Two women sitting at a table during a medical exam
Authors: Rohit Dahal, Ceci Thunes and Brandon Wilson

When Congress passed the American Rescue Plan Act (ARPA) two years ago, we applauded the dedication of funding to support home and community-based services (HCBS), a crucial program that empowers Medicaid beneficiaries to receive supportive services in their own home or community rather than institutions or other isolated settings. 

However, as those of us in this work know, the design of policy and the implementation of policy can be two radically different things and even the best policy will falter and fail without guidance and advocacy by the people and communities programs aim to help. This was the impetus behind new work for the Center for Community Engagement in Health Innovation at Community Catalyst, with support from the CARE For All with Respect and Equity Fund, on a project to promote the equitable implementation of the ARPA funding set aside to support HCBS. Through a participatory action model, we aim to engage communities, prioritize their preferences and ensure that federal funding for HCBS is utilized effectively.  

Building Power through Community Engagement 

Federal funding for HCBS is most impactful when community members have a meaningful say in how it is spent. At the outset, we developed a Community Advisory Group (CAG), which was instrumental in assessing the state of the field regarding equitable ARPA spending in HCBS and the care economy. This diverse set of stakeholders – community members, local and state advocacy groups, HCBS providers, and health systems leaders provided leadership, guidance and advocacy in a way that surfaced lessons learned, highlighted areas for improvement and ensured equity and inclusion. Through an assessment process inclusive of recommendations from the CAG, we identified and began partnering with Somali Community Resettlement Services (SCRS) in Olmsted County, Minnesota and the Whitman Walker Health System in D.C. to grow their capacity for equitable ARPA implementation in HCBS and build the leadership capacity of community members that influence APRA spending on HCBS.  

Whitman-Walker Health System and Somali Community Resettlement Services in Olmsted County have both demonstrated expertise of working to ensure that systemically underserved communities have access to high-quality health care services and that equity is prioritized in health care delivery. Their expertise and experience in home and community-based services and advocacy make them valuable resources in addressing health disparities and promoting inclusivity. 

Whitman-Walker Health System 

  • Whitman-Walker Health is a non-profit community health center based in Washington, D.C. with a rich history of providing health care services to diverse communities, particularly the LGBTQ+ population. 
  • Whitman-Walker Health advocates on local budget spends of ARPA-related funds for housing, employment programs, health promotion and disease promotion programs in D.C. 
  • They have a strong commitment to addressing health disparities and advancing health equity, advocating for policy changes and promoting inclusive health care practices. 

Somali Community Resettlement Services in Olmsted County 

  • Olmsted County, Minnesota is home to a significant Somali population and the Somali Community Resettlement Services organization has been instrumental in providing support and services to this community. 
  • In 2022, SCRS completed a community assessment of East African and Afghan individuals in Rice, Olmsted and Hennepin counties to determine their awareness and access of HCBS and continues to expand this work by locating culturally specific HCBS providers in these counties to support the needs of immigrant elders, individuals with disabilities, and their caregivers. 
  • SCRS collaborates with health care providers, community organizations and local government to advocate for equitable health care access and culturally competent care for Somali residents and engage in community organizing and capacity-building activities to empower the Somali community and promote social justice and equity. 

At Community Catalyst, we believe that thoughtful, community-informed health system innovation is crucial for transforming and improving the HCBS system to meet the diverse needs of individuals and communities. To strengthen the capacity of community members and coalitions more broadly beyond the two selected partners, we have established a monthly Capacity Building Assistance (CBA) Community of Practice (CoP). This CoP serves as a platform for sharing emerging and evidence-based strategies for active community participation in ARPA funding, including needs identification, implementation plans, monitoring and evaluation. Key topics discussed in the CoP include overcoming barriers to community engagement, community-driven data collection and analysis, prioritizing community feedback in local government, and building trust and transparency in engagement strategies. We are excited to create and share the lessons learned from the CBA Communities of Practice with the health justice movement, Community Catalyst partners, thought leaders and stakeholders. By sharing emerging and evidence-based strategies, these resources aim to sustain momentum and address resource gaps for comprehensive and equitable HCBS. 

Preliminary Lessons Learned 

There are several key themes and lessons that we’ve learned regarding equity in HCBS from the Community of Practice and our initial Community Advisory Group.  

  1. Transportation and housing barriers: Care workers and beneficiaries are facing challenges related to transportation and housing, which can affect access to and delivery of HCBS, often placing both at risk of displacement and exacerbating workforce shortages in rural communities. 
  2. Cultural appropriateness: Engaging with beneficiaries in culturally appropriate ways, such as utilizing oral communication methods for communities like the Somali community, can lead to better health outcomes, including increased vaccination rates. It was mentioned that some cultural values align with the concept of family care at home.  
  3. Awareness of available services: the communities they support rely heavily on verbal communication, rather than written or printed materials; so trusted messengers are an integral part of communication. Barriers and challenges regarding awareness of services, particularly by persons with disabilities, was resolved by advocating to and working with The Department of Human Services and building the capacity of community members (e.g., trusted community elders) to bring information back to the community to inform and educate them about service availability. 
  4. Workforce issues: Workforce equity is a significant concern in HCBS. States are implementing various initiatives to address this, such as establishing task forces and advisory groups, providing training and certifications for professional growth, and addressing social issues impacting specific groups within the workforce. 
  5. Technological infrastructure and accessibility: Some states are making one-time investments in technological infrastructure, including accessibility improvements, systems enhancement and increased IT/data capabilities. These investments contribute to improving equity in service delivery systems and may be models for sustainability.  
  6. Intersectional approaches to equity: It’s important to consider equity across various dimensions, including ethnicity, language, LGBTQ+ status, and ability, in addition to race. Minnesota and D.C. are recognized for their intersectional equity work. 
  7. Geographical considerations: Geographical factors, such as rural versus urban areas, create complexities and contribute to inequities in HCBS. Policy approaches and strategies need to consider these geographical differences. 
  8. States with an appetite for engagement demonstrated an interest in strengthening their community engagement approaches, while also showing commitment from state agencies, legislatures and governor’s offices. States that were effective in community engagement were able to utilize existing forms of community and stakeholder engagement, such as advisory committees, workgroups and beneficiary advocates. Some states conducted surveys, held public meetings and provided opportunities for public comment. 
  9. State engagement with specific community groups: Some states targeted specific communities for engagement, such as unionized direct care workers, tribal communities and provider communities.  
  10. Cross-sector and governmental collaboration were also highlighted as important factors. Gubernatorial leadership played a crucial role in promoting a culture of collaboration, although changes in administration can impact these efforts. 

Overall, these findings emphasize areas that states can prioritize with ARPA spending, such as the importance of addressing social drivers of health as transportation and housing, employing culturally appropriate approaches, improving workforce equity, investing in technological infrastructure, considering intersectional equity, recognizing geographical differences, engaging with communities effectively and fostering cross-sector collaboration to advance equity in HCBS.  

This blog was written with help of Rohit Dahal who is a fellow at the Center at Community Catalyst. Click here to learn more about Rohit.

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By centering the needs and preferences of individuals with lived experiences, Community Catalyst aims to hold policymakers accountable to a vision of a health system rooted in race equity and health justice. Through this project, we strive to create a thriving, sustainable care infrastructure that benefits all individuals and families, promoting dignity, independence and economic security for all. 

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