Meeting Notes

1. The Office of Client Rights Advocacy (OCRA) is a unit of Disability Rights California (DRC).  OCRA provides free legal services to regional center clients and people with questions about regional center eligibility.  DRC provides free legal services to Californians with all types of disabilities.
2. Regional Centers are nonprofit corporations with contracts with the State. Their focus is on people with developmental disabilities and their families by development Individualized Program Plans (IPP) and help to provide, secure or purchase services. 
3. The 4 steps to Regional Center eligibility are developmental disability, substantial disability, onset before the age of 18 and expected to continue indefinitely. Disabilities that are solely physical, psychiatric or learning are excluded.
4. Intake meeting is 15 days after filing of application and in 120 days a decision is reached. Be sure to appeal within 30 days of receiving a notice of action if denied. Do not delay.
5. Once eligibility is determined and application processed and approved, there is life long entitlement to services. 
6. Every Regional Center client has a Service Coordinator who helps you access the services you need and follow through to ensure that you receive it.
7. Covered services should be listed in the IPP and Notice of Action issued for denied services.
8. To help ease the application process, provide copies of helpful records. Do not rely on signing release of information. 

 
Office of Clients’ Rights Advocacy 619 239 7877

A heartfelt thank you to all mothers of rare and undiagnosed children. You are courageous, strong, resourceful and resilient. Your immense love and persistence in advocating for the well-being for your children transcends through this community, you pave the way, share your wisdom and inspire hope for other families on the long journey to diagnosis and treatment.

There is no doubt that all mothers sacrifice and stay strong for their children amidst the most difficult situations. As mothers of the rare and undiagnosed, a multitude of challenges push strength and self- sacrifice to the verge of becoming superhuman. Faced with perplexing circumstances while under the constant squeeze of stress and perpetual lack of rest. Faith is challenged, finances drained and worry is heavy on your heart. You do not give up despite what you are told. You keep going, no matter what the day may bring. Your child’s quality of life is such a high priority that you have forgotten your own.

You are courageous to forge ahead despite what limits in lifespan and abilities you have been told your child has. To choose between a high risk procedure or surgery that could lessen quality of life maybe even end an already medically fragile life or to live life out to the fullest comfortably and with dignity.

You have strength you didn’t know you had both physically and emotionally.  To keep it all together and carry your child through it all. Runs to the ER, stays in the ICU, invasive procedures and tests. And when the time comes and the reality of death is imminent, you know that you would trade places with them in a heartbeat. But instead, you are faced with the heart-wrenching task of letting them go on before you.

In pursuit of answers and possibilities you become resourceful. Scouring the internet, reading pages upon pages of research to stay abreast of new technology and developments in science and medicine. Reaching out to connect with specialists, scientists and other parents, learning from them just as they also learn from you.

You show resilience as you dance delicately on the fine line between protecting the health of your frail little one and allowing them freedom to experience the joys of childhood. You carry your burdens with grace every single day yet somehow, someway despite the unimaginable pain, and countless challenges you also find incredible joy too.

On this Mother’s Day, Keep moving forward, give hope to one another, you have superhuman abilities and know that you are appreciated not only being an advocate for your children but leading the way for other families like yours too.

In Good Health and Always Hope.
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Caroline Cheung-Yiu
Founder and Patient Advocate
San Diego Undiagnosed Family Support Group