As grassroots, cross-disability-focused, and disabilityled organizations, Centers for Independent Living (CILs) are often in the forefront of adapting and responding to emergencies in their respective communities. This included the COVID-19 pandemic. Although CILs have always worked closely with community partners, the COVID-19 pandemic, the resulting shutdown of nonessential services, and the stay-at-home restrictions changed routine collaboration among community and health service providers. CILs, with deep roots in the community, quickly identified new partners who could join them in supporting people with disabilities during the crisis. CILs added or significantly expanded programs and services to address the community’s needs, some of which were not previously provided. Those newly developed services included distribution of food and pandemic supplies, virtual peer services, increased information, and referral. They also included services to assist students with disabilities in schools, distribution of and training on how to use tablets and laptops to reduce isolation, and expanded efforts to transition individuals out of skilled nursing facilities, among others.

While the COVID-19 pandemic affected everyone, it significantly impacted people with disabilities, their family members, and caregivers. States often did not include people with disabilities in the planning and implementation of COVID-19 response or often reached out to disability organizations that may not have been disability-led, which created more ableist barriers and challenges. Further, the pandemic highlighted health disparities facing individuals with disabilities and further exposed the disparities of those with disabilities who were multi-marginalized due to race, gender, age, and economic status. Finally, those living in institutional settings such as skilled nursing facilities and group homes were especially at risk. In many cases, CILs were the only organizations to rise to the challenge, serving individuals with disabilities in need and partnering with other community organizations.

The onset of the pandemic was sudden and unpredictable, and CILs had to invent services to ensure people with disabilities were being heard. Recent history has taught us that it is essential that we prepare for future health emergencies even as we continue to respond to the public health emergency at hand. This toolkit was developed to help CILs to better prepare for and respond to public health emergencies now and in the future. The toolkit highlights lessons learned during the COVID-19 pandemic, strategies to help CILs become partners in future emergencies, and to provide practical tips and suggestions for every organization.

Introduction

Public health emergencies pose new challenges for providing services in the community. Such emergencies require that organizations forge partnerships with local and state health departments, other service providers, local businesses, and other non-traditional collaborators. CILs are primed to work alongside the disability community to advocate for full inclusion as community services adapt to new challenges. CILs are deeply connected to the disability culture as they are mandated to be disability-led and consumer-driven. CILs are positioned to be the best organizations to respond to the needs of people with disabilities during public health emergencies. While the majority of CILs have already been heavily involved in efforts around community planning for emergency response and individual disaster preparedness, they also have an understanding of the specific barriers that individuals with disabilities experience during emergencies. This expertise significantly helped CILs in their response to the COVID-19 pandemic.

CILs: Community-Based Subject Matter Experts

CILs are hyper-local subject matter experts supporting people with disabilities and are advocates for reducing systemic barriers. CILs are required to be led by people with disabilities who live in the communities they serve, and their staff and board members are familiar with the needs and challenges of their respective service areas. This expertise grows from the personal experience that many CIL staff have as people who live with disabilities every day, and is strengthened by the organizations’ consumer-led mandate as established in the Rehabilitation Act. CILs are also often the only cross-disability entity in their community, which adds another level of expertise to ensure people with all disabilities are being included and heard. Further, CILs frequently seek input from community members through strategic planning, needs assessments, and other methods. This ongoing feedback helps CILs understand the barriers facing people with disabilities and develop effective services to appropriately serve their constituents. CILs know what will and won’t work in their communities. Therefore, when CIL staff are present at the table with other providers, they aren’t only providing disability representation but also bringing the voices of their consumers, allowing them to anticipate and plan for a more inclusive and equitable response during disasters and public health emergencies. CILs should endeavor to be added to committees, advisory boards and other organizations, to help plan for emergency response. By acting as a voice for the disability community, CILs can better prepare public health departments and other partners to support disabled individuals during the next public health crisis.

During COVID-19, CILs saved lives, whether it was through individual or systems advocacy, responding with new and innovative programs and approaches of serving their community, or their peer philosophy. Advocacy efforts resulted in improved access to vaccines. Using CARES Act funds to provide personal assistance services, assistive technology, or personal protective equipment.

CILs help emergency response partners to provide services that are accessible and equitable. Not only are CILs, by the nature of their mission and structure, leaders in their communities, but they also provide an immediate resource for consumers when other community-based, state, or federal systems are strained or fail to understand the needs of people with disabilities. People with disabilities, their families, and support providers understand the benefits of their local CIL as they are often the first called in emergencies and support.

Advocacy: A CIL Core Service

One of the core services of a CIL is individual and systems advocacy. CILs have been working in the community to advocate for greater inclusion and access since their inception. However, individual and systems advocacy is much more important during public health emergencies.

Centers demonstrated the importance of advocacy during the COVID-19 pandemic. For example, during the rush to get vaccines to those most in need, people with disabilities were not prioritized as an at-risk population. CILs from around the country led efforts to ensure their state understood the risk of infection, hospitalization, and death due to COVID-19 for people with disabilities. In many states, the advocacy of CILs was the reason why people with disabilities were later added as a priority group. Another example was a general lack of accessibility. Whether it was a press conference, COVID-19 education materials, resources, testing, or vaccine sites, CILs led the way as accessibility and compliance with disability rights laws were often not prioritized. (Musumeci and Chidambaram, Marcy 1, 2021).

In addition to the barriers already faced, the pandemic highlighted other issues for people with disabilities. Below are some examples of the barriers during COVID-19:

1. Press conferences did not include captioning, American Sign Language interpretation, or visual descriptions.

2. Websites and smartphone applications used to register for testing or vaccine appointments were not always compliant or accessible.

3. Materials used for education and resources was not in plain language to assist those with intellectual, developmental, and other disabilities.

4. Program modifications to ensure equitable access were not provided—for example, in-home vaccinations, drive-up vaccinations, or other accommodations that may be required.

5. Vaccine and testing sites were frequently not accessible, and staff and volunteers working the sites were unfamiliar with accommodating people with disabilities.

6. Education and information did not represent people with disabilities, leaving them concerned about whether COVID-19 or the vaccine would impact their current disabilities.

7. Bans on masks or other anti-masking education did not include or protect the needs of people with disabilities at higher risk of infection, hospitalization, or death.

8. During the pandemic there was a lack of personal protective equipment, including masks, hand sanitizer, and other items available to consumers, caregivers, and family members.

9. Many people with disabilities faced a lack of access to technology and options for accessing virtual services, including telehealth, programs, and education.

10. Many people living in institutional settings did not have access to home and community-based services and other supports that would have allowed for transition to the community.

CILs also provided individual advocacy in challenging situations. For example, some consumers found it difficult to maintain safety and independence due to a lack of personal assistance services and individuals willing and able to come to their homes to provide support, leaving them at risk for institutionalization. CILs worked on behalf of these consumers to educate local and state officials about the challenges being experienced and the risk of institutionalization. In some cases Centers were able to pay for personal assistance services for those most at risk with one-time funding extended to Centers due to the pandemic.

While CILs provided outstanding leadership during COVID-19, many opportunities remain for Centers to strengthen programs, services, and advocacy. CILs should continue building and establishing partnerships with local and state health departments. Additionally, Centers should focus on building solid connections with emergency preparedness organizations. This includes state’ emergency response entities such as Government agencies, including their emergency management, health departments, social service organizations, and American Red Cross, Federal Emergency Management Agency (FEMA), and Partnership for Inclusive Disaster Strategies, and advocacy organizations to name a few.

Another important role of CILs is to ensure that people with disabilities are prepared for disasters and public health emergencies. Such efforts could include ensuring consumers have an emergency plan, providing preparedness training, and ensuring they have the equipment and supplies needed to survive, with the understanding that some equipment and supplies will need to be modified to be accessible for the person.

Sources

• COVID-19 Vaccine Access for People with Disabilities Mary Beth Musumeci and Priya Chidambaram March 1, 2021

Disability rights are human rights, and they aren’t optional.

Disability rights laws are not new and have been in place for decades. However, many people with disabilities encounter challenges in attempting to receive vaccines and other healthcare or emergency services due to disability rights laws not being respected or followed. As advocates, Centers should understand the legal obligations of providers and the rights of consumers. Clarity about these obligations will help CILs support consumers in gaining access to vaccines and health care in general. Understanding the laws will also help CILs support emergency and healthcare providers in meeting their obligations to people with disabilities.

CILs and consumers must understand that civil rights are never suspended during disasters or public health emergencies. This means that agencies and organizations cannot tell people with disabilities they don’t get access to programs and services during these times. Federal disability rights laws always apply and supersede state laws. CILs can provide leadership to agencies and organizations, helping them establish plans to meet their legal requirements within disability rights laws.

Disability rights law may seem complex. However, staff can educate themselves and share the information with consumers, co-workers, and state and local agencies. CIL staff might not always know the answer to the questions people ask about the law. However, Center representatives can know where to look for answers and provide further resources. If CIL staff are asked a question and don’t know the answer, they should always point the individual to the regional ADA Center or the local Protection and Advocacy (P&A) agency in the state to ask their question.

This chapter highlights important disability-rights laws and provides basic information about the statutes that protect people with disabilities during emergency disasters and public health emergencies.

The difference between legal advice and legal information and education:

Legal information and education describe the law and how it may apply to consumers, partners, and agencies. Legal information and education can be provided by anyone who is knowledgeable about the topic. All CILs are encouraged to be knowledgeable regarding disability rights laws.

Legal advice, on the other hand, applies the law to your specific situation. Lawyers representing clients provide opinions on specific legal problems, considering the specific situation of their client. Only lawyers should be providing legal advice.

Requirements Under the ADA

Under the ADA, state and local governments and public accommodations cannot discriminate against people with disabilities. Discriminating against people with disabilities means excluding them from participation in programs and services. Places that are covered under the ADA are required to take certain actions to provide access to people with disabilities. These are known as obligations.

Examples of what the ADA requires are as follows:

Having accessible buildings and programs. Note, the ADA does not apply to housing; that would be the Fair Housing Act.

• Providing equally effective communication to people with hearing, visual, and speech disabilities: such as sign language interpreters, Video Relay Interpreting (VRI), electronic material that is screen reader accessible, large print, or other accessible formats, or taking the time to understand a person with a speech disability may be legally required.
• Making reasonable modifications to policies and practices, such as assisting someone who can’t write due to a disability in filling out a form.
• Accommodations are free to the individual. It is illegal to charge people with disabilities for access accommodations.
• Providing websites that are accessible to people with disabilities. For example, a clinic should ensure that people who use screen readers can use its website when they need to go online to get information or schedule an appointment.

If a consumer feels their rights under Titles II or III of the ADA have been violated, they can file a complaint with the United States Department of Justice. This must be filed before 180 days have passed since the discrimination. The consumer can sue an entity they think violated the ADA without filing a complaint.

To file an ADA complaint, contact: U.S. Department of Justice Civil Rights Division 950 Pennsylvania Avenue, N.W. Disability Rights Section Washington, D.C. 20530 Phones: 800-514-0301 (voice) 1-833-610-1264 (TTY) Online form (2022): https://civilrights.justice.gov/report/

Title IV of the ADA addresses telephone and television access for people with hearing and speech disabilities. It requires telephone companies to set up telecommunications relay services (TRS) 24 hours a day, 7 days a week. TRS enables callers with hearing and speech disabilities who use TTYs and callers who use voice telephones to communicate with each other through a communications assistant. Title IV also requires closed captioning of public service announcements.

For more information about TRS, contact the Federal Communications Commission (FCC) at: Federal Communications Commission 445 12th Street, S.W. Washington, D.C. 20554 Phones: (888) 225-5322 (Voice) (888) 835-5322 (TTY) www.fcc.gov/general/disability-rights-office

Obligations to People with Disabilities Under the ADA

Under Title II of the Americans with Disabilities Act (ADA), state and local governments are prohibited from discriminating against people with disabilities. This applies to state and territory agencies, counties, cities, and towns, including health departments within these covered entities. Public hospitals and clinics run by the state or local government also have obligations under Title II.

Under Title III of the ADA, public entities have obligations to people with disabilities. Public entities are places people go to, such as pharmacies, doctor’s offices, private clinics, and non-religious private hospitals.

In both Titles II and III of the ADA, local and state governments and public entities must have accessible facilities, programs, and information. More information about the Americans with Disabilities Act can be found at www.ada.gov.

Rehabilitation Act of 1973

Section 504 of the Rehabilitation Act (Rehab Act) says that government agencies, businesses, nonprofits, or any other organizations or programs that receive money from the federal government must not discriminate against people with disabilities. That means if an agency or business accepts funding from the federal government, including federal grants and contracts, they must not discriminate against people with disabilities. This also applies when federal money is passed on to other parties. Many local and state agencies receive federal funding in some capacity and have responsibilities under Title II of the ADA and Section 504 of the Rehabilitation Act of 1973.

While somewhat Similar to the ADA, the Rehabilitation Act reaches further by stating that persons with disabilities may not be excluded from receiving federally funded services on the basis of disability. Like the ADA, the Rehab Act includes: providing programs and services that are accessible to, and usable by, people with disabilities; providing accommodations such as sign language interpreters and materials in an accessible alternate format; and making modifications to policies and practices where necessary to avoid discrimination including allowing service animals to accompany people with disabilities. Obligations under Section 504 of the Rehabilitation Act are essentially the same as obligations under Title II of the ADA. Websites must also be made accessible to people with disabilities.

Affordable Care Act

While the Affordable Care Act (ACA) includes obligations to people with disabilities, virtually all of these obligations exist already under the ADA and the Rehabilitation Act. The ACA says that healthcare centers and services, like hospitals and clinics, cannot discriminate against people with disabilities. Also, healthcare programs receiving money from the federal government cannot discriminate against people with disabilities. For example, a vaccine program funded by the federal government cannot discriminate against people because of their disability.

Conclusion

Federal disability-rights law prohibits discrimination by government entities, including states, territories, counties, cities, and towns; places of public accommodations, including pharmacies, doctor’s offices, and private non-religious hospitals based on disability. Requirements prohibiting discrimination under these laws apply to more than exclusionary practices. They require the government and businesses to accommodate people with disabilities, even in a public health emergency or disaster. In short, all people with disabilities should have access to the same services, programs, information, and facilities as people without disabilities.

Disability rights are never suspended during public health or other emergencies. CIL staff and consumers must understand the basics of disability rights laws and advocate for them to be respected, implemented, and enforced. Being effective advocates to ensure entities comply with federal disability rights laws can mean the difference between life and death in public health emergencies and disasters as history has proven.

People with disabilities and emergency officials need CILs more than ever during emergencies. While some entities may be able to temporarily shut down or reduce operations, CILs will often need to increase efforts while safeguarding the health and well-being of their employees and consumers. CILs may be called upon to do more in emergencies, possibly even with staff and supply shortages. They may also experience a higher demand for Information and Referral (I&R), Peer Support, Advocacy, Transition Support, and other services. CILs may be called upon to create practical solutions to ensure the emergency response includes people with disabilities.

Examples of services could include the following:

• Making sure the needs of the disability community are being met.
• Ensuring information and education materials are accessible.
• Providing individual and systems advocacy to ensure people with disabilities are included in the response.
• Educating state partners about program modifications and considerations for people with disabilities.
• Sending accessible communication to consumers.
• Ensuring people with disabilities have the supplies needed for survival.
• Increasing efforts of socialization if isolation is expected.

This chapter provides information that will prepare CILs to support and protect the health and safety of its employees and ensure operations continue by providing regular programs and support while adjusting or creating programs to meet the needs of the disability community.

Keep Doing What You’re Doing

CILs are expected to keep operations open during public health emergencies. The good news is that CILs have learned how to operate and provide services during a public health emergency in support of the COVID-19 pandemic as they had to make critical decisions during that time. Additionally, CILs adjusted or created additional services to meet the needs of the disability community within their area. Therefore, some promising examples exist of how CILs did this work during COVID-19.

Examples of decisions CILs made during COVID-19 included:

• Identifying sources of information to trust, inclusive of disability-specific information
• Whether or not to keep the physical office open
• When to re-open the physical office
• Whether or not to close the office to visitors
• When to re-open the office to visitors
• Whether personal protective equipment, (PPE), such as masks or gloves would be required in the office.
• If PPE is required, what type should be used
• If masking is required, how to communicate with deaf or hard-of-hearing employees and other consumers.
• How to locate and acquire transparent masks that prevent the spread of airborne viruses like COVID-19.
• How to provide services and conduct accessible virtual meetings.
• Whether or not to hold or support vaccine clinics.
• Informing other entities when their services don’t include people with disabilities.
• What information should CILs share with consumers about the public health emergency and how to:
  • Share information about a public health emergency,
  • Make information accessible to consumers who are Deaf or hard of hearing, deafblind, blind or have low vision, or do not read print; and
• How to help keep consumers safe while assisting with testing and vaccine appointments.

Each public health emergency is unique and requires different responses. However, CILs can learn from past experiences, while also recalling that people with disabilities can experience multiple public emergencies simultaneously. During the COVID-19 pandemic, CILs simultaneously led efforts to support consumers during fires, flooding, storms, and earthquakes. For example, when emergency shelters opened due to evacuations from a storm, CILs worked with emergency officials to help with making shelters accessible, safe, and healthy while maintaining social distancing and the use of PPE.

A CIL’s response to public health emergencies will depend on the following:

• The type of public health emergency
• How long the emergency lasts
• Training and understanding from CIL employees
• How widespread is the emergency
• The amount and type of disruption it causes
• Availability of funding that would allow for expanding or enhancing existing programs

Not all public health emergencies have vaccines immediately available.

Not all public health emergencies are a result of an infectious disease. Vaccines may or may not be available for an infectious disease outbreak. CILs would not need to assist with or set up vaccine clinics if vaccines are not available or not needed. In cases where vaccines are being created, CILs are critical to ensuring and working with state officials by providing that the launch is accessible and inclusive to people with disabilities.

If vaccines are not needed or required for the emergency, CILs would focus on other ways of supporting the disability community by protecting their health and well-being, and providing advocacy to ensure access, equity, and the needs of the disability community are respected.

Good Practices for Maintaining Operations During a Public Health Emergency

The best way for CILs to continue providing programs and services to consumers and the community is to plan how they will do this before a public health emergency happens. Plans should be flexible and easy to adapt to the specific crisis. There will always be impacts caused by a public health emergency that planners did not think about ahead of time. One of the essential things CILs can do in an emergency is quickly solve problems by making additional changes as needed while not losing focus on accessibility, the needs of the employees and consumers, and the Independent Living Philosophy.

Examples of good practices for planning are as follows:

• Regularly review what the CIL has learned in other public health emergencies, disasters, and disease outbreaks. This will require ongoing modifications to your policies and emergency plans.
• Decide what practices worked and what didn’t. Determine how the CIL could apply these lessons to public health emergencies happening now or that might occur in the future.
• Test or practice your plans annually to ensure you are prepared and current technology or equipment is available.
• Train CIL employees on the emergency plan to ensure they know what to do in the event of a situation.
• Develop a written plan to help your CIL continue providing services during the public health emergency. This plan is called a continuity of operations plan or COOP, which is further described below.
• Stay up-to-date on how best to meet consumer needs during a public health emergency.
  • Receive regular up-to-date information from reliable sources, such as a county or state public health department and the Centers for Disease Control and Prevention (CDC).
  • Participate in specific disability training on emergency planning from Independent Living Research and Utilization (ILRU), Partnership for Inclusive Disasters, and another national disability-rights-focused providers.

Below are practices that will often be critical to implement to prevent the spread of diseases.

1. Social distancing: Not being too close to other people is critical in preventing the spread of COVID-19 because COVID-19 primarily spreads through the air. Social distancing might not be as crucial with other diseases. Adapt the plan as new information becomes available or the community needs change during a public health emergency.

2. Types of masks: At the beginning of the COVID-19 pandemic, bandanas were considered adequate protection against the spread of COVID-19. Later it was learned that masks are needed to have the best protection. N95 or KN95 masks offer the best protection.

3. Handwashing/Surface Sanitation: Constant handwashing prevents the spread of disease along with sanitizing surfaces. During COVID-19, some CILs had to get creative with making disinfectants with alcohol or hydrogen peroxide and making bulk orders for hand soap to ensure consumers and CIL employees had appropriate supplies.

What is a Continuity of Operations Plan (COOP)?

A COOP is a written plan that a CIL creates to help keep the organization operating and serving consumers during public health emergencies.

Pre-event planning is the key for a CIL to continue operating and providing services and activities in a public health emergency. Think about the rapid onset of the COVID-19 pandemic and how helpful it would have been to have a written plan to follow as offices were closed, employees transitioned to remote work, and service delivery methods were drastically changed. A COOP can help a CIL to maintain operations and keep providing services and activities during this time, even if the way CILs provide them must change.

Examples of essential considerations for the CILs COOP:

• Hour-of-operation adjustments. At the beginning of the COVID-19 pandemic, some CILs operated a 24-hour hotline to ensure people with disabilities had appropriate support
• Requirements for PPE and other office modifications such as air purifiers, temperature thermometers, plexiglass dividers, appointment-only in-person services, hybrid employee scheduling, etc
• The location or method of community programs and services. For example, programs delivered by telephone, virtual platforms such as Zoom, or meeting outdoors
• Ensuring accessibility and program modifications for services
• Ensuring continuous payroll, accounting, and financial processes
• Mail services
• Virtual employee meetings to provide support and supervision
• Information Technology (IT) and support needs
• Reporting requirements
• Other business-related tasks

Critical Areas of Creating a COOP

Human Resources

• How will employees track their time virtually?
• How will they be supervised?
• What policies are needed to ensure the CILs’ human resource policies and procedures are captioned virtually?
• How will you keep the CIL employees safe?
• Create a succession plan that identifies who will take on responsibilities if critical employees cannot make it into the physical work location.
• Make sure that more than one person has access to passwords. Consider implementing password management software. Make sure key staff are informed about the chosen people.
• How are employee accommodations being met

Remote Work

Create a work-from-home policy with agreements that include the following:

• Accommodations staff might need to work remotely.
• How work equipment, including computers and other devices, will be transported to staff and inventoried.
• Standards for a good work environment, including adequate seating and lighting.
• Training in keeping consumer information private and protecting Personal Identifiable Information (PII).
• Training in keeping consumer information private and following the Health Insurance Portability and Accountability Act (HIPAA) when it applies.
• Any necessary training in submitting timesheets, reporting, maintaining consumer records, I&R, and other records, and required administrative tasks.
• How employees will communicate with consumers, community members, and work locations.
• How employees will access internet and telephone services.

Return to office plan

A return to the office policy will help the CIL plan and prepare staff for reopening. Examples of information to include in the return to office plan:

• Securing PPE for employees and visitors as the physical office re-opens.
• Social distancing practices and how the information will be communicated with employees and staff while ensuring accessibility.
• Will the CIL enforce temperature testing if applicable? If so, is the thermometer accessible?
• Hours of operations and employee scheduling. Will there continue to be remote options?
• Who will maintain the inventory of PPE and sanitation supplies?
• What is the CIL’s policy if an employee has COVID-19? Will the policy include contact tracing, requiring employees to work remotely or use paid time off, etc.?
• How will the CIL ensure accessibility and accommodations to its return to office plan?
• How will CIL employees get to work if they require public transportation?
• How will consumers and partners know the policies to keep them and employees safe?
• Will employees be required to wear PPE at the office and community meetings? If so, is the CIL required to supply it?

NOTE: Given that CILs are disability-led and serve people with significant disabilities, it is strongly recommended that mask mandates are required in the office and community during active public health emergencies if applicable.

Board Engagement

• How are you providing information to the CIL’s board?
• CILs will be required to continue having board meetings. How are meetings accessible and virtual?
• Does the CIL’s board of directors have access to technology to participate in board meetings?
• How will the CIL’s Executive Director engage the board during an emergency?
• Does the CIL’s bylaws allow virtual meetings and voting?

Finances

• Do the CIL’s fiscal policies provide appropriate alternatives for maintaining internal controls and separation of duties when working remotely to process invoices, checks, and payments?
• How will you do payroll and distribute checks to employees?
• How will you function if your financial processes are not electronic/digital?
• How will you collect documentation for approvals for financials?
• Authorize another decision-maker to sign checks and other documents. Ensure that selected employees are fully aware of the financial policies.

Information & Technology

• Do employees have laptops that they can take home?
• Do employees have secure access to internal documents from home?
• How will employees answer and return phone calls from home?
• How will employees communicate with one another remotely?
• How will employees engage in community activities such as meetings?

Independent Living Responsibilities

All core services need to continue during emergencies. If the CILs have other sources of revenue, such as grants and contracts, it will be essential to communicate with those funders. Funders will expect programs to continue though they will likely understand that service delivery methods will change. For example, during COVID-19, the Administration on Community Living (ACL) communicated regularly with grantees to support ongoing programs. ACL also helped connect CILs with partners, education, and tools to address barriers the pandemic caused for people with disabilities. This response was similar to that of other funders. Therefore, it is essential to include methods of providing core services in the CILs COOP.

The core services required of CILs include individual and systems advocacy, peer mentoring, independent living skills training, information and referral, transition and diversion from institutional settings, and youth transition from school into the community. All other requirements for independent living under Title VII, chapter 1 of the Rehabilitation Act of 1973, as amended, must also continue.

A COOPs should include details explaining how a CIL will continue to provide these and other services:

Program Delivery

• Develop a policy to ensure the CIL uses appropriate PPE when interacting with consumers. There is a significant chance that the CIL staff and consumers will be at higher risk during a public health emergency.
• If a CIL staff member cannot work with people one-on-one due to their disability and being at increased risk, the CIL may want to provide temporary accommodation and reassign the employee to projects or all virtual duties.
• If the CIL has a small staff, prioritize situations caused or worsened by the public health emergency. Anything that severely and negatively impacts consumer health and safety should be a top priority. This should include transitioning consumers out of nursing facilities and other institutions.
• Choose who will decide if services should be provided differently and how this should be done.
• Not all consumers may benefit from virtual services. Determine how CIL support will be individualized and remain consumer controlled.
• Consider other methods of program delivery, including but not limited to:
  • Virtually on Zoom or another platform
  • By telephone
  • Individually rather than in groups
  • In smaller groups
  • At a consumer’s home
  • At a place other than the CIL if the CIL can’t be used because of a public health emergency.

Note: If CIL employees provide a service or activity in a place other than the office, ensure the facility is accessible and near public transportation.

Other emergencies to consider when developing a COOP:

• Create a plan for how the CIL will continue serving if:
  • Transportation is not available.
  • Stay-at-home mandates are ordered.
  • The office is damaged or destroyed.
  • It is not safe for people to travel due to road conditions.

Conclusion

CILs are often models for other entities on disability rights and accessible program delivery. Since people with disabilities are at increased risk and face significantly more barriers to services, CILs must not only plan for continued operations, but all aspects of the plan must include strategies to protect the health and safety of those most at risk, including employees and consumers while ensuring equity and accessibility.

CILs must build relationships with local and state public health officials, emergency management, and other stakeholders to create a disability-inclusive response to public health emergencies. The best time to connect with community partners is before an emergency happens or as soon as possible after the emergency occurs.

Building these types of strong relationships, specifically with public health departments and healthcare providers, before a public health emergency allows for an immediate, effective, and equitable response during and after an emergency. These relationships ensure that people with disabilities are not an afterthought in a response and will most likely save lives.

When partnerships are formed, collaboration is more likely to happen before, during, and after public health emergencies. Engaging and collaborating with public health, healthcare providers, community organizations, and coalitions can help ensure that disabled people are included in and have equal access to public health emergency-related programs and services. Overall, these efforts help strengthen the whole community’s response to public health issues and improve the community’s health.

In this chapter, CILs will learn about the importance of partnerships, examples of key agencies and organizations to build partnerships, and strategies to leverage the CIL to play an essential role for public health and emergency partners.

Key Partners in the Community

When considering engaging in efforts to create inclusive emergency response strategies in your communities, it is essential to understand the various organizations that will be significant partners. Such partners will include local, state, territorial, and federal governmental entities, nonprofit organizations, and community leaders with a mission to support the community during public health emergencies and disasters.

1. Public Health Departments: Building relationships and actively working with state and local health departments is a significant first step. State health departments serve multiple public health functions. Some often include other areas of focus such as licensure of health professionals, developing state policies, regulation, and air quality. Despite a wide range of structures, each state’s health department is often the primary public health authority and plays a crucial role in supporting the delivery of public health services. It is important to note that State Health Departments sometimes have medical-model practices. This means they strongly promote the use of medicine, surgical intervention or other treatments with the goal of fixing the disabled individual instead of modifying the environment and or recognizing disability as a natural part of the human condition. This is even more of a reason for CILs to become involved since we know the medical model to be damaging. Local health departments at the city and county levels provide leadership within their community. Local health departments secure life-saving medicines and resources, including shelter supplies, vaccinations, and first-aid equipment. They know how to quickly respond and deploy these resources during public health emergencies due to preparedness planning, training, and exercises. (Local Health Departments Impact our Lives Every Day). As a CIL collaborates with local public health departments, the organization will likely find opportunities to educate health departments about health disparities, disability rights, laws, disability bias awareness, accessibility accommodations, and disability community needs. CILs also ensure that local health departments have disability representation from actual people with disabilities.

2. Emergency Management: Another vital stakeholder to connect with is the CIL’s county, territorial, and state emergency management agencies. While the name of these entities may vary, they are typically responsible for preparing for emergencies and coordinating the activation and use of resources controlled by local, territorial, or state governments. While emergency management is often focused on disaster prevention and response, they remain an essential partner during public health emergencies. Similar to health departments, a CIL can provide education and advocacy on behalf of individuals with disabilities in the community, helping to ensure inclusive planning and response.

3. Healthcare Providers, Community-Based Organizations, and Individual Leaders: In addition to public health and emergency management, CILs need to develop and strengthen relationships with healthcare providers and community-based organizations. These organizations provide vital programs and services, such as vaccine clinics and community resource centers, to people with and without disabilities in public health emergencies. CILs should reach out to their typical networks and beyond. As with public health and emergency management, there will likely be an opportunity to educate organizations and groups about health disparities, barriers, disability rights, accommodations, disability bias awareness, and disability community needs. Make an effort to connect with local community leaders who will be able to support the CIL in its efforts and steer it in the proper direction.

4. Additional stakeholders may include:

   1. Disability-led organizations such as the Federation for the Blind, deaf associations, and self-advocacy organizations.

   2. State agencies that serve people with disabilities as CILs can be vital to them during emergencies.

   3. Leaders with disabilities who have expertise in public health emergencies.

   4. Community-based organizations that serve people with disabilities or older adults.

   5. Faith-based organizations

   6. Nonprofits that may serve disabled people during public health emergencies

   7. Advocacy organizations that serve marginalized communities, since disability intersects with all populations and multi-marginalized communities experience increased health disparities and barriers

   8. Healthcare and pharmacy providers, including public clinics and vaccine providers

   9. The state’s Independent living Network

5. National Resources: In addition to community partners, there are resources and partners nationally as well, including:

   1. American Association on Health and Disability

   2. American Red Cross

   3. Association for Programs for Rural Independent Living

   4. Centers for Disease Control and Prevention’s Division of Human Development and Disability

   5. FEMA’s Office of Disability Integration and Coordination

   6. National Council for Independent Living

   7. The Partnership for Inclusive Disaster Strategies

Building Relationships Before, During, and After Public Health Emergencies

By establishing relationships with key stakeholders in advance, CILs can create a network that can be mobilized quickly during public health emergencies. CILs should work to develop and maintain working relationships with individuals within local and territorial or state health departments to facilitate equitable responses for people with disabilities in public health emergencies. CILs should also consider joining or establishing coalitions of stakeholders.

Strategies for Building Relationships Before Public Health Emergencies

Some strategies for building relationships before public health emergencies include:

IDENTIFYING KEY STAKEHOLDERS. Identify community members, organizations, and agencies with a vested interest in the health and well-being of the whole community. These could include local, territorial, state, and federal governmental entities, such as local health departments and emergency management agencies; nonprofit organizations focused on preparedness and responding to emergencies; organizations serving people with disabilities and the broader community; and healthcare providers. Prioritize building relationships with them.

BUILDING TRUST AND ESTABLISHING CREDIBILITY. Demonstrate the CIL’s expertise in disability and commitment to the community by following through and being transparent about work and plans. CILs can be extremely important in ensuring partners are serving people with disabilities, complying with disability rights legislation, and providing disability representation.

FOSTERING COLLABORATION AND PARTNERSHIPS. Work with other organizations and agencies to share resources and expertise and coordinate efforts during public health emergencies that include disability. Invite stakeholders to CIL events and meetings and ask to be invited to theirs. CILs will most likely be the only cross-disability and disability-led organization within the partnership.

PREPARING AND PRACTICING AHEAD OF AN EMERGENCY. Inform stakeholders that the CIL is willing to observe, give feedback, or participate in drills, exercises, and tabletop exercises to test and refine emergency response plans. This could help the partner ensure their practices include people with disabilities.

ESTABLISHING ACCESSIBLE METHODS OF COMMUNICATION. Ensure all communications and meeting materials sent to stakeholders meet everyone’s access needs. This means CIL employees may need to make materials accessible in multiple formats, such as screen reader accessible, in plain language or large font, and languages other than English. Additionally, be inclusive of the Deaf community by including plans captioning, American Sign Language, and other forms of sign language (i.e., deaf-blind tactile sign language, non-English sign language, etc.).

Strategies for Continuing Relationships During Public Health Emergencies

Stakeholders must work together during public health emergencies. CILs should take time to communicate and collaborate with stakeholders while continuously promoting transparency. Ensuring information about public health issues is widely available and easily accessible to community members can help build trust and encourage participation in public health efforts.

Below are actions CILs can take to continue building relationships and meet the needs of the community:

COMMUNICATE REGULARLY. Whether virtual meetings, email conversations, or group texts, CILs should collaborate with stakeholders to set up regular discussions.

SOLVE PROBLEMS TOGETHER. Share problems that people with disabilities may experience and solve problems together. By doing this, partners will better understand the barriers people with disabilities experience while receiving solutions from CILs’ experts representing people with disabilities.

COLLECT AND SHARE INFORMATION. Share ongoing disability-related data and resources regarding establishing disability equity within emergencies.

CREATE ACCESSIBLE MATERIALS. Partner with stakeholders to create and disseminate accessible educational materials for the public. Materials should be made in multiple accessible formats and languages.

CROSS TRAIN. Training each other is essential to sustainability. CILs can provide specific-disability related training such as disability rights legislation, effective communication, social determinants of health for people with disabilities, common barriers, disability culture, etc.

ESTABLISHING A MEMORANDUM OF UNDERSTANDING. CILs may have much smaller budgets than other organizations. However, CILs are required to conduct resource development. Engage in conversations about funding opportunities to ensure the CIL has the funding to serve.

ACCOUNTABILITY. Assist with holding the partners accountable, as they most likely have responsibilities under the disability rights laws. While doing this, you are not only assisting them with creating equitable and inclusive programs and services but also with compliance and protection from disability rights litigation and complaints.

Regular communication creates an opportunity to discuss any:

• Unmet needs of people with disabilities.
• Barriers people with disabilities are experiencing.
• Solutions for meeting the unmet needs of people with disabilities.
• Community resources that benefit the disability community.
• Disability rights concerns.
• Effective communication, accessibility, and equity of services.
• How CILs can support the community in emergency response (e.g., hosting vaccine clinics free from barriers for people with disabilities in partnership with local public health departments and healthcare providers, diversion and transition services to keep people out of institutional settings, home deliveries, engaging in disability outreach, etc.).

Strategies for Continuing Relationships After Public Health Emergencies

Even after a public health emergency ends, stakeholders must maintain regular contact. CILs should make sure to:

CONTINUE TO COMMUNICATE REGULARLY. Regularly communicate with stakeholders to stay informed about their needs and concerns and to keep them informed about the CIL’s work and plans after the public health emergency response ends. Consider establishing monthly meetings or creating a disability-specific coalition where the CIL can bring all the partners together.

CONTINUE THE COLLABORATION. Continue to invite stakeholders to CIL meetings and events and request to attend stakeholder meetings and events.

PROVIDE RESOURCES AND SOLUTIONS TO STAKEHOLDERS. Continue approaching stakeholders with help and solutions and encouraging others to share them.

Build a Diverse and Intersectional Coalition

Along with establishing relationships with individual stakeholders, establishing new or joining existing coalitions of stakeholders can be vital to ensuring equity for people with disabilities during and after disasters.

Some strategies for establishing diverse and equitable stakeholder coalitions:

• Identify critical goals. Clearly define the purpose and objectives of the coalition, and ensure they align with the community’s needs and concerns.
• Intersection of disability. People with disabilities intersect within all communities. Make sure your strategies include diverse community organizations.
• Foster collaboration and partnerships. Work with other organizations and agencies to share resources and expertise and coordinate efforts to address unmet needs and civil rights violations during public health emergencies. This may include signing memorandums of understanding (MOUs) or other formal agreements to establish partnerships.
• Practice inclusivity and respect. Ensure all coalition members are welcome and valued, and their perspectives and experiences are considered when making decisions.
• Ensure the group meets all access needs. This may include translating spoken and written material into languages other than English, such as sign languages or Spanish, and making accommodations for people with disabilities.
• Disability rights and inclusion are not optional. Help the partnership know that they must include people with disabilities in planning and that their practices must be inclusive.
• Use data and evidence to inform the coalition’s decisions. Collect and analyze data to better understand the needs of groups within the community. Use this information to develop strategies that address the community’s needs. CILs and coalitions they participate in can collect their data by conducting surveys and focus groups. They can also analyze existing data.

Sources

• Local Health Departments Impact our Lives Every Day. National Association of County and City Health Officials, 2017. https://www.naccho.org/uploads/downloadable-resources/transition-appendix-A-Infographic.pdf

Introduction

During the COVID-19 pandemic, people with disabilities were at higher risk of contracting COVID-19, having a severe illness, and even dying (CDC). Despite this, the disability community faced significant barriers to maintaining their health including the lack of access to vaccines, treatment, and information. Public health agencies and their partners can use lessons learned during the COVID-19 pandemic to shape future health and disaster response plans.

Both vaccine access and vaccine hesitancy were barriers to people with disabilities staying healthy during the COVID-19 pandemic. Without education focusing on vaccine access for public health agencies and vaccine hesitancy among consumers, these barriers will likely continue in a future public health emergency.

Since CILs are run by, and for, people with disabilities, they have the trust of the disability community as well as expertise in addressing access barriers. CILs are a natural fit for supporting vaccination efforts and responding to vaccine hesitancy.

During COVID-19, the inequitable response included:

• Lack of information that included people with disabilities,
• Lack of sign language interpretation during televised notifications and announcements about the public health emergency,
• Lack of sign language interpreters or Video Remote Interpreting (VRI) at vaccine sites,
• Lack of access to electronic information and vaccine registration websites for blind and low-vision individuals,
• Inaccessible websites and language,
• Physically inaccessible vaccine sites, and
• Vaccine sites located in overstimulating environments.

Although some barriers experienced during the pandemic are specific to COVID-19, many could occur in future public health emergencies. This chapter uses the COVID-19 pandemic and disability vaccination efforts as a template for addressing barriers to the disability community and disability-related hesitancy toward public health initiatives.

The needs of people with disabilities tend not to be addressed in most public health emergency plans, and people with disabilities are often not consulted when communities are developing them. CILs are uniquely positioned to inform partner agencies about disability perspectives and help shape public health and disaster policy.

This chapter will address the following:

• Sources of vaccine hesitancy and how to counter them.
• Lack of access to vaccines and lack of accessible, accurate information about vaccines.
• The role that CILs can play in supporting vaccination efforts.
• How CILs and the disability community can incorporate lessons learned during the COVID-19 pandemic into the response to future public health emergency planning.

Vaccine Hesitancy in the Disability Community

Just like people without disabilities, people with disabilities experience considerable vaccine hesitancy for many of the same reasons. However, the disability community has additional reasons for COVID-19 vaccine hesitancy It is critical for CILs to develop and distribute accessible disability-specific information and to provide education and solutions. Some of these reasons for vaccine hesitancy existed before the COVID-19 pandemic. This is not an exhaustive list, and regional concerns may be unique to a CIL service area. Recommendations on responding to common hesitancies can be found in the resource section of this manual.

Reasons for Vaccine Hesitancy

There are many reasons someone with or without a disability may experience vaccine hesitancy, such as:

• not trusting the safety and/or effectiveness of the vaccine,
• disability not being mentioned or represented within the information,
• concerns about possible long-term side effects of the vaccine, and
• misinformation.

Disabled people may also experience additional vaccine hesitancy because of:

• fear of worsening their disability or underlying medical conditions,
• lack of accessible information,
• fear of short and long-term side effects from the COVID-19 vaccine,
• previous medical trauma,
• mistrust of medical professionals,
• previous reactions to vaccines, and
• mistrust of the vaccine information because it does not include disability-specific and/or available information and is not accessible.

Responding to Disability Vaccine Hesitancy

CILs are critical to help address vaccine hesitancy and provide information about how COVID-19 vaccines and boosters are safe and effective and how they may be related to their disability. CILs can also emphasize the need to continue to engage in additional protective practices, such as social distancing, masking, and hand washing. It is important to remind consumers and the community that efforts to protect their health are not political but are lifesaving for people with disabilities. Remind consumers that these practices also help protect against diseases other than COVID-19, including influenza and the common cold.

It is critical to communicate to consumers that research shows people who are up-to-date on their vaccines are less likely to get very sick, be hospitalized, and die from COVID-19. Studies also show that staying up-to-date on COVID-19 vaccinations reduces the likelihood of developing long COVID-19.

CILs can respond to vaccine hesitancy:

• Through outreach and education,
• through one-on-one services,
• during the information and referral process, and
• whenever staff becomes aware of vaccine hesitancy.

Addressing Vaccine Hesitancy

CILs should be aware of their role in providing accurate information about vaccines and other public health initiatives. Some individuals will choose not to get a vaccine, and that is their choice. CILs should never be coercive about the vaccine or any other public health initiative but instead, provide information and education so that consumers can make an informed decision. However, it’s also important to make sure consumers talk with their medical provider if they have specific medical questions.

CILs can use the following approaches to respond to vaccine hesitancy:

• Debunk misinformation by providing facts and addressing disability-related concerns.
• Provide accessible information that addresses disability-related issues. Ensure the CIL creates information that is available in alternative accessible formats, including large print; braille, as requested; and Section 508-compliant electronic information. CILs should also have information available in multiple languages. The lack of accessible information is one of the disability community’s most significant barriers to vaccination, so CILs must ensure that the information it is sharing is accessible.
• Elevate stories of leaders in the disability community who got vaccinated. If they experienced hesitancy before being vaccinated, it is a good idea for them to share how they resolved it. Because disability stories are not generally promoted, CILs need to share these stories. This provides consumers with peer role models and credible sources.
• Provide information about how some people with disabilities are at an increased risk of getting very sick or dying from COVID-19. Remember, disability or a diagnosis may not be the only reason someone may be considered high risk. Some people may have difficulty engaging in safety practices, like wearing masks or maintaining social distancing, due to their disability or disability-related needs. They could also be at increased risk because they are multiply marginalized, including being Black, Indigenous, or a person of color, having low income or experiencing poverty, and speaking languages other than English.
• Respond to hesitancy individually and within safe groups. Provide peer-to-peer support to build trust between trusted people.
• Listen carefully without judgement and address their concerns.
• Share personal stories of people with disabilities getting vaccinated.

Addressing Barriers

People with disabilities, including Black, Indigenous, and People of Color (BIPOC) disabled people, encounter barriers that can put them at greater risk of getting very sick and/or dying during public health emergencies. The barriers to healthcare during the COVID-19 pandemic were not new to disabled people. Vaccination and public health emergency response outreach efforts to the disability community are not successful unless these barriers are acknowledged and addressed.

Common barriers to access include:

• lack of access to vaccines in remote or rural areas,
• limited or no access to accessible transportation,
• limited options for in-home vaccinations or mobile clinics,
• limited or no internet access,
• limited or no access to medical specialists or medical professionals knowledgeable about specific disability risk factors,
• poverty and limited income,
• lack of accessible clinics and websites,
• lack of easy-to-understand and accessible information about the public health emergency,
• lack of telehealth options,
• hidden costs,
• disability bias and ableism, and
• concerns about not having legal identification documents or proof of citizenship.

Some examples of barriers to vaccination, testing, and treatment consumers could encounter due to their location include:

• living far away from vaccination centers, testing sites, doctor’s offices, and emergency response operations;
• living in an institution where they do not have independent access to information, vaccination, testing, and treatment;
• needing an expert medical provider that does not have an office near their residence;
• not having transportation or living in an area without access to public transportation, especially in rural and remote areas; and
• difficulty finding information about public health emergency updates, such as COVID-19 vaccination, due to lack of internet access or internet-connecting devices.

People that disproportionately lack internet access include people:

• living in rural and remote areas,
• experiencing poverty, and
• who are unhoused.

Potential Solutions:

Transportation

CILs can:

• offer transportation services or services to connect people with local, accessible providers;
• partner with local public transportation systems to give free rides for vaccines and/or other public health response services;
• help consumers access paratransit;
• pay for and arrange rides through rideshare companies;
• find out if rideshare companies such as Uber, Lyft, and others will provide free or discounted rides to people seeking publicly supported healthcare response activities. CILs need to be informed of the resources available in their area; and
• offer gas cards or reimburse mileage to those seeking vaccinations.

In-Home Vaccination and Treatment Outreach

CILs can:

• develop partnerships with local health departments and hospitals to schedule mobile clinics;
• assist with advertising and outreach about these options for consumers; and
• assist with advocacy, organizing, and education.

These partnerships may also allow CILs to assist consumers with identifying a provider in their service area who can give in-home vaccinations. This information can be provided at various staff-consumer contact points, such as in the Information and Referral process or during the goal development process between consumers and independent living staff.

Navigating Lack of Internet Access

CILs can assist consumers without internet access by:

• Provide access to a computer, such as through community computers at the Center,
• collaborating with community partners to problem solve and share resources,
• providing print materials with the same information that is shared electronically,
• helping them schedule appointments over the phone, and
• partnering with and promoting organizations in the community that provide internet access, such as the local public library.

Hidden Costs

Some ways that consumers may experience costs related to getting vaccinated include:

• childcare,
• transportation,
• parking, and
• missing work.

These factors can make accessing free public health resources like COVID-19 testing and vaccinations more difficult.

Difficulty Navigating Vaccine Information and Systems

Some reasons consumers may have trouble accessing vaccine information, and services include:

• a history of negative experiences with their medical care, particularly for those within the BIPOC community;
• lack of access to medical professionals with disability-specific expertise;
• inability to undergo medical exams because the doctor’s office is not accessible or accommodations are not provided;
• inaccessible medical equipment;
• disability bias on the part of medical professionals;
• lack of clear, easy-to-understand instruction from medical professionals; and
• lack of medical professionals that communicate in or prioritize languages other than English, along with a lack of interpreters and credibility for people with disabilities who speak non-standard English.

Accessible Information

Under the Americans with Disabilities Act (ADA) or Section 504 of the Rehabilitation Act, when federal funds are expended, people with disabilities have the right to access information and specific accommodations when accessing healthcare. During the COVID-19 pandemic, CILs and advocates had to educate public health entities about their obligations under these laws to provide accessible information.

These accommodations include:

• Physically accessible vaccine and treatment sites;
• Access to American Sign Language (ASL) interpreters;
• Materials in multiple accessible formats; and
• Accessible information in multiple languages.

CILs should share disability-related information about public health emergencies with consumers. Consumers are most likely not getting this information anywhere else or it may be incomplete.

There are several ways CILs can help consumers exercise their right to accommodations.

CILs should:

• assist consumers with advocating for accommodations related to any appointments or events sponsored to provide aid in a public health emergency;
• provide advocacy and education when local websites and online registration are not accessible;
• support consumers who wish to file complaints or report inaccessible public health services by connecting them to the local protection and advocacy system and the US Department of Health & Human Services Office for Civil Rights (HHS OCR); and
• partner and provide guidance on how to make the vaccine and other service provision sites more accessible.

Navigating Healthcare and Telehealth Options

The COVID-19 pandemic accelerated the adoption of telehealth practices to keep people safe and healthy. Although telehealth reduced some disability-related barriers, such as transportation and architectural access, it is essential for CILs to be aware of the access barriers that continue to exist online.

These barriers include:

• the unavailability of telehealth for people who do not have internet access or devices that can access the internet;
• lack of adequate technology skills or training; or
• websites and telehealth services that are not accessible.

Addressing these barriers now will make it easier for consumers to receive services in a future pandemic or public health emergency.

CILs can assist consumers by:

• aiding in finding a healthcare provider and telehealth options;
• initiating education and advocacy efforts to state or territory health departments regarding the need to continue telehealth;
• advocating for accommodations needed to participate in telehealth visits; and
• supporting them by contacting a medical provider when needed.

Navigating Vaccine Sites

With the release of the COVID-19 vaccines, the United States launched a large-scale vaccination outreach campaign. As vaccination sites opened, CILs needed to advocate to make the vaccination process accessible to people with disabilities. The vaccination process includes getting to, through, and from the vaccination appointment. The efforts made to ensure vaccine site accessibility can be used as a model for ensuring the accessibility of future public health events.

CILs can:

• ensure vaccine sites are accessible before assisting consumers with scheduling appointments;
• provide education to vaccine sites and local health departments about accessibility and working with people with disabilities; and
• assist consumers with arranging accommodations at the vaccine site. Accommodations at vaccine sites include:
  • drive-thru vaccinations;
  • modified hours for people who may need additional assistance;
  • extra time before and after receipt of treatment such as a vaccine;
  • wait time reduction;
  • communication needs, such as ASL interpretation, plain language, accessible forms, etc.; and
  • accessible information.

Reducing Disability Bias and Ableism

Educating public health workers about conscious and unconscious disability bias is necessary to create an environment that is meaningfully inclusive of people with disabilities. When policies that support awareness and inclusion of people with disabilities are put into practice, access increases for all. CILs can work to dispel disability bias and ableism by providing disability bias and anti-ableism training to local health departments and clinic staff.

CILs should:

• educate providers about disability and required accommodations to ensure everyone can access public health response efforts; and
• demonstrate the need to be inclusive by providing education about the needs of and barriers encountered by the disability community.

Barriers that Impact Multiply Marginalized People with Disabilities

Multiply marginalized disabled people have additional barriers and concerns to consider in public health emergencies.

Multiply marginalized consumers may be:

• asked for an ID or Social Security number when getting a vaccination, or
• told that they must be U.S. citizens or have immigration documentation to receive the vaccine.

Education about identification Requirements

An ID card was not required to get a COVID-19 vaccine. (National Immigration Law Center) (American Red Cross).

• Workers at vaccine sites may have asked for ID, but it was not required to show one to them.
• If a provider insists on receiving documentation, the consumer can go to another provider, such as a community health center or clinic.

Note that proof of insurance, government issued identification, and other requirements may be required to receive other vaccines.

Education about Immigration Status

During the declaired public health emergency caused by COVID-19, people who were not U.S. citizens were able to receive the COVID-19 vaccine for free. The vaccine was free and available to everyone over six months old in the United States regardless of immigration status. (National Immigration Law Center)

Education on Deportation and Vaccination

The Department of Homeland Security (DHS) has stated that the “U.S. Immigration and Customs Enforcement (ICE) and U.S. Customs and Border Protection [CPB] will not conduct enforcement operations at or near vaccine distribution sites or clinics. Consistent with ICE’s long-standing sensitive locations policy, ICE does not and will not carry out enforcement operations at or near health care facilities, such as hospitals, doctors’ offices, accredited health clinics, and emergent or urgent care facilities, except in the most extraordinary of circumstances.” (DHS Statement on Equal Access to COVID-19 Vaccines and Vaccine Distribution Sites)

When they go to get vaccinated, someone may ask for an ID or Social Security Number. People are not required to give anyone an ID or Social Security Number to get the COVID-19 vaccine. (National Immigration Law Center)

These sites shouldn’t keep you from getting a vaccine because of your immigration status. DHS said ICE will not enforce immigration laws at or near vaccination sites.

Direct Outreach and Service Provision to Consumers

The previous sections of this chapter have focused primarily on public education and advocacy campaigns aimed at both consumers and public health response workers. In the spirit of “nothing about us without us,” this toolkit aims to ensure that the lives and needs of people with disabilities are reflected in public policy and practice. This spirit is also reflected in CILs’ direct work with consumers in the assistance of developing goals to increase and enhance the independence and dignity of people with disabilities. The following sections illustrate how disability access to life-saving public health initiatives can be supported through direct service provision to consumers.

These direct services can be provided at a number of staff contact points. CILs can:

• provide services to assist people in accessing public health emergency response outreach events;
• educate consumers on their rights to access public health initiatives and support them in advocating to protect those rights; and
• encourage the community to participate in public health initiatives, such as receiving the COVID-19 vaccine. When friends, family, personal care attendants and direct support providers, and the public take steps to protect their own health, they reduce the spread and impact of disease. This makes the community safer for everyone including people with disabilities who may be at high risk.

In order to best support and educate consumers, CIL staff must be aware of disability civil rights laws. For a brief overview of laws protecting and supporting people with disabilities related to accessing healthcare and medical facilities, see Chapter 3.

Scheduling Appointments

CILs can assist consumers in:

• identifying accessible and qualified pharmacies, medical providers, hospitals, or clinics for antiviral COVID-19 treatment;
• scheduling appointments;
• creating a plan to help the consumer remember the appointment;
• developing a plan for securing transportation; and
• arranging any appointment accommodations, such as late or early time slots, if needed.

Information and Referral: Responding to Callers

One of CILs’ primary goals is to provide accurate information and peer support to the disability community. They are not medical professionals, and information given to callers should come from a position of understanding that CIL staff cannot give medical advice. CILs are trusted representatives of the disability community and staff are disability experts. CILs have the power in this role to provide information, support, and to address hesitancy about public health emergency practices. If a consumer/caller has specific questions about how they might respond to vaccines and treatment, CIL staff should tell them to contact their doctor or another medical professional. I&R staff can assist with locating a doctor or medical professional if they do not have one.

If a family member or a personal assistance service provider is calling to seek assistance persuading a disabled person to access public health resources, ask to speak with the consumer directly. Be mindful that the person with the disability has the right to choose whether or not to receive any type of healthcare, including vaccinations. If the person with a disability has a guardian or conservator, the disabled person should still be included in the decision-making process.

Many people with disabilities are anxious about vaccines and healthcare. If a consumer contacts the CIL and indicates that they have a high level of anxiety about receiving vaccinations or treatments related to the public health emergency, offer peer support and engage in problem-solving.

When helping to schedule appointments for vaccines or healthcare needs related to a public health emergency,CIL staff must communicate with the consumer throughout the process. If a consumer is anxious or otherwise uncomfortable about calling to schedule an appointment or having trouble getting assistance on the phone, offer to three-way call with them to schedule an appointment. Be ready to offer other types of support as needed.

Even when a consumer calls for services unrelated to a public health emergency, CILs may wish to include questions in the initial intake process to identify whether a consumer needs assistance. This way CILs can provide information and make resources available as soon as possible.

Sponsoring a Public Health Emergency Response Clinic

Due to their credibility in the disability community and subject matter expertise in the rights and needs of people with disabilities, CILs are uniquely qualified to partner with local health departments to host vaccine clinics and public health resource events. CILs can provide information about selecting accessible venues and onsite and remote registration accommodations. CILs can also host the event at their offices.

When promoting or hosting an event such as a vaccine clinic, CILs, and other hosts should prioritize accessibility. For a blueprint for hosting an accessible vaccine clinic, see the accompanying toolkit “How to Host a Barrier-Free Vaccine Clinic.”

Sources

• People with Disabilities (CDC)
• Complaint Portal (U.S. Department of Health and Human Services Office for Civil Rights)
• Answers to Common Questions about Immigrants’ Access to the COVID-19 Vaccines (National Immigration Law Center)
• COVID-19 Vaccines for Undocumented People (American Red Cross)
• DHS Statement on Equal Access to COVID-19 Vaccines and Vaccine Distribution Sites (DHS)
• COVID- 19 Vaccines and Testing Must be Free for Patients (New York Times)

References

• Getting Your COVID-19 Vaccine
• Link: Assisted Living Facility Database as of 2023 (SeniorLiving.org)
• Environmental Injustice and Disability: Where is the Research? (Environmental Health News)
• Patient Tips: Healthcare Provider Appointments for Post-COVID Conditions (CDC)

Introduction

Centers are essential for providing education regarding barriers to healthcare for the disability community and educating the broader community about solutions. This was especially true during the COVID public health emergency. Centers should be prepared to fill this need before the next public health crisis impacts our community.

While not exhaustive, this chapter will look at:

• Types of barriers that can prevent equitable access,
• Solutions for resolving these barriers, and
• Additional resources to use when providing education and advocacy.

After reading this chapter, a CIL will be better prepared with strategies and solutions to advocate for barrier removal. Remember that barriers are often a form of discrimination, and many disability rights laws prohibit barriers to services.

Geographic and Transportation Barriers

For many people with disabilities, the availability of accessible transportation can heavily depend on the geographic location where they live. When asking people with disabilities to attend a health related event, transportation may be a barrier. Part of barrier removal may include providing accessible transportation, transportation reimbursement, or providing in-home services.

Accessible transportation needs can differ depending on the disability. For people with mobility disabilities who use power wheelchairs or scooters, accessible transportation requires a wheelchair-accessible vehicle. People with mobility disabilities who drive or have transportation to the event will need to have appropriate accessible parking.

When arranging accessible transportation, CILs must consider time, cost, and availability. It takes time and planning to arrange accessible transportation. Many accessible transit options, both public and private, require a minimum of 24 hours of advance notice to provide a ride. If a CIL is looking at alternative options, such as renting a vehicle, including this line item in the agency budget or grant application is essential.

Lastly, when seeking accessible transportation, CILs may not find many options, especially in rural or remote areas. Under the Americans with Disabilities Act, (ADA), paratransit is only required to cover an area within three-fourths of a mile of a fixed bus route. Rideshare services such as Uber and Lyft rarely offer accessible transportation. Taxis, when accessible and available, tend to be expensive. Although taxi companies may advertise that they have accessible vehicles, they may be limited in availability, require reservations, and have long wait times.

Like transportation, parking can be a barrier for people with disabilities. CILs can address this barrier by ensuring healthcare sites have designated accessible parking spaces. The ADA requires at least one accessible parking space for every 25 total parking spaces provided. One out of every six parking spaces must be van-accessible, which means they’re either a minimum of eight feet wide with an eight-foot-wide access aisle or 11 feet wide with a five-foot access aisle. Van-accessible parking spaces allow room to deploy a lift or ramp for people with mobility disabilities to exit the vehicle. Note that where state or territory standards are stricter, those standards must be complied with to meet ADA obligations.

Under the ADA, temporary accessible parking spaces may be permitted at temporary vaccine clinics or for other temporary events. Temporary accessible parking spaces at vaccine clinics should comply with the ADA requirements mentioned earlier, including being as close as possible to the accessible entrance of the clinic, having a stable and slip-resistant surface, and complying with the parking dimensions above. It is also essential to ensure that there is an accessible path of travel from the parking space to the entrance of the clinic.

Lack of Easy-to-Access Vaccination Sites

Some people with disabilities live far away from vaccine clinics, and/or accessible transportation is not feasible. Others may benefit from getting their vaccine in a familiar setting. In these situations, scheduling an in-home vaccination should be requested as a program modification.

To ensure CILs are reaching people with disabilities so they can access in-home vaccinations, Centers can partner with the following:

• other CILs,
• local public health departments,
• nutrition agencies like Meals on Wheels,
• transportation agencies for people with disabilities,
• community health workers,
• community-based group homes,
• healthcare providers,
• home healthcare facilities, and
• other local organizations that work with people with disabilities.

If CILs are supporting in-home vaccination initiatives, CILs should ask the consumer if any personal care attendants, friends, or family members would like to get vaccinated at the same time. This helps make sure everyone is protected as much as possible from COVID-19. If consumers can go to vaccine sites, encourage them to ask their support network to get vaccinated.

Medical Barriers

Access to Health Insurance

When considering barriers to healthcare for people with disabilities, not all disabled people have medical insurance. CILs should support consumers in identifying if they qualify for Medicaid, Medicare, or health insurance under the Affordable Care Act (ACA). CILs should be providing assistance with increasing access to healthcare, which could include assisting with the application process and advocating for removing any barriers they might encounter with that process. Barriers might include an inaccessible application process, language being difficult to understand, the application located on the website is not accessible for blind users, etc.

During COVID-19 and the Public Health Emergency, vaccines were available for free to everyone. However, free vaccine access is not always guaranteed once the Public Health Emergency ends. Therefore, CILs need to be in regular communication with state Medicaid and Medicare providers to stay up-to-date on the status of coverage. CILs should also support consumers in staying updated with Medicaid/Medicare recertifications and coverage from other providers. Another vital effort CILs should engage in is advocating for free vaccine programs within their states to ensure costs are not associated with lifesaving vaccines when people with disabilities may be uninsured.

Sensory and Trauma-Related Barriers

Many people with autism or intellectual, developmental, psychiatric, and other disabilities may have difficulty with stimulation from multiple senses simultaneously (multi-sensory inputs). Some factors that may create barriers during vaccine events include loud noise, lighting, multiple processes, uncomfortable temperatures, or crowded spaces. Therefore, it is essential to remember this when creating an event. Strategies around creating sensory-friendly inclusive events can be found in the appendix.

It is also expected that disabled people might have experienced medical trauma in the past. Medical trauma means a set of psychological and physiological experiences from invasive or frightening treatment experiences. Medical trauma is highly prevalent within the disability community due to several factors but is often associated with ableism and how standards of care are not always inclusive of people with disabilities. These traumas increase anxiety for many people in the disability community as ongoing concerns that medical judgments and lack of understanding of healthcare providers regarding different approaches to medical care may be required would be compromised by underlying ableism and a lack of belief in the value of disabled lives. As a result, medical trauma causes barriers and often creates distrust of medical providers. Since CILs are part of the disability community as they are run and operated by the majority of people with disabilities, they are trusted among the disability community. Therefore, CILs must be involved in helping remove these barriers to ensure that people with disabilities are accessing lifesaving vaccines.

The presence of ambulances, police cars, and other first responders, in addition to the medical procedure itself, can trigger their memories of medical trauma. A CIL should provide warnings about music, sirens, images, and other triggers whenever possible. They should also seek consumer input on how the CIL can best prepare them for the vaccines. Sometimes this is providing inclusive and accessible information, peer-to-peer support, learning the vaccine process and benefits from people with disabilities, and preparing a consumer for getting the vaccine by providing step-by-step instructions. But most importantly, the CIL should ensure the consumer controls the process and is heard, as they are the best experts for their own needs.

Barriers When Accessing Digital Spaces

At the start of the COVID-19 pandemic, much of everyday life moved to digital spaces. Medical appointments, meetings, and even day-to-day socializing moved to telehealth platforms, video conferencing meetings, and video or phone calls. Virtual spaces, especially telehealth, are often a safe and convenient option for people with disabilities, allowing access to spaces without stresses like lack of transportation, stimulation, or other anxiety-inducing barriers. However, it also poses a set of unique barriers for many in the disability community.

Lack of Internet-Connected Device or Internet Access

Participation in digital spaces like telehealth or online registration forms requires access to a smartphone, tablet, or computer and a reliable internet connection.

Many people with disabilities are unemployed, have very limited income, or live in an area with limited internet access. This means it is possible they may not have access to:

• electronic devices needed to access the internet,
• devices that support assistive technology,
• appropriate training and education opportunities to familiarize themselves with current technology,
• internet service due to limited or no income.

Centers should be ready to share information and resources regarding options for technology devices and accessibility with the disability community. It is also essential that CILs provide consumers with opportunities for training and guide them to low-cost technology options such as Computers for the Blind or low-interest assistive technology loan options. Most states also have programs that include a lending library where disabled people can try out a device before exploring options for purchasing the equipment. Therefore, as CILs think about the equipment needed for loan closets, consider technology options that could be loaned out or given to consumers if technology is essential for accessing programs and other community supports.

People with disabilities intersect within all communities, including rural or remote areas. This means internet access may be limited or completely unavailable. Given the already limited access to transportation in many rural areas, the combination can result in significant barriers when attempting to access medical care or receive services.

Information about programs to offset the cost of devices and internet service can be found in the resource section of this chapter. As a Center, it is essential to ensure consumers are aware of these programs and any other initiatives allowing for affordable internet access or access to devices in rural areas. CILs may also be interested in providing a community computer housed at the CIL for consumers to access telehealth appointments or vaccine appointment registrations if transportation is available.

Digital Accessibility Barriers

Digital spaces like telehealth can also pose some unique digital barriers. People with a wide variety of disabilities benefit from implementing digital accessibility. These disabilities include, but are not limited to:

• deafness or hard of hearing,
• blindness, low vision, or other visual disabilities,
• disabilities impacting speech,
• intellectual or learning disabilities,
• difficulty reading print due to a disability, and
• anxiety.

One example of barriers in virtual spaces is telehealth applications or web portals that do not use captions during appointments, which excludes many people with disabilities. Other digital accessibility barriers might concern the design of the smartphone/tablet app or the web portal. If these platforms aren’t designed with accessibility in mind, they will not be usable by many people with disabilities. Platforms should follow digital accessibility standards defined in the Web Content Accessibility Guidelines (WCAG) and Section 508 of the Rehabilitation Act. More detailed information about digital accessibility can be found further in this chapter, and the full texts of the relevant standards can be found in the appendix.

Another example of barriers in virtual spaces could include people who communicate in ways other than verbally. Therefore, it is essential to ensure communication devices can be used for texting options.

Strategies for efficiently working around inaccessible websites and applications are few. However, later sections include some considerations of which to be aware, including ways to advocate for digital accessibility and equitable access. With these tools, CILs will be better equipped to explain inaccessibility issues in digital spaces as needed and assist consumers and promote equity.

Physical/Architectural Access Barriers

When physical spaces are not accessible, this creates a barrier to getting into the space to seek services. Many people with disabilities encounter significant barriers in healthcare settings where they may seek vaccination, testing, or treatment. However, all healthcare settings must be accessible via federal law so it’s important to provide education to all healthcare providers, public health entities, and vaccine providers. When considering vaccine or testing sites for a referral or developing an event, CILs need to review the accessibility of the building to determine if the site is accessible. CILs should never provide general resources without knowing if the individual would be appropriately served, as this would just create another barrier.

Note: Only asking another entity if a building is accessible often does not lead to accurate information. People often do not understand accessibility requirements and may believe a facility is accessible when it is not. CILs should send someone trained in ADA access requirements to assess the area physically or ask very specific questions of a provider. CILs can learn about ADA architectural standards by going to www.ada.gov. Also, remember that accessibility goes beyond just architectural accessibility, as mentioned in other sections in this chapter.

Informational Barriers

The saying “knowledge is power” is valid during a public health emergency. The more high-quality, factual, and understandable information CILs and the disability community can access, the easier it is to be well-prepared. However, people with disabilities may have difficulties accessing information, so Centers should be ready to provide easy-to-understand, accurate, and up-to-date details to the disability community.

The Misinformation Problem

The internet and media are packed with information that isn’t accurate, also known as misinformation. This was true about COVID-19, vaccines, and treatments. CILs need to have access to accurate and up-to-date information. The best places to find factual information are credible sources like the Centers for Disease Control and Prevention (CDC), the World Health Organization (WHO), and credible national news sources. Additionally, accurate and reliable information for local communities can be provided by local and state governments as well as their health departments. While these aren’t the only sources of accurate information, they are an excellent place to start. Likewise, it is also essential to make sure that it is known that people with disabilities may have a higher chance of contracting, getting sick, and even dying from diseases. Misinformation often does not provide information about the people with a higher rate of dying, so ensuring the CIL includes disability-specific facts is essential.

It’s also important to know the most common misinformation consumers are learning. This ensures you can research ways to help them understand clearly and accurately what is happening with a public health emergency, vaccines, or other related topics.

Information in Plain Language

Plain language is a way of writing designed to ensure everyone can easily understand what is being communicated. This writing style uses short sentences, small syllable words, with one idea in each sentence. When writing in plain language, try to use familiar words, avoid jargon and technical words, and always explain acronyms when first using them. More tips about how to write in plain language can be found in the resource section of this chapter.

EXAMPLE OF PLAIN LANGUAGE WRITING

Example of a statement that is not in plain language: COVID-19 vaccinations are the most effective measure to prevent sickness; still, vaccinations are not 100% effective at preventing the spread of COVID-19. Therefore, precautions are still needed to be effective with limited the spread of COVID-19.

Example of the statement above made into plain language: The vaccine works well to keep you from getting sick. But you might still be able to give COVID-19 to other people. We still need to be careful so everyone can stay safe.

Information In Languages Other than English

People with disabilities are the largest minority group in the United States and often hold other marginalized social identities. CILs should seek out or create information available in various languages to meet the needs of non-English readers or speakers. Language doesn’t always refer to written or spoken communication. As CILs are cross-disability, CILs should never send information that is not accessible to the community. For example, if the CIL shares videos, they should include closed captioning and American Sign Language. If the CIL is developing print information and /or sharing information online, they should include materials in languages other than English. It is also crucial for CILs to hire people who communicate in the languages consumers use. If CILs do not have staff to connect with people with disabilities that communicate in languages other than English, reach out and establish relationships with local interpreting agencies to ensure accurate information is shared.

Financial Barriers

While financial barriers impact most people in some way, they can be particularly problematic for people with disabilities. There is a high percentage of unemployment in the disability community, meaning many people with disabilities experience poverty or have limited income. When addressing consumers’ concerns related to public health emergencies, CILs should work with them to find out if their insurance provider covers vaccinations, tests, and treatments.

If you are hosting a vaccine clinic, you might also want to consider the financial barriers people with disabilities face. One way you could do this is by offering gift cards to help cover transportation costs if permitted by the funding stream you are using, reimbursing for gas, covering public transportation fees, arranging and paying for rideshare, or arranging in-home vaccinations.

Identification/Immigration Status Barriers

Many people with disabilities may be under the false belief that they are required to provide documentation of immigration status or other identification when receiving vaccines or tests during a public health emergency. This is not true. Individuals can seek out medical treatment without either of these. CIL staff should inform consumers that documentation or identification is optional. Additionally, should immigrants with disabilities wish to seek identification, legal immigration status, or citizenship, CIL staff should be prepared to provide them with the necessary skills and resources.

Disability Implicit Bias

The most apparent barrier for Americans with disabilities is attitude and misconceptions about disabilities. Implicit bias impacts people with disabilities significantly. An implicit bias is an unconscious association, belief, or attitude toward any social group. It is a belief in favor of or against a particular group based on predetermined characteristics. Implicit bias is deeply engrained within healthcare.

Bias impacts healthcare for people with disabilities as it can lead to becoming:

• distrusting of medical professionals;
• reluctant to engage in preventative measures like receiving vaccines;
• reluctant to receive medical treatment; and
• perhaps receive treatment later than is recommended.

CILs can support public health departments and other healthcare professionals in mitigating disability bias by:

• providing disability implicit bias mitigation training,
• creating accessible materials that demonstrate disability-affirming language and behavior, and
• supporting clinics in being inclusive (offering low stimulation rooms, providing fidget devices, etc.),
• and being legally compliant.

Important Practices to Address Barriers

Accessible Vaccine Sites

When considering potential vaccine clinics or health fair sites, prioritize accessibility requirements. It is required for clinics or other programs to be accessible. Therefore, all facilities used for public health-related activities should be thoroughly surveyed by people with a deep understanding of accessibility requirements. Trained professionals with disabilities are proven to be the best when surveying for accessibility.

When publicizing vaccination clinics the CIL is hosting, CILs should always include contact information for a designated staff member who can assist with requests for accommodations. This way, CILs can ensure the clinic meets all needs.

Sample Accessibility Statement for People to Request Accommodations

If you need any accommodation to participate in this event, please contact [name] by [deadline date] via email at [email address], phone at [number], or by dialing 711 (Free Relay services) on your phone to discuss your accessibility needs. Accommodations may include but are not limited to sign language interpretation, curbside vaccinations, visual aid, assistance with completing paperwork, and materials in alternative formats.

The best practice is to include a form field on the website so people can register for the event. You can provide options for standard accommodation but also leave the field blank so people can type in their accommodation needs. Remember: even if you do not receive any accommodation requests, it is the law that your event follows the ADA, Rehabilitation Act, and other disability rights laws. As disability-led organizations and leaders in the community, it is also essential that all CILs are modeling this.

Creating Accessible Content and Materials

The two federal primary laws that pertain to digital accessibility are the Americans with Disabilities Act (ADA) and the Rehabilitation Act, particularly Sections 504 and 508. While Section 508 has its own enforceable standards and pertains only to federal agencies and other entities receiving federal funding (such as many public entities, including local and state government agencies, nonprofits, CILs, and SILC), the ADA is a bit more complex.

As with issues of physical accessibility, the ADA pertains to both public and private sector entities with digital accessibility. However, unlike Section 508 of the Rehabilitation Act, the ADA doesn’t provide guidelines for what is required for something in the digital space to be considered fully accessible/compliant. To achieve ADA compliance, the Web Content Accessibility Guidelines (WCAG) created a set of standards.

WCAG covers every aspect of digital accessibility and is measured with three levels of success criteria:

• Level A: Items that achieve level A of the WCAG are seen as only having baseline accessibility. They are seen as neither accessible nor compliant and do not meet the expectations of digital accessibility in the ADA.
• Level AA: Level AA is seen as the level required to achieve full accessibility/compliance. There still may be small accessibility errors, but at level AA, a website can be used by most, if not all, people with disabilities.
• Level AAA: In terms of digital accessibility, level AAA is seen as going above and beyond. It is not at all necessary to achieve, or even aim for, level AAA with all digital content. However, doing so often enhances the accessibility and usability of a site in many ways. It can be helpful if people with disabilities are a website’s only/primary audience.

Creating websites, applications, and documents that meet all the accessibility standards is technical and time intensive. If CIL staff are creating content or helping others to create accessible content as part of a fee-for-service program, make sure they refer to the full text of the required standards in the resource section of this chapter. Below are some tips that may be helpful:

Considerations for Digital Accessibility

ALTERNATIVE TEXT (ALT TEXT) Short text description, no more than two sentences, describing the critical details within an image. All essential images in digital content must have alternative text descriptions. Alt text is programmed into digital content for screen reader users to have information that would be represented visually. Alternative text can also be added to documents, presentations, and social media posts.

IMAGE DESCRIPTION A written explanation that describes essential information about an image in more depth than alt text. Image descriptions are usually provided in the written content of a web page and are accessible to everyone. Image descriptions can also be as long as a paragraph, whereas alt text should only be one or two sentences.

AUDIO DESCRIPTION An audio track that narrates and describes the visual parts of a film, TV show, video, or performance as the content is playing. An important note: narration/description usually occurs when no spoken dialogue occurs.

CAPTIONS Text displayed in the video and audio content that describes the audio, including sounds, conversations, and music. Captions can be either open or closed. Closed captions can be turned on and off, while open captions are always available on the screen. Open captions are most commonly preferred for many disabled people.

COLOR CONTRAST The difference of color between contents (text and graphic components) and their background. The version of WCAG, when this toolkit was published requires a minimum of a 4.5:1 ratio for accessibility. Color contrast can be tested using an automated checker such as the Adobe Contrast Analyzer from Adobe Color.

HEADINGS Text coded into webpages and added to documents and presentations using styles to help navigate screen reader. While headings assist in navigation, the primary purpose is to provide document structure by breaking documents into sections. Headings must be nested correctly to be effective. Heading level one, for example, should only ever be used for the title of a document. Headings at level two represent the titles of large sections of your documents, and headings at level three onward represent subsections within those larger sections.

MEANINGFUL LINK TEXT When the text linked on a document or webpage is very descriptive and tells you exactly where that link will lead and what you will find there. Links that say click here or read more are called generic link text and are not considered accessible.

KEYBOARD NAVIGABLE Not all people with disabilities can navigate websites and documents with a mouse. Instead, they use the keyboard. Keyboard navigable means your website/document/presentation can be navigated using only the keyboard.

Sources:

• Disability Stigma and Your Patients
• Life Line support for affordable communications
• WCAG V 2.1
• Information on section 508
• State/Territory Assistive Technology Programs Directory
• ABA Resources Identify Implicit Biases Against People with Disabilities (americanbar.org)

Introduction

Disability intersects with all communities, including other marginalized communities. It is essential to actively engage with disabled people with multiple marginalized identities and organizations led by multiply marginalized people to ensure that the CIL’s response during a public health emergency is as effective as possible and considers other barriers that may be experienced by disabled people who may belong to more than one marginalized group.

People are marginalized due to their:

• disability,
• race,
• economic class,
• age,
• sex,
• gender,
• sexual orientation,
• immigration status,
• ethnicity,
• religion,
• and more.

People with disabilities are one of the largest minority groups in America and are deeply marginalized. However, when a disabled person is marginalized in more than one area, they face additional discrimination and have additional barriers. Marginalization is a byproduct of oppression, or the combination of prejudice and institutional power, that creates a system that regularly and severely discriminates against some groups and benefits others. Prejudice and power rely on the system where certain groups are seen as “better than” other groups and are subsequently privileged, while these “other groups” are pushed to the margins to be forgotten.

Systemic oppression exists throughout the United States, and powerful groups often carry out structures or processes (i.e., non-disabled people, white leaders, wealthy people, etc.).

Some forms of systemic oppression include:

• ableism,
• racism,
• classism,
• sexism,
• ageism, and
• many more.

Intersectionality

Intersectionality is a framework coined by Kimberlé Crenshaw to help describe how people often experience multiple marginalized identities that compound experiences of oppression where they intersect. This framework is used to demonstrate how multiple forms of oppression interact with each other and impact a person and allows for treatment of the root of the issue rather than focusing on the symptoms of the problem. Many people face systemic oppression and often in multiple ways at the same time.

For example, a person with a disability is often discriminated against. This form of oppression can compound with other forms if the disabled person is also a woman, person of color, member of the LGBTQ+ community, persons whose first language is not English, if they are working-class/poor, or are many other identities. These identities do not exist separately. It is impossible to only look at one form of oppression when discussing barriers marginalized and multiply marginalized people face when accessing vaccinations. In short, it is dangerous for CILs to focus only on the marginalization of people with disabilities. For example:

• People with disabilities experience discrimination and increased barriers more than non-disabled people.
• Disabled women face more discrimination than disabled men.
• Black disabled people are discriminated against more than white disabled people.
• A nonbinary person with a disability may experience additional barriers than a disabled woman.

It is vital to use an intersectional lens when addressing barriers to vaccinations for people with disabilities because people with disabilities are often also members of other marginalized communities. CIL staff must consider all parts of someone’s identity to understand how to support them best.

Use an Intersectional Lens

An intersectional lens is always needed since everyone has intersectional identities. Understanding that people are made up of multiple identities that influence how society interacts with them, instead of focusing on specific experiences, will enable a Center to support the consumer in overcoming the barriers they face in public health emergencies.

The first step is to apply the intersectional lens to your consumer base. Reflect carefully on the following questions:

1. Which communities do we serve? Which communities do we not serve? Why?
2. Whose participation is prioritized and valued? Whose participation is not? Why?
3. Who has the most access to support and resources? Who doesn’t? Why?
4. Whose voices do we uplift the most? Whose voices are often ignored? Why?

These questions can help highlight when the CIL excludes specific communities, even without meaning to.

Health Equity

Many populations are marginalized and discriminated against in healthcare settings. CILs can be more effective in getting people with disabilities vaccinated by using a health equity lens.

The CIL can center health equity during a public health emergency by:

• Understanding that ableism and other forms of oppression impact health and healthcare access;
• Recognizing that information must be accessible in terms of both disability and culture;
• Include information that incorporates the barriers of other marginalized communities, not just the barriers within the disabled community;
• Avoiding implying that a person or community is at fault for their increased health risks or adverse health outcomes; and
• Emphasizing that equal health access and opportunity benefits everyone.

How to Become More than an “Ally” to Marginalized Communities

What does it mean to be an ally to marginalized communities? For many, an ally to marginalized people is someone who believes in equality and supports marginalized communities.

It is essential, however, to remember that allyship is more than a declaration. It requires deep reflection on one’s actions and beliefs and centering the impacted communities.

Authors Tsedale Melaku, Angie Beeman, David Smith, and Brad Johnson describe allyship as “a strategic mechanism used by individuals to become collaborators, accomplices, and coconspirators who fight injustice and promote equity … Allies endeavor to drive systemic improvements to … policies, practices, and culture.” (Harvard Business Review)

Some best practices to use to move from ally to accomplice include:

Use Inclusive Communication

To reach as many people with disabilities as possible and encourage them to seek vaccination, CILs can make sure their communication is inclusive of all people and does not stigmatize or harm anyone.

CIL staff can practice inclusive communication by:

• Avoiding dehumanizing language and using identity-first or person-first language while always using the language the individual prefers
  • Example: Instead of “inmates,” say “people who are incarcerated.”
• Avoiding blame
  • Example: Instead of “people who refuse to get vaccinated,” say “people who have not yet received their vaccine.”
• Using terms preferred by members of certain communities
  • Example: Instead of “transgenders,” say “transgender people” or “trans people.”
• Avoiding assumptions about gender and using gendered language
  • Example: Instead of “this man/woman/lady/gentleman,” say “this person.”
  • Example: Instead of “excuse me, sir/ma’am,” say “excuse me.”

Prioritize Gender Inclusion

While centering the goal of helping people with disabilities to get vaccinated, it is necessary also to be inclusive of people of all genders.

CIL staff should:

• Ask everyone what their name and pronouns are when meeting new people;
• Share their own name and pronouns;
• Use the name and pronouns that people ask staff to use;
• Collect what information is necessary to serve the person;
• Explain why they are collecting information; and
• Acknowledge the mistake, apologize, and use the correct name and pronoun if they use the wrong name or pronoun.

CIL staff should avoid:

• Only asking people who they think might be transgender what their name and pronouns are;
• Using the wrong name or pronouns;
• Asking invasive or irrelevant questions about birth names, genitalia, or gender-affirming surgeries;
• Assuming gender, pronouns, or what gendered language someone uses;
• Making a scene when they use the wrong pronouns; and
• Assuming that there are only two genders.

Note: sex and gender are two different things. Sex refers to one’s biological and physiological characteristics, and is often discussed using words like male, female, and intersex. Gender “refers to the characteristics of women, men, girls, and boys that are socially constructed,” such as “norms, behaviors, and roles associated with being a woman, man, girl or boy, as well as relationships with each other.” (World Health Organization)

CILs may be required to collect data on gender identity. However, if not, it is encouraged to do so. Below are some examples of how to be respectful when asking about gender identity:

• “My name is _____. What is your name? Do you have a name that you prefer to be called?”
• “My pronouns are _____. What pronouns do you use? Do you use she/her, he/him, they/them, or other pronouns?”
• “What is your gender identity? Are you a man, a woman, non-binary, or another gender?”

Sources:

• What Does Marginalized Mean and Why Does it Matter? (CultureAlly)
• Social Identities and Systems of Oppression (Smithsonian)
• What Is White Privilege, Really? (Learning for Justice)
• The urgency of intersectionality | Kimberlé Crenshaw (TEDTalks)
• The intersectionality wars (Vox)
• What Does It Mean to Be a True Ally to Women of Color? (Harvard Business Review)
• Be a Better Ally (Harvard Business Review)
• Gender and health (World Health Organization)
• Health Equity Guiding Principles for Inclusive Communication.

Introduction

Centers for Independent Living have raised red flags for decades, stressing that nursing homes and other congregate settings are unsafe places for people with disabilities. During the COVID-19 pandemic disabled people living in congregate settings were significantly impacted. While it is difficult to identify exact numbers, we know from many sources that severe illness and deaths caused by COV ID-19 were significant in institutional settings.

While reaching individuals in institutions and coordinating transition services is complex under normal circumstances, the work becomes even more difficult when combined with public health emergencies. CIL employees were challenged by restrictions that limit who can access a nursing home, along with difficulty arranging face-to-face meetings with consumers and other stakeholders when planning for and following the transition. This chapter will review the basics of the transition process and highlight strategies that can be used during public health emergencies. Many of these strategies were successfully utilized during the COVID-19 crisis.

In 1999, the United States Supreme Court Olmstead decision interpreted the Americans with Disabilities Act. The Supreme Court held that people with disabilities have a qualified right to receive state-funded support and services in the community rather than institutions when the following three-part test is met:

• the person’s treatment professionals determine that community supports are appropriate;
• the person does not object to living in the community; and
• the provision of services in the community would be a reasonable accommodation when balanced with other similarly situated individuals with disabilities.

All states have a community integration mandate. Therefore, Centers must advocate in order to enforce this. It is important to note that a state’s obligations under the ADA are independent of the requirements of the Medicaid program. Providing services beyond what a state currently provides under Medicaid may not cause a fundamental alteration, and the ADA may require states to provide those services under certain circumstances. For example, the fact that a state is permitted to “cap” the number of individuals it serves in a particular waiver program under the Medicaid Act does not exempt the state from serving additional people in the community to comply with the ADA or other laws. Therefore, don’t take no for an answer.

CILs are powerful community-based organizations that provide education, advocacy and help enforce Olmstead in their states. But most importantly, they are one of the only federally funded organizations who are mandated to facilitate transitions of people with significant disabilities. In 2016, in section 7(17) of the Rehabilitation Act as part of its implementation of the Workforce Innovation and Opportunity Act (WIOA), Congress amended the definition of Independent Living core services provided by CILs to include a core service around transition. In Independent Living, transition means many things, but this chapter will only focus on transition from congregate settings. Community transition means:

• Facilitate the transition of individuals with significant disabilities from nursing homes and other institutions to home and community-based residences, with requisite support and services.
• Provide assistance to individuals at risk of entering institutions so that the individuals remain in the community.

Institutions are:

• Nursing homes
• Intermediate care facilities for individuals with intellectual disabilities
• Hospitals, including medical and psychiatric
• Sheltered workshops
• Adult day programs
• Psychiatric institutions
• Prisons
• And other institutions

Strategies to Transition People Out of Institutions

Transitioning people from institutions to the community can seem like a daunting task. While it may take time, and CIL staff may need to try various strategies, it is doable. The consequences of not transitioning disabled people to the community are so significant that it might be the most important work that a CIL can do.

Whether a CIL is transitioning a disabled person from a hospital emergency room, psychiatric institution, group home, nursing facility, prison or another facility, the services and supports that must be in place are similar. The individual needs at least temporary housing in a non-congregate setting, a plan to move to permanent housing, personal assistance, and other supports as required, plus necessities including food, medication, clothing, durable medical equipment, and consumable medical supplies, wound care supplies, incontinence supplies, etc..

Strategies that CILs learned for transitioning people relatively quickly from institutions to the community during the COVID-19 pandemic can be used in the future, even if there is not an existing public health emergency. The strategies discussed in this chapter are effective in transitioning people with disabilities into the community from a variety of institutions or congregate settings.

While what is needed for a disabled person in terms of transition planning may stay static, regardless of the congregate setting or institution where an individual lives, access to the individual and the facility may vary. For example, some nursing facilities may be more amenable to collaborating with CILs to discharge people with disabilities into the communities than others.

Certain institutions, such as psychiatric facilities or prisons, and other carceral facilities, must engage in legal procedures before a person can be released. The fact that a disabled person’s release must be adjudicated does not mean that CILs cannot support people who have been committed to psychiatric facilities or received prison sentences in transitioning to the community. Probate courts or other adjudicators of civil commitment to psychiatric institutions might take the fact that a person who has been committed has housing, a support network, and a well-thought-out plan into consideration when determining if an individual is ready for release from a psychiatric facility.

While advocacy efforts from a CIL may not substantially reduce a prison inmate’s sentence, it may support an inmate with a disability in receiving parole. Again, a well thought out plan combined with a strong support network can help in release.

Partner with Other Organizations and Agencies

It is critical to engage with partners when working with consumers to transition them out of an institution. Every state has a protection and advocacy agency that can be an invaluable resource.

Protection and advocacy organizations have statutory authority to access institutions that CILs do not. For example, staff from these organizations must be allowed into nursing facilities, group homes, and other facilities to serve as an advocate or investigate claims of abuse or neglect in certain circumstances. Staff from protection and advocacy for individuals with mental illness program must be allowed into psychiatric facilities. Staff from this program also may have additional access to institutions, depending on state law. Partnering with these organizations can help CILs with efforts to transition someone out of a facility when access to an individual or to a facility is a barrier.

CILs should also consider partnering with individuals, agencies, and organizations that have resources that CILs do not. This could include food banks, equipment closets, municipal social workers, and other organizations that can provide assistance during a transition.

During the COVID-19 public health emergency Atlantis Community, Inc., a CIL based in Denver, Colorado, partnered with nine agencies and organizations, including personal assistance services providers, the City of Denver, state government including the department of health, department of housing, and disability advocacy organizations. This coalition combined forces with support from CARES Act funding to temporarily move people out of congregate settings, including hospitals and nursing facilities, which became even more dangerous during the PHE, and move people temporarily into hotels and more permanent housing in the community.

Partner with Institutions

Relationships can be key to advocacy. To facilitate community transition, CILs can build and nurture relationships with the staff at the facilities where they are working to transition consumers. Try to get the institution to support and help plan for a consumer’s release from the institution. You may need to remind staff from the institution that the fact that the person is ready for release means that they have successfully done their job.

Programs that Can Support Transitioning into the Community

Money Follows the Person

A key program that may be available is Money Follows the Person (MFP). MFP allows states to use their long-term care spending for home and community-based services (HCBS) instead of the typical institutional care. This allows consumers to seek services, such as personal assistance, in the community instead of being forced to remain in a nursing facility to meet their needs. Not all states have the MFP program, so it is essential to check which states have MFP available. If your state does not have an MFP, you can also work with your state’s Medicaid agency to advocate for home and community-based services.

Although this chapter is about transitioning individuals out of institutions, CILs need to be aware of and facilitate systems advocacy initiatives necessary to facilitate the transition. This includes partnering with local housing authorities to increase accessible, affordable integrated housing, increasing employment opportunities for people with disabilities, and advocating for increased home and community-based services.

Making Connections and Effective Outreach

One of the first steps in planning for the initial contact is establishing a relationship with the institution. The Centers for Independent Living in Arkansas found that one of their best strategies involved the nursing home staff from the beginning. The response has not always been positive, but not involving them ensures “at the very least, a lack of cooperation and, at the worst, sabotage against your efforts.” They found the nursing home social workers to be one of their greatest assets. Social workers helped the consumer to fill out required applications, switch social security payments to the individual, go shopping for necessities, find a local doctor, and ensure they received their medications and personal belongings from the nursing home before leaving. The Centers found that establishing a working relationship with the nursing home staff significantly reduced their workload. Other groups have suggested offering training from the local Center for Independent Living to the nursing home as a way to establish a positive relationship.

In some instances, congregate setting staff may need to be more receptive to having CIL staff visit someone in the facility. If the institution is a nursing facility, every state is required under the Older Americans Act to have an Ombudsperson Program to help address complaints in the long-term care system. An ombudsperson advocates for nursing home residents and can assist residents in resolving quality-of-care complaints. Work with the nursing home ombudsman because they are familiar with and connected to the facility’s people.

Having established relationships with staff inside of nursing facilities can be especially helpful during public health emergencies. During the COVID-19 pandemic, it was often impossible for CIL staff, members of the public, and family members to gain entry to nursing homes as these facilities were hard-hit by the virus. Nursing home staff and social workers played a vital role in reaching and supporting consumers. Transition specialists were able to successfully arrange for support and services through alternative methods, including telephone calls, use of video conferencing platforms, mailing or faxing documents, and other methods. In some instances, CIL staff met with individuals at the outside window to their rooms at nursing homes to provide services.

Working with Family Members and Other Support People

While some people lose contact with their family and friends when becoming institutionalized, many in nursing homes and other institutions have family members and friends who can assist. Get families and friends involved in the transition process as early as possible if possible. A good support system is essential and increases the likelihood of successful transition.

The ILRU guidebook ABCs of Nursing Home Transition: An Orientation Manual for New Transition Facilitators provides some practical first steps in working with family members and others who can provide support. Some key strategies include:

• keeping the family or friends informed of progress; and
• inviting them to attend planning meetings and the future home of the consumer to help envision the disabled person living independently.

Regardless of the circumstances, it is vital for the disabled person to choose if and how family members or friends are involved in their transition. Ensure CIL staff listen to the consumer throughout the transition process.

Friends and family members can also be helpful when supporting someone transitioning to the community. These individuals may be able to serve as providers of personal assistance in states with consumer-directed services. However, some family members may actually oppose the move to the community. Communicate with the consumer to ensure their choices are being respected and prioritized.

This support can be especially important during emergencies. During the COVID-19 pandemic, it was often difficult to find and maintain personal assistance services due to the impact of COVID, fears concerning COVID, and the impact on caregiving work. Family and friends played a vital role in supporting individuals who transitioned to the community before and during the pandemic.

It is important to recognize that it may be necessary for a CIL to assist in providing PPE, including masks, face shields, gloves, and other items, such as hand sanitizer, to caregivers. Helping safeguard the health and well-being of both consumers and caregivers is crucial, especially during public health emergencies.

Reaching and Supporting Individuals in Congregate Settings

In working with people with disabilities, advocacy is often defined as representing preferences and needs of a consumer as they articulate those preferences and needs. This is to say that the role of the advocate is not to determine what is best for the person but to pursue the interests of the person as they have defined them.

This includes supporting the individual in defining and clarifying their own goals and desires. Advocacy should never replace self-advocacy by the individual. Sometimes advocacy is necessarily embedded in transition work.

Some issues transition facilitators encounter can be:

• resistance of congregate setting staff when an individual wishes to move to the community because of concern over safety or access to medical treatment;
• family (or guardian) concerns about/or opposition to community placement;
• limited experience of the individual in living independently;
• accessing housing with poor or no credit history; and
• obtaining and maintaining utilities, food, and household goods, when the individual has limited financial resources or income.

Establishing a Relationship with the Consumer: Supporting Their Planning Process

The goal for individuals who want to move out of an institution is to regain control and be in charge of their own lives. It is critical for the person moving to be in charge of all the steps and decisions during the transition to living in the community. This may be difficult for people who have been living in institutions for a long time whose preferences were not acknowledged. Many people living in institutions have been told and come to believe they no longer have the ability or the right to be in charge of their own life.

Some individuals may require additional support to take the lead in planning meetings. If this is the case, do not automatically take charge, but rather encourage the individual to be an active participant in the process. As the individual gains confidence, gradually step back. The individual should never feel as though they were in the transition process without support.

Consider the following to ensure consumers feel supported when leading the transition process:

• The person moving must attend all meetings. A planning meeting cannot be held without the person in attendance and able to participate fully.
• The person moving chooses who shall attend the meetings. Anyone not invited by the person moving is not allowed to attend the meetings. This may result in excluding family members or professionals who are accustomed to attending all such meetings in the past.
• Meetings are held in the community as often as possible. This is to remind everyone of the goal of being a part of the community. However, do not let facility rules against this be a barrier to assisting the person in transitioning.
• Non-paid people (community members, family, friends, and others) who care about the individual may attend the planning meetings when requested by the individual. This helps to begin to build the personal support system that the person will need once they are living in the community.
• The individual moving to the community or someone selected by the individual should lead the meetings.

Following Up: Ensuring Success

It is helpful to be with the individual during the actual transition and ensure that all of the household equipment and goods, medical supplies, food, and other necessities, are in the apartment/house. If the individual agrees, have frequent contact after the transition, particularly in the first weeks and months. For the first few weeks, it is important to check in with the consumer regularly in person, by phone, or text, and to let them know that you are available. It is a lot easier to solve problems when they are small than to wait until they become big issues. The frequency of contact should gradually decrease depending on the level of support required by the individual.

Specific Considerations During Public Health Emergencies

Providing transition services during a public health emergency can be challenging. However, continuing transition during a PHE is more necessary than ever. This was illustrated during the COVID-19 pandemic with high levels of infection and deaths in congregate settings. CILs must be prepared to support consumers in transitioning out of congregate settings during public health emergencies.

Centers should ensure they have access to technology that will enable them to reach consumers in a variety of ways. This includes phone and video meetings on platforms such as Zoom, Microsoft Teams, or GoTo Meeting. Make sure the platforms the facility provides are accessible to the consumer. If possible, provide accessible tablets or smartphones to consumers in institutions as permitted. This will not likely be permitted in carceral facilities, may be permitted in psychiatric facilities, and should be permitted in nursing facilities and group homes and ICFs.

Think about how CIL staff will assist individuals with obtaining household items including furniture, dishes and other items they will need to live at home. Traditionally, CIL staff may have gone to the store with or on behalf of a consumer to find these items. During a public health emergency, it will likely be necessary to purchase these items online and have them delivered. Decide where CIL staff will purchase these items, who is authorized to make these purchases, and how consumers will be assisted in receiving deliveries and unpacking items if they need support. Develop written standard operating procedures.

It is likely that despite the public health emergency, consumers may need in-person support and assistance. In addition to having the appropriate PPE available, Centers should establish safety policies and procedures that outline when and how in-person support may be provided. Consider social distancing, use of PPE, safety of all involved, and any other factors related to the public health emergency. Be prepared to support consumers if outside vendors will be delivering furniture or other items to their home. All involved should follow safety requirements.

Diversion

The best way to keep people in the community is to never have them leave it in the first place. Diversion can prevent placement into an ICF and other institutions. CILs should be mindful of ways they can prevent people from being institutionalized.

This can include:

Educating Consumers About Community Living Options Make sure consumers, and where relevant, family members, know about personal assistance and other resources that support people living in the community, including CILs.

Emergency Relocations Toolkit: A toolkit is provided by the National SILVER (Save Institutional Lives Via Emergency Relocations) Coalition and provides information on how Centers for Independent Living and other community-based organizations can access emergency relocation funding through FEMA for federally-declared disasters. While resources in this document may not be applicable in all public health emergencies, this resource is an essential step in reviewing the process, lessons learned, and successful nursing home transition during the COVID-19 pandemic.

Effective Transition Programs at CILs:

• ABCs of Nursing Home Transition: An Orientation Manual for New Transition Facilitators (ILRU): https:// www.ilru.org/abcs-nursing-home-transition-orientation-manual-for-new-transition-facilitators
• Community Integration: A Holistic Approach to the New Core Services for Transition & Diversion (ILRU): https://www.ilru.org/training/community-integration-holistic-approach-new-core-services-for-transition-diversion

Additional Resources:

• Olmstead Decision: www.olmsteadrights.org
• Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. https://www.ada.gov/resources/olmstead-mandate-statement/
• SILVER Emergency Relocations Toolkit: https://www.ilru.org/emergency-relocations-toolkit
• FEMA Addendum: Delivering Personal Assistance Services in Congregate and Non-Congregate Sheltering: https://www.fema.gov/sites/default/files/documents/fema_personal-assistance-services_ addendum_12-07-2020.pdf
• Strategies and Resources to Reduce Homelessness | Independent Living Research Utilization (ILRU): https:// www.ilru.org/strategies-and-resources-reduce-homelessness
• Expanding CIL Capacity Through Youth-Driven Transition Services | Independent Living Research Utilization (ILRU): https://www.ilru.org/expanding-cil-capacity-through-youth-driven-transition-services
• How CILs Can (and Should!) Support Consumers in the Criminal Legal System | Independent Living Research Utilization (ILRU): https://www.ilru.org/training/how-cils-can-and-should-support-consumers-criminal-legal-system
• Community Integration: A Holistic Approach to the New Core Services for Transition & Diversion (9 Hours) | Independent Living Research Utilization (ILRU): https://www.ilru.org/training/community-integration-holistic-approach-new-core-services-for-transition-diversion
• Transitions Out of Institutions (ACL): https://acl.gov/HousingAndServices/Transitions

During public health emergencies, it is more important than ever for a CIL to continue to provide a high level of services and to be able to expand and offer additional programs as needed. CILs are mandated to be consumer-led and responsive to the needs of the disability community.

If a CIL does not continue to provide support and services during a public health emergency, often no one else in the community will. Without the services offered by a CIL, consumers are more likely to experience devastating effects from a public health emergency as we saw during COVID-19. This could include being disproportionately excluded from services and treatments, leading to a detrimental inability to access essential healthcare services. This exclusion frequently results in the worsening of health conditions, worsened by the loss of independence. Many people with disabilities face the risk of being placed in an institution, a situation that can contribute to severe sickness and even death. The persistent disregard for the needs and rights of people with disabilities leads to isolation, as well as an increase in incidents of abuse and neglect. (National Council on Disability).

Enhancing or expanding services can be challenging given that CILs often don’t have enough funding or staff support. Chapter 4 of this toolkit describes how CILs are experienced in meeting consumer needs during a public health emergency since they provided services during the COVID-19 pandemic. Additionally, this chapter addresses the need to sustain services to better prepare consumers for future public health emergencies and to address long-standing challenges facing people with disabilities.

Prior to the Public Health Emergency

CILs should always be prepared and ready for a public health emergency before it happens. It is important to develop policies and procedures so that the CIL will have a baseline to work with when a public health emergency occurs. Plans need to cover how the CIL will continue to deliver services to consumers. Additionally, the plan should anticipate what employees will need to do, how they will be kept safe, when they will work, and what technology they will need. The plan should also include steps to identify who will take over critical duties if one or more key employees are affected by the public health crisis. Finally, the plan should address how the CIL will be able to quickly meet the needs and increased demand for services from consumers.

Having detailed but flexible plans in place will help increase the CIL’s ability to provide services, ensuring mandates are followed, responding to increased needs, while also protecting its employees from getting sick from public health emergencies.

Educate and Inform:

Educating consumers and sharing essential information can help people with disabilities to be better prepared before, during and after public health emergencies. This can go a long way in protecting consumers’ health, safety, and independence.

Educate and inform consumers about their rights during a public health emergency and how to prepare before it happens.

Collaborate with Local Public Health Departments

A CIL should work to build a strong, mutually beneficial relationship with public health departments before a public health emergency occurs.

It is important that CILs work with local and territorial or state public health departments to make sure consumers have access to:

• accessible information about the public health emergency,
• services, and
• any available vaccines or other prophylactics.

Ways to build productive relationships with public health departments include:

• hosting meet-and-greet events with public health officials,
• asking to be invited to public health meetings and events,
• inviting public health officials to CIL meetings and events,
• asking to be included in their public health emergency planning process, and
• creating Memoranda of Understanding (MOUs) with public health departments.

Working to provide training with the goal of educating public health employees about disability concerns before public health emergencies will benefit both the CIL and, more importantly, consumers. Training topics could include:

• providing accessible communications,
• providing accessible public health services,
• conducting accessible and inclusive meetings,
• the Independent Living philosophy, and
• the disproportionate effect of public health emergencies on people with disabilities, especially multiply marginalized disabled people.

During the Public Health Emergency

It is critical that CILs continue to engage in the following activities during a public health emergency. These activities will help CILs handle higher demand and meet increased requests for services by consumers.

Plans

Since every public health emergency is unique, emergency plans must evolve and be updated to meet the needs of consumers as they relate to each public health emergency. Things to think about when reviewing and revising plans include evaluating the situation that caused the public health emergency, the expected duration and severity of the public health emergency, and the time of year. If the emergency is long-term, it will likely be necessary to continue to update plans as the emergency changes and new information becomes available.

Educate Consumers and others who have Disabilities

Provide information about a specific public health emergency or emergencies in an accessible format to consumers. Share educational information on social media, by email, in newsletters, through virtual presentations, and any other means available.

Work with Public Health Departments

Work with local and territorial or state public health departments throughout the emergency to ensure that public health services are:

• Accessible. This means spaces meet Americans with Disabilities Act and Section 504 of the Rehabilitation Act requirements.
• Inclusive. This means people with disabilities, especially multiply marginalized disabled people, feel included and are welcomed when using the service. Spaces may need to go beyond ADA and Section 504 requirements.
  • Example: An inclusive vaccine site might have American Sign Language Interpreters, quiet space, fidget devices or lowered lighting even though it is not required under the ADA and 504.

Inclusive spaces help to make sure that everyone can participate in the activity, regardless of race, ethnicity, country of origin, class, sexual orientation and gender identity, disability, and other marginalized identities.

Services offered by a local public health department include sharing information, tracking cases and potential sources of outbreak, hosting and supporting vaccine clinics, testing, and distributing personal protective equipment. CILs can support this work and people with disabilities by partnering with their local health department.

If a CIL has not yet formed a strong relationship with their local public health department, now is the time to do so. Make sure that public health departments are involved in the CIL’s efforts to support consumers in maintaining health and independence during public health emergencies.

Areas Where a CIL May Need to Expand or Enhance Services During a Public Health Emergency

Information and Referral

During a public health emergency consumers will have the same needs as they would at any other time. However, they will almost certainly need additional services to address needs they did not have before the public health emergency. CILs should anticipate a significant increase in information and referral requests during an emergency and expect this when planning. Most CILs saw a significant increase in information and referral requests during the COVID-19 pandemic.

Example: A consumer who needed accessible housing before a pandemic will still require accessible housing during the pandemic. During a public health emergency, they may also need information about vaccines or accessible transportation to a vaccine site.

Requests for information and referral may be more complicated than usual because referrals will likely be made to different community resources than usual. I&R staff will also need to do research to find new information and resources. This will result in staff spending time conducting research online and attending meetings where resources are shared. All staff should be encouraged to share helpful resources and information during the emergency as this can greatly assist I&R. Because information and referral are such a critical function of a CIL during this time, additional employees should be trained so they can serve as backup during busy times or if primary staff cannot work due to illness.

Assistive Technology Distribution and Training

Delivery and repair of assistive technology (AT) will very likely be delayed or disrupted during public health emergencies. This leaves consumers having to deal with both the impact of the public health emergency and the loss of their technology. For many individuals, having access to assistive technology devices is key to their independence and ability to work. The absence of appropriate AT can also lead to new or more significant disability related impacts, illness, loss of independence, and an increased risk of being placed in a nursing facility.

As observed during the COVID-19 pandemic, CILs should be prepared to assist consumers during public health emergencies in acquiring and delivering new and gently used assistive technology or having a trusted partner to take referrals. Providing technology to consumers will allow them to access virtual meetings, have increased social opportunities and reduced isolation, and access to healthcare appointments. CIL staff should also be prepared for consumers to request training in using new technology. Equipment can be delivered or picked up at the CIL office. Consider providing easy to read getting started instructions, recording easy to understand training videos or audio tracks and making them available online, and other methods that will help consumers get started with using the equipment. Staff can also provide individualized and group trainings virtually. Be mindful that consumers may not have advanced knowledge of technology and broadband Internet access may be unavailable for some individuals. Provide basic getting started information and training in multiple formats as a way of getting around these potential barriers.

Delivering Independent Living Core Services Virtually

During public health emergencies when it is necessary for people to maintain distance from each other, CILs should be prepared to provide services virtually and remotely. The good news is that CILs have been doing this since early 2020 during the COVID-19 pandemic. CILs have offered a range of services virtually including cooking classes, peer support groups, independent living skills training, and others. CILs have taught consumers how to use Zoom and other platforms, allowing them to take advantage of video conferencing. These skills can be used by staff and consumers in future public health emergencies and in times where it is more convenient for consumers to participate virtually.

It is important to remember that not every consumer will have access to high-speed internet or devices that can access the internet. CILs need to continue to be creative in finding ways to include these consumers in programing. This can include seeking donations of used technology and applying for grants from public and private sources.

Distribution/Delivery of Food, Household Goods, and Supplies

Although not a core service, CILs have been called upon to distribute and deliver food and water, household goods, PPE, hand sanitizer, and other supplies during the COVID-19 public health emergency. This makes sense because CIL staff are peers and have the trust of consumers. Also, CILs know where many individuals with disabilities live in the community and how to best get in touch with them. Assume that CILs will be called upon to distribute food and supplies in future public health emergencies. CILs should develop a plan for how to accomplish this. Options could include establishing a formal partnership with an existing program in the community such as Meals on Wheels or a food bank.

Consumer Check-Ins

COVID-19 caused people with disabilities to be isolated which increased depression and other health concerns. (National Council on Disability). CILs have played a critical role in ensuring consumer well-being by conducting check-ins. A check-in is when CIL staff or trained volunteers reach out to consumers to see how they are doing and if they have unmet needs during a public health emergency. Many CILs began check-ins early in the COVID-19 pandemic and continued to do so for an extended period. These contacts can also help a CIL to better identify community needs and where best to direct time and resources. During check-ins, CILs can establish if a consumer is in imminent danger, or in need of food or water, personal assistance services or life-sustaining equipment such as durable medical equipment.

Check-ins can be done by:

• phone,
• text (with prior approval),
• email,
• mail,
• or another method.

Check-ins can assist consumers in solving problems that may otherwise increase chances of getting sick, losing independence, or being placed in a nursing facility. CILs may want to consider training peers, including volunteers, to assist with consumer check-ins.

Programs and Initiatives that CILs Have Established and Strengthened to Help Consumers During the COVID-19 Pandemic

CILs will need to continue to provide essential services that they did before and during the public health emergency. These include the five core services required by the Rehabilitation Act and those mandated in any other federal, state, or local contracts. However, CILs also established a number of new and innovative programs during the COVID-19 pandemic.

Many of the programs and initiatives that CILs established or strengthened during the COVID-19 public health emergency can benefit consumers in future public health emergencies or even during non-emergencies. CILs should consider looking to local foundations and other funding sources to sustain or expand these programs.

One possibility would be for CILs to partner with local public health departments in pursuing grants. It is possible public health departments may have funding for initiatives, especially programs to decrease disability bias or increase access to public health programs and services for people with disabilities. Please click on the Building Capacity with Federal Funding Opportunities toolkit for other ideas about funding sources.

Some of the programs and initiatives CILs may have developed or strengthened during the COVID-19 public health emergency might include:

Being a resource of accessible information about COVID-19, prevention and mitigation steps, and the vaccine/vaccine eligibility. CILs can and should be a source of accessible information in all public health emergencies, as well as outbreaks of influenza and other diseases. Providing this information in an accessible format can be a great opportunity for CILs and public health departments to collaborate.

Producing accessible materials. CILs can and should produce accessible electronic and print materials about how consumers can maintain their health during future public health emergencies and disease outbreaks, as well as preparedness plans for personal assistance during public health emergencies. This could be another opportunity to collaborate with public health departments.

Engaging in outreach to reduce isolation among people with disabilities. One of the things that CILs noticed during the COVID-19 public health emergency was the degree to which people with disabilities were isolated. Many CILs developed ways to reach out to consumers to check in with them and to provide information when needed. Not only will this type of outreach be necessary in future public health emergencies, but it is a safe assumption that some consumers, particularly ones transitioning out of institutions, could benefit from this during times when there is no public health emergency.

Advocacy for disability rights. In addition to typical advocacy work, CILs found the need to advocate in new areas.

This included advocacy for:

• equitable Crisis Standards of Care,
• access to vaccines, and
• telehealth access. Although telehealth use has highly risen in the pandemic and it reduces barriers to healthcare access for some disabled people, its continued use after the end of the public health emergency is in question. Given CILs will have to support advocacy efforts for telehealth for consumers who want it and accessible telehealth for people who are Deaf, hard of hearing or do not read print due to a disability, they should consider looking for funding sources for this initiative.

Protecting Employees and Volunteers

CILs have a unique responsibility to safeguard their direct service staff. These individuals are the frontline workers and primary support for many, providing essential services that people with disabilities heavily rely on. Their health and safety are critical not only to the organizations they represent but also to the communities they serve. Below are some key strategies CILs can implement to keep their direct service staff safe during public health emergencies.

Promote Health and Hygiene Practices: CILs should provide training to staff on best practices for maintaining personal hygiene, as recommended by trusted health authorities like the World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC). This includes regular hand washing, use of hand sanitizer, cough and sneeze etiquette, and wearing masks properly when required. Provide necessary supplies such as soap, sanitizers, masks, gloves, and other PPE.

Implement Flexible Work Arrangements: Where possible, CILs should consider flexible work arrangements, such as remote work or staggered work hours, in order to reduce the risk of exposure. In situations where direct service staff cannot work from home, due to the nature of their roles, consider adjusting workflow to minimize contact with others, such as using individual offices or partitions, and limiting the number of staff in shared spaces.

Maintain Safe Work Environments: Regular cleaning and disinfecting of workspaces should be a priority. CILs should also ensure there is adequate ventilation in indoor workspaces, and where possible, encourage activities to be moved outdoors or conducted virtually to minimize risk of transmission.

Enforce Social Distancing Measures: When direct interactions are necessary, CILs should ensure that staff, volunteers, and consumers maintain a safe distance as recommended by health authorities. This can be facilitated by markings or signs that denote safe distances, rearranging furniture, or arranging services to limit close contact.

Develop and Implement Safety Protocols: CILs need clear protocols for dealing with suspected or confirmed cases among staff, volunteers, and consumers. This includes procedures for reporting illness, contact tracing, isolation, and potential facility closures. Be sure to communicate these protocols effectively to all stakeholders.

Prioritize Mental Health: Recognize that public health emergencies can significantly impact mental health due to stress and anxiety. Providing support services such as teletherapy, employee assistance programs, and other mental health resources can go a long way toward maintaining staff wellbeing.

Encourage Vaccination and Regular Testing: When vaccines or testing are available, encourage and facilitate access for staff. Clear communication about the benefits, safety, and effectiveness of vaccines and regular testing is crucial to mitigate fears and misconceptions. CILs may choose to require vaccinations recommended by the CDC for employees and volunteers.

Keep Communication Lines Open: Regularly update team members on any changes or updates to procedures, new information about the health crisis, and any other relevant information. Clear and transparent communication can help to reduce concerns and ensure everyone understands their roles and responsibilities in keeping each other safe.

Ensure Adequate Staffing Levels: Plan for possible staff absences due to illness or caretaking responsibilities. Cross-train staff members to perform essential functions so the organization can operate even if key staff members are absent.

Provide Training and Resources: Equip staff with the knowledge and resources they need to stay safe and carry out their roles effectively during a public health crisis. This includes training on new protocols, access to reliable health information, and resources for personal support. It is also important to ensure team members have access to technology that will enable them to perform their roles.

Public health emergencies, such as the COVID-19 pandemic, create new challenges for CILs. However, with thoughtful planning and consistent implementation of safety measures, organizations can help protect their direct service staff and, by extension, those served by the Center.

Human Resource Considerations

Many nonprofit organizations, including CILs, do not have the financial ability to have a formal human resource position on staff. However, it is vital that CILs prioritize awareness of legal requirements and other aspects of human resource functions during a public health emergency. It is important to stay up to date with local, state, and federal laws related to employment and public health. This includes understanding rights and obligations under laws such as the Family and Medical Leave Act (FMLA), the Americans with Disabilities Act (ADA), and the Occupational Safety and Health Act (OSHA). These laws can have significant implications for sick leave, remote work, and workplace safety during a public health emergency. Additionally, it will be essential to establish written procedures around how staff should report illness resulting from the public health emergency, how that information will be safeguarded and kept confidential, and how employees, volunteers, and consumers will be notified in the event of exposure.

These are just a few examples of how a Center may be impacted from a human resources point of view. CILs should take time now to consider their current capacity in relation to human resources and how they might take steps to make improvements if needed.

Sources

• 2021 Progress Report: the Impact of COVID-19 on People with Disabilities
• National Council on Independent Living