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AUCD - Poster Symposium: Inclusive Community Living & Supports

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Monday, November 6, 2017 2:00 PM - 3:00 PM

Location: Grand Ballroom North Salon


Presenters

Families of Individuals with Developmental Disabilities Perceived Supports and Barriers to Visiting the Cincinnati Zoo & Botanical Garden
Valerie Miller, M.S. in Occupational Therapy, Occupational Therapist, University of Cincinnati UCE, UCEDD/LEND
Jennifer Smith, PsyD, BCBA-D, Cincinnati, OH, United States, OH - University of Cincinnati UCE, UCEDD/LEND;
Teresa Farmer, PsyD, Cincinnati, OH, United States, OH - University of Cincinnati UCE, UCEDD/LEND;
Jessie Richard, M.Ed., Cincinnati, OH, United States, OH - University of Cincinnati UCE, UCEDD/LEND;
Meghan Wolken, Cincinnati, OH, United States, OH - University of Cincinnati UCE, UCEDD/LEND;

This study was completed as a partnership between Cincinnati LEND and the Cincinnati Zoo. A Cincinnati LEND research group conducted focus groups to better understand the experiences of families of children with developmental disabilities while at the Zoo. Recommendations from the groups are being utilized to make changes at the Zoo to increase the accessibility for and participation with the Zoo for children with developmental disabilities.

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End of Life: The Role of the AUCD Network
Toby Long, PhD, Director of Training, Georgetown University Center for Child & Human Development, UCEDD
Genevieve Lai, Georgetown University, Washington, DC, United States, DC - Georgetown University Center for Child & Human Development, UCEDD;
Marisa Brown, Georgetown University, Washington, DC, United States;

End-of-life care is a complex moral issue. End-of-life decision-making resources for adults with intellectual disabilities may provide helpful information about the impact of developmental disabilities, home and community based services, hospice and palliative care, and end-of-life planning has on a person with I/DD, their families, and guardians. The purpose of this project was to determine what programs and/or resources AUCD network members offer to support people around end-of-life decision making.


Supporting a Life in the Community: Lessons Learned through Iowa's the Money Follows the Person Program.
Brooke Lovelace, M.S. Rehabilitation Administration, Program Manager , Center for Disabilities and Development, UCEDD/LEND
Shane Fetui, Des Moines , IA;
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Iowa's UCEDD has been implementing the Money Follows the Person Program on behalf of the state for the last 10 years. Historically, Iowa has had a high reliance on facility based services to support people with more complex needs. MFP made it possible to show community living is possible for people with such needs. Iowa specific lessons learned and success stories will be shared.

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Lifting our Voices for Inclusive Community Music-Making: an Intergenerational Choir Sponsored by West Virginia University's UCEDD.
Kathleen Martin, Music Therapist & Creative Arts Therapy Coordinato, Center for Excellence in Disabilities, UCEDD/LEND
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The Intergenerational Choir is a pilot music therapy program, sponsored by West Virginia University's UCEDD, for community members and staff to participate in an inclusive music making experience. Group members include those with and without disabilities and aims to promote independence, foster meaningful relationships, and improve quality of life. The choir provides the opportunity to evaluate the impact of music therapy services through the centers new Creative Arts Therapy Program.

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Measuring the Reliability and Validity of the National Core Indicators Adult Consumer Survey: Past, Present and Future Psychometric Studies
Alexandra Bonardi, HSRI Project Director for NCI, Eunice Kennedy Shriver Center, UCEDD/LEND
Renata Ticha, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;
Dorothy Hiersteiner, Human Services Research Institute, Cambridge, MA, United States;
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National Core Indicators, a standardized approach to Intellectual/Developmental Disability (IDD) System performance and outcome measurement across states, has long served to provide policy-makers with data to help improve the quality of services and supports to adults with IDD. This presentation discusses the efforts to assess purpose of NCI, the reported reliability and validity of the NCI Adult Consumer Survey and studies underway.


The Impact of Disability Awareness Training on the Knowledge and Self-Efficacy of Church Ministry Personnel: An Initial Investigation
JoLynn Webster, M.Ed., Pre-service Co-ordinator, North Dakota Center for Persons with Disabilities, UCEDD
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People with intellectual and/or developmental disabilities have the right to choose their own expressions of spirituality and to participate in the faith community of their choice or other spiritual activities(AAIDD, 2010). However, research indicates the majority of individuals with disabilities who desire participation in a faith community are not included. This study investigated the impact of a disability training curriculum on the knowledge and self-efficacy of church ministry staff.

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The State of the States in Intellectual and Developmental Disabilities 2017: Uncovering the Trends in IDD Programs and Services
Amie Lulinski, PhD, Research and Development Coordinator, Coleman Institute for Cognitive Disabilities
Emily Shea Tanis, PhD, Coleman Institute for Cognitive Disabilities, Boulder, CO;
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The State of the States in Intellectual and Developmental Disabilities (IDD) Project of National Significance investigates the determinants of public spending for IDD services and supports in the states and nation. The 35 year old project reveals spending trends in community living, residential institutions, family support, supported employment, supported living, Medicaid Waivers, and related areas. Our 2017 data will be presented providing participants with information to influence policy and practice.

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Mobile Citizens: Medicaid Home and Community-based Services Users Desire and Pursue Cross-state Moves
Brian Grossman, MPH, PhD, Assistant Professor, Institute on Disability & Human Development, UCEDD/LEND
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Experiences of Medicaid home and community-based services (HCBS) users with physical disabilities who considered or pursued cross-state moves are analyzed. The term opportunity arc is introduced to describe pathways between opportunity and cross-state moves. Four distinct opportunity arcs are illustrated by participants' move stories; opportunity: 1) dreamed; 2) missed; 3) delayed; or 4) pursued. Obstacles to cross-state moves and the implications of these for policy and practice are discussed.

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An Updated National Review of Medicaid Home and Community-Based Services (HCBS) for Individuals with Autism Spectrum Disorders
Julie Kramme, MN, Researcher, Institute on Community Integration, UCEDD/LEND
Emma Jackson, MA, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;
Jennifer Hall-Lande, PhD, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;
Amy Hewitt, PhD, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;

This national review of Medicaid Home and Community-Based Services waivers was updated to examine prevalence of waivers that are specifically designed to serve people with autism, as well as waivers with a related clause that includes autism. Eligibility criteria and services covered on autism-specific waivers for children and adults were also examined.

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Community-Based Participatory Approach to Evaluating the Availability of HIV Supports in Atlanta for Individuals with Intellectual & Developmental Disabilities
Gatavius Price, MPH, Research Associate, Center for Leadership in Disability at Georgia State University, UCEDD/LEND
Andrew Roach, PhD, Atlanta, GA, United States, GA - Center for Leadership in Disability at Georgia State University, UCEDD/LEND;
Ernest Hopkins III, Phonix Foundation, Inc, Atlanta, GA, United States;
Franco Dispenza, PhD, CRC, Georgia State University, Atlanta, GA, United States;
Melissa Zeligman, PhD, Georgia State University, Atlanta, GA, United States;
Breanna Kelly, MS,MSW, LCSW, Atlanta, GA, United States, GA - Center for Leadership in Disability at Georgia State University, UCEDD/LEND;
Ramatu Muhammad, MD, Atlanta, GA, United States, GA - Center for Leadership in Disability at Georgia State University, UCEDD/LEND;
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This poster will report results from a community-university collaboration to evaluate the availability and scope of HIV supports for individuals with intellectual and developmental disabilities. All three project phases were guided by a community-based participatory research framework. Methods and strategies used to incorporate and utilize the community members' knowledge and experiences will be highlighted. Particular attention will be paid to recruitment strategies, community member participation, and information dissemination strategies.

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Library Accessibility for Individuals with Intellectual and/or Developmental Disabilities
Patricia Patrick, DrPH, Director of Research, Westchester Institute for Human Development, UCEDD/LEND
Sandra Mislow, MA, Valhalla, NY, United States, NY - Westchester Institute for Human Development, UCEDD/LEND;

Individuals with disabilities continue to face challenges within their community, including accessing their local libraries. This study sought to gain a better understanding of the experience and perspectives of individuals with disabilities and their family members/caregivers in using local libraries. Recommendations are made to improve accessibility and satisfaction.


Multi-Generational Intentional Communities for Adults with Autism
David Brooks, BA, MBA, , Freeman-Lowell Communities, LLC
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Spectrum Communities is a planned, multi-generational housing solution for adults with autism and their aging parents. Our concept will build and operate a network of resort/retirement communities providing life-long living arrangements + work and learning opportunities for adults with autism.

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Youth Experience in Inclusive PeaceJam Program
Shannon Haley-Mize, Ph.D., Associate Professor of Education, Elizabethtown College
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Description and analysis of qualitative data collected through interviews and focus groups of an Inclusive PeaceJam program designed to empower middle school youth of all abilities to engage in peace making through study of Nobel Peace Laureates, development of conflict resolution skills, and mentorship by future educators

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How Do People Who Are Aging with Intellectual and Developmental Disabilities Spend Their Days? Retirement Trajectories for People with IDD
Julie Kramme, MA, Researcher, Institute on Community Integration, UCEDD/LEND
Kelly Nye-Lengerman, PhD, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;
Roger Stancliffe, PhD, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;
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People with intellectual and developmental disabilities (IDD) participate in employment, but the ways in which people with IDD retire are less well understood. This study utilized a sample of 21,800 people from the National Core Indicators Adult Consumer Survey. It compared paid and unpaid activities of people with IDD across the working age span. This was used draw initial conclusions about the ways that people with IDD may retire.

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Wisconsin Longitudinal Study of Adult Long-Term Care Supports
Leann DaWalt, PhD, Senior Scientist, Waisman Center, UCEDD/LEND
Hanna Sawher, Madison, WI, United States, WI - Waisman Center, UCEDD/LEND;
Robin Meyer, Madison, WI, United States, WI - Waisman Center, UCEDD/LEND;
William MacLean, PhD, Madison, WI, United States, WI - Waisman Center, UCEDD/LEND;

The purpose of the Wisconsin Adult Long-Term Care Study is to understand changes over time in services and quality of life for individuals with intellectual and developmental disabilities who receive state-funded adult long-term care supports. We aim to longitudinally follow individuals and family members by administering an online survey once a year for five consecutive years. The current presentation will share results from the first wave of the study.


Characteristics, Needs and Outcomes of Medicaid Waiver Recipients with ASD or IDD Living With Family Members: RISP and NCI Findings
Sheryl Larson, PhD, Research Manager, Institute on Community Integration, UCEDD/LEND
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Most people with IDD who receive Medicaid funded supports live in the home of a family member (56% in 2014). This session summaries key findings from the longitudinal Residential Information Systems Project, and the National Core Indicators Adult consumer survey and Family Surveys regarding people receiving LTSS while living with a family member. Differences between people with or without Autism Spectrum Disorder in characteristics, services and outcomes will be explored.

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