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Occasional LTC Policy Paper Series
Duke Long Term Care Resources Program Paper No.10
Governor's Advisory Council on Aging Symposium on Information and Assistance
Hailey Maier, M.A., Guest Editor

The Duke LTC program in conjunction with the Governor's Advisory Council on Aging in North Carolina is pleased to present a summary of the Symposium on Information and Assistance held on May 25, 1999. The Governor's Advisory Council on Aging held the symposium to educate its members about Information and Assistance (I & A) systems but is aware that there is great interest in this topic among the broader Aging Network. This summary is intended to circulate the information presented at the symposium and to present the Council's recommendations in this area.

North Carolina is one of many states grappling with both the human and the technology sides of information system building. North Carolina readers of the Occasional Policy Paper Series, as well as readers around the nation, will find a thought provoking framework for discussion of those challenges in this issue from a number of perspectives.

In this issue: About the Editor: Hailey Maier, Guest Editor for this Occasional Policy Paper is a Duke Leadership in an Aging Society Intern placed with the North Carolina Division of Aging. Ms. Maier has a master's degree in psychology from Brandeis and is currently a graduate student in Health Behavior and Education at the University of North Carolina at Chapel Hill School of Public Health. Support from the Division of Aging and the UNC Institute on Aging helped to make her internship possible.

Governor's Advisory Council on Aging

The Governor's Council on Aging is authorized by state legislation (GS 143B-181) to make recommendations to the Governor and the Secretary of the Department of Health and Human Services for improving human services to the elderly, including improved coordination among State agencies. The Council also studies and recommends how best to promote public understanding of problems affecting older adults and considers the need for new State programs to address these problems. It is comprised of 33 members, with 29 people appointed by the Governor, and 2 each appointed by the President Pro Tempore of the Senate and the Speaker of the House of Representatives. Among these 33 are 19 at-large members, who are citizens knowledgeable about services supported through the Older Americans Act, and 14 spokespersons of State agencies and organizations serving older people.

Representatives At-Large
Eleanor Beasley Gaston County
Helen Moody Buckner Chatham County
John T. Denning Sampson County
Doris Dick Yadkin County
Robert Edwards Madison County
Everett M. Flynn Bladen County
Margaret Griffin Martin County
Ann B. Johnson, Chair Orange County
William D. Lawson, III Gaston County
Thelma C Lennon Wake County
Jean Kenny Longley Haywood County
John H. Lucas, Vice-Chair Durham County
Emma Jane D. McDermott Dare County
Marion C. Michalove Rutherford County
Mary M. Murphy Franklin County
Louise Siler, Secretary New Hanover County
Quinton Wall Johnston County
Ruth P. Watkins Richmond County
Bob White Cumberland County
State Department Representatives
Wesley Alston N.C. Employment Security Commission
Dr. Lucille (Luci) Bearon N.C. Cooperative Extension Service
Jim Blackburn N.C. Department of State Treasurer
Dr. Gordon DeFriese UNC-CH School of Public Health
William Dudley N.C. Department of Crime Control and Public Safety
Lloyd Inman N.C. Department of Environment & Natural Resources
Eloise T. Jackson N.C. Department of Cultural Resources
Elizabeth Jones NC Community Colleges System
Harold Megredy N.C. Department of Labor
Dr. Mary Anne Salmon UNC-CH School of Social Work
Dr. Clare Sanchez N.C. Medical Society
Carla Suitt Obiol N.C. Department of Insurance
Diane Wall N.C. Department of Public Instruction
Kenneth Wilkins N.C. Department of Administration

Purpose of the Symposium:

Ann B. Johnson, Council Chair, introduced the purpose and context of the symposium. The Governor's Council on Aging strives to bring attention to issues and trends important to older adults and aging services. The importance of information and assistance (I&A) services is illustrated by the multiple references to information in the 1999-2003 State Aging Services Plan. This plan can be accessed on the Division of Aging's web site at www.dhhs.state.nc.us/aging/plan.htm.

Several activities prompted the Governor's Council on Aging to hold this symposium. First Governor Hunt proclaimed May 9 to 15, "Information and Referral Week," noting that "information and referral agencies work to affirm the dignity, self-worth and independence of individuals by facilitating their decisions and actions, tapping their experiences, skill, knowledge, and enabling their continued contribution to the community; and function as a point of entry, helping individuals to help themselves and each other, and offering service or access to community services as needed." Second, the Division of Aging has recently begun an initiative to define a vision for I & A services in North Carolina. In addition, efforts are underway across the state to improve I & A services for older adults. Finally, the growing complexity of choices facing older adults makes I & A services particularly important today. Members of the Governor's Council used what they learned during the symposium to fulfill their mandate to formulate recommendations for the Department of Health and Human Services and the Governor.

The diverse array of agencies and groups represented at the symposium reflects a wide range of interest and involvement in information and assistance as a service for seniors. In addition to members of the Governor's Council, groups in attendance included Councils and Departments on Aging, Area Agencies on Aging (AAA), County Departments of Social Services, Senior Centers, United Way First Call for Help, members of the Senior Tar Heel Legislature, and participants of the Duke Leadership in an Aging Society program.

Nomenclature Trends: I&R to I&A: With an Emphasis on Assistance

In general, the term Information and Referral (I & R) is used to describe services that provide information about community resources and refer callers to other agencies when appropriate. In addition to I & R, Information & Assistance (I & A) can include other activities such as education, counseling, case assistance, case management, follow-up and advocacy.

Advances in Information Technology

Jane Patterson, Senior Advisor to the Governor for Science and Technology, challenged those attending the symposium to consider the potential impact of technology on the kinds of services older adults demand, how these services are delivered, and how they will be accessed by consumers. Advances in information technology will enhance services provided to older adults by making them easier to access and less expensive to provide.

Ms. Patterson described several trends that may have an impact on I & A services. The increasing percentage of homes with computers and access to the Internet will radically change what older citizens will demand and the kinds of services to which they have access. Some seniors are already banking and purchasing medication on- line. The increasing number of services and products that can be accessed from the home will be particularly beneficial to homebound elderly and people living in rural areas.

North Carolina will have a task force linked to a project that is designing a vision for providing government services electronically. Ms. Patterson offered to include on that task force someone who would represent older citizens and could help set the standards for electronic governance in North Carolina.

National and State Perspectives

Envisioning Information & Assistance Systems

Two visions of I & A systems were presented at the symposium. Presenting the national perspective, Bernice Hutchinson, Director of the State Health Insurance Counseling Program Resource Center, discussed a paper produced by the National Association of State Units on Aging (NASUA), Vision 2000: Toward a Comprehensive Aging Information Resource System. Because I & A systems vary from state to state, the paper is intended to be a vision rather than a model and its recommendations are meant to be modified to fit the particular circumstances of each state. Laura Zimmerman with the Human Services Smart Agency at the University of North Carolina at Chapel Hill, presented information from a draft of her paper, Information and Assistance: Meeting Needs of the Aging Population in the New Millenium. Dr. Zimmerman, who has worked extensively with a range of community I & R systems, has been commissioned by the North Carolina Division of Aging to write this paper. Some key points addressed in both visions included:
  • Better use of technology to increase communication and coordination between agencies;
  • Partnerships between agencies to share costs and information;
  • Adequate training for I & A personnel;
  • Strong leadership at all levels of the aging network; and
  • A broad based system to record both straightforward and comprehensive contacts.
The proposed vision for North Carolina also includes recommendations for standardizing data collection efforts, service delivery and information. It advocates for a standard screening instrument and recommends that all providers use a comprehensive assessment tool and have access to adequate computer hardware and technical assistance.

A National Vision

Ms. Hutchinson began her presentation by describing the context in which the national vision for I & A systems was conceived. Today, we are beginning to look at I &R in a much broader context. Older Americans and their families face a complicated array of choices and decisions about their health care, pensions, insurance, housing, financial management, and long term care. The system is becoming more complicated as our lives become more complicated. In this context, the vision paper considers three major issues:

1. What kind of supports and assistance do older Americans and their caregivers have?
2. What resources are currently available to inform and educate senior consumers and to help them resolve problems?
3. How can these resources be enhanced or modified? The national vision states that I & A systems should:
  • be broad-based, serving all types of consumers, both the self-server and those who need more assistance
  • empower consumers to make decisions, presenting both sides so that they can make an informed choice
  • help consumers access advocacy and utilize technology
  • incorporate evaluation and user satisfaction.
A National Vision from the National Association of State Units on Aging

Vision 2000: Toward a Comprehensive Aging Information Resource System
  • Leadership - national, state, and local levels should take a proactive role
  • Comprehensiveness
  • Integration - so that information delivery is seamless
  • Adequate Funding
  • Skilled Personnel - to meet the anticipated number of requests for information and to provide counseling, advocacy, and decision-support assistance appropriate for empowering consumers
  • Technology - to maximize communication in a cost-effective manner
  • Marketing - to ensure an understanding of and access to the information resource system
  • Responsiveness -to serve a diverse population of older adults and their families
  • Quality - through evaluation and study of best practices in consumer education
  • Partnerships - between public and private organizations
  • Service - to internal customers as well as external consumers
Suggestions from Vision 2000

Ms. Hutchinson recommended first that the network re- conceptualize the information services it operates as a comprehensive system for providing information, counseling, and advocacy support to older consumers. Within that framework, it must:

1. re-define the roles and relationships among its discrete information programs and services;
2. re-structure the programs to enhance coordination and efficiency; and
3. re-tool the skills of program personnel.

Second, the Older Americans Act (OAA) network must enhance linkages with the larger universe of information providers. Databases need to be expanded to include both public and private agencies. I & A systems do not need to have all the information consumers request but they should know who has the information and be able to connect callers with the appropriate person.

NASUA will be publishing a compilation of statewide and Area Agency on Aging (AAA) models for strengthening I&A systems. In addition, an updated software bibliography with information about states' experiences with different software packages and the benefits of each will be available sometime after September 1.

An Emerging Vision for North Carolina

Laura Zimmerman's vision for I & A systems in North Carolina suggests building a coordinated system for keeping accurate data and information about community resources and helping families access these resources. The aging network must envision providing comprehensive, efficient, and quality information to serve older adults in the future.

Dr. Zimmerman began her presentation by reviewing current I & A systems in North Carolina. Currently, I & A is provided in a number of forms in North Carolina. Some organizations use index cards, rolodexes and phone books to look up resources, while others search computerized databases. Some agencies conduct assessments with paper forms, and others use software packages such as IRis, Refer99 and Community Services Locator. Increased hardware capabilities would give I & R service providers access to the Internet that would be helpful to providers as well as older adults and their caregivers. Community resource databases could be put on the World Wide Web.

North Carolina Division of Aging Presents The 1999 Statewide Aging Conference in the International Year of Older Persons

"Aging Locally and Aging Globally: Reflections and Renewal"

November 1- 3, 1999 North Raleigh Hilton Raleigh, North Carolina

Conference Highlights:
  • Nationally Recognized Speakers such as Diane Justice, Harry Moody, & Horace Deets
  • Workshops on Cutting Edge Topics
  • Annual Awards Luncheon
  • International Reception
  • Exhibits
For information about the Conference, contact the Division of Aging at (919) 733-3983.

From a Vision of North Carolina's System of Information and Referral Support: A Work in Progress
  • Increase knowledge of community services, client screening and assessment through better technology and community coordination.

    1. All providers should have a computer on their desk with the power to search their relevant resource database and support client tracking
    2. The system should have the flexibility to record information calls as well as allow for comprehensive client data collection
    3. The system should link into a standardized screening instrument
    4. Any areas of concern should lead to a more comprehensive assessment instrument

  • Provide adequate technical assistance and training in standard terminology, service requirements, skills of providing I & A, and any computer system they will use.
Leadership Roles
  • State Division of Aging - organize and help lead efforts to set standards for service delivery
  • Area Agencies on Aging - work with state on changes and ensure they are implemented at the local level
  • Local Provider Organizations - make sure service providers obtain training and certification; work with other providers to share resources information; provide information on community resources that is up- to-date, accurate, and complete.
Recommended Strategies
  • promote development of regional I & R data centers to reduce duplication and improve access
  • standardize and combine data-gathering efforts
  • establish a more cost efficient and effective system
  • develop and implement a plan for standardizing services and information
I&A/R Programs in North Carolina

Every county in North Carolina has at least one agency that can serve as a point of entry for information about services available to older adults. This agency should be able to make appropriate referrals to other resources in the community if it is unable to provide the requested assistance. The Division of Aging's Aging Services Directory can help locate services on a county-by-county basis, including information and case assistance. There are several I&A initiatives currently being implemented in North Carolina. Two agencies involved with such programs, the Mid-East Commission Area Agency on Aging (AAA) and the United Way of Asheville and Buncombe County, had representatives speaking at the symposium.

Dave Weatherly, an Aging Specialist with the Mid-East Commission AAA, supported Dr. Zimmerman's call for a standardized system of data collection, information dissemination, and training for I&A personnel across the state. He urged the Governor's Advisory Council to ensure that North Carolina's I&A Vision Statement be compatible with the goals and service access standards of the Department of Health and Human Services. Mr. Weatherly recommended that the vision statement include a scheme for perpetual evaluation, allowing for adjustment and modification to the system based on the changing consumer and payer needs. He also asked that a realistic implementation strategy be developed, which would allow the vision to be supported and funded by public policy makers. Finally, Mr. Weatherly requested that the Division of Aging allow other groups to provide feedback and endorse the concept of the vision. Groups should include, but not be limited to, the North Carolina Association of Area Agencies on Aging (NC4A), the North Carolina Senior Tar Heel Legislature, the North Carolina Association on Aging (NCAOA), and the North Carolina Alliance of Information and Referral Systems (NCAIRS).

The Mid-East Commission AAA has been working to put in place an infrastructure necessary to support a computer-automated information and referral system. This system is essentially a computerized database of agency and program information that is used to link older adults to available community services. This project began with the five counties of Region Q (Beaufort, Bertie, Hertford, Martin, and Pitt). Since its inception, the project has expanded to encompass the 10 counties of Region R. The database allows participating organizations to collect client data and link the data to referrals, service reports, planning, and client tracking.

Julie Sergent of United Way of Asheville and Buncombe County described the Community Resources Network currently being developed in western North Carolina. The goal of this network is to "efficiently link all people of Buncombe County (and all of Western N.C.) with resources and services." The Community Resources Network aims to coordinate I & R efforts in the western region so that information is collected only once. The project is designed to collect and disseminate information about services and agencies to 1) connect the caregivers for coordinated care management, 2) create a comprehensive community web site, 3) establish a 24-hour 211 telephone service, and 4) produce annually a printed community resource guide. Ms. Sergent discussed the merits of 211, a three- digit phone number, as an approach to ease access for consumers.

The Challenges of Serving Special Populations

Dr. Luci Bearon, of the N.C. Cooperative Extension Service and Chair of the Council's Aging Issues Dissemination Committee, discussed the challenge of providing information that is responsive to the needs of certain groups and can be easily accessed by members of that population. Inez Myles, Executive Director of the N.C. Senior Citizens Federation, spoke about information services specifically in the African American community. Lynn Chamblee, Information and Referral Coordinator of the Durham Council for Senior Citizens and Carla Obiol, Deputy Commissioner of the North Carolina Department of Insurance and Director of the Senior's Health Insurance Information Program (SHIIP) emphasized the importance of outreach and integration of established information sources and organizations.

Luci Bearon stressed that in developing an I & A system we must keep in mind that the population of North Carolina is diverse and suggested specific strategies for serving various populations.

In North Carolina, the poor constituted almost one in five adults over the age of 65 in 1990. The poor and near poor have a particular need for affordable housing, financial assistance, access to health care, transportation, and other services. In addition, this population may need information about preventive health practices, screening, self-care, and money management. Some of the barriers to serving this population include a shortage of services, transportation problems, stigma attached to receiving public benefits, limited education and low literacy.

Poor and near poor elders would benefit from I&R/Case Assistance or "information advocacy" which Dr. Bearon describes as a "sustained relationship with a knowledgeable family member, paid caregiver, or agency representative who helps them know what is available and what the client may benefit from." In addition, a public marketing and educational campaign about resources and self-help strategies would be particularly beneficial to this population.

Another population with special service and information needs is the frail and disabled. In 1990, one in four older adults in North Carolina reported some difficulty in moving around and/or taking care of themselves. To live independently these individuals often need an array of supportive services such as care providers, adult day care programs, home safety, or medication management. However, their physical condition can reduce their access to information needed to make decisions about their care. In addition to the strategies recommended above, the more educated members of this population would benefit from access to computers, which would increase the amount of information available to them from their home.

Other populations with special information and assistance needs include the rural elderly, minority elders, grandparents raising grandchildren, and institutionalized persons and their family members.

Inez Myles discussed the flow of information in predominantly African American communities and the attitudes they display toward what is received. She stated that any master plan to create and implement an effective I & A system in North Carolina should consider how information is filtered down through different communities.

In African American communities information flows primarily through the existence of kinship groups, social clubs, churches, and other forms of social organizations, including government supported community-based organizations. In addition, mass media is accepted as a source of information. Although the old-old see technology as advantageous for the young, most of them are not really interested in it themselves. However, senior ministers are more likely to be interested in computers because of their leadership role. Information must be adapted so that it is useful to those we expect to use it.

One of the barriers to reaching the African American community is that there are not many linkages or communication channels. There must be a determination of how many linkages are necessary to 'get the word out' because an increase in linkages can often result in an increase in the distortion of information. To move the African American community as a whole, we should train people to provide services and give more assistance to those who need it. Ms. Myles suggested challenging organizations to work with local communities. She recommended adopting and extending existing institutions to perform as mechanisms for the flow of information and resources.

Lynn Chamblee of the Durham Council for Senior Citizens discussed the tremendous importance of outreach for information programs. The program she manages employs neighborhood residents as peer advisors to spread the word about the Council and its activities through the community. She pointed out that the growing trend of seniors on the web is occurring among younger elders whereas older seniors still rely on friends, neighbors, and other informal contacts for their information. Therefore, outreach is still very important. People need to know how to find I & A services and should be able to get to them through a variety of methods. In addition to improving access and public awareness, outreach efforts through neighborhood leaders and volunteers add a personal touch to information systems.

Because volunteers are an important component of information systems, Carla Obiol, with the Seniors' Health Insurance Information Program (SHIIP) discussed SHIIP's experience using trained volunteers to provide information to older adults. She emphasized the crucial role that volunteers play in the SHIIP program but cautioned against viewing them as an easy or inexpensive way to staff a program. Although the SHIIP program has established a large corps of volunteers, a lot of resources go into recruiting and training these individuals.

Information for Policy Determination and Service Delivery Planning

Dr. George Maddox, Director of the Duke Long Term Care (LTC) Resources Program, emphasized the need to produce and disseminate data that are useful to both providers and consumers. Although Dr. Maddox complimented the ability of North Carolina state agencies to use information technology to disseminate directory information and program publicity, he expressed concern over the lack of information needed for evidence-based policy development and program performance audits. For example, there is no publicly stated policy for information development in the Department of Health and Human Services. There are no publicly disseminated performance audits for assessing program efficiency and effectiveness, and there has been no development of a public constituency of informed leadership to support evidence-based policy and programming in aging services.

Dr. Maddox acknowledged several projects, which had been discussed at the symposium, that are beginning to address the gaps in available data: UNC's Human Services Smart Agency's is assessing technology, personnel, and training capacity in selected counties, the Mid-East Commission AAA has promoted an IRis- Duke SOS demonstration, and the Community Resources Network is addressing information needs in the western part of the state. Dr. Maddox suggested that these initiatives may indicate a new era on the horizon and represent an urgent opportunity for policy.

Urgent Opportunities for Policy-
  • Need a comprehensive state policy on Information System Development for DHHS, including hardware, training, leadership, and networking
  • Need to develop relationships with information technologists
  • Need to develop a public constituency of community leadership committed to evidence-based policy and programming in aging services
Although Dr. Maddox recognized that such opportunities will be difficult to exploit immediately, he emphasized the importance of a commitment of leadership to information system development and suggested that the Governor's Council on Aging might be among the first to pledge such a commitment.

Concluding Remarks

In concluding remarks, Council Chair Ann B. Johnson responded to Dr. Maddox's suggestion for the commitment of leadership in developing a comprehensive state aging information system. She stated that the symposium was structured to provide information from national and state efforts looking at the ways efforts can be better coordinated to provide seamless information services to older adults in all areas of North Carolina. Advances in information technology provide opportunities for new ways to address long- standing needs for gathering, storing, disseminating, and evaluating information.

Ms. Johnson indicated that the Council recommendations resulting from the symposium will be transmitted to the Governor and the Secretary of Health and Human Services as mandated by statute. The Council's plan, however, in expanding the symposium participants to include service providers and consumer advocates was designed to give those groups some material on which to begin their own plans for change. In our efforts to assure that all older North Carolinians have access to the information and assistance they need, she concluded that we must use technology as a tool while maintaining the personal element of a seamless, consumer- driven system.

For additional information on these and other topics visit The North Carolina Division of Aging and the Duke Long Term Care Resources Program.

Recommendations of the Governor's Advisory Council on Aging for the Enhancement of Information and Assistance in Serving North Carolina's Older Adults and Their Families

The Governor's Advisory Council on Aging envisions a future for all citizens of North Carolina in which they are empowered in making decisions and taking action with timely, up-to-date, reliable and easily accessible information and assistance, whether they are planning for retirement, facing the changes of later life, or seeking immediate help. The need to develop a comprehensive, professional, and uniform aging information resource system has become imperative as the older population and fragmented service system continue to grow.

The Council endorses the development of an aging information resource system that has the features described below, from the consumer's perspective.

The consumer will find a system of information and assistance that:
  • Relies on an adequate number of professionally trained personnel and volunteers
  • Uses information and communication technologies to aid timely and comprehensive responses
  • Offers well coordinated information, screening, counseling, and care management services
  • Is uniform statewide as well as flexible to meet local and regional differences
  • Links effectively with other resources for information and assistance
  • Strives to leave no consumer unserved because of social isolation, illiteracy, lack of a phone, poverty, functional impairment or other reasons.
The consumer will not find:
  • Wrong doors or run-arounds. From Manteo to Murphy, citizens must have equal access to information to help them with their questions. The system must be well coordinated and effective in use of technology to reduce fragmentation and duplication. Citizens should get timely and reliable assistance on their first inquiry, even if additional follow-up is required.
  • Auto-call on first contact. While an increasing number of seniors are enjoying use of the Internet and other information technologies, it is essential that the information resource system maintains a human touch--a friendly and responsive voice on the other end of a phone call.
  • One-size-fits-all responses. Because the circumstances of individuals and families vary as do their needs and preferences, the system must be able to respond effectively to these differences.
The Governor's Advisory Council on Aging offers three recommendations to support development of this system:

1. Accept the invitation of Jane Patterson, Senior Advisor to the Governor for Science and Technology, to add older adult representation to the work of the new Task Force for Electronic Governance. The Council would like to recommend the appointment of two such individuals. In addition, the Council asks for consideration in assuring senior representation in all state-level activities affecting the future of information and assistance services.

2. Establish within the Department of Health and Human Services a Task Force on Aging Information and Assistance charged with designing a comprehensive and uniform aging information resource system, which includes standardized procedures for the collection, storage, and dissemination of information as well as for monitoring and evaluating the information system itself. In pursuit of its goal, the task force would define the scope of services to be included (e.g., response to individual and family requests, outreach for the isolated, education for coping with later life, and use as a planning strategy) and develop a model for implementation. The task force should include representation from consumers, local aging service providers, area agencies on aging, United Way and other non-profits, the N.C. Cooperative Extension Service, the N.C. Alliance for Information and Referral Systems, and CARELINE and the various DHHS divisions with a role in the provision of information and assistance to seniors. The Division of Aging would staff this task force, contingent on implementation of the third recommendation. The task force would be expected to complete its work by July 2000. Issues to be considered by the task force would include:
  • the merits of a certification process for information and assistance personnel toward promoting the quality of service
  • encouraging all service providers receiving Home and Community Care Block Grant funding, as well as other providers of information and assistance services, to meet a required level of computer automation
  • how best to assure adequate consumer and community education about the process of aging, preventive approaches to health, and self- care as well as available services
  • how best to reach out to those who are most vulnerable without access to information and assistance
  • how best to market the system to assure public awareness and appropriate use
  • how best to build upon existing resources in strengthening information and assistance
  • how best to measure the performance of information and assistance services
  • how best to use the information and assistance system to help plan and evaluate programs
3. Consistent with the 1999-2003 State Aging Services Plan, increase the capacity of the Division of Aging to provide leadership in the development of a statewide aging information resource system. The Division would require support to: (1) establish a position of Aging Program Specialist for Information and Assistance, and (2) assist the work of the task force.

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