Why I'm supporting the Lanterman Coalition, My open letter to the Senate Budget Committee

Attn: Senator Ellen Corbett (Chair), Senator Bill Monning and Senator Mimi Walters,

I’m writing as a parent of a child with a developmental disability to urge you to adopt the budget recommendations of the Lanterman Coalition. The consensus of these 17 diverse organizations is clear in demonstrating that California’s budget decisions have undermined the state’s responsibility to provide sufficient support and services to people with developmental disabilities. Not only have these budget changes eroded the Lanterman Act, they’ve compromised the safety, health and future opportunities for vulnerable Californians and diminished the quality of living for the families represented by these each of these individuals and budget allocations.

As a parent of a child with autism, and as a Regional Center consumer, I can personally attest to the importance of these budget issues. I implore you to please restore funding to the Early Start Program and to encourage families to keep private health insurance coverage by funding insurance co-pays and deductibles for therapies like Applied Behavioral Analysis (ABA).

- Restore Early Start Program funding that was cut in 2009 -

When my daughter was 14 months old, I told her pediatrician I was concerned she couldn’t hear me when I called her name. By 18 months, I reported that I was no longer hearing the few words she had previously uttered. While my daughter’s skills were regressing she was also facing new health challenges. As parents we spent all of our time working to feed her, help her sleep, and keep liquids down, while simultaneously appealing our insurance company for services like speech therapy. With all of the providers we had reached out to for help, no one had ever mentioned available services through Alta Regional or the Early Start Program. We didn’t receive information or a referral until my daughter had already turned three and had nearly stopped talking and eating altogether.

I believe my daughter could have made more progress and received more support if there was more education and outreach on Early Start services. Because children like mine can have regression and show symptoms of serious disabilities at different times, it makes sense to provide early intervention without the new requirements for to have more significant delays across a large number of domains in order to be eligible for services. Many parents I’ve talked to are being told to wait until their child falls behind even further because they have deficits that are just under the current threshold. By cutting these services, and the statewide outreach to make these services accessible, children like my daughter are missing out on a critical window for early intervention. It doesn’t make sense fiscally to compromise services that will have long-term benefit for a child’s outcome and level of functioning and independence.

- Support Regional Center Funding for Insurance Co-Pays and Deductibles -

The budget trailer bill language that has prohibited regional center funding for insurance co-pays and deductibles has been devastating for families like mine. Instead of prioritizing treatment, families like mine are forced to weigh the long-term benefits and risks of keeping our kids covered by our private insurance or by dropping insurance covered in order to afford ABA therapy. California has saved an estimated $200 million per year with the mandated coverage from SB 946, however, the costs of paying for co-pays and deductibles are very small when compared to the entire cost of an ABA program, nearly 20% of regional center families have reported dropping their children from their private insurance plans because of the hardship posed by deductible and co-pays. The state should be encouraging families to retain and utilize private health insurance as a source of support for a child with disabilities. Penalizing Regional Center consumers who carry insurance is not a fiscally responsible policy. 

It’s difficult to express just how important ABA therapy has been for my child and our family. It has been an enormous investment in our time and we’ve changed employment, relocated, and altered nearly every aspect of our lives in order to provide her with the services and support needed. ABA therapy has tapped my daughter’s potential and brought joy back into our household. Our child is now able to communicate with us, play safely with her younger sister, and she’s developing self-help skills. I believe that the upfront costs required to promote and provide effective therapy will pay dividends in the long run. 

I am counting on your support to make these budget recommendations a reality for the individuals and families, like mine. 
Thank you,

Kirsten Yeates
Parent of a child with autism

Senate Budget and Fiscal Review Committee, Subcommittee No. 3 on Health and Human Service

Part A Hearing Agenda on Health including Developmental Services

For My Grandpa

As grandpa's 4th grandchild, I've only been alive for a smaller, and perhaps, more insignificant part of his life. I never got to experience grandpa's life in Costa Rica, Mountain View or even hear the lectures of his brother Walter that were so inspiring and formative for my parents' generation. I only shared a limited part of my grandpa's life. My 31 years are less than half of the 65 years my grandparents have been happily married. My memories of grandpa revolve around the silly things of grandkids; running rampant with cousins, bathing in their giant round bathtub, swinging our little cousins in blankets, going to zoos, water parks, and most notably, just enjoying the attention of our adoring grandma and grandpa. 
Being just 1 of 8 grandkids, I never felt far removed from the center of my grandparents' universe. A soft place to land and proud of any of our accomplishments, my grandpa and grandma are our loyal fans. Traveling up cumbersome roads to visit us in eureka (a 14 hr car trip back then) didn't keep my grandma and grandpa from participating in any minor milestones in my life: our 8th grade graduations, high school, college, holidays, weddings and special family celebrations - my grandpa was there, "with bells on"! Always proud to bask in the atmosphere of our tight-knit family and his high-energy and often awkward grandkids.
Not just a loving grandpa, MY grandpa is a unique person and shares many of the quirks I adore in my father. Always the scholar - with the largest vocabulary of any person I've encountered- Grandpa effortlessly uses words like "confiscatory" when a simple "unfair" may have sufficed.
One of my very favourite memories with grandpa was playing the board game Balderdash. Instead of just up silly, fake meanings to these obscure vocabulary words, Grandpa would ruin the game by almost always knowing the words and could regale us with the Latin or Greek roots for the words. My Grandpa's wide array of interests, knowledge and curiosity have inspired me to learn more in my life, expand my horizons and to network and learn from a wide array of people I encounter.
What really personified my grandpa was his graciousness. He was full of gratitude for any simple and heartfelt gestures. For instance, this last Father's Day,  I sent grandpa a simple photo postcard. It may have even arrived a few days late and featured a photo of me with my girls and simply said "We love you Great-Grandpa". The next day I talked to Grandpa on the phone and he exuded about the gesture, the photo, the sentiment and the joy it brought him. He told me "I wasn't able to sleep early this morning, but I was thrilled to remember your card again, sitting by my bed, when I woke up. I got up and went to the other room just to admire the photo of my gorgeous girls".
The admiration and joy my grandpa has for children is self-evident in the photos I've seen of him with all of his grandkids. In the photos I've combed through of Grandpa, he can be found looking adoringly at his great-granddaughters, fully immersed in their activity, their emotions and amazed at the gift of their existence and joy. I don't think I will ever be able to edit photos of my daughters without thinking about which photos I HAVE to share with great-grandpa. The girls have been blessed to have his love, affection and pride, that they've earned simply by being a part of great-grandpa's life.

The three great-granddaughters are intent on the strawberry-rhubarb pie and candles as we sang to Grandpa on his 89th birthday last April. 

Even though I'm broken-hearted, I am proud of my close-knit family, of my loving and accomplished aunts, uncles and cousins. I feel that my Grandpa's love and lifetime commitment to Grandma and to our families has been a foundation for our successes and life's happiness. I hope to honor Grandpa's legacy of valuing education, hard work and to continue his ever-present gratitude and enjoyment of all the small and large blessings I life.
I love and miss you Grandpa and hope we meet again soon. Love, Kirsti

The girls goofing off on a Friday morning. Ali's teething and Riley is still in her phase of wanting to wear "princess" dresses exclusively!

What a difference a year makes

 So last year, on this day, we rushed Riley to her GI specialist in the bay area because she had stopped eating and drinking and was becoming seriously dehydrated. She wasn't able to eat much solid food and wasn't talking (at all) yet...A year later, I'm thrilled to report that she's doing so well! She no longer chokes on food, she can talk up a storm and she's thriving at school. I'm so grateful for the her speech and feeding therapists, inspiring teachers and to our friends and family for helping her blossom. She's such a bright and delightful child and I feel so blessed by both the struggles and successes!