[Azra Bakovic]

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[Sue Swenson]

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Strategize more about supports that are actually community-based, that help communities become more supportive of all people, and help them to support all families, don’t just focus on the neoliberal fantasy of individual contracts for support.

[Alberto Vasquez]

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Thanks, Sue. That’s a great point. Part of the assumptions of the personalised budgets and direct payments implemented in many countries is that the market will ensure people can get the support they need. But there is a lot of evidence it’s not working for all. Without supportive and inclusive communities, community-based networks and support for families, there is a risk of falling into the “uberisation” of support.

[Steven Allen]

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<p style=”text-align: left;”>I am yet to be convinced that the disability constituency need to focus on the care paradigm, or that the concept of care can or should be conflated with the human rights concept of support. The problematic remains that care centres the labour of carers and prioritises a service-based perspective that de-centres autonomy, rights and dignity of persons with disabilities. The language itself continues to frame the rights of persons with disabilities as being dependent upon others, rather than upholding the obligations of states and communities to ensure the requirements of independence and inclusion, these being rights and imposing obligations of respect for the control of rights-bearers (contra ‘service users’). Pragmatic alignment is incredibly worrying here and feels like relying on old stigmas, as opposed to a more principled and human rights-based approach that can empower, inform and drive systems change. Ethics of care, no matter how well-meaning, have led us down paths that we now understand to have reduced, not increased, dignity, equality, justice and inclusion for persons with disabilities. The question to my mind, therefore  is not how to engage the historical wisdom of this agenda, but how to prevent the predictable harms. Damage limitation?</p>

[Egwelu Timothy]

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The disability community can strategically engage in discussions on the care economy to advance independent living and community support for persons with disabilities through the following ways:

1. Build coalitions: The disability community should collaborate with other organizations and groups that advocate for the care economy to strengthen their advocacy power. By building coalitions with groups such as care workers unions and other advocates, they can push for policies that prioritize the needs of persons with disabilities.

2. Focus on policy advocacy: The disability community should advocate for policy changes that prioritize independent living and community support for persons with disabilities. Advocacy efforts should focus on policies that increase funding for in-home care services, expand access to affordable housing, and improve transportation options.

3. Increase awareness: The disability community should raise awareness among policymakers, the media, and the general public about the challenges faced by persons with disabilities in accessing quality care. They should use storytelling and personal narratives to show how lack of access to quality care affects their lives, and why it is important to prioritize care services.

4. Engage in research: The disability community should conduct research that highlights the impact of the care economy on persons with disabilities. This research should be used to inform policy discussions and advocacy efforts.

5. Work with policymakers: The disability community should engage with policymakers to ensure that their voices and concerns are heard in policy discussions. They should work with policymakers to create policies that address the unique needs of persons with disabilities, such as flexible work hours and paid family leave for caregivers.
<p style=”text-align: left;”>In summary, the disability community can strategically engage in discussions on the care economy to advance independent living and community support for persons with disabilities by building coalitions, focusing on policy advocacy, increasing awareness, engaging in research, and working with policymakers.</p>

[Alberto Vasquez]

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Thanks, Steven. You’ve brought up crucial strategic questions. Alignment seems, indeed, problematic if we don’t examine and transform the values, approaches, and theories of change related to care policies. Historically, these policies have carried a negative legacy of segregation, disempowerment, and medicalisation of persons with disabilities.

Recently, numerous governments have announced significant investments to address the care economy, focusing on both paid and unpaid labour related to care. The priority is to boost investment in the care economy and modify the terms and conditions of care work to foster gender equality, eliminate discrimination, and encourage decent employment. In Latin America, for example, several countries such as Argentina, Costa Rica, Chile, Colombia, Peru and Uruguay have prioritised this issue in their political agendas. Some of these countries are already moving towards comprehensive care systems, which will inevitably impact persons with disabilities. Additionally, the Inter-American Court on Human Rights has received a request for an advisory opinion to determine the content and scope of care as a human right and its interrelationship with other rights, considering the American Convention on Human Rights and other international instruments.

Even when adopting a pessimistic perspective, it is essential to ensure that the development of the care agenda does not result in implementing discriminatory policies and practices.

[Alberto Vasquez]

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Dear Egwelu,

Those are great entry points. I believe a crucial aspect is ensuring that the community of people with disabilities can contemplate and strategise the most effective way to engage with the agenda and determine short- and medium-term objectives. As Steven mentioned, one aim could be to guarantee that investments in care do not adversely impact the right to independent living and inclusion in the community for people with disabilities. However, as you suggested, it might also be feasible to consider how investments to reduce unpaid work can be redirected towards constructing support networks and services for persons with disabilities.

[Daniel Mont]

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I’d love to hear about examples of good community based practices that do build a supportive environment, and do it in a way that ensures full autonomy of people with disabilities.

[Peter Torres Fremlin]

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Good to see this discussion. I think those working on policy can do more to build on the way that living-together has been imagined and practiced by disabled people and disability communities for as long as we have history.

More recently, the independent living movement and, for example, the disability justice principles formulated by Sins Invalid, have given different visions of how we can live together.

Giving society a new vision of how our interdependence can work, and how we can live in communities together, is potentially the biggest contribution that we as a community can make.

More from me on this in a recent article rethinking care systems with personal experience and the latest policy work.

[Maria Antonella Pereira]

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In addition to what many people have already pointed out, I think it is important also to consider that in certain regions where we are seeing rapid aging, those that are already providing supports to people with disabilities may also increasingly require supports themselves. Many of these people will become people with disabilities. It is for this reason that the idea of community supports is so critical. Discussions on the care economy should recognize this value that the framing around community supports brings to the table.

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