In early 2021 Brandi and Lauryn started talking over messenger to discuss their common desire for a Paid Parent Provider program to be a permanent fixture in the services available for disabled minors in Arizona. Due to the complexity of the Covid-19 Pandemic the state of Arizona issued a temporary flexibility in the spring of 2020 where parents of minor children receiving Department of Developmental Disability (DDD) and Arizona Long Term Care System (ALTCS) services could become a Direct Care Worker (DCW) for their own children.
This short term flexibility proved to be such a success for Arizona families that their grassroots advocacy efforts emerged in order to seek a permanent program placement in Arizona. In connecting with other families Lauryn and Brandi quickly learned that this temporary program was alleviating a variety of concerns and program inequities.
For example, a DCW shortage existed for Arizona families prior to 2020 but the pandemic exacerbated this issue. Many families navigating disability services with minor children were experiencing their own employment displacement or termination due to ensuring that their children were adequately taken care of on a daily basis. And lastly, continuity of care of the members has been a historical issue, by employing parents as their child’s direct caregiver it has eliminated the concerns that arise with inexperienced caregivers and high turnover rates.
In the spring of 2021 Lauryn and Brandi created a change.org petition, published an opinion and request portfolio that was sent to state organizations and elected officials. They also built valuable relationships that catapulted their voices to be heard by decision makers in Arizona.
Through the efforts of hundreds of parent advocates contacting their elected officials and support from a variety of disability organizations, the families with disabled minors receive a program extension beyond the Covid-19 Public Health Emergency. This extension was requested and given through the ARPA federal funding program.
LAURYN AND BRANDI
Pending CMS approval, parents of minor disabled children in Arizona will now be able to be paid Attendant Care and Habilitation providers for their children on a permanent basis.
In June 2023 AHCCCS published a proposal to create a permanent Paid Parent Caregiver program. This proposal would have restricted parents to providing only Attendant Care services to their minor children, essentially cutting the current operating program in half. Due to the Direct Care Workforce shortage non family providers are not and would not be available to fulfill the large vacancies this proposal restrictions would have created.
Under the leadership of Brandi and Lauryn thousands of parent providers and community stakeholders came together and used their voices to advocate for changes to this proposal requesting the inclusion of both Habilitation and Attendant Care in the permanent program. On August 24, 2023 AHCCCS published their amended proposal which now allows parents of minor children with disabilities to provide both of these service hours. This change will allow ALL current and future DDD and ALTCS families to provide HCBS services to their minor children permanently!
Moving forward Brandi and Lauryn are building a non-profit called Raising Voices Coalition. They have connected 2,700 parent providers in Arizona through a Facebook group about advocacy and program navigation. They have also begun advocating for similar programs on the national level.
Brandi is a mother of three children, wife, caregiver, business owner and community builder. She graduated from Brigham Young University – Idaho with a Bachelor’s Degree in Education. She has worked in the professional fields of Government Contracting, Real Estate Development and Disability Advocacy. While navigating social services and the complexity of state benefits for her son, she has gained valuable experience as a parent caregiver and benefit coordinator. She has a strong desire to foster relationships between the disability community, caregivers, and our elected leaders in order to improve the lives of those on the front lines of daily caregiving.
Lauryn is a mother of two children, a business owner and creative. Her professional career has spanned several fields including Graphic and Web Design, Directing Customer Experience, Life Coaching, and Disability Advocacy. Through her professional coaching certifications and personal life experience Lauryn has developed a passion for supporting clients through transformational change, and helping people from all walks of life to thrive.
Shauna is a mom of five, long time advocate, and caregiver. She graduated with a degree in Communication from the University of Arizona and has spent the last fifteen years in recruitment, business development, and social media management. She recently completed a fellowship for the University of Arizona LEND program focusing on disability law advocacy. As a caregiver for her disabled son, Shauna has a deep understanding of how social media can connect families who may already feel isolated due to their child’s disabilities.