American Foundation for the Blind's Center on Vision Loss and Vision Aware Website

1. What prompted the development of your organization?

Founded in 1921, the American Foundation for Blind (AFB) has spent nearly a century ensuring that individuals who are blind or visually impaired have access to the information, technology, education, and legal resources they need to live independent and productive lives. AFB was formed through the support of M.C. Migel, a philanthropist who wanted to help the large number of veterans blinded in World War I. Under his leadership, AFB began its mission to:


• provide a national clearinghouse for information about vision loss;
• create a forum for blindness service professionals;
• generate new directions for research; and
• represent the needs of people with vision loss in the creation of public policy

Helen Keller, author, activist, and advocate, helped to raise AFB's profile when she began working with the organization in 1924. Keller remained active with AFB until her death in 1968, by which time she had radically changed perceptions of blindness. Since its earliest days, AFB has excelled at connecting people to the information and resources they need. Early achievements included:


• Leading the effort to standardize the English Braille code;
• Publishing AFB's Directory of Services for Blind and Visually Impaired Persons, which remains the most convenient, comprehensive, and reliable source of information on vision loss available; and
• Establishing AFB Press, the largest publisher of scholarly works and research for vision loss service professionals.
2. What are key issues that are being addressed currently by the organization?

The current mission of the American Foundation for the Blind is to remove barriers, create solutions, and expand possibilities so people with vision loss can achieve their full potential. Technology plays a crucial role in keeping the vision loss community informed and connected. In its first decades, AFB pioneered many advancements in assistive technology including the hugely successful Talking Book program, which provided audio books for millions of people with blindness and low vision. Today we are at the forefront of advocating for policies affecting people with vision loss through the work of our Public Policy Center described below.

In 2011, AFB was approached by the Readers Digest Partners for Sights to combine our organizations' website. The result is the new Vision Aware, a one-step resource for individuals with vision loss and their family members. Features of the site include information about eye conditions and treatments, adaptations, emotional and social support, everyday living adaptations, directory of services in each state, blogs, tip sheets, visual stimulation demonstrations, and 21 online courses for NASW members.

3. Are there any future plans for the organization and/or any of its programs?

AFB celebrated 90 years of achievement in 2011, but our work is not done. Guided by our leadership, we are continuing the organization's mission. As always, we strive to expand possibilities for people with vision loss—in work, communication, technology, and all spheres of life. We continue researching assistive technology solutions through AFB Tech in West Virginia and providing information to professionals, consumers and family members through our web-based programs, including eLearning opportunities, and AFB Press, our publications division. For example, AFB's eLearning Center on Aging and Vision Loss includes 21 online courses offering CEUs for NASW members

4. How might a family caregiver or helping professional use your programs or services?

The Center on Vision Loss is a unique part of AFB dedicated to helping the 25 million Americans with vision loss find resources, professional services, and workable solutions. We have over 500 products and devices on display that can help a person:

• Read
• Use a computer
• Identify medications
• Use the telephone
• Move about his or her home independently and safely

A person can walk through Esther's Place, the demonstration model home, and try out the various low and high-tech gadgets in a realistic home setting, get ideas for modifications he or she can make in the person's own home, and find out where to obtain any of the products he or she has tested. Some of the gadgets include a specialized timer and a bar code reader.

The Center's staff and volunteers are uniquely equipped to meet the needs of people experiencing vision loss as well as their family and friends through hands-on demonstration of products and techniques displayed in Esther's Place, our demonstration model home. Whether you are a parent of a baby with congenital cataracts or the grandchild of a senior citizen with glaucoma, we can answer your questions or show you ways to help your loved one.

When you live far away from your mom or dad and they call with the news that they have been diagnosed with macular degeneration, you will most likely feel the need to gather information and resources to begin to assist them. The Center is a great place to start. You can visit the Center, with or without your family member or friend, and gather ideas to help your loved one to live as independently as possible and to connect with the service providers they need. If you do not live in the Dallas/Fort Worth metroplex, you can call to ask questions and we can send you helpful information. And you can visit the Visionaware website where you can find solutions for helping your older relative with vision loss and special tips for family caregivers.

5. Is there anything else you would like people to know?

AFB's Public Policy Center in Washington, DC, collaborates with policy makers in Congress and the Executive Branch to ensure Americans with vision loss have equal rights and opportunities to fully participate in society. AFB's advocacy strategy is backed by a team of experts who conduct and analyze research related to vision loss. The foci of the advocacy efforts are: technology, employment and rehabilitation, education, civil rights, health and policy research. Our work in Washington includes:

• Ensuring the accessibility of consumer electronics, home health appliances, and communication devices;
• Advancing education policy for children with vision loss; and
• Supporting policies that benefit seniors with vision loss, such as accessible prescription labeling

Just recently, AFB worked hard on the passage of the Food and Drug Administration Saftey and Innovation Act. The Act includes provisions that establish national best practices for retail and other pharmacies to use in providing accessible prescription drug labeling to customers with vision loss. This includes proper dosage, the name of the medication, accompanying information about possible side effects, and more.

6. If readers have other questions, how can they obtain more information?

Website for adults who are new to vision loss: http://www.visionaware.org. E-mail: Priscilla Rogers

Survey Finds Older Adults are Uncertain about Long-Term Outlook for their Health and Finances

Aging in place should be attainable for most "young-old" seniors in their 60s, but boomers planning for their retirement would be wise to consider their likely need for support as they age into their 70s, 80s and beyond. Nearly two-thirds of the survey respondents between the ages of 60 and 69 reported that they find it very easy to live independently, but that percentage drops to 43 percent for respondents ages 70 and older. Nearly two in 10 Americans, ages 70 and older, say they either cannot live independently and accomplish daily tasks without assistance from caregivers or community resources or find it difficult to do so.

"The most vulnerable older adults, who are also most in need of health care, economic help and support services to remain independent and 'age in place,' are the least confident they will be able to get the help they need," said Rick Birkel, Ph.D., acting Senior Vice President, Healthy Aging, and Director of the NCOA's Self-Management Alliance. "But even small increases in benefits, reduced-cost services or reduced expenses can go a long way in helping vulnerable seniors remain independent. We hope that this yearly survey will help lead communities to educate older adults about programs and services that can improve their overall quality of life." [More details about the study]

[Resources for Family Caregivers:]

AARP and Ad Council Help Increase Awareness About Caregivers

AARP and the Ad Council have teamed up to raise awareness about the 42 million Americans who care for a loved one This campaign is designed to help family caregivers find the quality information, resources and support that they desperately need. A new poll released in conjunction with the AARP and Ad Council public service announcement (PSA) campaign found that many caregivers say caring for their loved ones is difficult, two-thirds of them care for those with chronic illnesses, and one-third are caring for those with dementia. The average caregiver is a 49 year old woman who spends 20 hours a week taking care of an adult family member or friend, and this recent poll found one-third of caregivers devoting 40 or more hours a week. The poll shows that caregivers admit that they need help, and yet two-thirds haven't actually reached out to look for resources.

The PSAs also direct people to AARP's online Caregiver Resource Center. Its virtual doors are open 24/7 so a family caregiver can find information, resources and other helpful web tools. Four features of the site are the Care Provider Locator, where home care, housing and other services can be identified; Many Strong, which can help manage a loved one's care by building an online community; Prepare to Care: A Resource Guide for Families; and Share Your Story. For more information, visit the AARP website and the MSNBC article:New ad campaign portrays caregivers' call for help

KCET's "Your Turn To Care" Website

KCET in California, has launched Your Turn To Care , a website designed to serve as a resource for families, caregivers and seniors across the country who are faced with the challenge of taking care of ailing or aging loved ones or dealing with aging-related issues. Developed by KCET as a companion to its original television series with the same name (hosted by Holly Robinson Peete), the enhanced Your Turn to Care website encourages visitors to 'Watch, Explore and Connect' through more than 60 original videos featuring expert advice on topics ranging from caregiving and finance to health and wellness, dementia and Alzheimer's disease. . . .

The site also serves as an online support network and resource destination for those seeking guidance and advice on caregiving, including the financial impact of caregiving, useful tools for seeking long-term and palliative care and how to cope with the passing of a loved one. 'Topic-of-the-Week' discussion boards are meant to encourage visitors of all ages to join the conversation and offer practical solutions to the countless issues caregivers regularly confront. In addition, the site features profiles on the caregivers, families and experts from the four-part television series, as well as updated news information on caregiving. Your Turn To Care is syndicated by American Public Television and airing on public television stations across the country this summer. The multi-platform public television initiative is made possible by MetLife Foundation, California Community Foundation, The Lippey Family Trust, and Gladyce L. Foster. [More information]

Getting to Know the Lifespan Respite Grantees and Stakeholders

Lead Agencies and Primary Collaborators: The Utah Division of Aging and Adult Services, Utah Aging and Disability Resource Center (ADRC), Veteran's Administration, Developmental Disabilities Council, National Alliance on Mental Illness Utah, Alzheimer's Association and other agencies of the Utah Coalition for Caregiver Support (UCCS) are initiating efforts to create a coordinated statewide lifespan respite care program. The goal of the project is to improve access to information and lifespan respite. The project objectives are to institute a comprehensive lifespan respite care program with a single port of entry for caregivers seeking information, support, and respite, with a telephone line and supported by web-based access to information. A second objective is to . . . expand respite care services and respite funding to family caregivers and care partners, and to develop private funding sources to sustain lifespan respite. A third objective is to implement a new "UCare" caregiver training program statewide for lifespan respite caregiver audiences and added modules related to the ADRC services and support to growing numbers of non-service connected Utah caregivers of veterans with dementia. A final objective is to facilitate training and job access for candidates entering the field of professional care providers and to offer volunteer training for those desiring to provide respite care across the lifespan.

Main activities: Currently in their second year of funding, the Utah Lifespan Respite Program with the assistance of the Utah Coalition for Caregiver Support (UCCS) successfully launched a Lifespan Respite Care conference in November 2011 (National Caregiver Awareness Month). UCCS members and its board met monthly to plan and work on grant activities. Contract documents, along with the scope of work, between the Division of Aging and Adult Services and the UCCS were completed in order to carry out the activities of the Lifespan Respite grant. The UCCS funded the implementation of the Lifespan Respite Care website; developed a mobile exhibit for outreach and public awareness; developed a work group to implement its Certified Nurse Assistant (CAN) training program to increase the provider workforce; and the UCCS respite care work group successfully developed a system for the provision of at least 90 caregiver respite care cases through selected care agencies.

The UCCS deliberately refers to their committees as workgroups and members consistently educate one another as to the specific components of the broader work plan in the grant. Small focused workgroups are assigned to execute projects such as the CNA training, the website project, the caregiver guide, the "UCare" caregiving training program, etc.

State Respite Coalition Role: The UCCS is responsible for strengthening and uniting existing resources and information supportive of caregivers and respite care. They also advocate for caregivers and their families relative to supportive programs and work to improve service delivery and reduce barriers to caregivers receiving supportive services. They are further responsible for facilitating the development of a system of improved access to respite care for caregivers and to respond to community needs and the needs of caregivers. In collaboration with other key entities throughout Utah, they work to improve public, provider and private nonprofit collaboration relative to caregiver support and respite care.

Aging and Disability Resource Center (ADRC) Role: The ADRC is a member of the UCCS and is working in concert with the Utah Division of Aging and Adult Services, the state Veteran's Administration, the Developmental Disabilities Council and other members of the UCCS to create a coordinated statewide respite care program. Their primary contribution is to reference the lifespan respite care program on their website and in options counseling. The ADRC has also been invited to exhibit at annual respite conferences.

Lifespan Respite Grantees Invited to Participate in the Administration for Community Living's Learning Symposium

During a 2-hour program-specific session in the morning for Lifespan Respite grantees and others who might be interested in applying for a state Lifespan Respite grant, facilitated discussions on a variety of topics of interest to Lifespan respite programs will be held. In the afternoon, a one hour targeted meeting for Lifespan Respite grantees will permit discussion of strategies to partner with other ACL grantees and opportunities to address any technical assistance questions related to Lifespan Respite grants. For more information, contact Greg Link at ACL/AOA or Jill Kagan at ARCH.

Call for Better Respite Data Use and Funding

Accurate and reliable data collection on respite funding and use has always been elusive, for a variety of reasons. Respite can take place in a wide range of settings and may have different purposes and direction based on the needs of the family caregiver and the age and condition of the care recipient. In addition, within a state and among states, respite is funded by a variety of fragmented and disparate funding streams which have their own definition of respite and their own data collection requirements, making comparisons across programs or services extremely difficult.

The AARP report is a call to action to improve the current state of data collection and performance measurement for respite. Development of new respite services while ensuring sustainability will require states to demonstrate success and efficiency and this could prove difficult without reliable and comparable data. While the AARP report did not mention the important role that Lifespan Respite programs can take to improve this process, the very definition of Lifespan Respite—coordinated systems of community-based respite for family caregivers of children and adults—establishes Lifespan Respite programs as a logical and integral leader in helping to improve data collection systems. As a starting point, the Administration for Community Living, with ARCH's assistance, has convened a Lifespan Respite Data Workgroup composed of researchers, respite providers, evaluation experts, federal agency officials, and Lifespan Respite grantees to develop a workable performance measurement plan for Lifespan Respite grantees. We will be calling on grantees and partners within the next few months to help develop and respond to any recommendations of the workgroup.

Download the AARP report here.

New ARCH Resources

Fact Sheet: Respite for Individuals with Neurological Conditions

This fact sheet provides an overview of the population of adults with neurological conditions, and discusses considerations that families, respite providers, other program administrators and state Lifespan Respite grantees should take into account in relation to accessing or providing respite to family caregivers of these individuals. This fact sheet is intended also to provide information that will encourage State Lifespan Respite grantees and others to stimulate and provide resources to increase the capacity and affordability of respite services for this population across the lifespan. Download the fact sheet here.

Archived ARCH Webinar: Funding Sustainability for Lifespan Respite Grantees, Part II: Examples from the States

On August 14, 2012, ARCH hosted the second in its series of webinars on funding sustainability for Lifespan Respite programs and others. Concrete state and local examples of using federal funding to support respite taken from the ARCH guide to Federal Funding and Support Opportunities for Respite were shared. Possible federal funding sources that can help support state funding for respite system infrastructure, training, services and family caregiver respite support and how to partner with the state agencies that administer these funds were reviewed. To view the archived webinar and download related materials, please visit the ARCH website.