Dear Governor Brown,
Here I am again, with my second installment of Valerie’s Week in Review. Thank you so much for reading it.
I understand that it must be so easy, when you’re busy with numbers and language and politics, to lose sight of what life is like here on the ground. For my daughter Valerie and the other Californians living with developmental disabilities, years of underfunding to DDS have an impact every day.
I know you’ve been made aware of the enormous challenges facing Regional Centers and Service Providers. I know that you know how severe this crisis is right now, and how unsustainable the system is moving forward. Please restore 10% to California’s Developmental Service System now, and an additional 5% every year until the system is fixed.
VALERIE’S WEEK IN REVIEW
APRIL 10, 2015
Valerie was sick this week and had to stay home from her Day Program for a couple of days. It turned out to be allergies but since Valerie has compromised lung capacity to begin with, something very small can cause a very big problem. I gave her nebulizer treatments every 4 hours and monitored her oxygen levels around the clock. These are tasks which would require nursing if Val were not living with me. At times like this, and for parts of every day, I am doing LVN work at IHSS pay levels, thus saving California approximately $33 an hour. She’s back to herself now, thank goodness, and back to her daily routine.
Valerie’s cough was worrisome not only for medical reasons, but because her Day Program has a limit on how many days a client can miss. This program, the only one in San Francisco that meets her needs, can only serve 14 clients. Valerie was on a waiting list for 4 years before there was an opening for her, and if she goes over her limit she’ll be out of the program and back on the waiting list.
This program, and the larger program it’s part of, are struggling. Staff retention is very difficult, with California service rates among the lowest in the country. This is challenging work for low wages. The direct service staff stay out of love, and they are true heroes. Most them have to work two, and sometimes three, jobs in order to pay the rent.
Fortunately, my own allergies remained mild until later in the week, but eventually they hit. As I struggled in my weakened state to dress and prepare Valerie for her day, lift her into her wheelchair, and push her chair down to the van, I couldn’t help but look right in the face of my advancing age. I have been working so hard to build supports for Valerie on into her future, but there is not enough to build on, and what’s here is crumbling.