Tag: Regional Center

Posted on in caregiving, day program, deaf, disabilities, life

Creating a Day Program From Scratch

It has been 6 months since I last wrote in this blog. During that time I’ve worked hard hunting for a program that fits Rhia’s needs. A program that includes activities, friends, art, excursions into the community and people who speak American Sign Language. She was placed on the waiting lists of two different programs that had everything except ASL and she tried out one, but it was a disaster. Then we found an incredible program in San Francisco for people who are Deaf and Developmentally Delayed. However, there was no transportation to get her there. We fought hard and finally the Regional Center agreed to provide it.

At last, she could go to ToolWorks!

Not so fast… Just like every program in California, ToolWorks is short staffed and struggling to meet the needs of the people already in their program. As soon as they had staff, Rhia could go!

We waited four months.

Finally, I’d had enough; we decided to hire people and create our own program. I put out an add for caregivers and quickly heard back from several interested people. Out of 10 applicants I interviewed 4. Actually I interviewed 2 because one no-showed and another cancelled. I hired one brilliant woman who met all the qualifications, including basic Sign Language, but she texted me an hour before her shift started, saying she wasn’t coming. After a good cry I ran the add again and thankfully hired a dependable, kind woman who actually shows up and takes great care of Rhia. Unfortunately she doesn’t know sign language.

Fine. We can work with this. With dependable staff Rhia can start finding things to do in the community. She loves the library, so they can go there. She also loves coming to my work, so I pay her to clean toys on Friday afternoons. She also likes being helpful, so she and her caregiver do the grocery shopping on Mondays. They also clean the kitchen every day. It’s a start, but far from what I dreamed for her, and I suspect far from all she’d like to do.

Rhia wants to be a teacher and work with young children. She loves creativity and making art. She enjoys going out to lunch and window shopping with friends. And she loves talking to people. Unfortunately, no one can really have a good chat with her except me.

Rhia doesn’t have close friends; she has caregivers.

She isn’t alone; so many disabled young adults are isolated from their peers, which is why a staffed Day Program can be great. How wonderful to spend the day with other people just like you, young adults who need help in the bathroom and use a wheelchair, have trouble communicating and can’t even feed themselves without help. Outside of a staffed program it’s just you and your caregiver.

The caregiver has worked a month, so they are still getting to know each other. They go on short outings and run errands for Mom. Rhia is slowly warming up to the caregiver as the caregiver learns to communicate with her. This gives me hope that in time they’ll be able to do more together and Rhia will make connections with others in her community. We’ll all figure out what activities are available and what she will enjoy. It just takes time.

Time… It’s been over a year and Rhia and I are still trying to find a way for her to have a life filled with fun and friends.

I’m so sorry, Rhia. I thought moving to San Mateo would make life easier for you.

Posted on in day program, disabilities, life, opinion, special needs

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.