2014 INSTITUTE ON DISABILITY AND HUMAN DEVELOPMENT Annual Report Students Aly Patsavas, Lieke van Heumen, & Kate Caldwell !! IDHD by the Numbers 23 27 53 63 370 4,000 8,100 28,000 $9,104,422 Faculty members Publications by student trainees Research and/or training projects Students in the MS and PhD programs Community education training events in Illinois Items in the DHD Braddock Library Service hours provided in the Family Clinics People who benefitted from training events Leveraged funds Students Kate Caldwell and Natasha Spassiani 2 UCEDD UNIVERSITY CENTER FOR EXCELLENCE IN DEVELOPMENTAL DISABILITIES IN ILLINOIS The entities now known as University Centers for Excellence in Developmental Disabilities (UCEDDs) were initially created over four decades ago with the enactment of Public Law 88-164 (1963) to serve people with developmental disabilities. Currently authorized under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (the DD Act), UCEDDs are a resource for Americans with a wide range of disabilities. UCEDDs are leaders in academic training and education, direct services, technical assistance (information sharing), and research and dissemination all related to people with disabilities. UCEDDs receive their core funding from the Administration on Intellectual and Developmental Disabilities (AIDD) within the US Department of Health and Human Services. ! The Institute on Disability and Human Development (IDHD), the UCEDD for the State of Illinois, was established on July 1, 1988 at the University of Illinois at Chicago. IDHD is dedicated to promoting the independence, productivity and inclusion of people with disabilities into all aspects of society. ! The mission is addressed by conducting research and disseminating information about disability to educators, policymakers, businesses, government agencies, service providers and the general public. IDHD's mission includes providing an extensive array of clinical and community service activities and, through the Department of Disability and Human Development and other academic departments, offering interdisciplinary pre-service training. The values of cultural diversity, consumer choice and self-determination are emphasized across the life span in all training, public service, and research activities of the Institute. = 1 UCEDD = 2 UCEDDs = 3 UCEDDs Puerto Rico Guam American Samoa C.N. Mariana Islands Virgin Islands 3 Academic Training & Education IDHD is unique in that it is one of the only UCEDDs that is also an academic department. The Department of Disability and Human Development (DHD) in the College of Applied Health Sciences is home to internationally and nationally acclaimed leaders in the field of disabilities and is dedicated to the interdisciplinary study of disability with the goal of removing barriers to the advancement of disabled persons in society. DHD conducts scholarship and community-based service across the spectrum of disability, including advocacy, culture, education, health promotion, history, policy, and technology. ! Through DHD we offer a Master of Science (MS) in Disability and Human Development designed to prepare students for leadership in human services, as well as research and scholarship in the disability field. Specializations include Disability Studies Social Policy, and Rehabilitation Technology. ! Doctoral studies are available through an interdisciplinary PhD program in Disability Studies at DHD. The PhD Program prepares scholars and researchers for leadership roles in the study of disability as a complex phenomenon. It is the first PhD program dedicated to Disability Studies in the United States and one of only a few in the world. ! DHD is extremely proud to announce that in FY 2014, we launched an undergraduate minor in Disability and Human Development. Taking an interdisciplinary approach, the minor examines various aspects of society— healthcare, culture, politics, economics, history, legislation, education and social attitudes—that uniquely impact the experience and development of people living with disabilities. In 2014 we offered the following new undergraduate courses: Disability in Society, Disability in American Film, Disability Rights and Culture, and Disability, Health and Society. ! Finally, DHD offers a certificate program in Assistive Technology which is designed to enable professionals to pursue coursework that provides a sound base of knowledge which can be put into practice in a variety of service delivery settings. Course requirements can be met entirely through online courses or through a combination of both online and lab-based courses at UIC. ! Department of Disability and Human Development Braddock Library One of the notable resources available to students in the Department of Disability and Human Development is the DHD Braddock Library. Named after David Braddock, Professor Emeritus, the DHD Braddock Library is an extensive collection of over 4,000 items. Many of our holdings are quite rare and come from the collections of Stanley Herr, David Braddock and Wolf Wolfensberger. 4 Students Students. Students Laura VanPuymbrouck & Meghann O'Leary Student Heather Feldner Student Brian Heyburn ! The students in the Master of Disability and Human Development program and the Doctoral Disability Studies program bring diverse perspectives with backgrounds from disciplines spanning the social sciences, humanities, and health fields and hail from 12 countries. ! IDHD students are provided with opportunities to connect with local disability organizations for volunteer and internship opportunities and participated in over 20 committees, boards, and consortiums in fiscal year 2014. Students have also seized opportunities to share the knowledge they have gained by training others as well as presenting at conferences across the world. Alumni IDHD alumni are finding valuable careers after completing their education. Amie Lulinski Norris just accepted a position as Director of Disability Rights Policy at The Arc of the United States; Vijay Vasudevan accepted a postdoctoral fellowship at the Institute on Disability and Human Development. Randall Owen works as a Research Assistant Professor in the Department of Disability and Human Development here at UIC; and Carolyn Lullo McCarty has accepted a position as an officer in the Epidemic Intelligence Service (EIS) program at the Centers for Disease Control (CDC). Vladimir Cuk has just been named Executive Director of the International Disability Alliance (IDA). Vladimir will be responsible for coordinating the Alliance Secretariat in New York and Geneva and the Secretariat’s advocacy within the framework of the United Nations (UN) system and relationships with UN agencies, the World Bank and other international human rights organizations. These are just a few of the exciting positions our alumni accept after graduation. 5 Academic Highlights In the undergraduate Minor in Disability and Human Development coursework, disability is explored and understood through a social model that is based on history and culture. Part of this transformative approach to studying disability involves the education of academics, researchers, policy experts, and clinicians who will join with disabled people as active challengers of oppressive institutions and environments. Students from any discipline can engage in disability studies. Because the program has faculty, researchers, and students with backgrounds in health, education, assistive technology, the social sciences, and the humanities, the Minor in Disability and Human Development offers a unique opportunity to study the full complexity of disability in a rich interdisciplinary manner. ! IDHD/DHD is also home to the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program for the State of Illinois. The Illinois LEND is a partnership between UIC, The University of Chicago, Rush University and Southern Illinois University. The Illinois LEND provides continuing education and technical assistance regarding autism and other developmental disabilities. It is geared to meet the diverse needs of maternal and child health students, professionals, policymakers, families, and self-advocates. In FY 2014 the Illinois LEND trained 26 long term trainees (including one post doctoral fellow). IL LEND is proud to have trainees from 14 different disciplines. All trainees received over 300 hours of interdisciplinary leadership and discipline-specific clinical training. In addition to the long term trainees, LEND faculty and staff also provided training to 1,872 students from a variety of disciplines, including behavioral/developmental pediatrics, medicine, applied behavior analysis, and child psychiatry. These students also received instruction on Autism Spectrum Disorders, Maternal and Child Health competencies, and family-centered, interdisciplinary care. Students, faculty, & staff at the Ann & Edward Page-El Scholarship Award Ceremony 6 Technical Assistance & Trainings Emergency preparedness training Glenn Fujiura and Tamara Thompson-Guterz At IDHD, technical assistance is not seen as a discrete activity, but rather as a logical and natural extension of all our work. Therefore, virtually all staff and faculty in the IDHD research centers and programs are involved in some form of technical assistance at the local, state, regional and national levels. Technical assistance highlights from FY 2014 are presented below. ! The Sexuality and Disability Consortium (SDC) at IDHD is a group of people working together to support individuals with disabilities through training and education. The goal is for people with disabilities to have healthy sexuality and relationships that they choose. ! Glenn Fujiura, PhD, is the editor in chief of the journal Intellectual and Developmental Disabilities and Matthew Janicki is the editor of the Journal of Policy and Practice in Intellectual Disabilities. ! IDHD was also honored to receive the Association of University Centers on Disability 2013 Multicultural Award for Leadership in Diversity. Trainings !HealthMatters, a curriculum designed to promote health for adults with I/DD, has had a broad reach, performing 15 webcasts and training 194 The Great Lakes ADA Center people with I/DD and 200 staff/ (http://www.adagreatlakes.org) caregivers. 800 peer participants promotes voluntary compliance with I/DD have received or are with the Americans with receiving HealthMessages Disabilities Act through the Programs on train-the-trainer, provision of technical assistance, getting the memo, and training, consultation and developing community dissemination of materials. The academic partnerships. Heath Center is actively involved in Matters is training provided addressing issues impacting through the Rehabilitation employment, community Research and Training Center on participation, architectural Developmental Disabilities and Health (http://www.rrtcadd.org) ! A self-advocate attending the community forum on sexuality accessibility and accessible technology. 7 Supporting Advocacy Efforts IDHD received three Civic Engagement grants from the Institute on Public and Civic Engagement (IPCE). One grant explored the perspectives of adults with intellectual/developmental disabilities about sexual self-advocacy. 35 self-advocates attended a Community Research Forum where they had an opportunity to learn more about sexual self-advocacy as well as reflect on their ideas and experiences about the topic. One participant, reflected “What I learned about today is about speaking up for those who could need help and more about safe sex.” Another participant stated that “One thing I have learned today is I have to take the information with me so I can learn and depending on the relationship and my choice and speaking up.” ! A second grant from UIC’s IPCE engaged people with disabilities and their siblings in a policy discourse about long term services and supports. Trainings were held in Chicago and Springfield to educate siblings about the policy process and to encourage siblings to get involved in advocacy efforts with their brothers and sisters with disabilities. Outcomes of the project included increased knowledge of participants, an Advocacy Toolkit for Siblings, sibling policy videos, and a white paper with policy recommendations. ! Finally, IDHD received an IPCE grant to promote special education advocacy training for families of children with disabilities. For this grant, the Family Clinics partnered with The Autism Project (TAP), Easter Seals of Dupage County, Grupo SALTO, and the Family Resource Center on Disabilities. A series of trainings were held that specifically focused on families advocating for their special education priorities regarding the upcoming reauthorization of the Individuals with Disabilities Education Act (IDEA). Emergency preparedness training A self-advocate at the sexual self-advocacy forum 8 Promoting Systems Change IDHD has been conducting research that directly impacts Illinois residents with intellectual and developmental disabilities (IDD) and their families. The State of Illinois has been undergoing a rebalancing initiative that will increase community care options for people with IDD and reduce the number of state-operated developmental centers (SODCs) in Illinois. IDHD has evaluated the closure of the Jacksonville Developmental Center and subsequent resident transitions. The evaluation of the closure shows that 92% of family members/guardians who responded to a mailed survey reported satisfaction with their family member/ward’s new residential setting approximately one year after transition. These same respondents indicated overwhelming dissatisfaction (83%) with the decision to close when it was initially announced. Eighty-eight percent (n = 57) of the survey respondents were family members (parents, siblings, aunts/uncles, nieces/nephews, or cousins), while the remaining 12% (n = 8) were state guardians. ! IDHD is also a part of the evaluation of the Ligas Consent Decree. Preliminary findings show that families who are still on the waiting list for services report more unmet needs than those who came off the waiting list. This was especially true for families of individuals with greater behavioral support needs. Results also showed that minority families who came off the wait lists showed greater unmet needs in regards to “Networking with other families who transitioned off the waiting list” and “Training/Information about the Ligas Consent Decree.” ! IDHD has been collecting data on process and outcomes for people with disabilities who are a part of the Integrated Care program. People with disabilities who are Medicaid beneficiaries are being transferred to a managed care insurance model. The preliminary findings from this evaluation show that people with disabilities have a higher appraisal of their healthcare services if they are enrolled in managed care versus receiving fee-forservice Medicaid, that people with disabilities who are enrolled in managed care have fewer unmet needs than people enrolled in fee-for-service Medicaid and that people with IDD have a greater number of unmet medical needs than did people who did not have IDD. This is true both in managed care and fee-for-service Medicaid. Director Heller and her team will continue to evaluate the shift from fee-for-service Medicaid to a managed care approach for the next several years. 9 Research IDHD places great emphasis on researchoriented activities and training opportunities. Many research-related activities are integrated across community services projects thereby creating a direct link between research and practice. Some examples of research are highlighted below: Using the National Survey of Children with Special Health Care Needs, Professor Sandy Magana and colleagues (Parish et al., 2013) studied the racial and ethnic healthcare disparities among children with IDD. The authors found that significant racial disparities in health outcomes exist between Black and White children and Latino and non-Latino White children. ! Heller, Mitchell, Owen, Keys and Viola (2013) produced a substantial report on the impact of managed care in Illinois for seniors and people with disabilities. Analyses of encounter data indicated that people with IDD in managed care had a greater reduction in emergency room use over a two year period than those in fee for service. ! Parker Harris, Renko, and Caldwell (2013) studied the perspectives of people with disabilities and other stakeholders on accessing social entrepreneurship. Social entrepreneurship has been gaining increasing attention as a possible employment strategy for people with disabilities. ! Hsieh, Rimmer, and Heller (2013) examined the prevalence of obesity in adults with intellectual disabilities (ID) compared with the general population, and the factors associated with obesity and weight management status, comparing individuals with ID who were overweight or obese to those who were not. Results showed that compared with the general population, adults with ID had a higher prevalence of obesity and morbid obesity. ! Friedman, Rizzolo, and Schindler (2014) examined the dental services in Medicaid Home and Community Based Services (HCBS) waiver applications targeting individuals with IDD. The results indicated only a fraction of states are utilizing the HCBS waiver to address gaps in dental coverage for adults with I/DD. ! ! LEND director Kruti Acharya presenting at AUCD 10 Information Dissemination In the preceding academic year, faculty produced over 260 publications, including 52 journal articles, 1 book, 19 book chapters, 78 fact sheets and brochures, and 32 monographs or technical reports. Our student trainees produced over 27 publications including 6 refereed journal articles. ! In addition to dissemination of printed materials, IDHD employs the use of social media tools, such as social networking, microblogs and YouTube videos, as mechanisms through which to share information and publications across a broad audience. IDHD also maintains an active Facebook group page: www.facebook.com/uic.idhd ! Faculty and staff were also very visible through other media outlets including UIC Alumni magazine, UIC News, the Chronicle of Higher Education, Windy City Times, Community Services Reporter, Disability Beat Radio, ABC Channel 7 News, the Huffington Post Blog, and the Chicago Tribune. Presentations audiences. Additionally, students in IDHD/DHD’s Disability Studies Doctoral and Masters programs as well as the LEND program participated in over 130 presentations this year. ! Some of the presentation and seminar topics included: ❖ The ADA ❖ Autism ❖ Sibling Leadership ❖ Accessibility ❖ Physical Activity ❖ Aggression / Anger Management ❖ Aging Services ❖ Assistive Technology ❖ Disability Culture and Art ❖ Clinical Services for Hispanic Families of Children with DD ❖ Vocational Rehabilitation ❖ Health Promotion ❖ Crisis Intervention ❖ Cross-Cultural Issues ❖ Dating Skills ❖ Disability Rights ❖ Policy Values and Employment ❖ Dual Diagnosis ❖ Early Intervention ❖ Empowering Community Change ❖ Family Support ❖ Nutrition ❖ Participatory Action Research ❖ Sexual Self-Advocacy Faculty and staff participated in over 530 presentations to local, state, regional, and international LEND trainee presenting at the LEND open house Dale Mitchell, Irma Hernandez, Sara Shields-Cole & Amie Lulinski Carli Friedman presenting at AUCD 11 Direct Services Established more than 20 years ago, the Developmental Disabilities Family Clinics provide quality clinical and family support services with a life-span approach, as well as community education and training. Their services include comprehensive interdisciplinary diagnostic assessments, specialized individual and group therapies, and family support in Spanish and English with a strong commitment to minority populations. The clinics emphasize the value of family, resources within the community and a multidisciplinary approach in providing services. www.ahs.uic.edu/cl/familyclinics/ ! Grupo SALTO, a monthly support group of approximately 435 Spanish-speaking families of children with an autism spectrum disorder (ASD) facilitated by the Hispanic Team, offers educational sessions for parents, a sibling support group, as well as an arts, dance, and music program for children with ASD. http:// gruposalto.org/ ! Another support group gaining popularity is the Autism Spectrum People in Education, or ASPiE. This peer support group for college students on the autism spectrum from all over the Chicago-land area continues to meet on a biweekly basis during the academic year. Thirty-nine members strong, and facilitated by a clinical psychologist, Dr. Jennifer Gorski, the group focuses on peer interactions, support and relationship building in a fun environment. ! The Autism Clinic and The Autism Program (TAP) training center at UIC is a specialty clinic serving children, adolescents, and adults with known or suspected Autism Spectrum Disorders and their families in the city of Chicago and surrounding areas. Its services, which are provided in both English and Spanish, include diagnostic assessments, interventions, community education, parent training, and support. http://theautismprogram.org/ ! Our interdisciplinary Assistive Technology Unit (ATU) has been providing services to underserved individuals with developmental disabilities in northern Illinois for the past 20 years. Assistive Technology (AT) evaluations are provided each year to approximately 350 individuals of all ages with a range of disabilities. Over 95% of ATU services were provided in the community through 7 Mobile Units. These custom vans bring evaluation and implementation services to the consumer in individuals' homes, schools, workplaces, or recreation settings. The ATU also participates in research activities in the field of assistive technology, and is committed to academic excellence and leadership development for professionals and consumers. The ATU offers a variety of seminars and workshops with continuing education credits available for working professionals. www.ahs.uic.edu/ cl/atu/ 12 ! Programs & Centers Assistive Technology Unit (ATU) designs special technology to help people with disabilities be more independent. The ATU can work with a person at their home or worksite to make the space better for that person to live and work in. Technologies include augmentative communication devices, computers, and wheelchairs. ! The Center for Capacity Building on Minorities with Disabilities Research (CCBMDR) works to generate state of the art research and interventions designed to promote empowerment of minority individuals with disabilities and capacity building among A child working at the Family Clinics agencies delivering services to minority populations. ! The Center on Health Promotion for People with Disabilities (CHP), is a leader in research, education, and training on health promotion strategies for people with disabilities. ! Chicago Center for Disability Research (CCDR) is a research unit established for the study of social, psychological, and educational issues relevant to the life experience of people with disabilities. ! The Child & Family Development Center (CFDC) is an interdisciplinary public service and research center which promotes positive outcomes for young children and their families. The CFDC delivers high quality, state-of-the-art early intervention, early education, and coordinated therapeutic services to Chicago’s urban families. http:// www.uic-cfdc.org/ ! The Great Lakes ADA Center is one of 10 federally funded technical assistance centers on the Americans with Disabilities Act of 1990 (ADA). The Center promotes voluntary compliance with the law through technical assistance, training, consultation and dissemination of materials on employment, community participation, architectural accessibility and accessible technology www.adagreatlakes.org. ! 13 Programs & Centers ! !The Evaluation and Public Policy Unit conducts applied research and evaluation of policies and programs that impact individuals with disabilities and their families both in the State and across the nation. Current activities include: the State of the States in Developmental Disabilities (with the University of Colorado); rebalancing initiatives (including evaluation of institutional closures, the Ligas consent decree, and the Integrated Care program initiative); and participation on various state, local, national and international committees, boards and task forces that focus on improving the lives of people with disabilities. ! The Family Clinics provide interdisciplinary diagnostic and treatment services to children and adults with autism and developmental disabilities and their families. Its specialty programs include early childhood, school age, and adult services, bi-cultural Hispanic services, and autism programs, including the Autism Clinic and the TAP Training Center . The clinics also offer parent training, social skills groups and individual and group therapy. ! The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program. This one year interdisciplinary training program incorporates both didactic and hands on learning in clinical and community-based settings. The Illinois LEND program is part of a national network of interdisciplinary university-based programs. The LEND aims to prepare future leaders who will serve children with neurodevelopmental disabilities (including related disabilities and autism) and their families through coordinated, culturally competent, and family-centered care, as well as public health services and policy systems change. www.illinoislend.org ! The Program on Disability Art, Culture, and Humanities (PDACH) furthers research and supports the creation of disability art and culture. Research includes arts criticism, theory, history, and studies of careers of disabled artists, arts policy, and arts education. www.ahd.uic.edu/dhd/pdach ! Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD). The RRTCDD conducts research and serves as a national and international resource on the health and function of adults with intellectual and developmental disabilities (IDD) and their families as they age. Its research focuses on increasing understanding of health status, health access, and health behaviors; improving health through health promotion interventions; and improving health care through integrated care practices. It has developed nationally recognized training on health promotion and future planning for adults with IDD and their families. www.rrtcadd.org ! 14 New Grants in Fiscal Year 2014 ❖ Prevalence Risk Factors and Health Consequences Of Obesity (Yamaki; University of Alabama Birmingham) on Developmental Disabilities Services in Illinois (Yamaki; Shimizu Foundation) ❖ Locked in State: Medicaid and Intrastate Confinement for People with Disabilities in the US (Grossman; UIC office of the Vice Chancellor) ❖ Parents Taking Action: A Training Program for Latino Parents of Children With ASD (Magana; Autism Program) ❖ PROJECT ATX2: Assistive Technology for Social Networking and Safety in the Community (Hedman; Coleman Foundation) ❖ Vocational Rehabilitation Quality Assurance Project (Balcazar; Division of Rehabilitation Services) ❖ Transition Model Implementation (Balcazar; Illinois Department of Human Services) ❖ UIC Collaboration To Improve The Health Of People With Disabilities through State Based Public Health Programs (Yamaki; Illinois Department of Public Health) ❖ Trends in Healthcare Disparities among Children with Autism and Other Developmental Disabilities (Magana; Brandeis University) ❖ Medicaid Managed Care and Aging with Physical Disabilities (Heller; University of Washington) ❖ UIC Assistive Technology Unit Services to Members of the Colbert Consent Decree (Hedman; Illinois Department of Healthcare and Family Services) ❖ Comparing Care Coordination Models in Illinois (Heller; University of California San Francisco) ❖ Arc HealthMatters Workshop (Marks; The Arc of the United States) ❖ HealthMeet Project (Vasudevan; The Arc of the United States) ❖ White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs for the California Committee on Employment of People with Disabilities (Marks; US Department of Labor) ❖ Training Parents of Students with Disabilities: Using Technology to Enhance Civic Engagement (Burke; Institute for Policy and Civic Engagement, UIC) ❖ People with Intellectual and Developmental Disabilities Advancing Sexual Self-Advocacy: A Community Forum (Sandman; Institute for Policy and Civic Engagement, UIC) ❖ Engaging People with Disabilities and their Siblings in Policy Discourse (Arnold; Institute for Policy and Civic Engagement, UIC) ❖ Rehabilitation Research and Training Center on Developmental Disabilities and Health (Heller; National Institute on Disability and Rehabilitation Research) ❖ Research and Training Center on Family Support (Magana; National Institute on Disability and Rehabilitation Research) ❖ Workshop 6% 7% 34% 53% Federal State Other AIDD Source Funds Leveraged Federal $5,013,715 State $3,188,143 Other (universities, foundations, local) $637,324 For every $1 IDHD receives from AIDD, IDHD leverages an additional $17.01 15 Institute on Disability & Human Development ! www.ahs.uic.edu/dhd/aboutidhddhd/ The Institute on Disability and Human Development is a University Center for Excellence in Developmental Disabilities, with support from the Administration on Intellectual and Developmental Disabilities, U.S. Department of Health and Human Services. Director: Tamar Heller, PhD Phone: 312.413.1647 TTY: 312.413.0453 [email protected] Associate Director: Mary Kay Rizzolo, PhD [email protected] Director of Graduate Studies: Sarah Parker Harris, PhD [email protected] Artistic Director: Carli Friedman, MS ! ! ! IDHD Consumer advisory committee Advocates and Family Members Stephanie Campbell Lisa Cesal Marty Fox Lydia Galan Michael Grice Nora Handler Stevie Hopkins Elbert Lott Shirley Perez/Cynthia Justice Dorelia Rivera Monica Thorns ! Organizational Representatives Kevin Casey Division of Developmental Disabilities Donald Dew Habilitative Systems, Inc. Art Dykstra Trinity Services Zena Naditch/Melissa Picciola/Karen Ward Equip for Equality Tony Paulauski The Arc of Illinois Kris Risley/Karen VanLandeghem Community Health Sciences/MCH UIC School of Public Health Sheila Romano/Sandy Ryan/Margie Harkness Illinois Council on Developmental Disabilities Francisco Alvarado Division of Rehabilitation Services Russell Bonanno The Autism Program of Illinois (TAP) University of Illinois at Chicago 1640 West Roosevelt Road (M/C 626) Chicago, IL 60608-6904
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