CURE Support Group
  • Home
  • Meetings
  • About
  • Resources
    • Organizations
    • Fact Sheets
    • Resource Lists
  • Contact
  • Facebook

Meetings

Megan Chambers Lazet, Clients’ Right Advocate Attorney, Disability Rights California (Meeting May 20, 2017)

5/20/2017

0 Comments

 
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
0 Comments

Mothers’ Day - Thank you to all mothers of rare and undiagnosed children

5/14/2017

0 Comments

 
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.
​
Caroline Cheung-Yiu
Founder and Patient Advocate
San Diego Undiagnosed Family Support Group
0 Comments
    Picture

    Categories

    All
    Care For The Caregiver
    Emergency Preparedness
    Events
    Finance/Legal/Advocacy
    Funding Equipment
    Genetic Testing
    Meeting Notes
    Mother's Day
    Rare Diseases
    Research/Registries
    School/Education
    Therapies
    Uplifting

    Archives

    July 2025
    May 2025
    March 2025
    January 2025
    November 2024
    September 2024
    July 2024
    May 2024
    March 2024
    January 2024
    December 2023
    November 2023
    October 2023
    September 2023
    July 2023
    June 2023
    May 2023
    April 2023
    February 2023
    January 2023
    December 2022
    September 2022
    July 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    November 2021
    September 2021
    August 2021
    July 2021
    May 2021
    February 2021
    January 2021
    November 2020
    August 2020
    July 2020
    June 2020
    April 2020
    February 2020
    September 2019
    July 2019
    May 2019
    March 2019
    November 2018
    October 2018
    June 2018
    May 2018
    February 2018
    January 2018
    November 2017
    October 2017
    August 2017
    June 2017
    May 2017
    February 2017
    November 2016
    October 2016
    August 2016
    July 2016
    May 2016
    January 2016
    October 2015
    July 2015
    April 2015
    January 2015
    November 2014
    August 2014
    June 2014

    RSS Feed

Proudly powered by Weebly
  • Home
  • Meetings
  • About
  • Resources
    • Organizations
    • Fact Sheets
    • Resource Lists
  • Contact
  • Facebook