Autism Resources; Supplemental Income Parents Need
If you're the parent of an autistic child these are autism resources you should get familiar with. I'm talking about SSI and IHSS.
SSI is Supplemental Security Income. IHSS is In-Home Supportive Services.
Both of these programs are available in every state. SSI goes by the same name regardless of your state, but IHSS is different. Each state has considerable administrative discretion over how IHSS is provided and regulated. In fact, states don't even have to call it IHSS, which is the name of California's program. If you're not in California you'll need to do a little research to find out what this program is called in your state. It may be called Personal Assistance Services, Home and Community-Based Services, In-Home Supportive Services, Home and Community Based Services,
Home and Community Waivers,
Community Comprehensive Services or something else entirely. Do some digging and you'll find it. Your local Parent Center can probably point you in the right direction. You want to know about this program. It's one of the nicer autism resources to have.
If your family income is too high you won't qualify for these programs. And the less your child is affected by autism, the less your chances of qualifying. What that means is that if you have a posh $100,000 per year job and your child has a type of high-functioning Asperger's Syndrome these autism resources probably aren't what you're looking for. But quite honestly I'd do some digging and ask some questions about eligibility just to make sure.
My family is using both SSI and IHSS. My son qualifies for Supplemental Security Income due to his disability. And my wife is able to get paid through the California Department of Social Services since she takes care of our son through the In-Home Supportive Services program. She is their employee. Essentially, my wife gets paid to stay home and take care of our son.
Getting signed up with these programs is a hassle, and staying signed up can be a hassle too. But once you get the knack and figure out what they expect it's well worth it.
Supplemental Security Income
Supplemental Security Income is one of the nicest autism resources to receive. It's more than just an autism resource, but since this website is all about autism we'll classify it in the autism resources category anyhow! However you think about it, it's a big help when you're raising a child with ASD. But it isn't without it's hassles.
The Social Security Office where we live seems to have been designed after a prison visitor's waiting room. I can't stand going in there. They even have a uniformed guard sitting in the back of the room. I feel like a criminal every time I go in there.
Getting signed up for SSI is different from IHSS. Nobody comes out to your house from the Social Security office. But there's lots of waiting involved and it can be frustrating. However, once you get signed up it's SO nice to receive the extra funds.
Once you're signed up you have to mail in, or physically take in, proof of all income to the Social Security Office. For us that means sending in my pay stubs like clockwork every month. UPDATE: As of summer 2010 we now call 1-866-772-0953 to report our income over the phone! This phone system doesn't work for everybody, but it works nicely for us.
The big hassle with SSI is when they want to reevaluate your eligibility and when they send you the "Whoopsie, we accidentally paid you too much!" letters. Yes, they screw up and pay too much because their system is so archaic. And you won't realize when they screw up because the amounts of money vary based on your income. Then you have to contact them and jump through their hoops only to find out that although it was their fault, and you did everything they've told you to do, it's your fault. Yep, try to figure that one out! It's irritating, but there's no way around it. Everyone I know who receives SSI has had to deal with this situation.
I highly recommend that if you have an autistic child sign up for both SSI and IHSS if you can. Follow the links below to get started. It's not a yellow brick road, so don't expect it to be easy. But hey, raising a child with autism never is easy, huh? If you're like us you want to take advantage of all autism resources you can get your hands on!
Feel free to email me if you have questions. I'm always happy to help other parents. That's the point of this website! But before you email and ask questions, make sure you follow the links below for help!
Details about IHSS (Printer-friendly 1.3mb pdf)
In-Home Supportive Services
If you plan on signing up for IHSS make sure your child is getting SSI before you apply for IHSS. If you do that then IHSS will not use your income to determine your eligibility. At least that's how it is in California, so I'm guessing it's similar in other states.
I remember when we found out about In-Home Supportive Services. At first I couldn't believe there were other autism resources out there. Then we applied and someone from the office came out to our house and talked with us. We had to answer questions about our son Braden, our living situation, and other personal things while the worker filled out a form.
Then we had to wait a while before the letter of rejection arrived. They rejected us basically because both me and my wife were working at the time. IHSS did not take into account the fact that we were struggling. I worked during the day and when I got home in the evening my wife took off to her job at night. We rarely got to spend time together. When she was at home she was taking care of our son. When I was home I was taking care of our son. And as you know, taking care of a child with autism takes a lot more work than a typical child. We needed more autism resources!
Before long my wife quit her job. We just couldn't keep doing that anymore. It was really hard on our family. Then we reapplied for IHSS. Without my wife's income we had to really buckle down for the next few months. It wasn't easy. Another IHSS worker came out to our house. She realized that Braden was a child who needed constant supervision and he was a safety risk. We got approved!
After we were approved we had to decide who was going to become our IHSS worker. In California we had the option to choose a close relative. Not all states give you that choice. But since my wife was staying at home we chose for her to become our worker. She could take care of our son better than anyone and she was in our home already, so why have someone from the outside come in? My wife is chief among autism resources!
Now my wife has to fill out timecards every two weeks and deliver them to the local IHSS office. As long as she fills out the timecards properly and gets them in their hands everything flows fine.