Where have all the Day Programs in California gone?

Once upon a time there were wonderful places called Day Programs in California. These programs provided social opportunities, vocational training, emotional support and entertainment for thousands of Californians with disabilities. Everyone found a place to belong, no matter the disability or impairment.

Those days are long gone… or maybe they never existed. Maybe great day programs have always been mythical, like unicorns and Starbucks drinks that won’t make you fat. But what I’ve heard from people who work in programs and the State agencies that support them is that there once were a lot of really good opportunities for people with disabilities in California.

Used to be… that’s the key phrase. Thanks to budget cuts and astronomical rents, day programs have had to shut-down. One after another has collapsed under the growing cost of rent, the need to pay a living wage and the yearly decrease of funding from the State. Most programs are supported by the Regional Center, a State agency that vendors with local people to provide programs and activities. The Regional Center can only pay what the State allows, but the State doesn’t provide much more than minimum wage, a rate that is impossible to live on. Programs rely on grants and other private supports to get by. Those funding streams have also disappeared, which is weird because it’s not like there isn’t a ton of money in California. Programs also need a space to provide the services, but rents have pushed “site based programs” into “community based programs”, which are not always the best option for people with disabilities. Even the community based programs are financially challenged because they then have to provide transportation and staff to support their clients. They can only pay a little more than minimum wage, which no one can live on, so staff turnover is high. Eventually those community based programs are forced to shut down, too.

Every year the State budget cuts program funding for people with disabilities and more people are forced to stay home, which strains the families who care for them. How are they supposed to pay their own rent when they miss work providing care to a loved one with a disability?

There once was a State Hospital Program which cared for thousands of people with Developmental Disabilities. And yes, I know the Hospital system was awful and people were mistreated and hidden away from the larger society. Happily, most of those State Hospitals have shut down and people with disabilities returned to their families or placed into smaller group homes. But here’s my question: where did all that money go when the State shut down the State Hospital System? And if day programs and care homes are being forced to close, where exactly are those people who were once in State Hospitals going?

My daughter isn’t the only person being impacted by the broken Regional Center system. I see good people in that system every day fighting for their clients, only having to tell those same clients there’s nothing they can do. Clients, family members, caregivers, and social workers are all struggling with the lack of funding to support day programs and group homes. The State of California needs to provide proper funding again. I heard they used, but that was a long time ago in a land far, far away…

Maybe that’s where unicorns went as well.

Who Knew Starting Pre-School Would Be Easier Than Starting a Day Program?

When Rhia was 3 and began pre-school, she happily took her teacher’s hand and waved to me. “Bye Mama!” She then turned away and tottered off to her new class. I was stunned. Where were the tears? The clinging, wailing, begging me not to go? Everyone had prepared me to be strong and walk away from my crying child. Instead, I was the one crying as I waved. “Bye-bye Baby.”

Fast forward 21 years. We are standing in the library, meeting the aids and participants of her new day program. For 8 months I have been fighting to get her into a program and at last we are here! I’m excited for her to meeting new people and begin her new life in our new city. Rhia on the other hand…

“I don’t want to be here!” Her cry echoes off the library shelves. Everyone in the once quiet building stares at us.

“But sweetie, this is where you’ll make new friends.”

“No!”

“We talked about this. You’re starting a new program so you’re not stuck in the house all day.”

“I like being home.”

“I know, but you can’t stay home anymore. I have to work…”

“Then I’ll go to work with you.”

“You can’t come every day…”

“Why? I like it there.”

“Rhia, it’s okay to come to my work sometimes, but not all the time.”

“Well I’m not gonna come here.” She hunches her shoulders and looks down, essentially blocking out any further discussion. Arguing with a deaf-girl can be annoying.

I wait… and wait… and wait… then I bend down until she can see me and sign, “Please give it a try.”

Rhia looks up at me and bursts into tear. “But no one knows my language! I can’t understand anybody!”

That is the whole problem in a nutshell, and is why it’s taken 8 months to find any program at all. No one knows American Sign Language. Rhia uses her voice to speak, but needs ASL to understand what people say to her. She is deaf, but there are no programs that provide interpreters. This new program is willing to learn ASL as fast as possible and provide whatever support they can to help Rhia understand, everything from pictures to icons to visual schedules. They are going beyond their limits to create something for her, while recognizing that communication won’t be a quick fix. I bought a new iPad with a communication program all set up for her to use. And I’ve come with her to train staff and provide emotional support to help Rhia with this transition.

But I go back to work next week. It’s time for Rhia to start her program. There’s nothing more I can do. I can only imaging how terrifying it must be to spend your day with strangers who don’t know your language and you can’t understand what is happening. When I leave her at her program on my first day back to work, I suspect we’ll both be crying.

I’ll keep looking for a better fit. In the mean time, this is the best we can do, and I feel guilty as hell.