ryan slaughter
Editor’s Note: This article was originally written in early February of 2020, before COVID-19 systemically changed and challenged the norms of every aspect of our individual and collective lives. The author has updated this article to introduce and reflect on a few of the considerations that might arise for faith-based organizations serving people with developmental disabilities. However, this article’s main focus is on the macro themes, as well distinct assets and challenges, facing faith-based social services providers working with disabled communities. These themes are relevant during COVID-19, but this article is not a comprehensive summation of the impact of COVID-19 on such organizations.
In such a short amount of time, COVID-19 has changed our whole way of living. As we look forward to a time when the virus will be gone, it’s hard to imagine anything could go back to the way it was before. While there has been substantial coverage on how the virus is evolving, predictions on “flattening the curve” and increased public education hygiene and social distancing, minimal attention has been given to how COVID-19 is impacting organizations that support individuals with developmental needs.
Consider a time not that long ago: During the final Democratic Party presidential debate of 2019, the moderator asked the candidates what they would do to help disabled people become more integrated into the workforce and their local communities. Candidate Andrew Yang asked the audience to raise their hands if they knew someone with special needs. A staggering number of hands when up. My hand would’ve also been raised had I been in the audience.
Developmental needs are more common in the U.S. than one might imagine. The Center for Disease Control and Prevention (CDC) found that 1 in 59 children was born with an autism spectrum disorder (ASD) in 2018. For comparison, in 2000 the CDC found that one in 150 children was born with an ASD. On average about one in six children are diagnosed with a developmental challenge today. The reasons for this increase are hard to pinpoint. Clinical diagnostic procedures have improved since 2000 by creating more classifications for developmental disabilities. However, individuals are diagnosed with ASD at different points in their life, which makes a study like the CDC’s hard to quantify. The CDC’s study only looked at four-year olds who were diagnosed with ASD in 2000 and 2018, while there are many cases where diagnoses are not made until later in life. This is especially true in minority communities where ASD is often diagnosed at a lower rate and later in life.
There exists today a greater understanding of developmental disabilities, ranging from mild development challenges, such as a speech impairment, to more extreme developmental challenges, such as cerebral palsy. The number of challenges that children with developmental needs and their families face are staggering. Not only are the medical conditions enough of a battle on their own, but nearly two-thirds of children with developmental needs are bullied, a little less than one-third will have self-injuring behavior and nearly 50 percent of children with autism will instinctively run away from a safe environment. An average family’s associated medical costs to provide proper care for a child with autism is about $60,000 per year.
While the CDC provides a lot of data, statistics, and resources for individuals providing care for those with developmental needs, the government does not provide direct local care for these individuals and families. The resources on the CDC’s website often point to other organizations and link users to education documents. These free materials are helpful, but local support and care, and employment opportunities are where nonprofit organizations - both faith-based and secular - are called to fill the gap left by the government.
In particular, the sacred sector refers to the varied spectrum of faith-based organizations that engage in community services, advocacy or the production of goods and services. Sacred sector organizations also serve as workplaces for employees, contractors and volunteers with disabilities. According to a research summary of Family Supportive Practices in the Sacred Sector, a report from Families Valued, an initiative of the Center for Public Justice:
Sacred sector organizations express their religious character in one or more of the following ways: 1) the organization’s stated mission, 2) the organization’s founding, 3) affiliation with a denominational entity, 4) religious criteria for the selection of controlling board, senior management, or staff, 5) financial support or resources drawn from religious institutions, and 6) incorporation of religious practices into organizational life. Different faith-based organizations may exhibit these characteristics in a variety of combinations. Organizations’ faith affiliation may occur in varying degrees, ranging from faith-permeated to faith-affiliated to possessing a faith-based history with no current tie.
It is important to understand the diversity of organizations that serve those with developmental disabilities. These organizations vary in their animating beliefs systems, mission focus areas, and lived practices and norms. This spectrum of difference is not just apparent in the sacred-secular divide of institutions dedicated to the developmentally disabled. This variance exists in the secular social sector as well. I will provide examples of two different secular nonprofits with markedly different approaches and focus areas to illustrate this point.
Autism Speaks is a secular non-profit organization dedicated to supporting and advocating for the needs of individuals with developmental challenges and their families. Autism Speaks is a nationwide organization whose mission is to increase awareness around developmental needs, support research to provide medical breakthroughs, increase early childhood screenings, improve transition to adulthood and provide access to information and services throughout. Autism Speaks is the leading organization for providing care, support and advocacy for those with a developmental need and their families, largely through their partnerships with government, local communities, and other non-profit organizations.
Along with providing support for children with developmental needs, nonprofits such as 2 Dance 2 Dream offers children’s dance classes and opportunities to perform. Originally launched as Legacy of Hope in Austin, Texas nine years ago, 2 Dance 2 Dream’s goal is to bring special needs awareness to dance studios around the country to add space in studios for special needs programs.
These two examples of secular nonprofits serving people with disabilities provided above demonstrate that secular nonprofit organizations can have varied animating beliefs and missions regarding how to provide care and advocacy to people with disabilities. Faith-based organizations can also have a wide variety of focus areas, institutional values and even differences in what they hold as sacred. Sacred Sector is an initiative specifically dedicated to equipping faith-based organizations with diverse sacred worldviews and organizational identities to distinctly live out their missions. Sacred Sector’s Fellowship for seminarians equips them with the skills, experiences and frameworks needed to empower faith-based organizations of which they are a part to better live into their distinct roles and responsibilities holistically. This includes calling faith-based nonprofits with distinct religious and spiritual values to align these beliefs to how they serve, employ and advocate for people with disabilities. In 2018, I served as a Sacred Sector Fellow. This Fellowship gave me the opportunity to apply what I was learning about how faith-based organizations can live into their strengths and address areas that could benefit from better mission alignment. This Fellowship connected with me a holistic framework, called the “Three Ps,” that helped me think through how faith-based organizations can embody their missions in everything they do - understanding how their public policy context, institutional practices, and public positioning align with their faith.
The Sacred Sector Fellowship helped me to recognize that, in the context of serving and employing and advocating with people with disabilities, faith-based nonprofits can benefit from taking a “Three Ps” approach to holistically live out what their faith calls them to in how they engage people with disabilities. The truth is, congregational communities and faith-based nonprofits still have a way to go in holistically serving individuals and families with special needs.
It can be challenging, due to lack of financial or specialized human capital, for congregational communities and faith-based nonprofits to holistically live out their own spiritual values with respect to honoring the image of God in every human being. But churches and nonprofits can start to move toward incarnating their sacred beliefs with respect to treating all community members as those with inherent human dignity. Small, incremental steps, like articulating theological affirmation of those with all levels of abilities as being welcome, conducting training for volunteers on serving those with special needs and ensuring church buildings are mobility accessible can go a long way.
In the context of creating more inclusive environments for people with disabilities, a public justice perspective insists that all distinct individuals and institutions in our pluralistic society collaborate, based on their distinct assets and purposes, to develop holistic solutions. Public justice calls for each different area of life - government, the workplace, the worshipping community, the family - to fulfill its proper vocational office and to work within the communities and structures that comprise each area, to advance human flourishing.
According to CPJ’s 2019 Hatfield Student Research Report, government and civil society organizations must collaborate and partner together to advance a holistic vision of shalom for the most vulnerable among us:
While the government has a clear responsibility to promote policies aimed at [advancing the cause of certain marginalized communities] it is not a task meant only for government. Instead, the government has a responsibility to also create space for civil society institutions to provide personalized, culturally responsive, and holistic services [for people experiencing adversity]. Nonprofit and faith-based organizations, church congregations, schools, and businesses each have unique responsibilities and contributions to make.
There are several different ways government can partner with non-profit and faith-based organizations that serve people with disabilities, but I want to highlight a few in particular that are key during our battle against COVID-19. For one, the government ought to ensure that the public is receiving the most up-to-date and accurate information regarding COVID-19. This information ought to be accessible in a variety of ways and methods that ensure everyone has fair access to the information (e.g. captioning and sign language options at all live press conferences). Individuals with developmental challenges may need assistance in receiving and understanding news updates and the precautions we are advised to take, especially those who require a primary caregiver to assist with basic needs. From there, government ought to partner with disability organizations to best distribute pertinent information and ensure organizations can plan and prepare for the months ahead.
Targeted measures need to be taken to ensure non-profit and faith-based organizations remain operational during this time. The first thing that comes to mind is financial support for disability organizations. As the number of caregivers has decreased, these organizations need the partnership of the government to continue providing care, whether viavideo, a telephone hotline or in some cases, in person. It is still unclear whether individuals with disabilities are able to access the personal protection equipment they need, like masks. Government can help support individuals with developmental needs by supplying non-profit organizations with masks to distribute to their community. Support packages that help disability organizations remain sustainable are crucial to ensuring they will be around once the virus is controlled.
Disability organizations will need to develop continuity plans to adjust their methods of providing care. This may look like providing training for staff to move their care practices to an online medium such as video conferencing and communicating frequently with individuals with developmental needs, not only to share relevant information regarding COVID-19, but by providing that same level of intentional care via a phone conversation. Individuals with complex needs will need to be identified and they will need to be worked with in a unique way to ensure that they receive proper care in this extraordinary time.
There is no end to the variety of challenges and adjustments organizations, families and individuals have made and will continue to make as COVID-19 spreads. Now more than ever, we need to rely on one another for support in this time. There is strength in community and in solidarity. It is essential that government, faith-based organizations and nonprofits work together to create communities that are more aware of individuals and families that have developmental needs. I can’t think of a more crucial time for the sacred-public framework to be activated in our country.
Ryan Slaughter is a graduate of Princeton Theological Seminary. In 2018, Ryan served as a Sacred Sector Fellow with the Center for Public Justice.
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