is nonverbal, needs help with toileting and changing pads and even walking up and down stairs, yet she’s expected to work. While we want her to have some kind of stimulating activities each day, we don’t see work as a viable path. Appreciate all your insights at this crucial time.