California home care clients need their full hours back

More than 4,000 home care providers and their clients rallied at the state Capitol last June, and they’re lobbying the Legislature again this year.
More than 4,000 home care providers and their clients rallied at the state Capitol last June, and they’re lobbying the Legislature again this year. Sacramento Bee file

Four years ago, I was given just one year to live. I remember it like it was yesterday; it’s not easy to forget what it feels like to be told you are going to die.

I’m still here, and a big reason why is that my friend Mark agreed to be my in-home caregiver. I don’t know what would have happened if not for his dedication and the hours of quality, expert care I received.

People like me – clients in the In-Home Supportive Services program – took a big hit in 2013, when the state drastically cut hours it would pay for. The cut was supposed to be temporary during the budget crisis. Now California’s elderly and children and adults with disabilities need our hours back.

The Brown administration has agreed to reinstate IHSS hours permanently only if a complex tax on managed health plans can be hammered out. It’s a good start, but not enough. The state has a multibillion-dollar surplus. Our hours should be restored for good, no matter what.

My story begins in 1995. I was eight months pregnant, and living a normal, happy life when I suffered an aneurysm. I had to have emergency surgery to stop the bleeding in my brain. I woke up bald and had to learn to walk again, but thankfully I was able to give birth to my daughter Rachelle just a few short weeks later.

Fast forward 16 years. I had a good life, was active in my community and worked at a local deli in El Dorado County. After experiencing some pain, my doctor told me I had to have some gallstones removed. It was all pretty routine, until my doctor discovered that I was in stage 4 liver failure. That’s when he told me I had one year to live.

It turns out I had contracted hepatitis C at the hospital where I had my aneurysm removed, and had been living with it undetected for nearly two decades.

Immediately my best friend Mark stepped up. I enrolled in IHSS and was given 182 hours of care per month. He left his job to be my full-time home care provider, and got me through my darkest days. Mark did everything: He monitored my blood pressure and temperature; gave me my insulin injections; dressed, bathed and fed me; helped me walk; assessed my mental clarity; and transported me to and from doctors’ appointments.

But our hours of care were cut 7 percent. It is incredibly hard for me and my caregiver to figure out what should come first, when all the care I receive is vital.

I was lucky enough to receive a liver transplant and today I am negative for hepatitis C. While I am doing much better and I’m able to move on my own, I still need Mark’s help.

All IHSS clients need this program. It allows the elderly and people with disabilities to live in their homes, and saves the state money by keeping us out of costly institutions. If we continue to invest in IHSS, it will be there when you or a loved one need it most.

Chantal Morris of Garden Valley is a client in the state’s In-Home Supportive Services program.