Self-direction in social care has become an increasingly critical approach for individuals who seek greater autonomy over their support systems. This blog is inspired by a thought-provoking conversation between Molly Morris from The Self-Direction Center in the United States and Chris Watson from Self Directed Futures in England. Both professionals are deeply engaged in advocating for self-direction and supporting its implementation within their respective regions.

Molly Morris, has been instrumental in advancing self-directed care in the U.S., particularly through Medicaid-funded programs. Her work involves supporting states in structuring self-direction models that maximize flexibility while navigating complex regulatory frameworks. Chris Watson, from Self Directed Futures in England, focuses on empowering local councils and care providers to adopt innovative self-direction strategies, ensuring compliance with national legislation while promoting person-centred approaches.

Drawing from their firsthand experiences, this blog delves into the similarities and differences between self-direction in the United States and England, offering insights into legislative frameworks, funding structures, and the ongoing challenges faced by both systems. By understanding these perspectives, we can identify opportunities for enhancing self-direction worldwide and improving the lives of those who rely on these essential services.

Historical Development and Legislative Foundations

Self-direction in both the US and England has evolved as a response to institutionalization and the need for more person-centred support. In the US, the Cash and Counselling demonstration project in the late 1990s and early 2000s was a landmark study that demonstrated the benefits of self-direction, leading to wider adoption across states. This research-based approach provided robust evidence of improved outcomes and cost-effectiveness, prompting Medicaid to incorporate self-direction as a core option in many state programs.

In England, self-directed support gained traction following the introduction of direct payments in the 1990s, which allowed individuals to receive funds to manage their own care. The 2014 Care Act further enshrined the principles of self-direction, including personal budgets and individual service funds (ISFs). The latter, pioneered by Simon Duffy, allows care providers to manage budgets flexibly with the person receiving support. However, despite these legal provisions, uptake and implementation have varied widely across local authorities.

Key Similarities Between the US and England

1. Commitment to Person-Centred Support: Both countries emphasize the importance of individuals having control over their care arrangements, allowing them to choose their support workers, decide how services are delivered, and tailor support to their needs and preferences.
2. Challenges in Workforce and Funding: Workforce shortages and underfunding are major challenges in both systems. Low wages for care workers lead to recruitment and retention issues, and funding constraints limit the availability of self-directed support. The US struggles with Medicaid regulations and state-level variations, while English local authorities face budget cuts and austerity measures.
3. Role of Third-Party Entities: Both systems utilize intermediary organizations to facilitate self-direction. In the US, Financial Management Services (FMS) organizations help individuals navigate tax and employment responsibilities. In England, third-party organizations and care providers managing ISFs play a similar role.
4. Family Involvement in Care: In both countries, family members often play a significant role in self-directed arrangements. The US allows individuals to hire family members, including spouses and parents, as paid caregivers, especially after changes prompted by the COVID-19 pandemic. In England, while family members can be employed under direct payments, they cannot be paid if they live with the person receiving support, leading to constraints on family involvement in formal care arrangements.

Key Differences Between the US and England

1. Funding and Financial Mechanisms: The US system is heavily dependent on Medicaid, which imposes strict regulations on how funds can be used, creating complexity in program design. Each state has discretion over how self-direction is implemented, leading to significant variability. In contrast, England’s system is primarily funded through local authorities, with personal budgets allocated under the Care Act. While this allows for more flexibility in theory, austerity measures have severely constrained funding, leading to inconsistent application across councils.
2. Regulatory Environment and Bureaucracy: Medicaid’s rules in the US create significant administrative hurdles, making self-direction more complex to navigate. In England, while the legal framework provides clear rights to self-direction, practical implementation is inconsistent, with many councils failing to offer all available options.
3. Use of ISFs vs. Traditional Agency Models: England has pioneered the use of ISFs, which allow care providers to hold and manage budgets on behalf of individuals while ensuring flexibility and personalization. In the US, while third-party organizations handle administrative tasks, the concept of provider-managed budgets is less prevalent, with most funding going directly to individuals or their chosen representatives.
4. Approach to Market Development: In the US, The Self-Direction Center and similar organisations actively work with states to develop and refine self-direction programs. England’s SDS Network England, plays a similar role but faces greater barriers due to the fragmented nature of local authority decision-making and the sheer number of local councils.
5. Growth and Sustainability of Self-Direction: The sustainability of self-direction is an ongoing challenge in both countries, but for different reasons. In the US, concerns about fraud, accountability, and Medicaid compliance create barriers to expansion. In England, councils often resist self-direction due to financial pressures and a lack of understanding of its benefits. Additionally, there is a growing concern about what happens when family caregivers, who play a crucial role in many self-directed arrangements, are no longer available to manage support.

Workforce and Economic Considerations

Both the US and England face a crisis in the care workforce. Pay for direct care workers is often lower than in retail or fast-food jobs, making recruitment difficult. The self-employed care workforce is growing in England, particularly in regions like Somerset, where micro-providers offer flexible, community-based support outside traditional agencies. In the US, self-directed workers are often paid below agency rates due to Medicaid restrictions, limiting the appeal of these roles.

A key difference is the emergence of self-employed care providers in England, who operate independently and are often paid higher wages than agency-employed workers. This model reduces overhead costs and keeps more money in the local economy, but regulatory concerns about worker rights and employment classification have slowed its expansion. In the US, unionized agency workers resist self-direction due to concerns about job security and training standards.

Future Directions and Opportunities

The evolution of self-direction in both countries depends on overcoming bureaucratic and financial obstacles. There is a need for:

• Better Economic Data: Demonstrating cost savings and improved outcomes from self-direction can strengthen policy advocacy.
• Greater Flexibility in Funding: More adaptable funding models would allow for greater individualization and sustainability.
• Enhanced Workforce Support: Addressing pay disparities and ensuring a sustainable care workforce is critical.
• Cross-National Learning: The similarities between US and English self-direction suggest opportunities for sharing best practices and strategies.

Self-direction in the US and England shares common principles of autonomy, flexibility, and person-centred care, yet operates within very different systems. The US model is shaped by Medicaid’s regulatory complexity, while England’s system is constrained by local authority funding limitations. Both face challenges in workforce sustainability and funding adequacy, but innovative solutions such as ISFs and self-employed care workers point to potential pathways forward. By learning from each other’s successes and failures, both countries can work toward a future where self-direction is not only an option but the preferred model of care for those who need support.

Chris Watson
Chris Watson is the founder of Self Directed Futures, the Chair of SDS Network England and co-founder of LDA Commissioners Network. With extensive experience in strategic commissioning and change management, Chris advocates for innovative, community-led approaches to adult social care.