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.

People with Disabilities vs. Caregivers. No one wins.

On August 21, 2015 a Federal Appeals Court reversed a Lower Court ruling regarding overtime pay for Home Health Care Workers. In the ruling, the court ended the exemption  of home care workers from overtime pay. The long term caregivers union is rejoicing. Advocates for people with disabilities are angry. The fight isn’t over.

People with disabilities are concerned that they will lose caregiver hours because agencies will stop paying the full hours people need to stay in their homes. Private pay employers won’t be able to afford their workers. Caregivers are angry because they are paid low wages but must work more than 8 hours a day. Caregivers are fighting for a livable wage and people with disabilities are fighting to live.

When people with disabilities are pitted against the people who care for them, who wins?

This battle reflects a deeper problem. People with disabilities are not considered viable members of society and therefor have no value.  The people who care for them are primarily people of color and women, groups traditionally considered low status. The system of caring for people with disabilities is structured around “cost savings.” As long as it is shown that keeping people in their homes saves society money, then doing so is considered important. But what cost do you place on respect and dignity?

Caregivers work as nurses, housekeepers, drivers, secretaries and cooks. They often bathe, dress, and help toilet severely disabled people and are paid minimum wage. Despite the long hours, most caregivers are dedicated to their clients and feel that they are making a difference in the world.

People with disabilities rely on their caregivers to not only support their physical needs, but to also help them engage with the world and enjoy their lives. The threat that they may lose their supports if a pay increase is mandated is real. State budgets are strapped and agencies run with minimal staff. Where will the money come from? And for those who have  to pay out of pocket for caregivers, will the changes force them to go into an institution simply because their insurance will pay for it?

I am my daughter’s caregiver. I also rely on other caregivers to help me keep my daughter in our home. I gladly work far more hours than I am paid, and I know other caregivers who do the same. Many of these workers are not family members, but they know if they didn’t donate hours their clients would suffer.

It’s time for caregivers and people with disabilities to stop fighting each other. People need to stay in their homes and workers need a livable wage. Rather than suing each other, it is time for both groups to unite and demand increased funding for programs that support the disabled. We need to examine our society and ask why we are so willing to throw people away simply because they can’t care for themselves.