Since this release, AAPD and CDT have expanded their partnership and have worked together to bring awareness and provide policy solutions that benefit people with disabilities in their interactions with technology, particularly AI and algorithmic systems. This report (released in tandem with a shorter brief) furthers this important work by specifically providing recommendations for disabled community members, disability rights and justice advocates, government agencies, and private-sector AI practitioners regarding best practices for ensuring that people with disabilities are able to enjoy the benefits of AI and algorithmic technologies while being safeguarded from their risks.

It does this by presenting major areas of concern for people with disabilities when they interact with technologies in the context of several major systems: employment, education, government benefits, information and communications technology (ICT), healthcare, transportation, and the criminal legal system. Some of these systems (including employment, education, law enforcement, and healthcare) were briefly covered in the “Centering Disability” report, and this expands on that work; some areas are entirely new. These are, of course, not the only rights-impacting areas wherein people with disabilities are affected by technologies. However, providing recommendations for inclusion for people with disabilities in these high-stakes areas can hopefully serve as a useful resource, building on AAPD and CDT’s earlier work in this area. .

In the midst of a significant expansion of anti-DEIA measures and a significant decrease in the regulatory ambition of the federal government, it may seem a strange time for CDT and AAPD to engage in this work, and particularly to focus on federal agency recommendations. However, it remains as important now as it was in 2021 to ensure that people with disabilities are properly considered in the development of AI technologies and regulations. Further, at least some of the recommendations geared towards federal agencies may be applicable to state and local agencies as well. Further, even if agencies do not act on these recommendations in the short term, they will likely remain useful touchpoints for any future attempts to create a disability-inclusive AI ecosystem.

Disabled people are at a specific risk of discrimination when interacting with AI and algorithmic systems, for several reasons. First, many AI and algorithmic tools are trained on pattern recognition, and make determinations based upon typical patterns within any particular dataset. However, many disabled people (by virtue of their disability) exist outside of typical patterns — they may have gait differences, vocal differences, atypical eye movements, etc. These tools may inadvertently discriminate against people with these sorts of disabilities, particularly when they rely on biometric inputs.

Second, AI and algorithmic technologies create outputs based on inputs, which are again derived from datasets (sometimes referred to as “training data”). Oftentimes, these datasets are not properly inclusive of people with disabilities — they may have inaccurate data about disability, undersample or improperly tag information as being related to disability. These can all lead to AI tools that can discriminate against disabled people, and potentially contribute to negative outcomes.

And third, many people with disabilities are multiply-marginalized, meaning that they are both disabled and identify as members of another marginalized group (like a disabled person of color, or a disabled LGBTQ+ person). Many AI and algorithmic tools have been shown to pose unique risks to other marginalized groups as well, meaning that multiply-marginalized disabled people are at a particular risk of facing discriminatory outcomes as a result of their interactions with these tools. For these reasons and more, this partnership is an important step towards mitigating the potential harms of technology-facilitated disability discrimination, while bolstering innovation that allows for the development of helpful tech tools for people with disabilities to flourish.

People with disabilities can benefit from AI, algorithmic tools, and other technologies. But these tools can also serve as vectors of discrimination, and concerns over accessibility, bias, and privacy abound, particularly when biometric data is involved. Ensuring that people with disabilities are centered in the creation, deployment, and auditing of these technologies and of the policies that govern them can help ensure that the promise of these tools can eventually be realized for all.

Read the full report by AAPD’s Henry Claypool and CDT’s Ariana Aboulafia here.

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Contact: Jess Davidson, jdavidson@aapd.com

WASHINGTON – This week, the Department of Transportation announced the finalization of its regulation to address safety and accessibility for disabled air passengers. The new rule marks major progress on a critical safety issue for the disability community, made possible by decades of advocacy by disabled people. AAPD is proud to have been part of those efforts, submitting comments to the Department of Transportation co-authored with our partners at Hand-In-Hand that included stories from the disability community, holding press conferences with our partners at United Spinal, the Service Employees International Union (SEIU), and the National Disability Rights Network (NDRN) about the need for strong training programs for airport workers who assist disabled passengers and greater dignity for air travelers with disabilities. We also joined numerous letters led by Paralyzed Veterans of America and their disability coalition focused on advancing the Air Carrier Access Act.

This historic regulation sets new standards for assistance, mandates hands-on training for airline employees and contractors who assist passengers with disabilities and handle mobility equipment, and specifies actions that airlines must take to protect passengers when mobility equipment is damaged or delayed. It also requires that airlines notify disabled passengers of the status of their equipment as it moves through standard, and provides them with information about their rights in the case of damage or destruction of a wheelchair or scooter.

“Air travel has long posed a substantial safety risk to disabled people’s independence, safety, and economic stability,” said Maria Town, AAPD President and CEO. “I applaud and am grateful for the leadership of the Department of Transportation and Secretary Buttigieg and Kelly Buckland, former AAPD Board Member and current Department of Transportation Disability Policy Adviser  Disabi for their leadership  in addressing this public health and safety issue that has caused expense, injury, and even death for disabled people for far too long. For wheelchair and scooter users, like myself, our mobility equipment is our freedom and independence, which is why an estimated 1 in 10 disabled people do not fly because of fear of damage to their equipment.”

Town continued, “For many, air travel may be necessary to participate in their dream job, to be present at a loved one’s hospital bedside, to attend family and friends’ weddings, graduations, and funerals, or simply to enjoy the experience of exploring new places. No one should be forced to make the decision between these life experiences and momentous occasions, and their independence.”

“Yet, far too many disabled people are forced to make such choices every day. Those who choose to travel do so with the very real possibility of injury, destruction, or even death hanging over them. Those who understandably choose to preserve their independence and safety do so feeling the acute pain of missing out because of lack of accommodation. These new requirements are a long-awaited improvement to ensure that people with disabilities can fly with less fear,” Town concluded. 

The regulation establishes rights for disabled passengers and requirements for airlines, including:

• Requiring airlines to ensure disabled travelers’ safety, and that disabled passengers are treated with respect by airline workers, including requiring specific training for all workers who assist disabled passengers;
• Setting standards about wait times, ensuring that disabled passengers who receive transportation assistance by airline workers are not made late or kept waiting by the airline before or after their flight
• Requiring that airlines protect disabled travelers’ personal mobility equipment, and says people cannot be separated from their wheelchair or scooter for more than 24 hours after arrival on a domestic or short international flight or 30 hours on a long international flight
• Requiring that when airlines do cause damage to disabled passengers’ mobility equipment, the airline must reimburse the traveler for expenses related to equipment damage,as well as costs related to missed flights or other problems caused by airline worker delays
• Setting standards to ensure timely information is provided to disabled travelers before, during, and after travel so that the passenger can make the best choice for themselves when selecting a flight, be updated about where their wheelchair or scooter is during travel, and receive timely updates about what’s happening if their wheelchair or scooter needs to be repaired or replaced after damage occurs

All air passengers can learn more about their rights at FlightRights.gov. If your rights are violated, and you are not satisfied with the airlines’ response, you can submit a complaint to the Department of Transportation here. 

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The campaign launch comes as U.S. DOT issues landmark $50m fine against American Airlines for violating the rights of passengers who use wheelchairs

For Immediate Release: October 31, 2024

Contact: Jess Davidson at jdavidson@aapd.com; 202-975-0960

WASHINGTON, DC – Disability rights and labor communities recently launched a joint campaign in support of accessibility, safety, dignity and respect for both passengers with disabilities and the airport service workers who support them.

The Service Employees International Union (SEIU), the American Association of People with Disabilities (AAPD), the National Disability Rights Network (NDRN) and the United Spinal Association joined forces to highlight the challenges facing passengers with disabilities, call out the airline industry’s failure to meet their obligations under federal law and urge Transportation Secretary Pete Buttigieg to adopt the strongest possible requirements as submitted in comments to the DOT, in response to the proposed rulemaking, from the disability community and SEIU to improve training for airport service workers who support people with disabilities.

In our nation’s airports, the safety and dignity of passengers who use wheelchairs and the service workers who support them are intertwined. Airlines are required by law to ensure passengers with disabilities travel free of discrimination and that airline personnel provide dignified, timely, and effective assistance from workers who are trained in a manner that safeguards their safety and dignity, but they have not invested in ensuring the well-being of passengers and workers. Passengers with disabilities who use wheelchairs report facing numerous rights violations, including bodily injuries and damage to their assistive devices, and concerns regarding unsafe, inadequate, and undignified assistance, while wheelchair attendants often struggle to get by on low-wage, no-benefit jobs.

Passengers and workers both report that workers are not adequately trained, staffed or equipped for their critical work, a point that was underscored this month with a $50 million penalty levied against American Airlines by the Department of Transportation. In the contracting system, airline service providers compete to provide services for the lowest cost, which results in poverty-level wages and poor benefits, which in turn results in high turnover for airport service workers, compounding the issues of training as skilled workers cannot afford to stay in their jobs.

DOT is now considering final rules that could help fix this broken system. SEIU, AAPD, NDRN, and United Spinal have joined forces to urge Secretary Buttigieg to build on the landmark $50 million fine on American Airlines and issue a final rule Ensuring Safe Accommodations for Air Travelers With Disabilities Using Wheelchairs with the strongest possible training requirements as submitted in a comment by the disability community and SEIU in response to the proposed rulemaking, including:

• Enhanced competency-based training where airlines and their service providers must certify that their employees have demonstrated their ability to perform the work before they are allowed to engage a passenger who uses a wheelchair.
• Active, vigorous enforcement of airline compliance.
• A partnership between airlines and their service providers, disability rights groups, and the union representing service workers to develop and implement disability advocate-led training, drawing on the union’s experience of delivering quality training to its members.

A virtual coalition launch call earlier in the month featured the voices of national leaders, workers, and passengers who use wheelchairs, each discussing the urgent need for federal action to protect the safety and dignity of passengers with disabilities and the workers who support them.

“I am a person with a disability who relies on wheelchair assistance and on a mobility device to get through airports. As essential to me as the engineers who build these planes and the pilots who fly them are the people who make it possible for me to get from the airport entry onto the plane and who ensure the safe transportation of my mobility scooter. It is because of these workers that I can do my job, I can see my family and friends, and be there for them in good times and bad. The struggles of airport workers and the passengers with disabilities they support are inextricably linked,” said AAPD President and CEO Maria Town.

Vincenzo Piscopo, President/CEO of United Spinal Association, shared his first-person experience and the stakes for wheelchair users: “Service workers transfer us to an aisle chair that can fit down the narrow width of the aircraft aisles, then push us on board, and then transfer us again into a passenger seat. A lot can go wrong with all those transfers. And believe me, it does – really terrible things happen to wheelchair users way too often.” Piscopo shared a personal story of being injured by an airline employee when no airline service worker could be found to transfer him into an aisle chair. “Airlines outsource this work to airline service providers, who are forced to compete to offer the lowest price instead of the best service. Our service is reduced to a race to the bottom system.”

Jennifer Kumiyama, an actor, advocate, and the citywide accessibility coordinator for the city of Long Beach, CA. Kumiyama echoed Piscopo’s experiences: “For me, transferring from chair to chair requires something like a bear hug, chest to chest with a stranger. I don’t think the people that are responsible for getting us in and out of the airplanes are provided with the tools and the training and the resources they need to successfully and confidently assist somebody in such a personal way. I’m actually flying tomorrow, and I’ve had anxiety for the last week.”

Cecilia Ortiz alleges that she was unfairly terminated from her job as an airport service worker in retaliation for union organizing; the union has filed unfair labor practice charges on her behalf. “I’m proud that my work protects the rights of people with disabilities. But there are problems at work, you know, that keep us from being able to provide the best quality service to passengers.” Ortiz highlighted gaps in her training, particularly around the nuances of different types of disabilities and the ways to properly support different passengers’ needs and communicate respectfully. She continued, “We need better training, and we want better training. We need better pay and benefits so that we can afford to stay in our jobs and not have to go to work sick. And we need the companies to listen to us and respect our rights to form a union.”

“SEIU is proud to join forces as we urge the Department of Transportation’s proposed rule to be approved with the strongest possible training requirements,” said Rocio Saenz, Secretary-Treasurer of SEIU. “Airport service workers are fighting to organize their union to improve their jobs and the quality of service for passengers they support […] Corporate greed from the airlines has left this largely black, brown, and immigrant workforce underpaid and undertrained for critical services they provide. The workers want to provide their passengers with the highest quality support, but these conditions compromise workers’ ability to safeguard passenger safety and dignity as Federal regulations require. Together, we must ensure the safety and dignity of passengers and working people.”

Marlene Sallo, Executive Director of the National Disability Rights Network, summarized the coalition’s demands: “Airport service workers and passengers who use wheelchairs all want the same thing: they want workers who can afford to stay in their jobs. They want workers to receive competency-based training that’s been developed with the relevant stakeholders and properly enforced – and we are currently in a position to make this happen.”

The October event was moderated by Ari Ne’eman, consultant to SEIU and an Assistant Professor at the Harvard T.H. Chan School of Public Health, who summarized the significance of this coalition: “We believe that protecting the safety and dignity of passengers with disabilities and advancing the safety and dignity of the service workers who support them are inextricably linked. The disability rights and the labor communities have shared interests and are collaborating to advance our common dignity and respect.”

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Contact: Jess Davidson at jdavidson@aapd.com; 202-975-0960

WASHINGTON, DC – Yesterday, the United States Supreme Court announced its unanimous decision in Alliance for Hippocratic Medicine v. Federal Drug Administration (FDA) not to roll back FDA approval for Mifepristone, claiming that the plaintiffs did not have legal standing to sue. This drug is used to end pregnancy, as well as treat certain chronic conditions like Cushing’s disease and uterine fibroids. The American Association of People with Disabilities (AAPD) applauds this decision, declaring it a win for people with disabilities who need to access healthcare, including abortion.

Mifepristone (miff-ay-priss-tone) is one of two medications used to end a pregnancy by blocking the development of a hormone called progesterone, which pregnancies need to continue. It is also used to help manage pregnancy loss by helping the body to miscarry safely. It is also regularly used to help manage symptoms of dozens of conditions from Cushing’s disease, Gulf War illness, and cancer because it also blocks the hormone cortisol. In the wake of the Dobbs decision, many states restricted access to mifepristone, which created barriers to effective treatment for many people with disabilities, either seeking abortion care or other kinds of healthcare.

After a comprehensive review, the FDA approved mifepristone more than twenty years ago and determined it to be completely safe and effective. Yet in November of 2022, the Alliance for Hippocratic Medicine sued the FDA, claiming that the FDA went beyond its authority in its approval for Mifepristone. The lawsuit further challenged the FDA’s approval process and the conditions for distributing mifepristone.

Overriding the FDA’s scientific processes for approval and review of any medication on a basis not rooted in scientific fact but in individual physicians’ personal, religious, or political views would set an alarming precedent. This case called into question the future of drugs and treatment control – if it was not under the control of the FDA, whose staff and clinicians are experts in these areas, then whose control would it be under? And if access to mifepristone is denied, what treatment is next?

“A physician’s personal beliefs should not affect whether or not they will prescribe any drug, including medication used for medication abortion,” said Maria Town, AAPD President and CEO. “The Supreme Court rejected a dangerous precedent, one that would have been enacted not in the name of scientific fact or patient safety but because of physicians’ personal beliefs. When a doctor decides to prescribe or not prescribe any medication, the only factor should be what is in the patient’s best interest. The Court made the right decision by dismissing the attempt to restrict access to mifepristone, enabling this drug to stay on the market, and upholding the FDA’s regulatory authority.”

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Contact: Jess Davidson at jdavidson@aapd.com; 202-975-0960 

WASHINGTON – Yesterday, the Department of Health and Human Services announced the finalization of a new regulation to prevent disability discrimination under Section 504 of the Rehabilitation Act. The new rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, is one of the greatest advancements towards health equity for disabled people in American history. 

“The enactment of this rule is the direct result of more than fifty years of advocacy from the disability community, and the community’s influence on the rule shows,” said Maria Town, AAPD President and CEO. “These new regulations are one of the strongest and most meaningful tools our community has ever possessed to defend ourselves against disability discrimination. People with disabilities routinely experience discrimination in medical settings, where ableism can be a matter of life and death. While this rule will not end ableism, it  provides us with a meaningful tool if and when we do encounter bias while interacting with child welfare systems, adoption agencies, and in healthcare settings that receive federal funds. This rule is going to save and lengthen lives, keep families together and keep people in their communities, and improve access to and quality of medical care disabled people receive.” 

“I am grateful for the leadership of Secretary Xavier Becerra and the team at HHS’ Office for Civil Rights for their work to make this historic advancement happen. I am also especially grateful to the members of the disability community who took the time to share their stories with AAPD to help HHS create a rule that centered us as much as possible,” Town concluded. 

Section 504 of the Rehabilitation Act is a law that prevents discrimination based on disability by entities that receive federal funding. 

Specifically, the rule:

• Requires that medical treatment decisions are not made on the basis of ableist biases or stereotypes about disabled people, assumptions or judgments that an individual with a disability will be a burden on society, or dehumanizing beliefs that the life of an individual with a disability has less value than the life of a person without a disability.
• Prohibits, consistent with a recommendation by the National Council on Disability, the use of any measure, assessment, or tool that discounts the value of a life extension on the basis of disability to deny, limit, or otherwise condition access to any HHS-funded aid, benefit or service.
• Defines what accessibility means for websites and mobile applications and sets forth a specific technical standard to ensure that health care and human service activities delivered through these platforms are readily accessible to and usable by individuals with disabilities.
• Adopts the U.S. Access Board’s standards for accessible medical diagnostic equipment, such as exam tables and mammography machines.
• Detailed requirements to ensure that parents and prospective parents with disabilities are not discriminated against in the services provided by HHS-funded child welfare or adoption agencies, including, but not limited to, reasonable efforts to prevent foster care placement, ensure that home assessment tools and parenting skills programs are not biased against parents with disabilities, parent-child visitation, reunification services, child placement, and in- and out-of-home services The rule also requires child welfare agencies to establish procedures for referring qualified parents or prospective parents, who because of disability, need or are believed to need modified or adaptive services.
• Clarifies obligations to provide services in the most integrated setting, like receiving services in one’s own home, appropriate to the needs of individuals with disabilities.This brings HHS 504 rules into alignment with the Supreme Court’s landmark Olmstead v. L.C. decision.

Additionally, the Final Rule updates existing requirements to make them consistent with the American with Disabilities Act (ADA), as many HHS funding recipients are also covered by the ADA. This consistency will improve and simplify compliance. 

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“This program has become my anchor of hope that Black Disabled people can have a community that uplifts one another through the challenges we face in voting and our everyday lives.  It helped me find my voice and helped me build skills to create a new path. One that enabled me to embrace my Blackness and my disability simultaneously. Our cohort dreamed of sharing this space with the world.“

January 4, 2021

2020 has been one of the most challenging years for many of us. Black people, especially Black people with a Disability have been disproportionately impacted by COVID-19 and police brutality.  However, disproportionate impact is nothing new to our Black, Disabled community. Despite the injustices we face regularly broadcasted on the news, despite the statistics and careful analysis of academics proving how systematic racism and inequity exists, and despite Black people and people with disabilities running for office and occasionally winning, our bodies and our well-being are still not seen as a priority when writing or executing law and policy. Additionally, our perspectives and needs are often overlooked when making decisions that impact education and employment practices.

Personally, I experienced numerous challenges learning how to navigate academic, professional, grassroots and political spaces. Oftentimes, the safe spaces of embracing Blackness and Disability are broken up into separate silos, which can make it difficult to articulate how both intersect when advocating for my needs. However, this year, I had the honor of organizing through AAPD’s first cohort of the Fannie Lou Hamer Leadership Program. The Fannie Lou Hamer Program was created for Black Disabled advocates in memory of Black, Disabled voting rights activist Fannie Lou Hamer. Our cohort advocated for voter registration and civic engagement across Black communities leading up to the 2020 national and local elections, one of the most impactful election years of our lifetime.

This was a cohort where my ideas and organizing efforts were embraced and taken to new levels where they had been previously dismissed with other groups. I also learned about so many new nuances and perspectives that I now push myself to be accountable for. This program has become my anchor of hope that Black Disabled people can have a community that uplifts one another through the challenges we face in voting and our everyday lives.  It helped me find my voice and helped me build skills to create a new path. One that enabled me to embrace my Blackness and my disability simultaneously. Our cohort dreamed of sharing this space with the world.

Thus, we launched a campaign called Black Disability Freedom Dreams. We recognized how hard this year has been on the Black community and the Black Disabled community in particular. The converging crises of the COVID-19 pandemic and anti-Black state violence has uncovered long standing inequities that render Black communities socially, economically and medically vulnerable. In this context, inspired by Fannie Lou Hamer’s assertion that “Nobody’s Free, Until EveryBody’s Free,” we were compelled to broaden our drive for voter registration to a broader contemplation of #BlackDisabilityFreedomDreams. The Black, Disabled community encompasses a broad range of people with varied life experiences, needs and relationships to disability, so we hosted this event as an open exchange of ideas about how people who are Black and Disabled imagine and work towards liberation. The discussion was guided by the following questions:

1. Why is voting and integrated civic engagement important to Black people with disabilities?
2. How can we tackle and overcome ableism in our communities? How can people with Disabilities inform the greater population of ableism and how it exists to be more inclusive?
3.  How can people with disabilities overcome impostor syndrome and stereotypes that threaten their day-to-day lives? How can we inform others of Disability stereotypes and how to be more inclusive in more professional and academic environments?
4. What does Black Disability Freedom mean to you?
5. Why is voting/civic engagement important?

AAPD and our entire cohort hopes that these highlights and guiding questions will continue the conversation and inspire others to create a space where we can be our full selves, unapologetically, as we dream and fight for our freedom.  We encourage people to use the hashtags #BlackDisabilityFreedom and #BlackDisabilityDreams continue this conversation to remind the world that we exist, we are here, and our lives and liberation is worth fighting for. We also hope that those who want to engage in allyship will gain insight on how to stand in solidarity with us. We do not have to feel alone on an island with the challenges we face. Our work is far from over, and we have many elections like the Georgia Senate runoff coming. This is a call to listen, learn, and however you can, take action.

Link for the Black Disability Freedom Dreams event on Youtube:
https://www.youtube.com/watch?v=xhAWLAq7UvE&feature=youtu.be

Link for the transcript of the Black Disability Freedom Dreams event:
https://www.aapd.com/black-disability-freedom-dreams-transcript/

By: Jalyn Radziminski, organizer in AAPD’s Fannie Lou Hamer Leadership Program.

Through AAPD’s REV UP Campaign, we are proud to announce our new initiative, the Fannie Lou Hamer Leadership Program. This program is designed for young (ages 18 – 30) Black disabled advocates who are committed to boosting voter registration and civic engagement across Black communities leading up to the 2020 elections. Participants will receive a $1,500 stipend and have the opportunity to create a national nonpartisan campaign that promotes voter registration and participation.

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September 11, 2020

What does it mean to be free? Freedom means to be out of any form of bondage. So, what does it mean to be in bondage? The life of Fannie Lou Hamer expresses a clear example of what it means to be in bondage. Everyone in bondage wants to be free, but only a few relentlessly fight till the end for their freedom. It is easy to give up when the battle gets tough.  But there are some heroes – like Nelson Mandela and Martin Luther King Jnr – that fight relentlessly for their own freedom as well as the freedom of their people, even when this means that they have to suffer persecution. Fannie Lou Hamer falls in this pack too. Much of the freedom we enjoy today came with a price, a price that Fannie Lou Hamer paid, by resisting oppression and injustice, and refusing to be silenced even in the face of death, to ensure that her people were free and empowered. But we must not let her efforts go in vain; we still have much work to do. We still are not totally free yet. We still suffer racism and injustices and oppression. Black people, especially those with disabilities, are still severely marginalized. However, 2020 is the year! This is the golden opportunity to make a turnaround and make our voices heard. Fannie Lou Hamer advocated with her own life to ensure that black people could vote. Now is the time to uphold her legacy by turning up for this election and exercising our civil rights!

No true change happens if we choose not to take an action. For ages, black people have been on the receiving end of all sorts of discrimination. We have fought for freedom and justice and equality, a struggle that cost many of our ancestors their lives. At a time when we could not vote, people like Fannie Lou Hamer rose to challenge the status quo. This did not immediately go down well; they had to suffer severe repercussions. Fannie was fired from her job and chased from the plantation that had been home to her for nearly two decades — just for registering to vote. She lived her life with dreams to raise a family of her own, but the oppressors forced a disability on her – an unconsented sterilization – with the unethical, diabolical aim of controlling the black population. Today, black people with disabilities experience arguably the worst form of discrimination. Ableism is very rampant, probably on the rise. However, this is about to change, only if we allow it – by voting.

Before and during the time of Fannie Lou Hamer, voter suppression, specifically targeted at black people, was real. Unfortunately, despite all the efforts and sacrifices of our heroes from the past, voter suppression is still among us. Black people are still systematically denied the ability to vote, as proven by a study. Black people with disabilities are probably the most affected here. With profound inaccessibility and systemic ableism still plaguing our nation, it is no surprise that voters with disabilities are blocked from the ballot box. But real change will not occur if we do not make persistent, conscious efforts to see it happen. This may involve some sacrifices, but this is the only way we can pave the way for a better life for the next generation of black people, just as Fannie Lou Hammer did for us.

Although Fannie Lou Hamer could not biologically birth her own children due to the forced sterilization she was made to undergo, everyone who supports justice and equality for people of color automatically becomes her child. And, this year, five of her children – students from various universities across the United States – are working with the American Association of People with Disabilities (AAPD), through the Fannie Lou Hamer Leadership Program, to encourage voter registration among black people as well as blacks with disabilities. A recent study has shown that voter turnout surged among people with disabilities in 2018. We want to make sure that this continues, especially with the 2020 elections right around the corner. Having no choice of candidate should not be an excuse not to vote. We cannot continue to sit on the fence and expect real change to fall from heaven. More black voters are needed. More black voters with disabilities are needed. More black people are needed in our political offices. We cannot enjoy true freedom until we make these happen. There is no better time than now!

By: Tolu Adedoja, organizer in AAPD’s Fannie Lou Hamer Leadership Program.

Through AAPD’s REV UP Campaign, we are proud to announce our new initiative, the Fannie Lou Hamer Leadership Program. This program is designed for young (ages 18 – 30) Black disabled advocates who are committed to boosting voter registration and civic engagement across Black communities leading up to the 2020 elections. Participants will receive a $1,500 stipend and have the opportunity to create a national nonpartisan campaign that promotes voter registration and participation.

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August 25, 2020

COVID-19 has pushed the world into a new digital era in which we are using the internet more than ever for connecting with family and friends, tracking the news, organizing for social justice, working from home, and fighting off boredom. Zoom is the new bar, classroom, and more. You name it, and we have found a way to move it online during the pandemic. A GALLUP poll indicated that nearly 7 out of every 10 employed adults in the U.S. were working at home at least part of the time this May, and many businesses expect that some remote working will continue even after the pandemic.

In this new digital life, it is more important than ever to consider how accessible or inaccessible the digital world is to the 61 million Americans with disabilities. In the U.S., 15% of adults have hearing loss or a hearing disability, while about 10% of adults have blindness or low vision. Another 3% have intellectual or developmental disabilities. Many of us know that accessibility is important, but perhaps don’t know where to start or think of it as “too much work.”

I’m here to say #1: digital accessibility is not only important, it is absolutely critical. Digital accessibility is about the shared human right to engage in the world we live in. #2: It’s not that difficult. Making digital information accessible takes work and requires planning ahead, but following digital accessibility is just another skill to learn. If we all can learn to navigate Zoom, we can learn how to provide captions for our events, and more.

Where to Start

Digital accessibility encompasses making virtual events, social media posts, websites, digitally shared documents, and more inclusive to people with a range of disabilities. Thankfully in 2020, we live in an era with endless resources for how to achieve digital accessibility. Below are some great resources from the disability community:

• American Council for the Blind: 5 Accessibility Actions You Can Take When You’re Moving Your Conference or Classes Online
• Office of Civil Rights: Webinar on Online Education and Website Accessibility
• National Deaf Foundation: Remember Accessibility in the Rush to Online Instruction: 10 Tips for Educators
• Multiple Resources Recommended by the Autistic Self Advocacy Network
• Multiple Resources Recommended by the American Council for the Blind

In this blog, we have put together some tips and definitions to get you started on making your digital communications accessible!

1. Social Media

Alternative Text

Alternative text (also called image descriptions) are word descriptions of what is in an image. Alternative text (alt text) and image descriptions allow people with blindness and low vision to experience images in addition to text when they are using a screen reader—an assistive technology that reads text on a computer or phone screen aloud.

While image descriptions should be used any time an image is included in digital communications, social media makes it easy to include image descriptions. Platforms like Twitter allow you to add alt text when making a post, and on Instagram and Facebook which allow for more characters, you can also add image descriptions at the end of the main text of the post. Some tips for making effective alt text include:

• Keep image descriptions to the length of a tweet (280 characters).
• Focus on what is important in the image and why it was included.
• Quote important text in the image word for word.

Readability

When writing, there are a few things you can do to ensure that your social media text is clear and readable:

• Put hashtags and links at the end when possible so that someone using a screen reader can read the social media post without being interrupted.

2. Videos and Virtual Gatherings

Captioning

Closed Captions (CC) are lines of text, often at the bottom of a video or TV screen, that not only provide a text transcription of any words said but also describe other sounds, such as background music. Closed captions help make the audio part of videos accessible to people who are hard of hearing or deaf. While platforms such as Youtube may have automatic captioning, you make sure your video captions are accurate by using a captioning service to provide captions for your videos. Live captioning for events (virtual or in person) is called CART, which stands for Communication Access Real-Time Translation (CART), and there are endless companies that provide captioning and CART services. Here are a few:

• Streamtext
• Alternative Communication Services
• PostCap Project.
• If you have the time, you can also caption a video yourself for free.

When coordinating captioning for videos and live virtual events, you can help captioners and speed up their work by sending them the names of all participants, the agenda, scripts for remarks from speakers, and the headshots of speakers. Captioners usually provide a text-only link to share with participants that can make the captions easier to read by allowing the reader to:

• View whole paragraphs of the transcript
• Control how fast they are reading the captions
• Remove the distraction of the video or visuals

In Zoom, meeting hosts can assign a captioner so that CART is available directly in the platform. Note that when using breakout rooms, you will have to coordinate multiple captioners to cover the multiple breakout rooms. The number one thing to remember is to START EARLY with all of your captioning and CART needs, and make sure you have all of your captioners hired and any videos pre-captioned at least 72 hours before the event. It takes time for captioning to be completed and reviewed for accuracy.

American Sign Language (ASL)

American Sign Language (ASL) is a language using hand and face movements that is used by about half a million people in North America, largely people who are deaf or hard of hearing. Learn more about ASL through the National Association of the Deaf. With such a large community of ASL speakers, there are countless ASL interpreters that you can hire to make your webinars and events inclusive. Here are just a few:

• ASL Interpreting Services
• Accessible Communications for the Deaf
• Vineya
• Globo
• Purple

Just as we recommended when working with captioners, providing information on speakers, scripts and statements, and any other event materials in advance helps ASL interpreters prepare for events! 

For smaller meetings and gatherings, whether or not you need ASL will depend on your audience. But when hosting events open to the public, including ASL is key to ensuring everyone can engage in your event. Remember, ASL is its own language! Providing only captions to an ASL-speaker is like providing only English captions to a Spanish-speaker. When incorporating music (beyond background music), there are lots of ASL interpreter groups skilled in interpreting music, including DEAFinitely Dope and Amber G. Productions.

Incorporating ASL interpreters into Zoom and other virtual meeting platforms is easy! In Zoom, encouraging participants to use the “Gallery View” and select “View Video Participants Only,” will help viewers to prioritize the ASL interpreters. When presenting a slide-deck, Zoom attendees can select “Side-by-Side” view to ensure that ASL interpreters are still visible and can even pin the videos of the interpreters to their screen. Platforms such as Streamyard also allow you to choose a layout in which an ASL interpreter’s video screen is minimized but visible next to the main video screen.

Audio Descriptions

Audio descriptions in videos or presentations serve the same purpose as alt text for images. During a recorded video, audio descriptions of what is happening on screen enables people with blindness and low vision to engage more fully in media that is both visual and audial. Live visual descriptions in a zoom call might include describing one’s own appearance and video background and any visual graphics included in slide decks. Check out this example of audio descriptions during the ADA 30 Lead On Celebration this year. Disney has also committed to providing audio descriptions for many of their productions on the Disney Plus streaming platform.

Practice, Practice, Practice

Especially when it comes to planning live events, making sure that captioning and ASL interpretation are properly implemented can be difficult and any manner of things can go wrong (as with any aspect of event planning). Practicing and rehearsing your event in advance will help you prepare for what might go wrong with your accessibility technology. Also, the more events you host with accessible technology, the smoother your events will go!

3. Documents and Articles

Alternative Text

Much of the earlier conversation about image descriptions applies to images and logos included in documents. In documents, blog posts, and any other writing, make sure that your images are described. In Google, you can right click on an image and choose “Alt Text” to create an image description. Similarly in Microsoft Word, simply right click on an image and select “Edit Alt Text” to add a description.

Document Logic

Document logic means how you organize your document with titles, headings, and regular paragraphs. Both Google Docs and Microsoft Word allow you to change and create “Styles,” for all titles, headings, or normal text in a document. Using this feature to identify headings versus paragraphs of text helps screen readers understand how to correctly read different parts of a document. 

Plain Language

Earlier, we mentioned plain language when discussing Social Media. Plain language is about writing clear and concisely. Using plain language makes communications easy to understand for the general population, including people with intellectual and developmental disabilities and people who speak English as a second language. To learn more, check out this guide to writing in plain language from the Association of University Centers on Disabilities (AUCD). For examples of plain language writing, you can also check out this COVID-19 Guide in plain language created by the Green Mountain Self-Advocates on the COVID-19 or this Guide to Contacting your Representatives in Congress by AUCD.

Text Size

Many of us remember our parents or grandparents complaining about text that is too small to read or face this difficulty ourselves. More people have difficulty reading small text than you may think. According to the American Foundation for the Blind, 1 in 10 adults have trouble seeing even with glasses or contact lenses. Using a larger font helps so many people to more easily read your materials. Instead of 10 point font, consider 14 point font or larger (16 point or larger on websites). 

High Contrast

Using images with a high contrast of very light and very dark colors can be easier for folks with low vision to view. The same tip applies to choosing font and background colors. Stick to text and background combinations that have high contrast, for example black text on a white background or white text on a black background.

Descriptive Links

A screen reader will read out all text, so replacing long links in a document or social media post with a short description of the link can be extremely helpful for all readers. Whether or not you are using a screen reader, reading “learn more about describing links” is much more helpful than reading “learn more” or reading the full link, which I will spare you from. Check out Oregon State University’s summary of using links accessibly and this example a screen reader audio from Dallas College.

Accessibility Reviews

Some document editing softwares can automatically check how accessible the document is and let you know what can be improved. For example, in Microsoft Word, you can use the Word Doc Accessibility Checker under the  “Review” tab.  For example, the Accessibility Checker will tell you if you forgot alt text for an image or have unnecessary spaces in your document. Adobe Acrobat Pro, a PDF reader, also has an Adobe PDF Accessibility Checker.

4. Websites

Making websites accessible involves a combination of all of the accessibility tips and tools mentioned above. Typically, making websites accessible involves some knowledge of web design, but thankfully there are many companies and guides dedicated to making websites accessible. Here are some companies that can help you through the process of making your online presence accessible and inclusive:

• Siteimprove
• Make Sense: Better Web
• eSSENTIAL Accessibility

The basics of accessible website technology (check out Dreamhost for more items) are:

• Including alternative text for images and graphics
• Incorporating captions in videos
• Ensuring that users can navigate the website using the keyboard
• Using large enough fonts and high contrasting colors
• Avoiding tables of information except when communicating data points

5. Remote Working

COVID-19 has forced many workplaces to work remotely, increasing the need for organizations to proactively ensure that their systems and communications methods are accessible to people with a range of disabilities. For both in-person and remote working, the first step to making an inclusive workplace is asking employees what accommodations would help them be more successful, on a regular basis, and following through with requests. People often know what they need best, so asking is always a good place to start.

When it comes to making working from home accessible, ensuring digital accessibility through the methods mentioned earlier in this article is important, but not enough. Providing work schedule flexibility and offering to reimburse office furniture or any other accommodations needed are two ways to empower employees while working remotely. How many organizations have adapted to remote working has demonstrated how valuable and feasible work from home is as an accommodation. Making work from home accessible can help make more space for all employees to take care of their mental health. For more information on remote working an accessibility, check out these articles:

• Transitioning Your Office Online Must Work for All Employees
• 5 Ways to Support Remote Workers with Disabilities
• Accessible and Effective Remote Working

Start Somewhere

Making your digital presence accessible may take time, but the important thing is to start today, start with your next social media post, start with asking your employees about their accessibility needs. COVID-19 has brought so many challenges and tragedies to our world, but it has also given us an unlikely opportunity to transform the world we live in into a more inclusive and supportive world for everyone!

Notes:
1.  This article is far from comprehensive in covering digital accessibility technology and tools, please let us know what resources and tips you would like to share and anything that we are missing here. Email with additional recommendations to add to this blog at communications@aapd.com.

 2. A huge thank you to the AAPD staff for providing input and feedback for blog! For best practice on digital accessibility, watch how organizations by and for folks with disabilities center accessibility in their digital communications. Disability orgs don’t get accessibility perfect all the time, but following their example is a great start!

 3. Language accessibility is another massive barrier. In the U.S., 1 in 5 people speak a language other than English at home. As you consider ensuring that your digital work is accessible, it is also important to consider how you can create translations of your work and incorporate language interpretation when possible.

4. If you’re having difficulty convincing your organization to invest in digital accessibility for inclusion and civil rights alone, it can be helpful to point out how adding alt-text and improving web accessibility can improve your Search Engine Optimization and presence online! Check out these links for more information on digital accessibility:

• Digital Accessibility: What It Is and Why You Need It 
• Digital Accessibility 101

The post Digital Accessibility in the Age of COVID-19 appeared first on AAPD.

March 13, 2020

Many people with disabilities are at increased risk of serious or fatal complications from COVID-19 (coronavirus). In an active community outbreak, the safest option may be to self-isolate at home, perhaps for weeks or longer. In order to prepare for this possibility, the CDC is currently recommending that people at high risk stock up on necessities, including maintenance prescription medication.

Unfortunately, many people with disabilities can’t take this advice because of insurance restrictions. Insurers typically refuse to cover refills on 30-day prescriptions until only three to seven days of medication remain. For certain controlled substance prescriptions, patients may be legally unable to fill a new prescription until the date that the previous prescription is scheduled to run out.

These coverage restrictions could leave many disabled people in danger. Visiting the pharmacy can be risky for some people with chronic illnesses in even a normal flu season. Some people with disabilities may also face logistical challenges in getting to the pharmacy if in-home support services become disrupted due to a local COVID-19 outbreak. While many people can use mail order pharmacies to avoid this risk, localized outbreaks and social distancing measures may disrupt supply chains. We cannot stake our lives on the assumption that the availability of medications will remain stable in the coming weeks and months. We need to be able to stock up now, as the CDC recommends.

Disrupting treatment always endangers patients, but even more so in a pandemic. COVID-19 is expected to heavily tax the resources of the health care system. The need for inpatient treatment will likely exceed capacity in many communities. Even outpatient clinics are likely to have a high number of patients seeking treatment for COVID-19 symptoms, making avoidable visits risky for those more vulnerable to complications. Additionally, patients whose chronic conditions are destabilized are in danger of becoming more severely ill if they are infected with COVID-19.

Fortunately, a few insurance companies have taken measures to protect patients. In both Massachusetts and North Carolina, Blue Cross Blue Shield has waived early refill limits on 30-day maintenance prescriptions. Recognizing that most of us cannot simply wait for our insurers to behave responsibly, the Washington state insurance commissioner issued an emergency order requiring insurers operating in the state to cover early refills. On March 10^th, the Center for Medicare and Medicaid Services issued guidance to Medicare Part D plans reminding them of their ability to relax restrictions on early refills and lift barriers to obtaining prescriptions from out-of-network pharmacies.

While these emergency policies still fail to provide sufficient protection for many people with disabilities taking prescribed controlled substances, they offer significantly more protection than the status quo.

To further safeguard access to treatment, there are some additional changes beyond allowing for early refills to standard insurance policy practices that would be beneficial. These include relaxing restrictions on prescription fills at out-of-network pharmacies and offering coverage of non-formulary drugs if supply chain issues leave patients with no available formulary options. Widespread adoption of such policies would go a long way toward protecting the lives of people with disabilities in the COVID-19 crisis.

Now is the time to reach out to your state’s insurance Commissioner to urge them to follow Washington State’s lead in requiring early refills and to take other measures designed to ensure at-risk populations are able to follow the CDC’s guidance. We’ve prepared a template for advocacy organizations to use to urge their state’s insurance commissioner to take these common-sense measures to protect those most at-risk.

While many states have already required insurers to cover COVID-19 testing and treatment without cost-sharing, insufficient action has been taken to ensure that people with disabilities have access to early refills sufficient to comply with CDC guidance.

You can download our template at this link and adapt it to your organization’s needs. These measures will work best if they are undertaken before an active community outbreak in your area. Since our community includes many of those who are most at risk from COVID-19, we urge disability advocacy groups to make this an area of focus in the coming days and weeks.

If your organization is engaged in advocacy on protecting people with disabilities from COVID-19 or if you have been successful at securing action from your state government, we urge you to share details of that through this form. AAPD will be maintaining a page keeping track of advocacy efforts and policy measures to protect the disability community for the duration of the crisis.

Ari Ne’eman is a Visiting Scholar at the Lurie Institute for Disability Policy at Brandeis and a PhD student in Health Policy at Harvard University. He is a member of the AAPD Board of Directors.

Kit Albrecht is a Research Associate at the Association for Autistic Community.

The post How The Disability Community Can Respond to COVID-19 appeared first on AAPD.

The American Association of People with Disabilities is working with the Partnership for Inclusive Disaster Strategies (the Partnership) on two historic pieces of disability and disaster legislation that will dismantle barriers faced by people with disabilities, older adults, and Medicaid eligible people impacted by disasters. These bills should improve outcomes throughout disasters and increase resources for disability organizations, emergency managers and local communities.

The Real Emergency Access for Aging and Disability Inclusion for Disasters Act (REAADI) and the Disaster Relief Medicaid Act (DRMA) was introduced into both the Senate and the House of Representatives on June 10th.

Real Emergency Access for Aging and Disability Inclusion for Disasters Act (REAADI):

• Ensures there is a strong disability and older adult voice throughout the preparation, response, recovery, and mitigation of disasters,
• Includes universal design and visibility standards, as well as reasonable accommodation before, during and after disasters,
• Establishes a National Commission on Disability Rights and Disasters with a focus on:
  • accessible communication,
  • protection of civil rights,
  • accessible transportation and evacuation, and
  • accessible shelter, health and medical services;
• Creates a network of disaster and disability centers focused on training, technical assistance, and research to assist states and localities to better include and support disaster-impacted people with disabilities, older adults and others who also have access needs;
• Directs the Government Accountability Office to review the spending of disaster funds by federal agencies and states to ensure funds have been spent in accordance with the Rehabilitation Act and the Americans with Disabilities Act
• Creates a competitive grant program to pilot strategies for greater inclusion of people with disabilities, older adults and people with access needs throughout disaster preparation, response, recovery, and mitigation;
• Requires the Department of Justice to examine how the civil rights of people with disabilities and older adults are or are not upheld during and following disasters; and
• Establishes a role for Centers for Independent Living throughout local disaster preparedness, response and recovery.

To find out more about REAADI check out Senator Casey’s One page Summary.

Disaster Relief Medicaid Act (DRMA):

• Provides uninterrupted access to Medicaid services when recipients must evacuate across state lines, increasing health maintenance and community living and preventing institutionalization during disasters.
• Helps states meet the needs of Relief-Eligible Survivors through a limited time one hundred percent federal match for displaced individuals,
• Provides technical assistance and support to develop innovative state strategies to respond to an influx of out-of-state individuals.
• Creates a grant to help states develop an emergency response corps to provide home and community-based services.
• Guarantees that a 100 percent federal matching payment for medical assistance is provided to states in disaster areas.

To find out more about DRMA, check out Senator Casey’s One Page Summary.

Take action now!

• Reach out to your Senators and Representatives and ask them to support REAADI and DRMA 
  • Go to https://reaadi.com/take-action-now/ for information and templates.
  • Check the REAADI site for updates on co-sponsors.
• Express organizational support for REAADI and DRMA
  • Go to https://reaadi.com/take-action-now/ for information and templates.
  • Email dart@disasterstrategies.org with your organization’s name and a short statement indicating support for REAADI and DRMA,

For more information on REAADI and DRMA, check out www.reaadi.com.

You can sign up for notifications on REAADI and DRMA and request additional information and advocacy support!

The post Action Alert: Ask Congress to Sign-on as Original Cosponsors to Bills Protecting the Rights of Disaster-Impacted People with Disabilities ! appeared first on AAPD.