2015 White House Conference on Aging

Read the:

• Letter to the President
• List of signatory organizations
• Report: Feedback on the Experiences of Older Americans with Vision Loss: Four Topical Areas Identified in the 2015 White House Conference on Aging

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June 26, 2015

The President
The White House
1600 Pennsylvania Avenue, N.W.
Washington, DC 20500

Dear Mr. President,

We, the undersigned organizations representing and serving the 21.5 million Americans living with vision loss, are grateful for the opportunity to submit these recommendations in response to the White House Conference on Aging. In addition, we have further developed an analysis of extensive feedback gathered from older Americans and service providers across the United States, providing a compelling narrative of the challenges and opportunities at the intersection of aging and vision loss.

2015 is a year of celebrations and anniversaries for all Americans and especially for the aging and disability communities. We are so pleased that the upcoming White House Conference on Aging on July 13^th will take place just one day prior to the 50^th anniversary of the Older Americans Act and just weeks ahead of the celebration of the 25^th anniversary of the Americans with Disabilities Act and the 50^th anniversary of Medicare and Medicaid. As leading organizations in the field of blindness and vision loss, we hope that the coincidence of these anniversaries will emphasize the profound relevance of disability rights, accommodations, and services for older Americans.

Almost 50 percent of Americans over age 64 reported some level of disability in the 2010 Census, with 13.5 percent reporting difficulty seeing. Additionally, the prevalence of visual impairment increases dramatically with age. Vision loss significantly impacts the lives of older Americans across all four of the topic areas for the 2015 White House Conference on Aging: healthy aging, long-term services and supports, elder justice, and retirement security. Furthermore, the combined impacts of aging and vision loss and the aging of a large generation put significant strains on medical, rehabilitation, and income security systems and programs.

In connection with the 2015 White House Conference on Aging, the American Foundation for the Blind (AFB) collected feedback from older Americans and service providers around the United States, through surveys, discussion forums, and a “National Conversation on Aging and Vision Loss” at the April, 2015, AFB Leadership Conference. The response was quite clear in articulating the need for a systemic approach to ensure that older Americans who are blind or visually impaired receive the training in independent living they need to carry out everyday tasks, that they are able to obtain critical technologies to enhance their health, independence and safety, and that they are able to access appropriate support services such as transportation.

The American Foundation for the Blind analyzed the feedback received and identified the following critical issues:

• The primary health programs serving older Americans, Medicare and Medicaid, do not cover technology and specialized services (e.g. low vision devices, rehabilitation therapy, etc.) for older Americans who are blind or visually impaired. A comprehensive reevaluation of systems serving older Americans should ensure fiscal support and coordination of research and dissemination of services and assistive technology to enhance independence and quality of life for persons who develop vision loss at any stage of life.
  A common refrain in feedback gathered by AFB related to the White House Conference on Aging is reflected in the following quotation: “Aids for vision such as glasses, magnifiers and talking devices should be covered. This could mean the difference between a person being independent and having to have a family member or hire someone to provide these services.”
• Service delivery systems addressing the needs of older Americans are fragmented and poorly coordinated. The federal and local agencies that support rehabilitation services for older people too often do not coordinate with agencies that provide aging services and vice-versa. We recommend that Older Americans Act programs be required to demonstrate and report on ongoing collaboration among these programs, especially the Chapter 2 Independent Living Services for Older Individuals (OIB) Program, a federal program established through the Rehabilitation Act of 1973 (as amended) and administered through vocational rehabilitation services in each state and territory. Likewise, the Chapter 2 programs should be required to document collaboration with the Older Americans Act programs.
• Funding for specialized services for older adults with vision loss is insufficient. Important services do not reach many of those who have the greatest need of assistance – including those in rural areas, those who are isolated from social and family networks, and those who have additional disabilities and medical conditions (especially deafness/hearing loss, memory loss, and diabetes). At a minimum, full funding is needed for the OIB program, a federal program authorized by the Vocational Rehabilitation Act and administered through vocational rehabilitation services in each state.
  AFB heard from seniors and service providers that, “there seems to be a lack of adequate vision rehab professionals and funding to serve seniors with low vision/vision loss. Priority is often placed on ‘working age adults’ in terms of funding. This becomes a quality of life issue as well as safety issue when seniors are struggling with vision loss without the benefits of vision rehab training and services.”
• The number of qualified professionals providing supports for adults with vision loss is vastly inadequate to meet the service delivery needs of the growing population of older Americans with vision loss. Targeted funds are needed to support training and employment of vision professionals, as well as to provide pre-service and in-service training for service providers, caregivers, and healthcare workers who provide in-home, community-based, and residential services.
• Older Americans with vision loss can continue to live independent and fulfilling lives if given access to appropriate home and community-based supports for carrying out everyday tasks. Seniors should have access to qualified, trusted assistance for reviewing printed materials and managing finances in a way which respects their independence and privacy. Additionally, all Americans – particularly seniors –benefit from affordable, reliable public transportation access, not only for medical appointments and groceries, but for social activities, visiting family, and pursuing their retirement goals and aspirations.
  AFB routinely heard from people with vision loss that, “Public transportation is critical for all persons with vision loss to maintain their independence. Unfortunately however, public transportation is often limited or not available at all. This results in older individuals who are blind or experiencing vision loss being dependent on friends and relatives for transportation, or being housebound.”
• Economic security is even more precarious among older Americans who are likely to have had fewer employment opportunities or to have retired early due to unexpected vision loss. These individuals significantly economically disadvantaged as a direct result of their vision loss. Title V of the Older Americans Act should be amended to require that programs funded through Title V provide assistance to these individuals, regardless of income status.
  One respondent shared with AFB, “Many individuals were diagnosed after retirement and did not even think about planning to have finances to pay for video magnifiers, copayments for injections related to AMD; transportation, in home assistance or options for transportation. Those who do not have the financial resources – do without; those who have financial resources found that retirement funds have to be diverted from more fun/social expenditures to ‘eye care needs.’”
• To ensure equal access, overcome employment barriers, and promote the highest possible quality of life for Americans who are visually impaired, we must have a fundamental improvement in the public understanding and acceptance of low vision and blindness – from retail product and service providers to medical practitioners to policymakers. Employers, caregivers, neighbors, and colleagues must overcome misconceptions and stigma in order to see the possibilities and to hold high expectations for people with vision loss. Existing OAA public education programs should include information about older persons with vision loss.

We strongly encourage the administration to consider these important themes as they intersect with issues across and beyond the four topical areas of the White House Conference on Aging. Furthermore, following this letter, we are sharing a more detailed summary of the specific findings from our data collection, organized by the topical areas. The feedback we gathered highlights the strengths, skills, challenges, and needs of older Americans with vision loss across the United States.

Sincerely,

Academy for Certification of Vision Rehabilitation & Education Professionals
Alaska Center for the Blind and Visually Impaired, Anchorage, Alaska
Alphapointe, Kansas City, Missouri
American Council of the Blind (ACB)
American Council of the Blind of Minnesota, Minneapolis, Minnesota
American Council of the Blind of Texas, Austin, Texas
American Foundation for the Blind
Appleseed Chapter of Ohio American Council for the Blind, Mansfield, Ohio
Arkansas Lighthouse for the Blind, Little Rock, Arkansas
Association for the Blind & Visually Impaired Charleston, Charleston, South Carolina
Association for the Blind & Visually Impaired, Grand Rapids, Michigan
Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER)
Association for Vision Rehabilitation and Employment, Inc., Binghamton, New York
AER Division on Aging (Div. 15)
Blind and Vision Rehabilitation Services of Pittsburgh, Pittsburgh, Pennsylvania
California Council of the Blind, Sacramento, California
The Carroll Center for the Blind, Newton, Massachusetts
Center for the Visually Impaired, Atlanta, Georgia
Central Association for the Blind and Visually Impaired, Utica, New York
Cincinnati Association for the Blind & Visually Impaired, Cincinnati, Ohio
Clovernook Center for the Blind and Visually Impaired, Cincinnati, Ohio
College of Education and Rehabilitation at Salus University, Elkins Park, Pennsylvania
Community Center for the Blind and Visually Impaired, Stockton, California
Connecticut Council of the Blind, Guilford, Connecticut
Council of Citizens with Low Vision International
Delta Gamma Center for Children with Visual Impairments, Richmond Heights, Missouri
Earle Baum Center of the Blind, Inc., Santa Rosa, California
Florida State College at Jacksonville, Vision Education & Rehabilitation Center, Jacksonville, Florida
Greater Orlando Council of the Blind, Orlando, Florida
Guide Dog Users, Inc.
Hadley School for the Blind, Winnetka, Illinois
A Heart Staffing, Franklin, Virginia
Helen Keller Services for the Blind, Brooklyn, New York
Independence for the Blind of West Florida, Pensacola, Florida
International Association for Indigenous Aging
Junior Blind of America
Justice in Aging
Kansas Association for the Blind and Visually Impaired, Topeka, Kansas
Leader Dogs for the Blind, Rochester, Michigan
Lighthouse Central Florida Inc., Orlando, Florida
Lighthouse for the Visually Impaired and Blind, Port Richey, Florida
Lighthouse Guild, New York, New York
Lighthouse Louisiana, New Orleans, Louisiana
Lighthouse of Broward, Fort Lauderdale, Florida
Lighthouse of Pinellas, Inc., Largo, Florida
Low Vision Clinic, Meredith W. Morgan University Eye Center, School of Optometry, University of California at Berkeley, Berkeley, California
The Low Vision Section of the American Academy of Optometry
Massachusetts Association for the Blind & Visually Impaired, Brookline, MA
Massachusetts Commission for the Blind, Boston, MA
Midwestern University - Eye Institute, Glendale, Arizona
My Blind Spot, Inc., New York, New York
My Indey, LLC, Phoenix, Arizona
National Accreditation Council for Blind and Low Vision Services
National Council of State Agencies for the Blind, Inc.
National Industries for the Blind
NewView Oklahoma, Oklahoma City, Oklahoma
North Central Sight Services, Inc., Williamsport, Pennsylvania
OWL-The Voice of Women 40+
Perkins, Watertown, Massachusetts
San Antonio Lighthouse for the Blind, San Antonio, Texas
San Diego Center for the Blind, San Diego, California
SightConnection, Seattle, Washington
Society for the Blind, Sacramento, California
South Dakota Association of the Blind, Sioux Falls, South Dakota
St. Louis Society for the Blind and Visually Impaired, St. Louis, Missouri
Tampa Lighthouse for the Blind, Tampa, Florida
Virginia Department for the Blind and Vision Impaired, Richmond, Virginia
VISA (Visually Impaired Support & Assistance), Carteret County, North Carolina
Vision Loss Resources, Minneapolis, Minnesota
VisionServe Alliance
VISIONS/Services for the Blind and Visually Impaired, New York, New York
Vista Center for the Blind & Visually Impaired, Palo Alto, California
Washington Council of the Blind, Federal Way, Washington

Note: List of supporters updated as of 7/2/2015

cc: Nora Super, Executive Director of the 2015 White House Conference on Aging
Sharon Block, Senior Advisor at the White House Office of Public Engagement
Maria Town, Disability Liaison, Associate Director, White House Office of Public Engagement
Sylvia Mathews Burwell, Secretary of the U.S. Department of Health and Human Services
Michael Yudin, Assistant Secretary, Office of Special Education and Rehabilitation Services, U.S. Department of Education
Carolyn W. Colvin, Acting Commissioner of Social Security
Jennifer Sheehy, Acting Assistant Secretary, Office of Disability and Employment Policy, U.S. Department of Labor
Judith Heumann, Special Advisor for International Disability Rights, U.S. Department of State
Andy Slavitt, Acting Administrator, Centers for Medicare and Medicaid Services
Kathy Greenlee, Administrator of the Administration for Community Living, Assistant Secretary for Aging, U.S. Department of Health and Human Services
Aaron Bishop, Commissioner, Administration on Disabilities, Administration for Community Living
Janet LaBreck, Commissioner, Rehabilitation Services Administration
Paul Sieving, Director, National Eye Institute, National Institutes of Health
John Tschida, Chair, Interagency Committee on Disability Research, Director, National Institute on Disability, Independent Living and Rehabilitation Research, Administration for Community Living
Melissa Stafford-Jones, Regional Director – Region 9, U.S. Department of Health and Human Services
Ben Belton, Senior Advisor to the Acting Commissioner, Office of the Commissioner, Social Security Administration
Kasia Witkowski, Associate Director, Office of Intergovernmental and External Affairs, Department of Health and Human Services

Senate Special Committee on Aging:
Sen. Susan Collins, Chair
Sen. Claire McCaskill, Ranking Member

Congressional Vision Caucus:
Rep. Gene Green, Co-Chair
Rep. David Price, Co-Chair
Rep. Ileana Ros-Lehtinen, Co-Chair
Rep. Phil Gingrey, Co-Chair

Bipartisan Disabilities Caucus:
Rep. Jim Langevin, Co-Chair
Rep. Gregg Harper, Co-Chair

Feedback on the Experiences of Older Americans with Vision Loss: Four Topical Areas Identified in the 2015 White House Conference on Aging

In connection with the 2015 White House Conference on Aging, AFB collected feedback from older Americans and service providers around the United States, through surveys, discussion forums, and a “National Conversation on Aging and Vision Loss” at the April, 2015, AFB Leadership Conference in Phoenix, Arizona.

Healthy Aging

At the 2015 AFB Leadership Conference in Phoenix, Arizona, Dr. John Crews from the Centers for Disease Control and Prevention spoke to a large audience of older Americans and vision/aging service providers, emphasizing the particular challenges of reforming our public health system in a way that recognizes visual impairment as increasingly common amongst Americans who are living longer lives. He cited forecasting studies which predict 30.1 million cases of cataracts in the year 2020, and by 2050, 7.3 million cases of glaucoma, 17.8 million cases of macular degeneration, and 16 million cases of diabetic retinopathy. Among people with visual impairments over age 65, 25.5% report having had a stroke (8.6% in the population without vision loss), 29.4% have kidney disease (4.3% in the population without vision loss), and 19.9% have asthma (10.7% in the population without vision loss). In some cases, visual impairment is a symptom of health conditions (like diabetes), but in other cases, it is very likely that living with visual impairment contributes to a general decline in health which makes people more susceptible to other conditions. The following are key concerns related to health aging, as described by older Americans with vision loss and professionals and caregivers who work with this population.

Managing medications and monitoring diabetes

Feedback from service providers and older Americans with vision loss:

• “I do think that mis-management of medicines may be a cause of people being forced or moved into more supervised living situations.”
• “As a [visually impaired] daughter of aging parents, dealing with the meds and figuring out what they need and reading the pill bottles are very difficult.”
• “I see a lot that are taking medications because they need to but don’t know what they are taking because they cannot see the Rx label. There are labeling techniques, magnification, and etc. but most are unaware of this unless they receive services that address the needs of the visually impaired.”
• “My mother was diabetic and unable to see the numbers on the syringe. I needed to draw her insulin and do her blood sugars. Medical insurance doesn't cover the strips for the talking meters, they use to but now the rules have changed and they don't anymore. Medicare and MediCal don't cover any vision aids.”

Older adults with vision loss often take numerous medications, including pills, eye drops, and insulin. They also may need to monitor their weight, blood sugar, blood pressure, or other health indicators which most patients can assess independently and conveniently from home. Mismanaging any of these medicines or procedures can have serious, life-threatening consequences; therefore people are understandably wary of trusting themselves or their loved-ones with vision loss to sort one medication bottle from another or to measure and take an accurate dosage at the appropriate time. Assistive technologies like talking meters and hand-held magnifiers can assist patients in accurately managing their medications, but these devices can be expensive and are not covered by Medicare, even when prescribed by a low-vision specialist. Other medication management solutions are being adopted by certain pharmacy chains and/or may be introduced to seniors by trained rehabilitation therapists; however, pharmacies must adopt these tools and train their staff, and older Americans with vision loss must have access to quality rehabilitation services for these solutions to be implemented effectively.

Accessing medical care

Feedback from service providers and older Americans with vision loss:

• “Blind people don't drive, so are limited in their health care provider choices to those accessible by mass transit, and to provider visit hours during the day. Since such hours are in high demand, blind patients are forced to take available hours way into the future, much like what happened at the Veterans Administration.”
• “I know I will have to stop driving very soon and am concerned about accessing my doctors' appointment. Senior transportation is very sparse where I live, taxis are expensive, and you have to be judicious in asking friends for transportation.”
• “I find it difficult to get to my appointments for my shots [a treatment for macular degeneration]. I have to travel 40 to 45 miles to get to the specialist. I no longer drive as macular degeneration has messed up my depth perception. My husband, soon to be 90, does not want to drive me that far so I have had to ask a neighbor to take me.”
• “I am now 68 years old and totally blind… Last year, I found that some doctors don't take Medicare or don't take my United Health Care supplement. I needed to see an ENT and no one in Tallahassee took my insurance. Fortunately, I could afford to pay a lowered fee $115 to see one of the doctors. Transportation is sometimes an inconvenience. My city has fairly good paratransit, but it requires reservations made 12 hours in advance with a one hour window for pick up and drop off. Sometimes I don't know how long I will be at an appointment, so I must find another means of getting home which might be an expensive cab fare.”

Seniors with vision loss who lose the ability to drive become dependent upon friends, family, volunteers, or paid assistance, or they are thrust into a public transit or paratransit system that has little flexibility and can be difficult to comprehend. In many rural areas, there are no public transportation options, and seniors must consider whether to relocate to cities with transit systems or to assisted living facilities with transportation provisions for medical appointments. Often this may mean leaving the neighborhoods where they have lived their entire lives, moving far from family members, and losing the security and independence of their familiar routines.

Limitations of private health insurance and Medicare also impact access to care for older adults who are blind/visually impaired. Seniors report that changes in benefits frequently mean they have few choices in providers, or they must switch from one eye specialist to another, or even that they can no longer receive essential medical care related to their eye conditions.

Accessibility of information

Feedback from service providers and older Americans with vision loss:

• “With the new requirements in clinical documentation, often the information is not in a state easily read by older eyes. Fonts too small, unclear on paper forms. No electronic standards that would allow me to keep the information myself and to make going from doctor to doctor to pharmacy and test results easy to access.”
• “Forms given out are not in large enough print, including the forms to be signed when receiving the injections for wet AMD [age-related macular degeneration].”
• “I can't use MyChart on line because of my vision, so getting my questions answered takes a long time sometimes.”
• “I also come across seniors who are having trouble reading and filling out medical forms due to their visual impairments, and who also may be having trouble understanding the forms on top of this limitation.”

Older adults with vision loss face numerous problems accessing important information related to their healthcare. Printed information – including consent forms, discharge instructions, educational pamphlets, and insurance paperwork – is often impossible to read and respond to for those with vision loss. Likewise, new “patient portals” on doctors and insurance companies’ websites are not easily accessible to seniors with visual impairments. Though websites increasingly comply with minimum accessibility requirements, which provide basic access to a proficient screen-reader users, the typical older adult who is losing his/her vision has not mastered the sophisticated access technology in order to navigate a complicated webpage.

Patient advocacy

Feedback from service providers and older Americans with vision loss:

• “My daughter… takes me to my doctor appointments and asks good questions that I wouldn't remember to ask. She takes notes and helps me be more in charge of my treatment. I can't imagine what people do when they don't have an advocate like I do.”
• “Every time there is an open enrollment, a number of individuals have to make agonizing choices relating to medical care providers. Due to medical providers opting out of some insurance plans or not accepting Medicare – the patient has to choose, what is most important – keeping their cardiologist/oncologist and losing their retinal specialist or vice versa. This is difficult when they have established a high level of trust with their retinal specialist – especially if they are receiving injections for wet AMD [age-related macular degeneration]. Many individuals report that their eye care providers and/or other health care providers discount their concerns/needs and feel that all they ‘hear’ is ‘after all what do you expect when you are 70/80+ years old.’”

Given the inaccessibility of information – and the frequent failure of professionals within the system to fully understand the implications of aging and visual impairment – older adults with vision loss need advocates and assistance to self-advocate within the complex healthcare system.

Staying healthy: Preventative care, exercise, and healthy eating

Feedback from service providers and older Americans with vision loss:

• “Cooking/shopping is more difficult; healthy foods, such as fruits and vegetables, are expensive for those on fixed incomes. Without proper training and devices, microwave and canned/processed foods are all some can manage to prepare for themselves in addition to fast food.”
• “Shopping was a big problem. Ability to prepare own meals was another problem... Some relied on prepared food that was high in sodium and fat. Many had hip and shoulder problems that limited mobility and ability to bathe, dress or prepare meals easily.”
• “Exercise is challenging without the proper mobility training and devices to aid in moving independently, such as a GPS. Depression from the lack of exercise and poor diet/weight gain can add to the issues faced by the visually impaired.”
• “Many clients—due to diabetes, old age, and a lot of years of immobility due to vision, have a hard time with orientation and mobility due to stamina/pain/muscles not being used/weight/blood sugar, exacerbated by old age.”

Proper nutrition and exercise are essential to maintaining quality of life; however, economic, transportation, and accessibility concerns become major obstacles for seniors with vision loss who wish to live independently. The presence of additional health conditions or disabilities can further limit a senior’s ability to shop for fresh foods, to prepare meals, and to engage in personal fitness activities such as walking outdoors or joining group fitness classes.

Mental health concerns: Depression and isolation

Feedback from service providers and older Americans with vision loss:

• “Having been fiercely independent, losing the ability to drive and be on her own has caused depression and frustration.”
• “I'm totally dependent on my family to get me to doctor's appointments, and it is very difficult to continually have to ask them to drive me to all of the various places I need to go. I have several other chronic health problems which require frequent visits to the doctor, procedures, or follow-ups. It is depressing to be so dependent.”
• “My slow vision loss from glaucoma and associated depression caused premature retirement.”
• “I am 57 years YOUNG! I would like to have a social life, but all hope of that is fading fast. I cannot get anywhere except to doctor's visits. It is so hard to prioritize this concern over health and safety issues, but sitting at home at night and all weekend wears thin after a while.”

Seniors shared many stories of ways in which vision loss has led to reduced independence to travel, socialize, and connect with friends, family, and neighbors. The isolation imposed by reduced work and volunteer opportunities, forced retirement, and a lack of pedestrian travel and transportation options can lead to a variety of health problems, particularly depression.

Mediating factors

Feedback from service providers and older Americans with vision loss:

• “As I get older I'm losing my hearing which significantly impacts my skills and abilities as a blind person”
• “One gentleman was under care for ‘severe’ dementia for three years before ILOB services became involved in his life. His neurologist/gerontologist/retinal specialist were all amazed that he was able to utilize a table top video magnifier to read and write! They all focused on their specialties and never consulted one another to address the possible effects of his vision loss on diagnosis of severe dementia and reduced daily functioning…and the retinal specialist allowed the diagnosis of dementia and lack of knowledge about the ILOB program to affect his level of functional expectation”
• “Most of my medical needs are met by my Uncle Sam and the Veterans Affairs Department, so I have no problems along these lines. The local VA Medical Center is very good at meeting my needs.”
• “It would be very difficult to do various things without assistance such as take medications and get to doctor's appointments. Fortunately my wife gives me the assistance I need.”
• “If one does not have a spouse or child to help - what do they do?”
• “No problem because I have the financial resources to hire drivers, as needed. This would be very, very difficult to navigate without financial resources”

Several factors make life easier or more difficult for older Americans with vision loss. The presence of additional disabilities is a complicating factor, with hearing loss, dementia, and diabetes all making healthcare more complex. By contrast, older Americans report that being eligible for benefits as a Veteran is especially beneficial. Veterans’ healthcare benefits cover low vision devices and the veterans’ healthcare system is providing excellent access to care. Another positive factor for some older Americans who are blind or visually impaired is the presence of a spouse or nearby family member who can provide support as a patient advocate, assistance with transportation, and help with medication management. Finally, if a person is fortunate to have substantial retirement savings or other financial resources, the ability to self-pay for technology, transportation, and other supports can help to ensure that a person is not dependent on unreliable systems or healthcare coverage which does not address vision-specific needs.

Proposed solutions

Feedback from service providers and older Americans with vision loss:

• “Need for increased funding to promote growth in the professions which will serve the aging population with vision loss-vision rehab therapists, gerontology specialists etc.”
• “Medicare should pay for assistive devices for people with low vision or no vision.”
• “Aids for vision such as glasses, magnifiers and talking devices should be covered. This could mean the difference between a person being independent and having to have a family member or hire someone to provide these services.”
• “I would like to encourage congress to pass laws that require pharmacies to all have available, and use, the ScripTalk Technology… to turn all information on prescription labels into speech. This would reduce the likelihood of making life-threatening mistakes, increase safety, and clarify the prescription dosage and directions to the person taking them.”
• “Even though I am considered legally blind, have had to give up my driving privileges (my independence) and need assistance I'm not used to asking for, I have yet to go through the proper channels (i.e. Commission for the Blind) to officially be labeled such and become eligible for all the benefits associated with being a senior and blind. I wish it could be a more simple process, say through your primary physician (eye doctor).”

In sharing their stories, seniors and service providers made many recommendations for policy and systems changes that would alleviate struggles and promote independence, health, and quality of life for those who are blind or visually impaired. Among the top recommendations were Medicare funding for low-vision devices and services and mandates for accessible equipment.

Long-term Services and Supports

The following quote from a participant in AFB’s survey on aging and vision loss is a poignant introduction to the difficulties faced by older Americans with vision loss with respect to long-term services and supports:

“Long term services or support are difficult to maintain if available at all. Most services are short term addressing immediate needs. Facilities, for the most part, do not employ persons with the knowledge base to truly assist the vision impaired individual. Most do not know where services are available – if at all. In rural Arizona this is compounded by lack of services and distance to or to receive services. Most rely heavily on family or friends, if available, for long term support. The ‘golden years’ aren’t very golden for many living with vision loss.”

Specific types of services and supports

AFB collected hundreds of comments related to the specific types of supports and services being received, as well as the supports and services that are desired by older adults with vision loss. The following quotations highlight some of the most urgent needs:

• “As the number of seniors with diabetic retinopathy and AMD [age-related macular degeneration] increase, it is going to be necessary for many of them to receive support services for tasks like ADL's [activities of daily living], diabetes self-care, medication management, mobility, maintaining good nutrition and personal safety. And many seniors have several complex medical issues beyond their eye disease which require vigilant monitoring and self-care - often overwhelming them. It is often hard to find in-home assistance that is affordable to support seniors who are "aging in place" and struggling with vision loss. Increasing the aging in place options with these support services can be more cost efficient in the long run. Another concern is that many facilities do not know how to assist their visually impaired residents and need training to build awareness and learn ways to accommodate...”
• “Support groups, resources, information about new or used expensive magnifiers, all could help as we manage my mom and her low vision.”
• “[There is a] need for increased funding to promote growth in the professions which will serve the aging population with vision loss – vision rehab therapists, gerontology specialists etc.”
• “It would be a great help to us to get subsidies to buy assistive technology, such as CCTVs [closed-caption televisions – a form of electronic magnification], etc.”
• “Adaptations for a visually impaired or blind person to be independent at home are generally not major. Because most people do not want to relinquish their independence, home care providers should be taught techniques to share with their clients so they can maintain as much independence as possible. Ultimately this would decrease the number of hours of help a person regularly needs. Adding tactile indicators to appliances, for example, might allow the visually impaired individual to prepare meals and do laundry.”
• “Today our assistive technology is spectacular but there [are] no training personnel to bring it to individuals who may have competency and funds but … remain unable to cross the chasm” of new skills and resources one must learn when adjusting to vision loss.
• “Medical services are readily available but socially supported rehabilitation almost impossible to obtain while I live in one of those "best places to retire." Services like SAAVI in Tucson and Phoenix do not extend to so-called "rural" Arizona. We have almost no certified vision rehab specialists, which includes essential orientation and mobility therapy, for safety and independence.”

Additionally, older Americans and service providers described the need for those with vision loss to have training in managing finances. Older adults who are blind or visually impaired also need assistance with job training and placement, legal and financial matters, and household maintenance and repairs. Furthermore, caregivers – both professional and family/volunteer – should be provided with information and support to assist them in providing appropriate care and to prevent burnout and reduce the potential for abuse.

Participating in services and receiving supports

Many barriers exist to older Americans with vision loss who may wish to access existing resources for services and supports. The following feedback from service providers and older Americans with vision loss highlights some of these barriers:

• “…they were told that due to age and health condition, they would probably be considered Status 2 with VR and therefore be placed on a wait list. This would eliminate their ability to obtain help through ILB, so both opted to remain with the ILB program to obtain some services, despite the fact that they could not benefit from training or adaptive aids that may assist in obtaining new employment.”
• “It is often difficult for seniors experiencing vision loss who live in rural areas to find these services.”
• “Many of these services have a minimum age requirement. Blind people come at all ages; many of them are below the age to qualify for such services. Meals on Wheels is an example, you have to be at least 60.”
• “The challenge is finding resources available to my mother. Catalogues are available with devises costing thousands of dollars but who can direct her on what to buy and help her with what may work?”
• “Doctors disdain the rehab services and thus do not offer referrals that could sustain a rehab infrastructure.”
• “Many individuals were diagnosed after retirement and did not even think about planning to have finances to pay for video magnifiers, copayments for injections related to AMD; transportation, in home assistance or options for transportation. Those who do not have the financial resources – do without; those who have financial resources found that retirement funds have to be diverted from more fun/social expenditures to ‘eye care needs.’”

Additional barriers include inter-agency conflicts and lack of collaboration, for example between a state workforce-oriented rehabilitation agency and a retiree-oriented agency or program for older adults. As with the healthcare system, limited transportation options, inaccessible infrastructure, and limited finances also prevent many seniors with vision loss from accessing supports and services which would increase their independence and quality of life.

Effectiveness of services and supports

For those older Americans with vision loss who do access various aspects of service and support systems, many times the services are inadequate or less effective than they could be at meeting their needs. Feedback to AFB from service providers and older Americans with vision loss included:

• “[In] long-term care facilities… a couple of my clients through ACBCO had a devil of a time with staff not understanding their situation, not knowing how (lack of training) to best be of assistance, not being patient, etc. A lot of it had to do with vision.”
• “My husband was blind, and I am blind. I was employed when my husband passed away and, because my time was limited, I arranged for some home care providers to come in and organize his medications. We had developed a system that worked for both of us, but the caregiver decided we weren't doing things correctly and reorganized our system. This meant my husband wasn't getting the right meds at the right time. I resumed the responsibility. Healthcare workers need to realize people may have developed their own techniques and work with them rather than change them without learning why things are done as they are.”
• “People [with vision loss] often go through training they do not need or want because the system says they must.”
• “Emergency help is often not available when there is an urgent issue for an individual.”

Another area of concern was the duration for which services could be available (services may be discontinued before the clients are fully trained or independent). Additionally, some adults with vision loss reported being routed to “charity” organizations which were under-informed and unprepared for appropriately addressing their needs and coordinating with the other public service and support systems.

Mediating factors

Factors such as additional disabilities could further complicate access to supports and services for older Americans with vision loss, while factors such as financial resources and support groups could improve access. Feedback from service providers and older Americans with vision loss included:

• “It was hard to get information about some of the things that could help me in my daily living. The support of my small group and the things I've learned have made a big difference in my life. People don't know about ILVSG [independent living vision support group] or can't get to one.”
• “Many aging & long term agencies do not address the issues regarding low vision/blindness and hearing loss. Environmental access issues, transportation, one to one supports, etc. There are very limited supports for individuals with vision (and hearing loss).”
• “Being in touch with the Center for Independence has gotten him in touch with housing assistance and peer counseling while being involved with the Western Visionaires Group. He feels very lucky to have gotten this recommendation and has created life-long friendships and advice.”
• “I compare my situation to an acquaintance with limited financial ability, and I am struck by the difference it makes in our ability to function and to get the services that we need. It is a shame that money is a driving force in getting the services that one needs with such a disability.”

Respondents in our surveys and discussions also mentioned the benefits of long-term care insurance for those who have it, as well as the positive influence of finding a “good fit” between the person with vision loss and the individuals and organizations providing him/her with services. To be most effective, support systems should take into account the individualized needs, personalities, and aspirations of older Americans with vision loss.

Proposed solutions

Service providers and older Americans with vision loss suggested several specific improvements to policies and systems related to long-term service and supports:

• “The people who finally are training me are great, they are just spread way too thin! There are barely a handful working at the rehab facility where I am served and they cover 30 counties. My counselor alone has a caseload of 30+ clients. I find myself begging for her time. Their pay needs to go up so many more students will go into this profession and so that there is an ability to compete with the VA for them. In the meantime, a better strategy needs to exist for those caught in the here and now. Group training? I know that would be far from ideal, but better than sitting at home for 18 months...”
• “Dressing and bathing and household organization and tasks become more difficult with aging and vision loss. Available help is insufficient and lack of personal finance makes it difficult to source additional help for independent living. If family members can be paid for support and care-giving, it may help some families to stay together and children may be able to stay home as care-giver if there is an income.”

Additionally, improvements are needed in public transportation options, particularly in rural areas. Additional funding and expanded programs must be available to support employment-related services for aging adults and skills training for adults who are not yet old enough to qualify for the Older Blind programs.

Retirement Security

“Working to provide for my family was great importance to me. Now that I don't see well enough to drive for business purposes or perform accounting activities, my financial contributions to my family are now pretty well fixed.”

Very little about retirement is secure for older adults with vision loss. Those adjusting to age-related visual impairment must also be constantly concerned about the insecurity of Social Security (especially Social Security Disability Insurance) and Medicare, as well as the numerous additional and unexpected expenses associated with age-related vision loss.

Limited opportunities to work

Most Americans who experience vision loss later in life have prior experience in productive employment. Those who have been blind or visually impaired for the majority of their lives are more likely to have been out of the workforce or under-employed at younger ages. Regardless of the age of onset, there are profound financial implications for the limitations in work opportunities for people with vision loss. Employers’ attitudes and acceptance create barriers to working, and an absence or insufficiency of transportation and employment-focused rehabilitation also prevents people from retraining or learning adaptive skills in order to maintain their employment. Service providers and older Americans with vision loss shared the following employment-related concerns with AFB:

• “I have been in the system since June 2014 and I have not been able to enter training or the workforce yet.”
• “For me, increasing vision loss means I can't drive. I don't live near a bus line, so transportation is a huge problem. First, a colleague drove me, but our schedules weren't always the same. I had to get a part-time job to decrease the number of times I would need transportation help. That cut my income in half. I'm looking for a job I can do from home, [but] most of these jobs require computer use, which – vision-wise – is [becoming more difficult].”
• “Many older people with vision loss remain in lower paying jobs their entire careers. That translates into lower social security benefits. Many older people with vision loss want to keep working part-time but can't find decent jobs.”
• “The real issue is the lack of positive employment services for persons who want to continue working after age 55 or 60. We know people can do it, but employers may not be so sure. This is even more challenging for persons who have a visual impairment and may be feeling forced to retire.”

Limitations in saving for retirement

The previously mentioned challenges to employment frequently directly translate into limited retirement savings for older adults who are blind/visually impaired, regardless of the age of onset of vision loss. The following quotes highlight particular concerns about retirement savings:

• “I have been blind all of my life, so getting older doesn't change anything because of my loss of vision. What does bother me is that it took many years before I got a job because of my vision… Because I started working so late in life, my financial situation upon retirement will become very bad. This worries me a lot. How do you live with very little money?”
• “My vision loss has had a huge impact on my financial situation. I was a full-time employed RN deemed disabled and am now collecting Social Security. I am only 57 years old. All of my retirement dreams have been squashed.”
• “Because of vision loss, I was never able to earn at my full earning potential and so my SSDI benefits are less. Many barriers such as adequate transportation, employers' attitudes, and worsening vision, etc. have caused me to take early retirement. It is a paltry amount and I could not live on it, yet alone save for years to come.”

Many older adults and service providers also emphasized the frustration of no longer having the financial resources and the independence to pursue the aspirations and goals they had for their retirement years.

Extra expenses related to vision loss

In addition to challenges in being able to work and save for retirement, older Americans with vision loss face numerous expenses as a result of their visual impairment. Some of the specific issues addressed in feedback to AFB included:

• “Vision loss comes with added/hidden costs, i.e. transport, adaptive technology and adaptive daily living items, home help to assist with household organization and tasks, maintenance and repairs, shopping, hair and nail care, medication organization, gardening, healthcare etc.”
• “When you already have invested in your home, it is difficult to relocate to better support the vision loss. The cost involved with this can be huge and often not an option.”
• “Special vitamins and moisture drops are essential, and not paid for by Medicare or health insurance.”
• “All it takes is one devastating medical issue to wipe out all your retirement savings.”
• “My insurance companies… have zero coverage for approximately $20,000 in talking devices (everything from a bathroom scale to a meat thermometer) I needed as I lost my vision. They did not even cover my white cane! If I had been paralyzed they would have coughed up money for a wheel-chair, transfer equipment, etc. Why the disparity?”

In rural areas, paying a private transportation service can be incredibly expensive, and even in assisted living communities and areas with paratransit systems, seniors may find that they have to pay for extra transportation assistance in order to have the flexibility to travel at certain times of day or to travel to places other than medical centers and grocery stores. Other expenses can be incurred traveling to conferences and support network meetings in order to learn more about resources and technology as well as internet and mobile phone services necessary for access to accessible documents.

Financial management and financial literacy

Older Americans with vision loss face unique challenges in managing their finances as well as day-to-day purchases. Service providers and older adults shared:

• “Often seniors quickly hand over control over their finances, often prematurely, for fear of making serious errors or pressure from loved ones. Often senior adults are unaware of devices and techniques to keep doing money management independently.”
• “Financial independence was also impacted because of the cost of paying someone else or relying on family to monitor their finances, pay bills, read mail, and do shopping for them. ”
• “I already have a lot of difficulty identifying our different bill currencies. So far I could have lost quite a bit of money except for the honesty of two clerks who realized my mistake. We need to differentiate our bills for people with vision loss or have some kind of tool that can read the dollar amount.”
• “Thank you to the Social Security Administration for making SSI documentations available in print and braille for those who are benefitting from this service.”
• “As I will have to rely sometimes on strangers regarding my finances, I am concerned about identity theft and theft of income.”

With training, support, and assistive technology, many older adults who are blind or visually impaired can learn to manage their finances more independently; however, they must receive training and technology, and businesses and financial institutions must comply with basic accessibility standards.

Mediating factors

Some factors improve and other factors limit the sense of security that older Americans with vision loss feel about their retirement and finances. As with other areas of concern for older adults who are blind/visually impaired, the presence of additional disabilities creates further challenges for retirement security. Likewise, aspects of social benefits systems like Social Security Disability Insurance can create disincentives for older adults to continue working, leading to reduced retirement savings. However, assistive technology and the presence of a supportive spouses, friends, and family members can be especially beneficial to secure retirement. Service providers and older Americans with vision loss expressed the following:

• “Assistive technology has enabled many to be able to continue to do their job and keep their employment.”
• “Because most of these clients had other health issues that affected ability to go places without an adaptive aid (support cane, walker, scooter), it was easier to rely on others. This often meant feeling a loss of independence and control over their lives. If there were no neighbors or family available, it meant paying for an aide or caregiver to write checks and shop.”
• "You lose money when you work so people are thinking twice before working.”

Additionally, respondents who were current or former federal government employees expressed a greater sense of retirement security and felt that the benefits offered, even if they retired early, were sufficient to enable them to continue to pursue their retirement goals.

Proposed Solutions

The consequences of insecurity of retirement can be devastating for persons with vision loss and their families. As a nation, we must systemically address the ways in which our current network of supports is failing seniors, especially those who are losing their vision or are blind or visually impaired. Vision loss must not become a life sentence to poverty or financial dependence. The following actions were proposed in the feedback received by AFB from service providers and older Americans who are visually impaired:

• “Aids for vision such as glasses, magnifiers and talking devices should be covered. This could mean the difference between a person being independent and having to have a family member or hire someone to provide these services.”
• “Would like to see some incentives or materials to encourage employers to retain and hire.”
• “Today's internet is a necessity, not a luxury. Low-cost, or free, access for income-eligible seniors would be very helpful, especially for those relying on [computers]… for vision assistance.”
• “With so many departments in the federal government and in light of the fact the our ‘baby boomers’ are all reaching those years of need and support, why not create a group of folks in each state to personally and face to face, assist us older folks. Too many pages in my Medicare manual for me to read or even comprehend. Too many different things to consider in doing my tax return, that I rely on a CPA to do them for me. I don't know how long I can afford the CPA.”
• “There needs to be more funding supporting older adults in getting vision rehab services such as orientation and mobility, and rehabilitation therapy and assistive technology and the adaptive equipment needed. ”
• “I would like to see something in place within our work force to assist individuals (especially those reaching retirement age) so that they can remain employed without having to go through all the time and paperwork of filing for Social Security Disability, losing their job and having to start all over.”

Older Americans with vision loss emphasized the importance of being able to gain access to supports and services as soon as their vision loss is identified. They should not have to wait to receive assistance until their level of vision has decreased to “legal blindness” or another predetermined level.

Elder Justice

This final topic area for the White House Conference on Aging produced especially poignant feedback and stories in the responses we received from older Americans with vision loss and their service providers. Consistent themes included the loss of privacy and security related to inaccessibility of text-based information, the risks associated with the inability to independently manage financial matters, and the increased susceptibility to abuse, scams, discrimination, and theft.

Accessibility of text-based information

When information is inaccessible or older Americans with vision loss do not have the tools and training to access information, they are forced to rely upon the assistance of a sighted individual. This leads to a loss of basic privacy as well as an increased risk of exploitation. Inaccessibility of financial information and financial transactions, as well as the challenges of basic financial tasks like check writing, open people with vision loss to significant financial risks. Service providers and older adults with vision loss shared the following:

• “Sometimes, you are hurried through signing contracts without ever having heard what the fine print says.”
• "Even in the eye doctor's office, the paper can be handed to you to read and sign without offering to read it for you when it is well known a person has impaired vision to read.”
• “If you can't read what you are signing, you can get into all kinds of binding legal problems; no matter what age you may be. Any family member could take advantage of a trusting elderly relative, if that elderly relative struggles with seeing the written word!”
• “The more you must depend on others, the greater the risk of identity theft or outright financial disaster. People think that just because you can't see, you aren't smart enough to figure out when you are being taken advantage of or stolen from.”
• “Mail management can be very difficult for the visually impaired. Without services to address activities, such as this, important documents whether needing signatures or not go unaddressed and usually build up. Most rely on family and friends to assist with these activities but that is not always available. Family, friends and others that get involved with a visually impaired persons finances and legal activities does not always benefit the person needing assistance.”

Failing to read and respond to printed information in the mail can have serious financial and legal consequences. Similarly, the inaccessibility of print information often limits civic participation for older Americans with vision loss, including jury duty, voting, and community meetings.

Abuse, scams, discrimination, and theft

AFB collected many stories of seniors with vision loss who had been targeted and/or taken advantage of by unscrupulous individuals and businesses. Perhaps most disturbing, many times the scams or abuse are perpetrated by family and caregivers. The following are just a few examples:

• “It is not uncommon for disabled people to be abused in other ways by family members or caregivers. They are a vulnerable population for many reasons and I wish there were more legal services and social services to protect them from such victimization.”
• “We have had experiences where seniors have signed contracts that they thought would provide a benefit and none was received. The fact that they are visually impaired leads some seniors to trust too much.”
• “Tried to rent an apartment; [land lords expressed] worry about their liability with housing a blind tenant.”

Accessing the legal system

Older Americans with vision loss need to have equal access to the legal system in order to protect themselves and seek recourse in the event of scams or abuse. However, AFB received the following feedback indicating that there are significant challenges faced those who seek legal assistance or simply need to participate in legal agreements:

• “Hiring a lawyer is problematic on many levels”
• “Where there is an absence of a legal representative (lawyer) for elderly family members, or if they are unable to source legal assistance, family members (or friends) may take over all correspondence. This causes conflict of interest.”
• “A major issue is the need to personally appear to sign legal documents. A visually [impaired] elder often has difficulties traveling to government and agencies to conduct business (IRS, insurance, Social Security).”

Mediating factors

As with healthy aging, retirement security, and long-term services and supports, older Americans with vision loss and their service providers report that some factors benefit, and some factors limit the ways in which people with vision loss experience legal protections, civil rights, and elder justice. The following quotes provide two examples of the benefits of having a trusted spouse, friend, or family member:

• “I could not read the papers for selling my house last week. Fortunately, I trusted my husband to tell me where to sign.”
• “Many don’t have someone (legal help or someone who knows the forms that can sit down with them and help) who can spend time going through the wording/content and the print size to make sure they know what is being said and what they’re signing.”

Additionally, having existing financial resources can help older adults in being able to afford legal counsel and assistance. Alternately, the presence of additional disabilities – including hearing loss and/or cognitive disabilities – often make older Americans with vision loss more susceptible to scams, abuse, and discrimination.

Proposed solutions

Unquestionably, action must be taken to increase privacy and security and reduce the risks of abuse and discrimination faced by older Americans with vision loss. The following suggestions were provided by older adults and service providers:

• “All bills should be available in large print. We need available transportation. Prescription labels are very difficult to read. Point of sale equipment is also very difficult to use. Services for visual impaired should be as accessible as SNAP.”
• “All legal forms should be presented to low vision people on magnified technology.”
• “State funded independent legal assistance needs to be offered to elderly people before it becomes too difficult for them to make decisions”
• “There need to be more bill payer programs to help with writing checks and more funded computer training for older people with vision loss so they can pay their bills on line. Elder abuse especially financial abuse is a big issue often with one's own family.”

Audio-recording technology and other solutions can be provided to document contracts and legally binding agreements when older adults with vision loss do not have a trusted assistant or do not have the opportunity to take detailed notes. Legal and social services must also be better trained and prepared to respond quickly to concerns and allegations about illegal activities targeted at seniors who are blind or visually impaired.