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.

Just because you have MediCal doesn’t mean you can have a doctor

We were told it would take 4 weeks to transfer Rhia’s MediCal from one county to the new one. It took 4 months. A government shut-down slowed the transfer down even more. Plus, there was a huge backlog at the State level from so many people applying for MediCal through the Affordable Care Act. So, four months later, Rhia’s MediCal was approved and we were ready to find a doctor.

Just because you have MediCal doesn’t mean you can have a doctor.

Every clinic I called said they were no longer accepting MediCal patients; they had all reached their quota by February.

Great!

I asked the first two clinics if they were accepting new patients and they said yes. We started the intake process but as soon as I got to the insurance part, the answer was, “Oh… we’re not accepting new MediCal patients.” After that, I started the conversation asking if they were taking MEDI CAL patients. Two more clinics said no.

Finally, the fifth clinic said they were accepting MediCal. And, miracle of miracles they had an appointment open in only 2 weeks! I grabbed it, wrote it down, hung up the phone and burst into tears.

Everything was on hold waiting for a doctor. We needed a doctor to sign the forms so she could start her day-program, but that couldn’t happen until MediCal cleared. While we were waiting I was out hunting for a day program with an opening, so now she’s on two waiting lists. Thankfully one program had an opening in December and they were kind enough to hold the spot for her.

Since December! (Thank you, thank you, thank you…)

Access. The doctors are excellent here, but not everyone has access. How many more openings are there for MediCal patients? Did the clinic that accepted my daughter eventually say no to the people who called afterwards? How many people with disabilities are hunting for a doctor right now?