Dear Governor Brown,
I am the mother of a 29 year old young woman with Rett Syndrome, a severe neuromuscular disorder. I know how challenging it will be for you in the weeks ahead to make hard decisions about California’s budget.
I urge you to restore funding to the developmental service system. We need at minimum a 10 percent increase now, given the previous cuts and discounts that have devastated this system. We parents are begging for your help.
As a way to help you understand our situation better, I’ve decided to start writing to you on a regular basis. My plan is to send you Valerie’s Week in Review every Friday.
Valerie is non-verbal and non-ambulatory. She has spastic quadriplegia and uses a g-tube. She needs total care. She is also smart, funny, opinionated, beautiful, and a valued member of her community. Valerie lives with me and I am her primary IHSS provider. The services she receives through the Regional Center and In Home Supportive Services (IHSS) make it possible for my daughter to remain living in her community and in the least restrictive setting.
Even though I’m asking for more money for services for Valerie and others with developmental disabilities, I want to make it clear how very grateful we are for the system of supports that allows Val to live her life. However, as grateful as I am, I am enormously concerned about her long-term safety and well-being. I am in my 60’s and I will not be able to take care of her forever. I’m doing everything I can think of to ensure Valerie’s future, but I am very afraid.
Thank you so much for listening to our story.
VALERIE’S WEEK IN REVIEW
Friday, April 3, 2015
This week we said goodbye to the van company that had been taking Valerie to and from her day program for the last 3 years. This old family-run company was no longer able to stay in business. As a Regional Center provider, they suffered from years of discounts and were unable to retain drivers at the low rates they could pay. It should go without saying that, as this company struggled with inadequate staffing, these struggles were passed on to their clients and for the past several months late pick-ups and drop-offs had become the norm.
On Wednesday, the first day with the new van company, Valerie didn’t get picked up at all even though we were in the proper spot at the proper time. It later turned out that crucial details about our location had not been conveyed to the new company and the driver was waiting in the wrong place. Even so, she would not come back to pick Val up and, as frequently happens, I had to rearrange my day.
Later in the week I found out that my daughter’s case manager at Golden Gate Regional Center is being promoted and we’ll be assigned someone else, most likely, I am told, a new hire. While I’m very happy for him, this worries me. Valerie’s needs are complex and we have worked with this wonderful person for years. I can’t blame him, though – Regional Center employees have not received even a COLA raise since 1990. This has made it difficult to keep experienced staff, and caseloads are seriously out of compliance with Federal guidelines, putting California at risk for losing crucial Federal funds.
Valerie’s secondary IHSS worker is away for a family emergency and I’m currently looking for a new respite care provider (not so easy to find at discounted pay rates) so Valerie and I will be on our own this weekend. We plan to have a fun weekend, and we wish you the same.