You never know when your life will change. Before my son was born with Down syndrome, I worked in phone sales and my husband had a successful career. We were comfortably able to provide for our family.
Fast forward two decades.
My son is 22-years-old now, and I work as his full-time caregiver through IHSS. I have no regrets, because like any parent, doing whatever it takes to keep our son happy, healthy, and safe is my first priority.
But life is complicated. Now, my husband Emad is no longer able to work because of severe back injuries that cause constant pain and limit his mobility. Our lives have changed, and we now rely on my income as our son’s provider to make ends meet.
Despite needing constant care and supervision, my son was initially granted just 74 hours per month.
My husband and I were distraught. We didn’t know much about IHSS, and we didn’t know what to do. We didn’t know there was a way to address the inaccurate assessment. Last November, I learned about UDW when a fellow IHSS provider came to my door. She told me about my rights as a provider and my son’s rights as a home care recipient. She also told me the UDW Advocacy Council could help me appeal his assessment.
I was excited! When I met with the UDW Advocacy Council here in Orange County, they were eager to help me every step of the way. They helped me get a letter from my son’s doctor stating his need for constant supervision, and helped me prepare our appeal. They even called our social worker’s supervisor directly to advocate on our behalf.
Not long after I sent in the appeal, I received a phone call notifying me that my son’s hours were going to be increased from 74 to 269 a month. In addition to the increase in hours, I was also paid nearly $10,000 in retroactive pay!
The back pay and the increase in IHSS hours has allowed me to focus on what’s most important – my son. I spend fewer sleepless nights trying to figure out how to get a second job while also providing my son with the constant, quality care he needs and deserves. My husband and I have been able to pay off bills and pay back loved ones that helped us by loaning us money.
And of course, I’m happy and proud to be a UDW member. I feel more secure now that I am in a union. I know that if my family has a problem with IHSS, we are not alone. And that’s a nice feeling.
Khadija Ahmed is a UDW member and IHSS provider in Orange County.
