A Goodbye From Alison Barkoff

September 30, 2024

Alison Barkoff

As I start my last week at the Administration for Community Living, I am filled with so many emotions. I am so proud of everything we have accomplished together, and I'm optimistic for ACL's future. But most of all, I am deeply grateful. As I shared in my first blog post, ACL's mission is my life's mission. It has truly been the honor of a lifetime to lead ACL and to work alongside the ACL staff, the aging and disability networks, and my federal colleagues to advance the policies and programs that make it possible for people with disabilities and older adults to live and fully participate in their communities.

I joined ACL at a dire time. I had spent the prior year - the first year of the COVID-19 pandemic - fighting alongside the networks and others to protect the lives and rights of older adults and disabled people. Already at highest risk for death due to the virus itself, they also were facing discrimination in accessing lifesaving treatment and were at risk of losing the ability to live safely in the community because of the unavailability of community services. Our work to support community living literally had become the difference between life or death. And at the same time, the pandemic also created visibility into our issues - along with urgency and momentum for addressing them - like I had never seen before in my nearly three decades advocating for community living. The moment called me to return to public service.

I joined ACL on the first day of the Biden-Harris administration committed to continuing to advocate from the inside, armed with a set of priorities that were created with the disability and aging communities and reflected both the urgency and opportunity of the time. Together, we have seized these opportunities, elevating the needs of older adults and disabled people and driving major interagency initiatives and policies to improve our ability to meet them.

Protecting the health and safety of people with disabilities and older adults during the pandemic was at the top of the list. We worked closely with other agencies to ensure that they were considered in all policies, from civil rights guidance about rationing lifesaving treatment, to visitation policies in hospitals and other facilities, to the dissemination of accessible COVID-19 tests. The networks found new ways to provide - to ever-increasing numbers of people - the critical services people depend on. I will forever be in awe of the commitment, innovation, and sheer determination demonstrated by the aging and disability networks - and the ACL staff - throughout the pandemic. Your work truly was lifesaving.

The profound impact of our work during the pandemic illustrated the unique - and crucial - role our networks play in public health. That, in turn, helped us make the case for additional funding to increase access to initial vaccinations, accelerate uptake of the updated shots, and expand our partnerships with public health systems, and it has paved the way for better integration of the disability and aging networks into state and federal disaster planning and response.

The pandemic also shone a light on the importance and fragility of the "care infrastructure" and made strengthening it a top priority for the administration, giving us a once-in-a-generation opportunity for new investments and policies to expand community living. I am so proud of the many ways ACL seized this opportunity, working in partnership with other federal agencies and our networks. We launched the interagency Direct Care Workforce Strategies Center to begin to address the national shortage of direct care professionals, which became a true crisis as a result of the pandemic. We issued and are implementing, the first-ever National Strategy to Support Family Caregivers, and we've released a Strategic Framework for a National Plan on Aging to ensure that older adults, including those aging with and into disabilities, can age well in their own communities. We are helping states and local communities better coordinate the community services and affordable, accessible housing that many people need to make community living a reality through our interagency Housing and Services Resource Center. We've launched an interagency partnership to improve behavioral health supports for people with disabilities and equity research and initiatives to address the additional barriers that people from underserved communities face in community living.

We've also been focused on ensuring the durability of policies that impact older adults and disabled people. We took the opportunity to update our Older Americans Act regulations for the first time in more than 30 years and to develop the first-ever federal regulations for Adult Protective Services. These two rules have strengthened the aging network and positioned it well to serve a rapidly aging America.

From my first conversation with U.S. Department of Health and Human Services (HHS) leadership, I carried the disability community's message that updating the regulations implementing Section 504 of the Rehabilitation Act for the first time in almost 50 years was a "must do." As a longtime civil rights lawyer, working with the Office for Civil Rights to help shape the Section 504 rule has been a highlight of my career; we now have one of the strongest tools ever to address health care discrimination and advance health equity for disabled people of all ages.

ACL also brought our expertise and the perspectives of people with disabilities and older adults into the development of the Medicaid Access Rule, the most consequential rule regarding HCBS in more than a decade, and ensured their rights were protected in updated regulations implementing Section 1557 of the Affordable Care Act and the Public Charge Rule. All of these regulations will have a positive impact on older adults and disabled people for decades to come.

I want to end where I started, with gratitude and optimism. As I reflect on the unprecedented progress we have made to advance community living over the last four years, I am so appreciative of the advocacy and partnership of the disability and aging networks and community; you have been the impetus for and influenced every federal policy and initiative on which we've worked. I am also so thankful for the incredible ACL team, whose commitment and hard work are behind each of these accomplishments.

As I look ahead, I am optimistic. The pandemic forged ACL into the agency its founders envisioned more than a decade ago. ACL not only serves as a trusted advisor to the secretary, but agencies across HHS and other departments also seek our input and advice. ACL and the aging and disability networks are now at so many tables, ensuring the needs of people with disabilities and older adults are considered in policies and programs. ACL has become the convener on many issues, supporting partnerships to address big, complex issues and facilitate collaborations at state and local levels. The partnerships across the aging and disability networks have grown and deepened, improving our ability to leverage all available resources and strengthening our advocacy at every level, highlighting the reason ACL was created in the first place and moving us toward the "One ACL" we always talk about. ACL and our networks are stronger than ever, and I know that we will build on that strength and continue to make strides toward achieving our vision of true inclusion for all people.

I say "we" intentionally. While I am leaving ACL, I have always been, and will forever be, a part of "Team ACL." I look forward to finding new ways to partner and move forward our shared priorities in my new role at the George Washington University Milken Institute School of Public Health, and I am excited to have the opportunity to bring our issues into the broader public health and health care conversations.

Thank you for your partnership, dedication, and support over these last four years.