The intersection of climate change and disability rights is a critical yet often overlooked area in both social and environmental policy. As our planet warms and extreme weather events become more frequent and severe, people with intellectual and developmental disabilities (I/DD) face unique and disproportionate risks. The summer of 2024 painfully illustrated this intensifying climate crisis, exposing the vulnerabilities of our urban and rural communities alike. New York City, for instance, experienced an unprecedented 15 days with temperatures surpassing 90 degrees by mid-July, breaking historical records. This extreme heat overwhelmed the city's infrastructure, leading to power outages and a surge in heat-related illnesses. Meanwhile, California faced one of its worst wildfire seasons, with over 4,000 fires devastating more than 266,000 acres. These fires, driven by drought, high winds, and extreme heat, caused extensive destruction, hazardous air quality, and massive evacuations, resulting in significant economic and environmental repercussions.

While the impacts of climate change are pervasive, they are unevenly distributed across demographic groups. Vulnerable populations, including people with disabilities, face disproportionate challenges in both adaptation and mitigation efforts. Research consistently shows that people with disabilities are at higher risk from extreme weather events, rising temperatures, and shifting environmental conditions due to factors such as pre-existing health conditions, socioeconomic disparities, and barriers to accessing critical information and resources.

According to the Centers for Disease Control and Prevention (CDC), approximately one in six children in the United States has a developmental disability, including conditions such as Down syndrome, autism spectrum disorders, and cerebral palsy. Many with I/DD already face systemic barriers in education, employment, healthcare, and social integration. Climate change not only exacerbates these existing challenges but also introduces new, often life-threatening complications. Despite the clear and present danger that climate change poses to this demographic, existing policies rarely address the distinct needs, insights, and vulnerabilities of the I/DD community in the context of our rapidly changing environment.

Recognizing these concerns, YAI, a leading provider of I/DD services, organized a Climate Change and Disability Policy Symposium in April 2024. This event brought together a diverse panel of experts, policymakers, self advocates, and service providers to address the complex challenges faced by people with I/DD in the context of a rapidly changing climate. Such initiatives are crucial in bridging the gap between climate policy and disability rights, ensuring that the unique needs of the I/DD community are considered in our collective response to the climate crisis.

Disaster Preparedness and Response

One of the most immediate impacts of climate change on the I/DD community is the increased risk during extreme weather events and natural disasters. Research shows that people with disabilities, as a broad demographic, are up to four times more likely to die or sustain serious injuries during such events compared to those without disabilities. For people with I/DD disparity arises from various factors, including communication barriers, physical challenges, lack of support from caregivers and medical equipment, difficulty adapting to sudden changes, and frequent exclusion from emergency planning processes.

The experiences of people like Kisha Haire, a self advocate at YAI, highlight the pervasive anxiety within the I/DD community regarding disaster preparedness. Haire, who lives independently in the Bronx, expresses a common concern:

“I live on my own with my partner on the fifth floor of my building and I want to know in case of a fire or a hurricane, how would I get out and where would I go?”

Such concerns are not hypothetical but are rooted in real-life experiences. The events of Hurricane Sandy in 2012 serve as a stark reminder of the consequences of inadequate emergency planning. Serena Master, Director of the Bureau of Adult Special Populations at the NYS Department of Health, recounts scenes of people I/DD stranded in high-rise buildings without functioning elevators, unable to evacuate or receive support:

“We were down in Coney Island, walking up 16 floors. In some of these buildings, the elevators didn’t work. People were wheelchair users. People couldn’t get out the door, and their home health care workers or their aides couldn’t get to them either.”

While progress has been made in the wake of such disasters, with regulatory changes mandating comprehensive disaster preparedness plans for agencies serving people with I/DD, the approach remains largely reactive. There is an urgent need for anticipatory planning that addresses the unique needs of the I/DD community before crises occur. This includes not only physical evacuation plans but also strategies to ensure continuity of care, access to medications and medical equipment, and support for caregivers during and after climate-related events.

As Megan O'Connor, Deputy Commissioner of the Division of Quality Improvement at OPWDD, emphasized, emergency preparedness must be defined by individual needs. This necessitates extensive cross-sector coordination and information sharing, a challenge that our current siloed systems are ill-equipped to handle. The development of climate change vulnerability assessments, as highlighted by Justin Gundlach, Senior Advisor at New York State's Department of Public Service, is crucial for identifying potential risks and informing long-term resilience strategies. Yet, as Gundlach stressed, we must move beyond reactive measures:

“We don’t want to think that something terrible has to happen before something changes.”

This sentiment underscores the need for anticipatory planning and infrastructure improvements to mitigate climate-related risks before they materialize into crises.

Health Implications

The health implications of climate change for people with I/DD extend far beyond the immediate physical risks of extreme weather events. Dr. Katy Stratigos, a psychiatrist specializing in I/DD and the Director of YAI’s New York START program, noted that many people in this community take psychotropic medications that can disrupt the body’s natural ability to regulate temperature. When combined with challenges in recognizing and responding to heat stress, this impairment can create potentially life-threatening situations. She explained:

“There is a certain range in which humans thrive, and we don’t like to admit it, but we are animals and subject to the same biological constraints as other living creatures. When we go outside of our comfort zone, it becomes difficult for us. We didn’t evolve to handle these extreme conditions, and climate change is pushing us into these heat waves where we can’t thrive.”

Dr. Stratigos’s perspective underscores the fundamental truth that humans, like all animals, have inherent biological limits. As climate change intensifies, it pushes temperatures beyond these limits, compromising physiological and cognitive functions, especially for vulnerable populations like those with I/DD.

Moreover, emerging research has revealed a concerning link between air pollution and increased rates of autism and other developmental disabilities, particularly when exposure occurs during pregnancy. Studies have shown that living near high-traffic expressways can double the risk of children developing autism spectrum disorder (ASD), while residing in areas with high pesticide use can increase the likelihood of children being diagnosed with ASD or developmental delays by 60%. These findings highlight the urgent need to address climate change and environmental pollutants as immediate threats to neurodevelopmental health, particularly among marginalized demographics.

The mental health implications of climate change for the I/DD community add another layer of complexity to this issue. Climate anxiety, defined as “a heightened emotional, mental, or somatic distress in response to dangerous changes in the climate system,” is increasingly prevalent among the general population. According to the American Psychological Association, 68% of adults report experiencing some level of anxiety about climate change, with higher rates among younger adults and those with pre-existing mental health conditions. For people with I/DD, who may already experience anxiety or difficulty processing complex information, the threat of climate change can be particularly distressing.

Dr. Stratigos elaborated that natural disasters not only heighten climate anxiety but also lead to increased rates of PTSD, depression, anxiety, substance abuse, and domestic violence, which are particularly challenging for people with I/DD. Many within the community may struggle to process traumatic events and express their emotions, resulting in distinct manifestations of distress such as increased self-injurious behaviors or regression in adaptive skills. The unpredictability and intensity of climate-related events can also exacerbate existing anxiety disorders or trigger new onset depression, often compounded by disruptions to routine and support systems crucial for maintaining emotional well-being.

Caregiving and Direct Support Professionals

The impacts of climate change on caregivers, both professional and family members, are significant and often overlooked. Climate-related events can place immense strain on caregivers, potentially compromising the quality and consistency of care provided.

Ravi Dahiya, Chief Program Officer at YAI, emphasized the need to consider caregiver proximity in building resilient support systems:

"How do we get our support system, which includes DSPs, to be available to people like Keisha? How does Keisha get the support that is needed…so that, as Keisha pointed out, she doesn’t have to face anxiety during a disaster when living on the third floor?"

Dahiya’s comment highlights the interconnected nature of caregiver support and climate resilience. When caregivers live far from those they support, it not only increases transportation-related emissions but also reduces the ability to respond quickly in emergency situations.

The mental health of caregivers is another important consideration. Dr. Stratigos noted that caregivers often experience heightened stress and anxiety related to climate change, both for themselves and for those they support. This can lead to burnout, compassion fatigue, and decreased quality of care. The need for mental health support and respite services for caregivers, particularly in the context of increasing climate-related stressors, is crucial for enhancing the overall resilience of the support system for people with I/DD.

Socioeconomic Factors

The challenges faced by the I/DD community in the context of climate change extend beyond health and safety concerns, intersecting with broader issues of housing, transportation, and socioeconomic vulnerability. As Dr. Stratigos explained, many people with I/DD, along with Direct Support Professionals (DSPs), live in areas more susceptible to climate-related hazards due to limited accessible housing options and financial constraints, with affordable housing often located in flood-prone areas or urban heat islands. These locations expose residents to heightened environmental risks; flood-prone areas are particularly hazardous, likely to experience severe water damage during extreme weather events, leading to mold growth, structural damage, and prolonged periods without essential services. Urban heat islands exacerbate health problems by trapping heat, causing temperatures to rise significantly higher than in surrounding areas, which is especially dangerous for people with I/DD who may have underlying health conditions that make them more vulnerable to heat stress and related illnesses. This geographic vulnerability is compounded by inadequate public transportation systems, which may become overwhelmed or non-functional during emergencies, further isolating those who rely on them for daily mobility. During climate-related emergencies, public transportation disruptions can make it difficult for people with I/DD to evacuate, reach emergency services, access routine medical care, or obtain essential supplies.

Socioeconomic vulnerability further exacerbates these challenges, as people with I/DD often depend on fixed incomes through social security, and therefore lack the financial resources to adapt to or recover from climate-related impacts. The costs associated with making homes more resilient, such as installing flood defenses or air conditioning units, are frequently prohibitive. Rising energy costs associated with increased cooling needs further stretch limited budgets, while the financial burden of rebuilding or relocating after climate-related disasters can be overwhelming. Many also lack the resources to stockpile emergency supplies or medications, which are crucial for their health and safety during and after extreme weather events.

Compounding these issues are the significant workforce challenges in the disability services sector. DSPs, who play a vital role in supporting people with I/DD, face low wages, limited benefits, and high turnover rates. These factors can compromise the quality and continuity of care, particularly during climate-related emergencies. The economic pressures on both people with I/DD and their caregivers create a compounded vulnerability, where those most in need of support during climate crises are often the least equipped to access or provide it. This intersection of personal financial constraints and systemic workforce challenges in the care sector leaves the I/DD community disproportionately exposed to the risks of climate change.

Inclusive Climate Policy and Advocacy

As global efforts to mitigate carbon emissions and adapt to changing environmental conditions intensify, it is imperative to consider the needs of people with I/DD from the outset to avoid creating or exacerbating barriers. Gabrielle Sedor articulated this necessity, asserting that:

“There is no climate solution without disability inclusion.”

Transportation and infrastructure design are just two areas where climate goals and accessibility often intersect, sometimes in conflicting ways. Sedor emphasized the importance of integrating universal design principles into all aspects of infrastructure, from electric vehicle charging stations to bike lanes and public transit stops. Adopting these principles ensures that infrastructure is both environmentally sustainable and accessible to all members of society. Furthermore, many cities pushing to increase public transit use and develop bike lanes as part of their emissions reduction strategies often fall short in terms of accessibility. As Karolidis observed, the paradox of New York City having “the best public transit system in the country” while simultaneously being “barely accessible at all,” epitomizes the challenges faced by many urban centers. Improving accessibility in sustainable transportation not only benefits people with disabilities but also promotes broader adoption of low-emission travel options, thus repositioning accessibility as a catalyst for achieving broader climate goals.

The unintended consequences of well-meaning environmental policies on people with disabilities further highlight the importance of inclusive policy-making. For instance, the plastic straw ban, aimed at reducing plastic waste, inadvertently creates challenges for people with disabilities who rely on plastic straws for daily living. This example underscores the need to incorporate diverse perspectives, particularly those of people with disabilities, and I/DD specifically, throughout the environmental policymaking process.

One of the most compelling arguments for inclusion in climate action planning is the unique perspective and problem-solving skills that people with I/DD can bring to the table. As Sedor reflected:

“If people with disabilities had been more included, they would said, ‘Okay, where are the systems that are increasing pollution? Where are the systems that are increasing emissions?’”

This perspective aligns with contemporary climate science, which advocates for large-scale systemic changes to effectively address climate change. The adaptability cultivated by people with I/DD, as they navigate a world not designed for them, could prove invaluable in addressing the pervasive challenges posed by climate change.

Transcending Silos

The challenges posed by climate change necessitate a paradigm shift in how we approach service delivery, community support, and policy development for people with I/DD. Traditional siloed approaches have proven inadequate in addressing the far-reaching impacts of climate change on health, housing, transportation, and social services. Dahiya emphasized the critical need for an integrated approach that combines social and environmental considerations to create effective and sustainable support systems.

1. Reimagining Person-Centered Planning for Climate Resilience

Person-centered planning (PCP) offers a powerful framework for enhancing climate resilience through integrated and collaborative strategies. By emphasizing individual preferences, strengths, and aspirations, PCP ensures that support and services are tailored to meet each person’s unique needs and goals, rather than imposing one-size-fits-all solutions. Incorporating climate resilience into PCP involves assessing individual living conditions for climate-related risks and developing personalized emergency preparedness plans.

As O’Connor suggested, this approach might include providing personalized emergency kits, establishing robust communication channels, and creating evacuation plans that leverage natural support networks of family, friends, and neighbors. Care managers play a crucial role in ensuring that all stakeholders—including people with I/DD, their families, and support staff—are well-informed and prepared to implement safety measures during climate emergencies.

Integrating climate resilience into PCP also necessitates a holistic approach to support delivery. This includes expanding telehealth and remote monitoring technologies to maintain continuity of care during environmental disruptions. The innovative use of geomapping technology during the COVID-19 pandemic, which connected care managers with people living independently, serves as a model that can be adapted for climate resilience.

2. Developing Climate-Resilient Housing and Infrastructure

Creating climate-resilient housing and infrastructure for people with I/DD is a critical priority. Scott Karolidis, Director of Government Relations at YAI, proposed an ambitious pilot program called the “YAI Home of the Future” to highlight best practices in sustainable and accessible living. This initiative involves retrofitting existing residential facilities with advanced energy efficiency measures, renewable energy systems, and climate adaptation features such as green spaces and water conservation technologies. These homes would also serve as training hubs for DSPs in sustainable caregiving practices, bridging the gap between environmental sustainability and quality care delivery.

The symposium explored innovative housing solutions that not only serve people with I/DD but also support the caregiving workforce. A well-trained, locally-based caregiving workforce represents a critical resource during environmental crises, providing immediate support and facilitating community-based responses. As Dr. Stratigos recalled:

“Years ago, when I worked in a YAI residence, I lived in the same neighborhood where the house was. So even if anything went wrong, I could still walk over there. And that’s resiliency–having your workforce right on site, very close.”

To address the challenges ahead, we must adopt a comprehensive approach that recognizes the interconnectedness of climate resilience, disability rights, and social equity. This involves rethinking urban planning with ideas like the “15-minute city,” which envisions neighborhoods where all essential amenities and services are within a 15-minute walk or bike ride. Such models not only reduce transportation-related emissions but also improve community integration and accessibility for people with I/DD.

3. Reframing Care Work as Climate Action

Reconceptualizing care work as climate action presents an opportunity to transform workforce challenges in the disability services sector while advancing broader climate resilience goals. Gabrielle Sedor, Chief Operations Officer at ANCOR, introduced the concept of “Care Jobs as Green Jobs,” offering a promising framework for reimagining the role of DSPs as frontline agents of community resilience. By positioning care work within the broader context of climate action, this approach may attract a more diverse and motivated workforce, addressing longstanding staffing shortages in the disability services sector. It also offers opportunities for professional development and career advancement, potentially improving job satisfaction and retention rates.

However, realizing this vision requires overcoming significant policy and funding hurdles. The failure of the Build Back Better Act and the languishing $115 billion caregiving funding proposal highlight the persistent challenges in securing robust federal support for disability services and climate resilience initiatives. As Ravi Dahiya pointed out:

“Unless actions are taken by the federal government and in essence by society to really put some money, language, and policy around it, we will always be struggling to make the case that DSP roles are good jobs.”

This concern underscores the need for sustained advocacy and policy engagement to elevate the status of care work and integrate it into broader climate resilience strategies.

4. Addressing Mental Health and Trauma in Climate Response

Panelists also highlighted the often-overlooked mental health impacts of climate change on people with I/DD, emphasizing the need for a holistic approach to psychological support and trauma-informed care. Dr. Stratigos noted the increased rates of post-traumatic stress disorder, depression, anxiety, and substance abuse following climate-related disasters. She stressed the importance of addressing both acute trauma from single events and chronic trauma from ongoing environmental stressors.

Dr. Stratigos advocated for developing trauma-informed care approaches tailored to people with I/DD and their caregivers. This includes incorporating mental health considerations into disaster response and recovery plans and providing ongoing support to address the long-term psychological impacts of climate change. The symposium recognized the crucial role of mental health in climate resilience for the I/DD community, given the existing challenges many face in accessing appropriate mental health services and the potential for climate-related stressors to exacerbate pre-existing conditions.

5. Fostering Community-Based Resilience and Mutual Aid Networks

Grassroots initiatives and mutual aid networks play a vital role in building community resilience for people with I/DD. Gabrielle Sedor shared a compelling example from a podcast about a cross-disability community in Oakland, California, which developed comprehensive mutual aid plans for disasters. This model, operating on the premise that traditional infrastructure may fail during crises, involves community members collaborating to identify and leverage local resources, such as generators, accessible transportation, and safe spaces.

The symposium proposed strategies for fostering similar community-based resilience initiatives, including supporting disability-led community preparedness initiatives, developing training programs on inclusive emergency response, funding local resource centers with essential supplies, and creating accessible communication networks. These networks should also support caregivers and DSPs, ensuring that everyone, including staff and residents, knows how to take care of each other if infrastructure fails.

6. Advancing Policy and Advocacy

Realizing these proposals requires significant policy changes and new governance frameworks at local, state, and federal levels. The symposium identified several key policy and advocacy priorities:

• Mandating disability-inclusive emergency plans at all levels of government
• Expanding Medicaid coverage for climate adaptation tools and services
• Creating grant programs to support climate resilience upgrades in I/DD residential facilities
• Building out workforce development programs for green caregiving jobs
• Incentivizing inclusive and sustainable housing development
• Increasing research funding on climate impacts specific to the I/DD community
• Advocating for the passage of Senate Bill 1332/House Bill 2941 to establish a standard occupational classification for DSPs
• Engaging with the Centers for Medicare and Medicaid Services (CMS) to explore flexibilities and accommodations related to climate resilience and green jobs in Medicaid-funded services

The symposium emphasized that addressing climate change and enhancing community resilience requires the active participation and leadership of people with disabilities. This involves grassroots advocacy, strategic partnerships, and engagement with policymakers. Building strong coalitions between disability rights organizations and environmental groups is crucial to advancing policy goals. Participants highlighted the importance of including people with I/DD and their supporters in public comment periods for climate vulnerability assessments and policy proposals to ensure their perspectives are represented. To create political pressure for change, the symposium discussed leveraging media attention, developing compelling case studies, and mobilizing the I/DD community and their allies.

As discussions about climate change and disability gain traction in policy circles, it is clear that the I/DD community is already acutely experiencing its impacts. From increased health risks during extreme weather events to disruptions in critical support services, the challenges are immediate and pressing. Recognizing that no climate solution is complete without disability inclusion, integrating the perspectives of people with I/DD into climate policy offers an opportunity to build more resilient, inclusive, and sustainable communities. The time for action is now, and insights from YAI’s Climate Change and Disability Policy Symposium provide a crucial roadmap for the work ahead.