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.
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.
For the greater part of a year, Alison Beier rushed her son to the hospital every three to six weeks to be treated for septic shock – an often-fatal condition triggered by relentless infection. Evan, 4, waited for a new kidney. His first transplant, scarred from repeated infections, required tubes to drain – his immune system, fragile.
Evan’s doctors pushed to remove the ailing kidney; his life would rely solely on dialysis. They were convinced there was no other option…
Children’s Hospital Association held their 13th annual Speak Now for Kids Family Advocacy Day in Washington, D.C. July 12-13. Our family, which includes 7-year-old Evan who has multiple congenital anomalies, was asked to represent UCLA Mattel Children’s at the event. Much like a Family Voices of California (FVCA) Health Summit & Legislative Day, we were prepped upon arrival for our meetings with legislators the following day. In fact, the entire legislative day mirrored our experience at FVCA’s Health Summit in Sacramento this February.
Colorful, PowerPoint slide presentation Alison gave at the FVCA Health Summit in 2017.
In 2012, the Mattel Children’s Hospital UCLA Parent Advisory Council identified areas for improvement in the care of pediatric patients within the UCLA Emergency Department. A successful long-term partnership was formed, resulting in new protocols that directly improve patient care; improving care in the Emergency Department through a successful parent advisory council partnership.
A UCLA Mattel Children’s Hospital Parent Advisory Council video on what central line (central IV access) care means to them. Video was used in-house for training purposes.
Member, Medi-Cal Children’s Healthcare Advisory Panel (MCHAP), 12/2019 – present: MCHAP advises Department of Healthcare Services (DHCS) on policy and operational issues that affect children in Medi-Cal. Member, UCLA Mattel Children’s Parent Advisory Council (PAC),...
Medi-Cal Children’s Healthcare Advisory Panel (MCHAP)
MCHAP advises Department of Healthcare Services (DHCS) on policy and operational issues that affect children in Medi-Cal.
Panel Member, 12/2019 – present
UCLA Mattel Children’s Parent Advisory Council (PAC)
Council established to facilitate partnerships between families, administration, and staff of UCLA Health Systems.
Council Member, 2011 – present
Council Chair, 2016 – 2018 (elected)
Successes with the Council Include:
Conceived and developed pediatric passport to facilitate intake at triage in the Emergency Dept. Passport is now built into EMR and a Peds Passport mobile app was created for use outside of the area.
Health System wide sepsis protocol in place as a result of a partnership between the PAC and the Emergency Department. Pediatric Sepsis Order set and Screening Tool developed and integrated into the EMR in 9/2013. ED Code Sepsis Initiative in 3/2014.
Collaborated with Physician Billing: Case Managers, called Patient Advocates, are now automatically assigned for high utilizers. Ability to apply payment (over the phone) to desired line charges as opposed to oldest charges.
California Nurse led Discharge Learning Collaborative (CANDLE) project, a nearly 2-year initiative to advance systems level changes in discharge care delivery for hospitalized children.
Advisory Member, Jan 2019 – present
Drive reforms through educational outreach and improving legislation in order to promote policies and activities that increase the availability, access and health equity of solid organ transplantation in the United States.
Executive Board Member, March 2020 – present
- Facebook – Alison Beier Advocate
- Family Voices of California
- Family Voices
- PFCC Partners – Patient & Family-Centered Care
- California Early Intervention Technical Assistance Network
- Lucile Packard Foundation for Children’s Health
- Support for Families of Children with Disabilities
- The Arc
- Autism Society
- Autism Society of Los Angeles
- Family Voices United
- Disability Voices United
- National Down Syndrome Congress
- Little Lobbyists
- Disability Rights California
- Department of Healthcare Services
- TIGER Training
- Learning Rights Law Center
- Human IT – Low Cost Internet
- Boys and Girls Club of America
- CA Women, Infants, Children (WIC)
- Parent to Parent USA
- Healthcare and Elder Law Programs Co.
- Team of Advocates for Special Kids
- California Department of Social Services
- CHIP Program
- Neighborhood Legal Services
- The Help Group
- Foster CoalitionCatholic Charities
- Curacao Childen’s Foundation