who are blind or have low vision - CMS (PDF)

go.cms.gov/omh IMPROVING COMMUNICATION ACCESS FOR INDIVIDUALS WHO ARE BLIND OR HAVE LOW VISION  2 INTRODUCTION Over 7 million adults in the United States (2.4 percent) and almost 8 percent of Medicare beneficiaries are blind or have low vision. 2 Most of these individuals were not born blind but lost their vision because of injury or disease. For example, diabetic retinopathy is among the leading causes of blindness among adults. 4 As the population ages, it is expected that age-related eye disease will further increase both the number of and average age of individuals who are blind or have low vision.5 3, 1, Research indicates that adults who are blind or have low vision are “substantially more likely to report poor, fair, or worsening health” when compared with adults who are not blind. Barriers related to written communication are ultimately associated with lower quality of care and poor health outcomes. , For many people who are blind or have low vision, effective communication in health care settings may require the provision of auxiliary aids and services, such as materials provided in braille, audio, large print, or accessible electronic formats. 8 7 6 One way health care organizations can help their staff members provide high- quality care when they are serving a patient who is blind or has low vision is to plan how they will provide effective communication and document their approaches in a comprehensive communication access plan. This resource describes how providers can assess their practices, develop such plans, and be prepared to implement accessible services, and suggests ways to improve the provision of health care to people with these types of disabilities.  3 This resource starts with an introduction to the importance of effective communication. The rest of the resource describes the different elements needed to meet the communication needs of the individuals they serve. As organizations go through the planning process, they can consider the elements discussed in this resource in the context of their organization- and population-specific needs. This resource is not intended to provide information about legal requirements nor give legal advice. Statements that an organization should do or should not do something simply refers to what organizations can do to plan for the most effective communication with patients and others.* *EntitiesthatreceivefederalfinancialassistanceshouldconsultwiththeU.S.DepartmentofHealth andHumanServicesOfficeforCivilRightstolearnabouttheirlegalobligationtotakereasonable stepstoensureequalaccesstotheirprogramsbypeoplewithdisabilities.SeetheOfficeforCivil Rights’website:https://www.hhs.gov/civil-rights/for-individuals/disability/physical/index.html.  4 To plan to serve those with different communication needs, an organization may consider the following steps. Planning efforts should be tailored to the individual organization and typically include: • Needs assessment NEEDS ASSESSMENT TRAINING EVALUATION PROVISION AND TYPES OF SERVICES Through the needs assessment, organizations can begin to understand what types of needs their patients have. Active planning can help an organization be better prepared to effectively meet the communication needs of their patients. Further, periodically updating plans can also help ensure organizations make the provision of auxiliary aids and services part of standard operating procedure and, ultimately, better meet the communication needs of all patients. HOW DOES AN ORGANIZATION PLAN TO IMPROVE COMMUNICATION?  5 WHAT TYPE OF COMMUNICATION ACCESS PLAN DOES THIS RESOURCE COVER? This resource focuses on the development of a communication access plan to support the needs of people who are blind or have low vision. While this document mostly focuses on the needs of patients themselves who are blind or have low vision, other individuals involved in the provision of care (such as parents or children of a patient) may also require aids or services for effective communication. It is important to note that communication access plans can be beneficial to any person who needs aids or services for effective communication. To support providers in their efforts to meet the needs of their diverse patients, the Centers for Medicare & Medicaid Services (CMS) Office of Minority Health (OMH) has developed two other related resources — Improving Communication Access for Individuals Who Are Deaf or Hard of Hearing and a Guide to Developing a Language Access Plan for Individuals with Limited English Proficiency. An organization may choose to develop three distinct plans to meet the diverse needs of individuals in these populations or instead choose to develop a single comprehensive plan that combines content related to each group. WHY PLAN FOR EFFECTIVE COMMUNICATION? Vision loss can cause communication barriers, ultimately leading to adverse consequences for a patient’s health and well-being. Communication access plans are based on the awareness that people may have problems with vision and that there are ways to accommodate their vision needs to ensure effective communication. This often depends on the length, complexity, nature, and importance of the communication. Planning can prompt an organization to thoughtfully assess many different elements related to ensuring effective communication with individuals who are blind or have low vision that they may not have otherwise considered. This resource uses a variety of terms to describe vision loss and blindness and to capture a range of vision capacity and need for communication services. Unless referencing terms used in a specific citation, this resource uses the phrase “blind or low vision” throughout.  6 WHICH ORGANIZATIONS WOULD BENEFIT FROM HAVING A COMMUNICATION ACCESS PLAN? An organization might want to plan for communication access if it serves individuals who may need auxiliary aids and services or reasonable accommodations for effective communication: • Auxiliary aids and services are equipment, services, and other methods of making visually delivered materials available to people who are blind or have low vision (or making aurally delivered information available to people who are deaf or hard of hearing). • A reasonable accommodation is any reasonable change in the way that a health care entity provides services or in the way that it requires individuals to do things. Some people who are blind or have low vision need reasonable accommodations instead of, or in addition to, auxiliary aids and services in order to have an equal opportunity to participate in and benefit from health care programs. To ensure effective communication with individuals who are blind or have low vision, an organization might need to provide auxiliary aids and services or reasonable accommodations, such as: • Audio recordings • Materials and displays in braille • Large print materials • Screen readers • Allowing a flexible appointment time to accommodate an individual being driven to appointments by someone else whose availability to drive is unpredictable • Letting someone other than the patient sign a form as proxy for an individual who is blind or has low vision The following sections discuss ways organizations can develop a communication access plan and actively plan to provide effective communication.  7 Assessing the community’s needs allows for better care planning and population health management. HOW TO DEVELOP A COMMUNICATION ACCESS PLAN Organizations can work through the following steps to better support their patients who are blind or have low vision. As organizations work through each step, they can document how they will provide effective communication in their communication access plans. One significant step toward improving communication is to assign an existing employee or hire a new employee to serve as a disability rights advocate or disability accommodations coordinator. This person could be responsible for overseeing compliance with federal disability rights laws, as well as overseeing and helping plan for the provision of reasonable accommodations and auxiliary aids and services for people with disabilities, including those who are blind or have low vision. 9  8 NEEDS ASSESSMENT While the format of communication action plans can vary, the first section of an effective plan normally details a organization’s needs assessment. This section describes the needs of current and prospective health care patients who are blind or have low vision; their “companions,” which includes family members and others involved in the individual’s care; and members of the public who are blind or have low vision. The needs assessment can explore the number of individuals with communication needs in the service area, as well as the extent of their needs for services (including where they interact with a given entity). Organizations can consider establishing a reliable data collection process or analyzing existing sources of data to better understand the community’s needs. Assessing the community’s needs allows for better care planning and population health management. Organizations in the community that work with people who are blind or have low vision may help inform the needs assessment. NUMBER OF PEOPLE WITH COMMUNICATION NEEDS Organizations can start by identifying the number of people they currently serve who are blind or have low vision, as well as how many they are likely to serve. A health care organization may be able to analyze internal data sources—such as call center information, data collected by navigators, and electronic health records—to understand how many people who are blind or have low vision already interact with the organization. Knowing the number of people who are blind or have low vision in a service area can give an organization a general sense of how many people may need some sort of auxiliary aid or service or accommodation for effective communication. However, organizations must still take steps to provide effective communication to each individual who is blind or has low vision;  9 organizations cannot tell what an individual will specifically need by understanding the number of people with needs in a service area. VARIATION OF NEED WITHIN A DIVERSE POPULATION People who are blind or have low vision have varying degrees of residual vision. This variation in residual vision, as well as the variation in the types of assistive devices different people use, can affect the types of services that are most likely to ensure effective communication. For example, an individual with a “visual impairment” (i.e., a functional limitation of the eye[s] or visual system) who has low or blurred vision may need large-print and high- contrast materials, whereas a person who is completely blind may need materials in braille. 10 Notably, even individuals with the same visual limitations might require different auxiliary aids and services or reasonable accommodations for effective communication. Finally, because a patient’s need for auxiliary aids and services or reasonable accommodations might not be apparent to staff, it is important to have a plan for how to help individuals regardless of whether staff can observe a disability. POINTS OF CONTACT People who are blind or have low vision might require different types of auxiliary aids and services depending on where and how they interact with different staff across an organization. Considering the various points of contact at which a patient, companion, or member of the public is most likely to interact with providers and other staff can help organizations identify where auxiliary aids and THE DEAF-BLIND COMMUNITY Deaf-blindnessisaconditioninwhichthecombinationofhearingandvisual lossescanresultinalteredcommunication,developmental,andeducationalneeds. Additionally,individualswithdeaf-blindnessmayexperienceawiderangeof sensoryimpairments.IntheUnitedStatesalone,approximately35,000to40,000 individualsaredeaf-blind. Communicatingwithpeoplewhoaredeaf-blindcanrequireadditionalservicesand accommodations.Anyorganizationinterfacingwiththiscommunityshouldensure thatservicesuniquetothispopulationexist,beyondtheaccommodationsforthe deafandtheblind. Source:Miles,B.Overview on deaf-blindness.DB-LINK,NationalInformationClearinghouseonChildren WhoAreDeaf-Blind.(2008.Availableat:https://www.nationaldb.org/info-center/overview-factsheet/) AccessedJuly27,2020.  10 services or reasonable accommodations may be needed. Each of these points of contact provide an opportunity for staff to make individualized determination of needs by asking patients if they need auxiliary aids and services or accommodations, and if so, what they need. The figure illustrates common points of contact, which include appointment scheduling, security, reception desks, paperwork, examination rooms and pharmacies. At each point of contact, organizations can think about what barriers an individual who is blind or has low vision might experience and what auxiliary aids and services or reasonable accommodations could help address those barriers. Organizations can also consider how to train their employees on the types of auxiliary aids and services that are available and how they can be used to facilitate effective communication. Once this information is considered, organizations can then include specific details in their communication access plans about how employees will be able to access and provide specific auxiliary aids and services or reasonable accommodations at specific points of contact. Details on the specific points of contact are discussed in the following sections. Appointment Scheduling Security/ Information Desk Reception Paperwork Examination Room Pharmacy Consumer  11 Security and information desks are often a first point of contact for a patient who is having difficulty navigating a health care facility. A communication access plan might describe how security guards and those who staff information desks will identify that an individual might need auxiliary aids and services, what types of aids and services are available, and where to find them. For example, the organization might make available a large-print or tactile map of the facility. Additionally, these individuals will need to understand that service animals are allowed in a health care facility, even when other animals are not. SECURITY/ INFORMATION DESK The reception area at a provider’s office is also often a first point of contact. Communication access plans can include information for front desk or reception staff, such as the availability of written and educational materials in alternative formats, and policies or information about how the check-in process might need to change to accommodate a person who is blind or has low vision. RECEPTION Once an examination is completed, patients are often directed to a pharmacy to fill a prescription. At the pharmacy, an individual who is blind or has low vision may need non-visual cues, including an audible indicator that a prescription is ready for pickup and instructions about how to take the prescribed medication. Pharmacists may need to give instructions orally, and labels might need to be printed in braille or provided in an alternative format.11 PHARMACY Individuals who are blind or have low vision might need assistance in reading or completing forms, such as signing in for appointments, applying for insurance, reading educational information, or signing discharge paperwork. The communication access plan can specify what types of documents will be available in alternative formats or be read aloud. It is important to note that reading a form aloud in a public space may pose privacy concerns, particularly when an individual is expected to provide answers verbally. The communication access plan can explain whether there is a specific private or semi-private location where forms can be completed with assistance and who will provide the assistance. For example, the plan might specify that a medical assistant or nurse reads the forms aloud in an examination room and helps the patient fill them out as part of the check-in process, or it might specify other types of assistance. The communication access plan can also identify the type and location of the auxiliary aids and services or accommodations available. PAPERWORK In an examination room, health care providers will need to know about the types of auxiliary aids and services and reasonable accommodations available and how to use them to facilitate effective communication. In an examination room, providers can announce themselves as they enter the room and verbally describe their processes for providing care to help increase comfort and quality of care. EXAMINATION ROOM The scheduling process can provide an opportunity to collect data on patient needs. Staff can ask all patients whether auxiliary aids and services or reasonable accommodations will be needed for an appointment, and if so, what will be needed. The information captured during the scheduling process can be documented in the patient’s medical record and verified for accuracy when the patient checks in so the provider can use it. APPOINTMENT SCHEDULING  12 The auxiliary aids and services needed for effective communication vary among people who are blind or have low vision. PROVISIONS AND TYPES OF AVAILABLE SERVICES The second section of an organization’s communication access plan will typically consider individuals’ varied needs while identifying the services it will provide to meet those needs in both outpatient and inpatient settings. This section typically includes details about what is available, as well as when and how auxiliary aids and services or reasonable accommodations will be provided. This section 12 of a communication access plan may also include information about how and where the organization will notify the people it serves about the availability of services. Organizations can consider including information about the availability of services in a range of accessible formats at the same points of contact that are identified during their needs assessment.  13 The auxiliary aids and services needed for effective communication vary among people who are blind or have low vision. As noted in the previous section, an individualized determination of need is necessary and can be conducted at various points of contact. For example, the majority of people who are blind or have low vision do not use braille. In a communication access plan, organizations may encourage staff to ask patients how they prefer to receive information. Additionally, not all people who would benefit from auxiliary aids and services or reasonable accommodations have an obvious need—some disabilities are hidden. To help address less visible needs, organizations can proactively consider asking about specific needs at various access points. Further, individuals might have multiple disabilities, which might affect the types of auxiliary aids or reasonable accommodations they would need. 13 To ensure effective communication, an organization might address the following in a plan: • Which materials to provide in braille, large print, or other alternative formats. These could include but are not limited to, enrollment paperwork, patient education materials, after-care summaries, paper prescriptions, prescription labels or instructions on how to take a medication, and receipts for payment. 14 • What type of accessible signage to produce, whether tactile (using braille or raised text) or high-contrast. • What steps to take to produce materials in alternative formats, such as specific information about who decides which materials will be converted into alternative formats, who is responsible for converting them, and the contact information for a vendor who can produce the materials (e.g., in braille). • If producing large print materials, what constitutes large print (typically considered as 18-point or larger sans serif font) or resources to consider, such as the Best Practices and Guidelines for Large Print, published by the American Council of the Blind. • Whether or not to provide certain materials, such as enrollment paperwork, in an electronic format accessible through a screen reader. More information on electronic formats is included in the box Navigating Online Content. • At what points and how to use verbal cues to more effectively communicate with patients who are blind. Different aspects related to verbalizing is discussed in more detail below.  14 VERBALIZING People who are blind or have low vision may rely on verbalized instructions or directions for effective communication at different points of a patient visit. Options for organizations are described below. • Assist patients with written documents or paperwork. Reception staff may be asked to read aloud written materials, such as check- in paperwork. When aiding a patient with sensitive paperwork or written documents, it is important to maintain the patient’s privacy. For example, an organization may have staff ask whether an individual needs assistance and if so, in a private setting, read a document aloud to the patient or assist with filling out forms.12 • Identify oneself verbally upon entering a room. During most health care visits, a patient interacts with multiple providers, including medical assistants, nurses, and doctors. A communication access plan can describe how providers and staff will verbally identify themselves when they enter a room. For instance, providers can initiate introductions by addressing the patient by name. Staff can consider verbally identifying themselves to all patients with their name, title, and role (e.g., “Hi, I’m Wanda, the medical assistant. I’m going to be taking your vitals and asking you some questions about the purpose of your visit before Dr. Long comes in for your examination.”) This approach can be particularly helpful for facilitating communication between a provider and a person with a hidden disability (e.g., someone who may not “look” blind). • Ask for consent before physical touch during an examination. Not only is consent an important part of any physical examination, but people who are blind or have low vision, Individualswhoaredeaf-blindarelikelytoneedadditionalanddifferentservicesthan thosewhoareblindandrelyonauditorycues.Whilebrailleandtactiletextmaybeused, otherservicesmaybeappropriateaswell: • Hand-over-handinterpretersplacethelistener’shandslightlyonthebackofthe signer’sownhandanduseamodifiedversionofthelocalsignlanguage. • Tactile fingerspellinginterpretersmanuallyspelloutwordsandmayusedifferent manualalphabets(e.g.,AmericanSignLanguage). • Tracking interpretersplacetheirownhandsonthesigners’tohelpthemtrackthe signsvisually(becausethelistenertypicallyhasalimitedfieldofvision). • Brailtalk tactile communicatorscontainbrailleandraisednumbersandletters. Source:AmericanFoundationfortheBlind.ADA Checklist: Health Care Facilities and Service Providers: Ensuring Access to Services and Facilities by Patients Who Are Blind, Deaf-Blind, or Visually Impaired.AccessedApril1,2020. ALTERNATIVE APPROACHES FOR PEOPLE WHO ARE DEAF-BLIND  15 particularly women, are significantly more likely to have been victims of a violent crime or sexual assault than people without disabilities. Providers can take care by verbalizing their actions in addition to thoroughly obtaining consent (e.g., by asking, “Is there anything in your history that makes seeing a practitioner or having a physical examination difficult?”) and practicing trauma- informed care when necessary to encourage empathetic and understanding actions. 15 • Take a medical history orally. Often a nurse or medical assistant will discuss a patient’s medical history and reason for the visit. The communication access plan can explain how staff will collect this type of information— audibly, clearly, and privately — to facilitate the interaction between patient and provider. • Provide other auditory cues as needed. Additional types of auditory cues may be needed to facilitate effective communication for people who are blind or have low vision. For example, at the reception desk, the staff can audibly indicate the return of a credit card at patient check-out rather than simply putting the card on a counter and expecting the patient to see where it has been placed. In developing a communication access plan, organizations can consider the need for other types of auditory cues and describe how they will provide them if needed. Organization staff may need to provide specific and clear verbal directions to assist a patient who is blind or has low vision in navigating through a facility or even within a room. For example, staff might be instructed to say, “To find the cardiac rehabilitation unit, go to the end of this corridor and turn left, and it is the fifth room on your right.”12 • Sighted/human guide techniques. A sighted person can serve as a guide for a person who is blind or has low-vision as they work to navigate to an examination room or throughout another part of a patient visit. In this approach, the patient holds the guide’s arm lightly above the elbow, which allows the patient to “feel or follow the guide’s direction.” An individual may not want or need this type of assistance, but including information in the communication access plan about the basic principles behind ssum verci dolorporem vid maximi, et as sinis dene this technique may help better prepare an organization’s staff in the event that a patient requests such assistance. 16 NAVIGATING ONLINE CONTENT Forpeoplewhohavelowvisionorareblind,navigatingtheinternetand electronicelementsofapatient’sexperience,suchaspatientportals,online pharmacies,andwebsites,canbechallengingorimpossibleifthatcontentisnot accessibleand/ornotcompatiblewithassistivetechnology.Creatingaccessible onlinecontentisimportant,asisworkingtomakewebsitesandallinformation presentedonthemaccessible. Organizationscanensurethatwebsitesarecompatiblewithscreenreaders,common softwareprogramsthatallowuserswhoareblindorhavelowvisiontoreadthe textdisplayedonthescreenwithanaudiospeechsynthesizerorbrailledisplay. Organizationscanalsoprovideimagedescriptionsoralternativetextonlineforpeopleusingscreenreaders.