Welcome to the Washington Connection, the legislative and information service of the American Council of the Blind. The Washington Connection is brought to you by the ACB national office. If you have any questions or comments on the information provided, don’t hesitate to contact us and ask to speak with Clark Rachfal.
The Washington Connection is updated any time we have new information to share with you. The following articles are available as of September 30, 2021. All 8 messages are new.
- New! Discord and American Council of the Blind Announce Digital Accessibility Initiative
- New! Planet Fitness, Home of the Judgement-Free Zone, and the Coalition for Inclusive Fitness Announce Accessible Exercise Equipment Commitment Benefitting People with Disabilities
- New! Accessible Voting Sign-On Letter to GSA
- New! Medicare Vision Act Sign-On Letter
- New! Medicare Vision Act Action Alert
- New! Specialty Pharmacies Cater to the Blind and Those with Impaired Vision
- New! Update to Social Security Special Notice Option Policy
- New! Lawsuit Provides Blind Individuals with Access to New York State’s Emergency Mass Notification System
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Discord, working with the American Council of the Blind, announced a comprehensive initiative to enhance Discord’s voice, video and text communication app to make it more accessible for Discord users who are blind or have other vision impairments.
Discord has worked closely with representatives of the blind community so they each could better understand the challenges and opportunities to enhance Discord’s digital platform:
“The American Council of the Blind congratulates Discord for its demonstrated commitment to access and usability, and for its leadership role in ensuring that the blind and visually impaired communities are among the millions of people who can use Discord to connect with their friends and colleagues.”
- Eric Bridges, Executive Director of the American Council of the Blind
Discord has adopted the Web Content Accessibility Guidelines (WCAG) version 2.1 level AA as its digital accessibility standard. These standards are developed by the World Wide Web Consortium (W3C) an international community that develops open standards to ensure the long-term growth of the Web and its availability to all. More information is available on the W3C’s Web Accessibility Initiative website, https://www.w3.org/WAI/.
Planet Fitness, Home of the Judgement-Free Zone, and the Coalition for Inclusive Fitness Announce Accessible Exercise Equipment Commitment Benefitting People with Disabilities
Hampton, N.H. (September 21, 2021) — Planet Fitness, Inc. (NYSE: PLNT), one of the largest and fastest-growing global franchisors and operators of fitness centers with more members than any other fitness brand, and the Paralyzed Veterans of America, National Council on Independent Living, and American Council of the Blind (collectively “Coalition for Inclusive Fitness” or the “Coalition”) today announced a commitment to expand access to accessible exercise equipment.
“As a leader in the industry and home of the Judgement Free Zone®, it is our mission to provide an inclusive and welcoming environment to anyone who comes through our doors,” said Chris Rondeau, Planet Fitness’ Chief Executive Officer. “People with disabilities face significant barriers when attempting to access health and wellness activities, and it’s clear that health inequity is often due to a lack of access and opportunity. Today’s commitment is another way we are working to eliminate barriers and enhance people’s lives by providing a high-quality fitness experience for everyone.”
The Coalition is focused on working with global organizations to build inclusive health communities that provide people with disabilities equal access to, and opportunities for, healthy living. Planet Fitness is committed to providing inclusive equipment in all new stores and adding it to existing stores across the country as franchise owners replace current offerings, as inclusive commercial grade equipment becomes available for purchase and is approved by Planet Fitness for inclusion in its clubs.
Planet Fitness will enhance the amount and variety of accessible equipment provided at its clubs by adding new inclusive equipment that conforms with ASTM standards as it becomes commercially available for purchase after clearing through a due diligence process, in accordance with set phased-in time parameters.
This equipment will include:
- An inclusive dual cable strength machine that allows a person to perform multiple exercises from a seated position, including from a wheelchair.
- A recumbent cardio machine where movement of the arms can move the legs, and vice-versa, and, in addition, the seat can be removed so it can be operated from a wheelchair.
- Multiple cardio machines, which, depending upon availability, can include: treadmills, elliptical devices, upright bikes and/or recumbent bikes.
- All new cardio machines will have inclusive features including raised tactile buttons and the ability to receive audible instructions and performance feedback, which will enable blind users to operate cardio machines independently.
Planet Fitness will also include the inclusive fitness symbol on all accessible equipment, share information about the roll-out of accessible equipment on its website (as it becomes available in its clubs), and continue its practice of providing customer service regarding the use of accessible equipment.
“We applaud Planet Fitness for this historic commitment to the disability community,” said Richard Thesing, Coalition for Inclusive Fitness’ Chief Executive Officer. “At the present time, there are no cardio machines that can be used by blind people and very few fitness centers have cardio or strength machines that can be used by people with mobility disabilities. This marks a huge step forward towards providing individuals with disabilities with a truly inclusive fitness experience. We hope this will be the start of an industry-wide effort to provide individuals with disabilities the opportunity to enjoy an accessible fitness experience and take similar steps to making that a reality.”
“People who are blind face a myriad of chronic health conditions due in no small part to the lack of accessible exercise and fitness equipment available in the market today,” said Eric Bridges, Executive Director, American Council of the Blind. “The lack of accessible user interfaces and audible output for nearly all types of exercise and fitness equipment prevents people who are blind and experiencing vision loss from independently operating, purchasing and enjoying the use of fitness and exercise equipment, and thereby taking control of their own health and wellbeing. ACB applauds Planet Fitness for their collaboration with the disability community, and we encourage other fitness and exercise providers to follow their leadership to enable people with disabilities the freedom to take control of their health.”
“Exercise is for everyone,” said Emily Seelenfreund, Staff Attorney at Disability Rights Advocates – one of the organizations representing the Coalition. “Planet Fitness’ pioneering commitment to increasing accessibility should serve as a model for fitness facilities across the country.”
“For people with spinal cord injuries and disorders, being able to access exercise equipment that meets their needs can be essential to maintaining an exercise program that increases their strength and endurance for rehabilitation, health, and overall sense of well-being,” said Heather Ansley, Associate Executive Director of Government Relations, Paralyzed Veterans of America. “We believe that this commitment will help make accessible equipment more available in people’s communities and we are pleased that Planet Fitness has stepped forward to help meet this critical need.”
September 16, 2021
Administrator of the U.S. General Services Administration
Office of the Administrator
1800 F Street, NW
Washington, D.C. 20405
Dear Ms. Carnahan:
In March of this year, President Biden issued Executive Order No. 14019 (“EO 14019”) Promoting Access to Voting, which contains numerous provisions to help eligible people with disabilities register and vote. The undersigned organizations applaud the Administration’s commitment to improving voting access for people with disabilities. While there are many steps that the federal government can and should take to promote better access to voting for persons with disabilities, this letter focuses on Section 5 of EO 14019, which mandates that the General Services Administration (“GSA”) work to modernize and improve Vote.gov, and in particular, that “Vote.gov complies, at minimum, with Sections 504 and 508 of the Rehabilitation Act of 1973.”
To comply with this mandate, GSA must fix the compliance problem with the National Mail Voter Registration Form (“NMVRF”) that is available on Vote.gov. GSA relies exclusively on the version of the NMVRF housed on the Election Assistance Commission (“EAC”) website5 — the only version currently available on any federal government website. Its interface, however, is inaccessible to individuals with print disabilities. The EAC’s current PDF of the NMVRF does not meet Revised 508 Standards, which incorporate and apply the WCAG 2.0 Level A and Level AA success criteria and conformance requirements to both web and non-web electronic content. These standards require web content, including PDFs, to be perceivable (e.g., alternate text should be available for images and other non-textual content); operable (e.g., all functionality should be available from a keyboard); understandable; and robust (e.g., able to be interpreted reliably by a wide variety of user agents, including assistive technologies). GSA should continue to provide access to the NMVRF on Vote.gov, but it should not promote or rely upon any web interface that does not provide maximum access to all voters with disabilities. GSA should ensure that the form is both readable and fillable by assistive technologies, in compliance with WCAG 2.0 Level A and AA standards.
Per the National Voter Registration Act (“NVRA”), the content of the NMVRF is determined by the EAC. But GSA has the ability to make adjustments to the format of the NMVRF. Current EAC guidance is clear that the format of the NMVRF can be modified. EAC guidance states that the application portion of the NMVRF can be separated from the instructions — in other words, the instructions can be presented separately and in a format different than the application itself. (The current PDF format of the NMVRF is 27 pages and includes instructions for all states.) For example, the EAC guidance states that when conducting a voter registration drive, it is permissible to photocopy and hand out “only the voter registration applications,” while the instructions can be “enlarged” into posters and “posted at the registration site.” While the content of the language of the NMVRF is precisely specified, the format is flexible.
Many other groups have made these types of modifications solely to the format of the NMVRF.
While not all of these examples are WCAG 2.0 AA compliant, they provide a starting point. These examples include:
- Rock The Vote, https://www.rockthevote.org/how-to-vote/register-to-vote;
- Turbo Vote, https://turbovote.org/;
- Vote.org, https://www.vote.org/register-to-vote/, and
- Trigger the Vote, https://www.triggerthevote.org/register-to-vote/.
These systems are designed to help facilitate individuals completing the NMVRF by asking them simple questions and pre-populating their voter registration forms accordingly. The end product looks the same as if an individual printed out a blank paper copy of the NMVRF and completed the relevant portions by hand. These other examples are in regular use and have been in use for a number of years, and local election officials accept the forms created by these systems without issue. GSA should comply with EO 14019’s mandate and create a version of the NMVRF that complies with Revised 508 Standards, which incorporate WCAG 2.0 Level A and Level AA standards, and is readily usable by persons using assistive technologies. None of the changes necessary to achieve this compliance would change any of the content of the NMVRF. The only changes would be to the format of the NMVRF, which is acceptable per EAC guidance and long-standing practice.
Voter registration remains a prerequisite to participating in the electoral process in nearly every state and territory. The federal government can significantly improve voting access for many Americans by ensuring that Vote.gov is accessible to people with disabilities. We urge GSA to act.
American Civil Liberties Union
American Council of the Blind
Disability Rights Advocates
Fair Elections Center
National Disability Rights Network (NDRN)
Paralyzed Veterans of America
The National Council on Independent Living
CC via email
U.S. General Services Administration (GSA) Chief of Staff
Election Assistance Commission
September 1, 2021
The Honorable Ron Wyden, Chairman, Senate Finance Committee
The Honorable Mike Crapo, Ranking Member, Senate Finance Committee
The Honorable Richard Neal, Chairman, House Ways & Means Committee
The Honorable Kevin Brady, Ranking Member, House Ways & Means Committee
The Honorable Frank Pallone, Chairman, House Energy & Commerce Committee
The Honorable Cathy McMorris Rodgers, Ranking Member, House Energy & Commerce Committee
Re: Support for Coverage of Low Vision Aids for Medicare Beneficiaries
Dear Chairmen Wyden, Neal, and Pallone and Ranking Members Crapo, Brady, and McMorris Rodgers:
On behalf of the Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition1, we thank you for your ongoing work on behalf of individuals with disabilities and chronic conditions, and for the opportunity to provide recommendations on your committee’s work to develop legislation pursuant to the Fiscal Year 2022 budget resolution. Our members are encouraged by the policies indicated in the resolution, including the expansion of health care coverage under the Affordable Care Act, addressing gaps in basic health coverage for Medicare beneficiaries, and the enhancement of long-term care and home- and community-based services for seniors and people with disabilities. In addition to these efforts, as you continue to develop the accompanying reconciliation package, we urge you to consider the needs of individuals with low vision and include specific language advancing coverage for important assistive technology to address these conditions.
People with a range of visual impairments that can be caused by genetics, developmental issues, disease, or injury that reduces visual acuity or visual field are classified as having low vision. These disorders are not responsive to treatment with conventional eyeglasses, contacts, medication, or surgery. Low vision aids encompass a wide range of assistive technology and devices that are prescribed and customized to meet the specific medical and functional needs of individuals with visual impairments. Clinical literature clearly establishes that individuals with uncorrected or unaddressed low vision face significant negative impact on their health and function, including impairment of daily activities, loss of independence, inability to independently manage medication adherence, increased risk of falls, negative mental health impacts, and reduced quality of life and life expectancy. Further, individuals with low vision may benefit from low vision interventions, such as vision rehabilitation services, devices, and assistive technology that can provide magnification, minification, increased contrast, and visual field enhancements.
Unfortunately, many visually impaired Medicare beneficiaries are unable to access appropriately prescribed low vision aids if they cannot afford the devices out of pocket, as Medicare prohibits coverage of low vision aids under the eyeglasses exception to Medicare coverage, which has been interpreted as a “low vision aid exclusion.” Recent analyses of data from the National Health and Nutrition Examination Survey (NHANES) demonstrate the breadth of the impact of low vision in the United States. Among older adults, there were 1.48 million individuals with low vision or worse in 2017. When examining populations of all ages, there were nearly 1.85 million individuals with low vision in 2017. Of course, the visually impaired population is not static; the prevalence of low vision and blindness is growing quickly, with approximately 480,000 new cases of mild low vision or worse and 180,000 cases of moderate low vision or worse each year. By 2030, there are expected to be 2.45 million cases of low vision or worse; this number will continue to grow to nearly 3.3 million by 2050.
As Congress considers the potential expansion of Medicare to include vision benefits, along with dental and hearing, it is critical that the population of individuals with low vision not be excluded. Therefore, we strongly support the low vision language included in H.R. 4187, the Medicare Vision Act of 2021 and encourage you to replicate this language in any legislation creating a Medicare vision benefit or otherwise expanding the Medicare program.
This legislation, introduced in June by Reps. Kim Schrier (D-WA), Tom O’Halleran (D-AZ), Suzan DelBene (D-WA), and Elissa Slotkin (D-MI), would lift the low vision aid exclusion by repealing the statutory ban on Medicare coverage for eyeglasses. Further, it would direct the Secretary of Health and Human Services (HHS), working through the Centers of Medicare and Medicaid Services (CMS), to undergo a “review and analysis” of low vision aids that are appropriate for Medicare coverage and advance coverage for devices identified by the Secretary. The relevant language is excerpted below:
§ 2(h): “Repeal of Ground for Exclusion. – Section 1862(a)(1) of the Social Security Act is amended by striking ‘, eyeglasses (other than eyewear described in section 1861(s)(8)) or eye examinations for the purpose of prescribing, fitting, or changing eyeglasses, procedures performed (during the course of any eye examination) to determine the refractive state of the eyes.”
§ 2(i): “Low Vision Aids. – Not later than one year after the date of the enactment of this Act, the Secretary of Health and Human Services shall, in consultation with relevant stakeholders –
(1) undergo a review and analysis of clinically indicated magnifiers, spectacles, and other similar vision enhancement devices used to assist individuals with low vision and visual impairments;
(2) based on such review identify such specific devices that are not, but which pursuant to administrative action could be, covered under the Medicare program under title XVIII of the Social Security Act coverage; and
(3) take such administrative actions as are necessary to provide for such coverage of such devices so identified as the Secretary determines appropriate.”
It is important to recognize that there are numerous low vision aids currently available, that address a wide range of functional needs and some with varying degrees of evidence supporting their use. Therefore, this language does not provide a blanket mandate of coverage for this entire product category; rather, it directs CMS to work with relevant stakeholders to review existing clinical evidence, beneficiary needs, and provider perspectives to determine which devices are most appropriate for Medicare coverage. Thus, we do not expect that this language will substantially contribute to the fiscal impact of a Medicare expansion bill – though it will have a major impact for individuals who need access to these devices to live healthy, independent lives.
As you shape the Medicare provisions in the Fiscal Year 2022 budget reconciliation package, we urge you to include language lifting the low vision aid exclusion and mandating a review of low vision devices eligible for Medicare coverage. This language will help ensure that Medicare beneficiaries with visual impairment will have an opportunity to access the low vision devices and vision rehabilitation services they require. Improving coverage of these critical devices will help Medicare beneficiaries more fully participate in their medical care, achieve better health outcomes, live more independently, work, care for their loved ones, engage in civic functions, and perform everyday activities.
We greatly appreciate your leadership in developing this important legislation, and we look forward to working with you and your committee members during this process. Should you have any further questions regarding our recommendations, please contact the ITEM Coalition coordinators by email at [email protected] or [email protected], or call (202) 349-4243.
The Undersigned Members of the ITEM Coalition
American Academy of Ophthalmology
American Association on Health and Disability
American Cochlear Implant Alliance
American Congress of Rehabilitation Medicine
American Council of the Blind
American Macular Degeneration Foundation
American Medical Rehabilitation Providers Association
American Music Therapy Association
American Network of Community Options and Resources
American Occupational Therapy Association
American Optometric Association
American Therapeutic Recreation Association
The Arc of the United States
Assistive Technology Industry Association
Association of Assistive Technology Act Programs
Association for Education and Rehabilitation of the Blind and Visually Impaired
Blinded Veterans Association
Brain Injury Association of America
Caregiver Action Network
Center for Medicare Advocacy
Institute for Matching Person and Technology
Lighthouse Guild International
Long Island Center for Independent Living, Inc.
National Association for the Advancement of Orthotics and Prosthetics
National Association of Councils on Developmental Disabilities
National Association of Rehabilitation Research and Training Centers
National Coalition for Assistive and Rehab Technology
National Disability Rights Network
Paralyzed Veterans of America
Rehabilitation Engineering and Assistive Technology Society of North America
Support Sight Foundation
United Cerebral Palsy
The Viscardi Center
The Vision Council
Additional Supporting Organizations
Academy for Certification of Vision Rehabilitation & Education Professionals
Alliance on Aging and Vision Loss
American Council of the Blind Families
American Council of the Blind of Connecticut
American Council of the Blind Government Employees
American Council of the Blind of Minnesota
American Council of the Blind of Ohio
Association for the Blind and Visually Impaired South Carolina
Blind & Vision Rehabilitation Services of Pittsburgh
California Council of the Blind
EyeSight Foundation of Alabama
Florida Agencies Serving the Blind
Florida Council of the Blind
Georgia Guide Dog Users
Guide Dog Users, Inc.
Hawaii Association of the Blind
Illinois Assistive Technology Program
Illinois Council of the Blind
Independent Visually Impaired Entrepreneurs
Kansas Association for the Blind and Visually Impaired
Kentucky Council of Citizens with Low Vision
Lighthouse for the Blind and Visually Impaired, San Francisco
Louisiana Association for the Blind
Michigan Council of the Blind and Visually Impaired
Mississippi Council of the Blind
National Association for the Employment of People who are Blind
National Industries for the Blind
Nevada Council of the Blind
New York Institute for Special Education
New York Vision Rehabilitation Association
North Carolina Council of the Blind
Northern Kentucky Council of the Blind
Pennsylvania Council of the Blind
Perkins School for the Blind
San Antonio Lighthouse for the Blind and Visually Impaired
Society for the Blind, Sacramento, California
South Dakota Association of the Blind
Success Beyond Sight
Tampa Lighthouse for the Blind
Wayfinder Family Services
Medicare Vision Coverage and Low Vision Devices Action Alert
ACB supports the Medicare Vision Act and urges congress to include it in the upcoming budget reconciliation package. We encourage all our members and friends to contact their senators and representatives in support of including H.R. 4187 in the budget reconciliation package.
Currently, Congress is debating a large legislative vehicle that provides an opportunity to go well beyond creating a pilot program to providing vision coverage through Medicare. As background, one of ACB’s legislative priorities for 2021 is the Medicare Demonstration of Coverage for Low Vision Devices Act; if passed, this bill would require the Centers for Medicare and Medicaid Services (CMS) to conduct a pilot program and report to Congress on the effectiveness of providing low vision device coverage of items including but not limited to: video magnifiers, magnifiers, telescopes, and other devices designed to aid individuals with low vision in accessing information and performing daily living activities.
ACB, along with the Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition, is currently working with Congress, including the House Ways and Means Committee, the Energy and Commerce Committee, the Senate Finance Committee, and the Congressional Vision Caucus, to include a Medicare vision benefit in the $3.5 trillion budget reconciliation package being considered by Congress. The legislation we believe is best suited to provide vision coverage and expand access to low vision devices is the Medicare Vision Act (H.R. 4187).
The Medicare Vision Act (H.R. 4187) would repeal the eyeglasses exclusion from the Medicare statute and require CMS to develop a process to evaluate and make recommendations on covering low vision devices. The bill was introduced in the House of Representatives by Representative Kim Schrier (D-WA), and cos-ponsors for the Medicare Vision Act include Reps. Suzan DelBene (D-WA), Elissa Slotkin (D-MI), Bobby Rush (D-IL), G.K. Butterfield (D-NC), Peter Welch (D-VT), Suzanne Bonamici (D-OR), and DC’s Congressional Delegate Eleanor Holmes Norton.
The House Ways and Means Committee and the Energy and Commerce Committee released draft text for their sections of the budget reconciliation package. This text creates a carve-out for Medicare coverage of routine eye exams, eyeglasses and contact lenses but does not explicitly mention coverage for low vision devices. The text does not include language from the Medicare Vision Act (H.R. 4187). Although this is a step forward, ACB and the ITEM Coalition believe the inclusion of the Medicare Vision Act (H.R. 4187) in the budget reconciliation package will provide a more comprehensive vision benefit and allow CMS to authorize coverage for approved low vision devices.
Call to Action
ACB invites you to join us in our support for the Medicare Vision Act and urges Congress to include it in the upcoming budget reconciliation package. We encourage all our members and friends to contact both their senators in support of including H.R. 4187 in the budget reconciliation package.
What can you do:
- Please listen to the ACB Advocacy Update podcast from September 9, with featured guest, Joseph Nahra, Director of Government Relations, Powers Law, and co-Coordinator, ITEM Coalition – https://www.acbmedia.org/2021/09/09/low-vision-devices-legislative-update/.
- Please review the letter sent by the ITEM Coalition and more than 80 supporting organizations, including ACB and many of our affiliates, to committee leaders in both the House and Senate urging the inclusion of the Medicare Vision Act (H.R. 4187) in the budget reconciliation package - https://itemcoalition.files.wordpress.com/2021/09/item-coalition-letter-on-low-vision-coverage-in-fy-2022-reconciliation-package.pdf.
To contact your senators, go to www.senate.gov and search by your state and then send them an email or call their office to share your opinion. You may also reach your senators’ offices by calling the Capitol switchboard at (202) 224-3121.
When contacting your senators, please let them know you are a constituent and that you would like them to support H.R. 4187 and to add it to the current reconciliation package being considered in the Senate. Be sure to share with your senators how access to low vision devices has impacted your life and what it would mean for all individuals living with vision loss to have access to these necessary and vital tools for independence.
Be sure to let us know, once you have contacted your representative, by emailing the ACB Advocacy Team, Clark and Swatha, at [email protected] or by telephone at (202) 467-5081.
Thank you, and keep advocating.
The pandemic has exposed flaws in services for people who can’t easily access a drive-through window for COVID shots or testing or can’t read prescription labels.
During the pandemic, Curtis Chong has avoided the 2-½ hour journey to his grocery store pharmacy — including a round-trip bus ride — to pick up his prescription.
Even though Mr. Chong, a retiree in Aurora, Colo., said he is readily identifiable as a blind person, because he uses a white cane for mobility, his pharmacist never suggested he could have his medications labeled in an accessible way.
Through a Zoom meeting, Mr. Chong learned about Accessible Pharmacy Services, a start-up, that now delivers his medication with labels that convert text to speech. Mr. Chong said the new specialty pharmacy provided an array of products and assistance “so that the blind can identify their medications privately and independently.”
Unlike most other pharmacies, Accessible Pharmacy does not cater to walk-in customers or, for that matter, people who can see. The company offers service to blind people and those with low vision, including assistance from those who can see and free home delivery for prescriptions, medical devices and over-the-counter medications.
The pandemic has cast a spotlight on inequalities at pharmacies, where precautions and new programs have further limited access to health care for people with intellectual, developmental and physical disabilities.
Critical services like drive-through coronavirus testing, vaccination and pharmacy pickup windows have failed in many instances because they were rolled out in ways that were inaccessible. How can a blind person drive through a pharmacy? Why isn’t walk-through an option?
In addition, labeling and packaging have been a longstanding problem for older adults and for anyone who cannot read or understand the tiny type that appears on most prescription bottles and the accompanying pamphlets listing side effects and drug interactions.
There is no national standard that specifically addresses accessible labeling or packaging, despite the potential needs of more than 85 million — approximately 1 in 4 — people in the United States who, according to the Census Bureau, have a disability, and more than 12 million people who have serious difficulty seeing.
The Food and Drug Administration is responsible for regulating prescription drug labels, and under a 2012 law, required a U.S. agency to develop guidelines for accessible labels for those who are blind or visually impaired. In 2016, the Government Accountability Office found that blind and low-vision patients “continue to face barriers accessing drug label information, including identifying pharmacies that can provide accessible labels.”
Some improvements have been made, and states have taken the lead on pharmacy oversight. A few, including Pennsylvania, Massachusetts, and Maine, are exploring legislation that would require pharmacies to provide prescription labels in Braille, large print, high-contrast and with audio. In 2018, Nevada passed a law requiring pharmacies to provide a prescription reader or to help patients obtain one, and Oregon passed a similar law in 2019.
Nestled in a nondescript mini-mall, next to a Pizza Hut and a partially vacant building, Accessible Pharmacy operates in Fairless Hills, Penn. Concierge agents speak with each patient on the phone, coordinate refills and drug interaction questions with their doctors and consult resident pharmacists. A packaging and labeling menu for prescriptions includes Braille, large print, and audio — all free of charge.
“We decided to create a company where accessibility and reduction of barriers would be our primary focus with an incredibly welcoming sense of hospitality,” said Alex Cohen, 45, company co-founder and professor of marketing at West Chester University outside of Philadelphia, and one-time general manager of a hotel. He became blind after being diagnosed with retinitis pigmentosa, a genetic degenerative disease, when he was 20.
Accessible Pharmacy, which launched in May 2020, resulted from collaboration between Mr. Cohen, the chief marketing and accessibility officer, and Andy Burstein, the chief executive.
“It’s still like the Wild West for us in terms of reliably and consistently finding solutions at the national level,” said Mr. Chong, 67. He gets his prescriptions from Accessible Pharmacy with ScripTalk. A tag is placed on the bottom of each pill container that is programmed to include medication information. It can be read aloud using the ScripTalk app on his iPhone or with a free-standing device. (En-Vision America, the manufacturer, said ScripTalk is available in 25 languages and is used by over 20,000 people.)
Mr. Chong pays more for his medications because Accessible Pharmacy isn’t a preferred pharmacy with his Medicare plan, but said he is willing to pay extra so that his medication labels are tailored to his needs.
He also said he found the websites of major drugstore chains problematic because of unlabeled graphics, requests for the prescription number and a “general lack of efficiency” when ordering refills.
Accessible Pharmacy employees respond to video calls via Be My Eyes, a free app that provides assistance for blind and low-vision people using a network of sighted volunteers. Users requiring help with prescriptions or devices receive sighted assistance from the pharmacy. It can also set up and send out talking medical devices including blood pressure cuffs, thermometers, blood glucose meters and continuous glucose monitors and troubleshoot through the app, once patients have a device in hand.
The pharmacy also fills orders using specialized equipment and can provide enhanced packaging with tactile differentiations for morning and night doses.
Lynn Heitz, 63, a community training specialist for the blind who lives in Phoenixville, Pa., said she preferred the company’s disposable pill organizer so that she doesn’t have to figure out what’s in every bottle, and the pharmacy sends her the next month’s supply one week before she runs out. After she and her husband were diagnosed with COVID-19, the pharmacy sent an overnight package with prednisone and cough syrup that her doctor prescribed.
This summer, the American Foundation for the Blind expanded its research on the effects of the pandemic to learn more about service interruptions as well as the short- and long-term issues encountered by those who are blind, deaf and blind or have low vision.
In an Op-Ed last fall, Penny Rosenblum, the former director of research at the foundation, described one such obstacle: “‘Drive-thru’ and ‘curbside pickup’ discriminate,” she wrote. “This doesn’t work for those with vision loss. Communities must have alternative plans, be it porch delivery, walk-up or bike-thru.”
DeAnna Quietwater Noriega, a writer and a full-time caregiver for her husband, Curtis, gets the couple’s prescriptions and any other pharmacy items they need hand-delivered to their front door by D&H Drugstore in Columbia, Mo. Ms. Noriega, 73, was born with glaucoma and has been blind since she was 8.
“They know us by name and always treat us with respect and friendliness,” she said of her independent pharmacy. “They go the extra mile to be sure our medications are compatible with each other and argue on our behalf if our insurance company balks at the drug our doctors prescribed.”
Ms. Noriega’s medications come with ScripTalk labels that she reads with her iPhone. Previously, she filled their prescriptions through Walmart. But the problem, she said, was the couple was never told when the refills had run out until they showed up at the pharmacy. “We were expected to read the very small print on the label,” she said.
Many independent pharmacies offer personalized services including home delivery to meet customers’ needs. Major drugstore chains also offer home delivery in many places. Over the last several years, chain pharmacies have become somewhat more accessible, in part, because of lawsuits and negotiations led by advocacy organizations like the American Council of the Blind.
But finding a pharmacy with a full menu of accessible solutions under one roof has been elusive. Last summer, CVS Health, which offers ScripTalk via its website, added a feature to its app called SpokenRx that can scan labels and read the prescription aloud, which the company said is now available in 10,000 stores.
Walmart also provides ScripTalk in nearly 1,800 Walmart and Sam’s Clubs locations. And there have been other agreements reached with Walgreens to offer its Talking Pill Reminder free of charge. Eric Bridges, executive director of the council, said they have yet to engage with Amazon Pharmacy.
Dr. Steven Erickson, a pharmacist and professor at the University of Michigan College of Pharmacy, teaches a class where guest speakers with various disabilities share their experiences with pharmacists so that students can demonstrate “disability cultural competence,” he said.
“Without that education there is a greater risk of patients stopping the medicine, or not taking it as intended by their physician,” he said.
Getting one-on-one time with a busy pharmacist can also be daunting, so people often settle for printed instructions. The small font size can be an impediment for people with low vision. In addition, those with cognitive issues or limited health literacy may have difficulty understanding the material. Lack of access can also affect deaf patients when the pharmacist doesn’t know sign language or when video relay service or a translator are not provided.
Disposable pill organizers and sealed packets provide a “user-friendly” solution, Dr. Erickson said, but some large chains do not provide them. (CVS offers presorted packets that can be delivered to one’s home or pharmacy for pickup.) And refilling medications at the same time — so-called med-syncing — also helps patients by reducing trips to the pharmacy.
“Both customized patient medication packaging and med-syncing are especially beneficial for people with disabilities who may face transportation barriers or difficulty manipulating traditional medication vials,” Dr. Erickson said.
Mr. Cohen said the company meets monthly with a packaging advisory committee of blind adults. Customer feedback led to the addition of pet and guide-dog medications to the delivery menu and over-the-counter sundries like aspirin and toothpaste.
What’s more, Dr. Erickson said it’s common for some people — especially those with intellectual and developmental disabilities — to have other medical conditions that require five or more prescriptions, a scenario known as polypharmacy.
For a few years, Hayden Shock, 28, who is deaf and had a kidney transplant, took several drugs for his condition. During the pandemic, Mr. Shock, a program analyst for the General Services Administration, who lives in Arlington, Va., used either an app that provides speech-to-text, called LiveCaption, or pen and paper when he went to Walgreens.
Masks posed another difficulty because they blocked the visual clues of pharmacy staff. (Safe’N’Clear makes an F.D.A.-approved mask with a window.) “I would not call myself a lip reader,” he said. “But I like to see people’s facial expression and lip movement when I communicate with them.”
When his insurance changed to Inova Pharmacy Services, which is affiliated with the regional nonprofit health care provider, it delivered his prescriptions. Through his video phone number, which is connected to apps like Convo, Purple or Sorenson, he can talk to the pharmacy staff with the aid of a sign language interpreter.
So far, Accessible Pharmacy has made inroads largely in the Northeast and mid-Atlantic regions of the country. Mr. Cohen said the company is licensed in 31 states and hopes to expand to all states.
The pandemic, Mr. Cohen notes, has given pharmacies and retailers reasons to rethink their customer service, because many “overestimated the role technology could play in assuaging” the fears of people with disabilities. The assumption that these communities of people with differing needs are tech savvy is “perilous,” he added, noting that some people still only have a landline.
“We always welcome a phone conversation,” Mr. Cohen said.
The Social Security Administration last week clarified their new policy surrounding alternate formats for the Special Notice Option online and in its call centers. The new policy, referred to as the SNO Opt Out Initiative, would only apply to those SSA beneficiaries who affirmatively opt out of receiving paper notices in their preferred SNO format, including braille, large print, Microsoft Word CD, or audio CD, via their MySSA account. Beneficiaries who do not affirmatively opt out will continue receiving notices in their preferred formats. Notices that are not available online will be sent in the preferred SNO format to all beneficiaries. The SSA updated its website with this new information and reminded its call center staff and managers on the importance of providing accurate and up-to-date information.
For more information, visit https://www.ssa.gov/people/blind/.
Lawsuit Provides Blind Individuals with Access to New York State’s Emergency Mass Notification System
September 29, 2021 – White Plains, NY – People who are blind and use screen readers will now have independent access to life-saving information offered by “NY-Alert,” New York State’s Mass Notification System. Under a settlement agreement just reached between blind advocates and the New York State Office of Information Technology Services (ITS), the state agency will bring critical information on the NY-Alert website into compliance with web accessibility standards within six months, so that individuals who use screen readers can ensure they receive urgent emergency notifications, including time-sensitive alerts about dangers like hurricanes, floods, fires, and winter storms. The agreement resolves a 2020 complaint filed on behalf of an individual plaintiff, Anne Chiappetta, and the American Council of the Blind of New York, Inc.
Plaintiffs brought the lawsuit because prior to this agreement, individuals who use screen readers to access visual information could not independently use the NY-Alert website to register for urgent alerts or to choose how to receive alerts, putting them at risk during an emergency. Blind individuals often walk and/or rely on public transportation to get around, and can be particularly affected by strong weather conditions that require sudden deviation from the routes that they are familiar with navigating. This makes it essential for them to receive weather and transportation warnings as early as possible, so that they can avoid dangerous or unfamiliar terrain.
In addition to making the existing NY-Alert website accessible, ITS will, over the next two years, conduct monthly accessibility testing, including manual user testing by a specialized third-party contractor, and provide accessibility training for employees and contractors who develop or post content to the NY-Alert website.
“Before this lawsuit, the NY-Alert website was unnavigable for me,” Plaintiff Ann Chiappetta said. “I was forced to rely on others to register and sign up for alerts, and I could not manage my own contact preferences on the site. I look forward to accessing what I need on the site soon, so I can choose the way I want to receive alerts and anyone else using a screen reader can, too.”
Karen Blachowicz, President of American Council of the Blind of New York, Inc. said, “We are happy to have brought about this agreement so when a weather disaster or other crisis hits, blind and low-vision New Yorkers and visitors have equal access to information they need to stay safe.”
“Recent storms and tragic flash flooding across New York have only underscored the importance of effective public emergency warnings that can reach everyone,” said Chloe Holzman, a staff attorney at Disability Rights Advocates. “We are pleased that ITS will be fixing NY-Alert’s accessibility barriers, so people who rely on screen readers are no longer excluded from urgent notifications designed to save lives.”