MY LATEST WORK
Alison Beier is a mom of two, Family Voices of CA Project Leadership Graduate, and Children’s Healthcare Advocate. In January of 2020, she was sworn-in to serve a two-year term as a member of the Medi-Cal Children’s Health Advisory Panel (MCHAP). Before that, Alison completed a Department of Developmental Services (DDS) grant-funded project on reducing disparities for regional center clients of African American and Latino descent. She has been member of the UCLA Mattel Children’s Hospital Parent Advisory Council since 2011, serving as chair from 2016-18; and, has advocated on behalf of the hospital in Washington DC.
Evan was born with kidney failure; from approximately 30 days old, his life relied on dialysis. For two and a half years, we drove to the hospital every Monday, Wednesday, Friday, and Saturday for 4-hour dialysis treatments – it was our life. In 2012, Evan received his first kidney transplant; a year later, he’d need another. Both kidneys were gifts from living donors: the first from me, his mom, then Monica, my mother’s cousin. His current kidney, lovingly nicknamed “Little Murph,” has been with him for over 6 years…
If you could have anything you want in the world, what would it be? For me, the answer is: transformed organ donation in the United States. 112,437 people are currently waiting for life-saving transplants in the US; one person is added to that list every 9 minutes. With existing organ donation policies in place, 20 people on the transplant waiting list die every day…
Family-professional partnerships help ensure health care programs and policies are appropriate and well-utilized. While including parents as equal members of their child’s care team is an accepted standard for pediatric care, the core principles of family engagement have not been widely adopted as drivers of health care systems improvement. Learn about two statewide projects – a parent leadership training program and a hospital learning collaborative – and their efforts to integrate families as equal partners in addressing system issues.
A lively conversation about this evolving partnership and what it really takes to foster an effective and sustainable collaboration; with audience Q&A.
For the greater part of 2013, I rushed my son to the hospital every three to six weeks to be treated for septic shock – the often-fatal condition, triggered by relentless infection and an increasingly fragile immune system. Evan, age 4, waited for a new kidney. His first transplant, scarred from repeated infections, required nephrostomy tubes to drain. Doctors pushed to remove the ailing graft; they were convinced we were out of options. The head of the department berated, “If we don’t remove it, your son will die!”
Alison’s outtakes from an Autism Society of Los Angles, Parent Empowerment Project production, in 2019.
A California Department of Developmental Services (DSS) grant-funded project to reduce disparities, in services offered to and utilized by, regional center clients of African American and Latino ethnicities.
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