Promoting Health and Leadership in Project SEARCH® Programs

 

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Date and time: Thursday, October 12, 2017 2:00-3:00 pm (EST)
Duration: 1 hour
Description:

For people with intellectual/developmental disabilities, maintaining health and wellness is essential to achieving and maintaining independence, participating in society, and preventing the onset of secondary health conditions. Yet, people with disabilities (PWD) experience poorer health than the general population and alarmingly higher rates of obesity and related conditions. The University of Cincinnati UCEDD and Strong Center for Developmental Disabilities at University of Rochester implemented and evaluated the evidence – based HealthMessages Program curriculum with Project SEARCH students. HealthMessages Program is a 12-week health promotion program which uses peer-to-peer facilitation to learn about physical activity and hydration; as well as making healthy choices, lifestyle changes, and setting goals. This presentation will provide a summary of lessons learned from the pilot project.

CEUs: There will be no CEUs provided for this presentation.

PRESENTERS

Julie Christensen, PhD, LMSW, Director, Center for Disabilities and Development (UCEDD), University of Iowa, Iowa. Julie is the Director of Iowa’s University Center for Excellence in Developmental Disabilities (UCEDD), Center for Disabilities and Development (CDD), at the University of Iowa. Prior to joining CDD in May 2016, Dr. Christensen served as the Director of Employment Programs at Strong Center for Developmental Disabilities (UCEDD), at the University of Rochester Medical Center. Dr. Christensen’s background encompasses work in schools, not-for-profits, government and higher education. For the past 14 years, her career has centered around improving quality of life outcomes for at-risk youth, including youth with intellectual and development disabilities, through promoting employment and access to leisure and recreation opportunities in inclusive settings. She has considerable experience developing, administering, and evaluating federal, state and local grant-funded projects with an emphasis on cross-systems collaboration and systems change. She currently maintains a research faculty appointment in the Department of Psychiatry at the University of Iowa Hospitals and Clinics, and adjunct appointments in the Department of Pediatrics, Division of Developmental and Behavioral Pediatrics and the University of Iowa School of Social Work. Her research is in the areas of employment, quality of life, and leisure and recreation participation of adolescents and young adults with IDD.

Melissa Pennise, M.P.H., Sr. Health Project Coordinator – Health Disparities, University of Rochester Medical Center, Golisano Children’s Hospital. Melissa joined Developmental and Behavioral Pediatrics in 2014. She previously worked at the Monroe County Department of Public Health where she worked in the Communicable Disease Control and Prevention Division. Melissa’s public health interests include data-driven quality improvement, and access to healthcare for vulnerable populations..

PRESENTATION CONTRIBUTOR

Maryellen Daston, PhD, Program Specialist, Project SEARCH, Cincinnati Children’s Hospital, Cincinnati, OH. Maryellen is is a technical writer with a background in biomedical research. Prior to her current position with Project SEARCH, she was involved with research in the field of developmental neuroscience. In her current position, Maryellen works with the Project SEARCH central administration team at Cincinnati Children’s Hospital Medical Center. Maryellen manages the Project SEARCH database and is responsible for editing and writing content for the Project SEARCH website, articles for professional journals, and other communications. She is also involved with researching funding opportunities, writing grant proposals, and overseeing research related to Project SEARCH. In addition, Maryellen co-authored the book on the history, philosophy, and practices that define the Project SEARCH model, “High School Transition that Works: Lessons Learned from Project SEARCH”, Paul H. Brookes Publishing Co.

ACKNOWLEDGEMENT

These webinars are hosted by the HealthMatters ProgramTM in partnership with Project SEARCH® and funded by The Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD). The RRTCDD is funded through United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Grant # 90RT5020-01-00, and a grant from the Ohio Developmental Disabilities Council.

Better Health by Health Education & Sustained Employment

 

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Date and time: Thursday, September 28, 2017 2:00-3:00 pm (Eastern Time)
Duration: 1 hour
Description:

Abstract

The critical relationship between employment status and health is well established. Health education can enrich a Project SEARCH experience and increase the likelihood of sustained employment for Project SEARCH interns through better health. Join representatives from the Community Plan of Texas who will share how the Health Matters curriculum was implemented at their site. This session will encourage Project SEARCH on-site teams to understand the correlation between employment and health and wellness as well as best practices for implementing the health related curriculum.

Q & A

Question: Where are the Videos in the HealthMatters Curriculum in Lesson 8 Healthy Choices/Self-AdvocacyFreedom Equality & Justice for All” and Lesson 9 What do I think of me? Disability, Identity & Culture?” 

Response: https://www.disabilitytraining.com/product-info.php?Freedom_Equality_Justice_for_All_DVD-pid156.html

Other suggestions

  1. Self-advocacy video at a local library and found a local speaker with a disability. – http://www.zachkorbel.com/
  2. Advocating for Change Together (ACT) is Minnesota’s leader in the self-advocacy movement
  3. Self-Advocates Becoming Empowered (SABE) SABE’s Mission is to ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends, and to learn from their mistakes.
  4. Freedom Equality & Justice for All (DVD) This is a remarkable package of specific, concrete strategies for promoting and strengthening self-advocacy. Be a pioneer in promoting disability as an emerging civil right movement for persons with disabilities. Learn the rich history of self-advocates, disability rights activists, and the civil rights struggles. Viewers will have a stronger sense of empowerment and understand the importance of self-advocacy to their daily lives and futures. Narrated by Cheryl Marie Wade. This site also has other really nice videos discussing discrimination specifically for people with intellectual and developmental disabilities; and, it’s a conversation that is often difficult to have.
  5. The other option is to see if anyone from the local independent living center could come as a guest speaker to talk about self-advocacy.
  6. Another idea if the video can’t be shown is to create some type of banner, poster, or something that the class can create together to show what self advocacy means to them,  how it pertains to their health, etc. This might be a project for throughout the class, and just not the first class.  I do like Beth’s idea of contacting someone from the local community independent living center and see if they would come speak.
  7. Illinois has the Illinois Self Advocacy Alliance, and the vision is “Our vision is for self-advocates to work together to get the support we need to live the life we want in the community.”  Different communities, counties, agencies have self advocacy groups in IL. Does your state have something similar in which you could have an established self advocacy group come in and speak.

PRESENTERS

  1. Jillian Hamblin, Chief Operating Officer, UnitedHealthcare Community and Plan of TX, Houston, TX. Jillian is the Chief Operating Officer for the UnitedHealthcare Community & Plan of Texas. In her current role, Jillian oversees health plan operational excellence, reporting, project management, appeals and grievances, state complaints and fair hearings, and member advocacy. Prior to assuming this role in December 2015, Jillian focused on process documentation, creation and implementation of clinical training programs, employee engagement and quality management. Jillian received a Bachelor of Science in Psychology from Baylor University.
  2. Patti Moore, Upper Valley Career Center Project SEARCH Coordinator of Upper Valley Medical Center, Sidney, OH. Patti coordinates a partnership between the Upper Valley Career Center, Upper Valley Medical Center, Koester Pavilion, Miami and Shelby County Boards of Developmental Disabilities, Capabilities Inc., and Opportunities for Ohioans with Disabilities. Currently in its eighth year locally, Upper Valley Project SEARCH is a high school transition program designed to provide training and education in a business setting, with the goal of competitive, community employment. This is Patti’s 25th year working in special education, 14th year as a Career Tech Special Needs Transition Coordinator, and 8th year as a Coordinator in Project SEARCH.
  3. Alexandra Needler, Project SEARCH Business Liaison, UnitedHealthcare, Houston, TX. Alexandra serves as the Project SEARCH Business Liaison while assisting UnitedHealthcare members in seeking and obtaining employment. Before joining UnitedHealthcare, Alexandra was a Special Education Teacher for nine years in Fort Bend ISD. For the last five years with FBISD, Alexandra was a Vocational Adjustment Coordinator and Transition Specialist and focused on assisting transition age students and their families to plan and prepare for postsecondary employment.
  4. Jessica Treybig, Fort Bend ISD Project SEARCH Instructor, UnitedHealthcare, Fort Bend, TX. Jessica is a Project SEARCH Teacher at UnitedHealthcare and is an Adult Transition Teacher with Fort Bend ISD and has been teaching in Fort Bend ISD for 3 years. Prior to joining Fort Bend ISD, she taught students with disabilities in the Austin area and assisted in developing a robust community based work program. Prior to teaching, she worked with adults with severe disabilities through a nationally recognized long term support provider. Jessica is a graduate of Texas State University.

ACKNOWLEDGEMENT

These webinars are hosted by the HealthMatters ProgramTM in partnership with Project SEARCH® and funded by The Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD). The RRTCDD is funded through United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Grant # 90RT5020-01-00, and a grant from the Ohio Developmental Disabilities Council.

 

 

 

Accessible Hospitals and Medical Care Facilities – A Refresher Webinar

Source: Accessible Hospitals and Medical Care Facilities – A Refresher

This session will provide a refresher on the requirements in the ADA and ABA Accessibility standard for Hospitals and Long-Term Care facilities. The presenters will provide an in-depth review of the standards and design challenges in long-term care settings, including highlights from recent research. Additionally, strategies for success in the field that both comply with the standard and meet the needs of older adults and their caregivers will be discussed. This is a joint session presented by the Access Board and the AIA Codes and Standards Committee. Session participants are encouraged to submit questions in advance.

Link Checkers and Basic Accessibility Testers for Websites

Source: LiveWell RERC

Leighanne Davis, B.S.

Introduction

Ensuring website optimization and ease of use are goals of any developer. This holds especially true for organizations disseminating a lot of information to a variety of users from different backgrounds and with different ability levels. Broken links or missing alt text can be frustrating for some people with accessibility challenges. These also detract from the user experience. To mitigate these website errors or accidental exclusions, developers and even laymen can use various online resources to check the efficiency and ease of use of websites.

Download Web+Accessibility+Testing Report for resources and broad information on services offered and how these tools can also be used as a basic accessibility test.

Topics include:

• Programs for website testing

• Locations to download / use each program

• Recommendations

Early Childhood Technical Assistance Center: Improving Systems, Practices and Outcomes for Young Children with Disabilities and their Families

Source: ECTACenter.org : The Early Childhood Technical Assistance Center : Improving Systems, Practices and Outcomes for Young Children with Disabilities and their Families

Most recent additions to this page:

 National Child Traumatic Stress Network (2017) – established to improve access to care, treatment, and services for traumatized children and adolescents exposed to traumatic events. This resource includes descriptions of each type of trauma and evidence-based treatments that work.

 Caring for Children in a Disaster (2017) – This collection of resources from the Centers for Disease Control and Prevention offers simple steps to protect children in emergency situations and help meet their needs during and after a disaster.

Related pages:

State Community Health Worker Models – NASHP

As states transform their health systems many are turning to Community Health Workers (CHWs) to tackle some of the most challenging aspects of health improvement, such as facilitating care coordination, enhancing access to community-based services, and addressing social determinants of health.

Source: State Community Health Worker Models – NASHP

While state definitions vary, CHWs are typically frontline workers who are trusted members of and/or have a unique and intimate understanding of the communities they serve. This map highlights state activity to integrate CHWs into evolving health care systems in key areas such as financing, education and training, certification, and state definitions, roles and scope of practice. The map includes enacted state CHW legislation and provides links to state CHW associations and other leading organizations working on CHW issues in states.

Big Data and the Americans with Disabilities Act

Date Written: 2017

Abstract

While big data offers society many potential benefits, it also comes with serious risks. This Essay focuses on the concern that big data will lead to increased employment discrimination. It develops the novel argument that the Americans with Disabilities Act (ADA) should be amended in response to the big data phenomenon in order to protect individuals who are perceived as likely to develop physical or mental impairments in the future. Employers can obtain medical data about employees not only through the traditional means of medical examinations and inquiries, but also through the non-traditional mechanisms of social media, wellness programs, and data brokers. Information about workers’ habits, behaviors, or attributes that is derived from big data can be used to create profiles of undesirable employees. It can also be used to exclude healthy and qualified individuals whom employers regard as vulnerable to future medical problems. The ADA, which now protects only individuals with current or past disabilities and those who are perceived as having existing impairments, can no longer ignore the discrimination threats posed by predictive health data. The Essay analyzes these risks and propose a detailed statutory response to them.

Download Paper

Hoffman, Sharona, Big Data and the Americans with Disabilities Act (2017). 68 Hastings Law Journal 777 (2017); Case Legal Studies Research Paper No. 2016-33. Available at SSRN: https://ssrn.com/abstract=2841431

Self-identifying as disabled and developing pride in disability aid overall well-being

Date: August 28, 2017

Source: Oregon State University

Summary: Experiencing stigma, the severity of a disability and a person’s age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research shows.

Experiencing stigma, the severity of a disability and a person’s age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research from Oregon State University shows.

“Roughly 15 percent of the world’s population has some kind of disability but just a fraction of those people actually identify themselves as people with disabilities. Disability identity is a critical step in accepting a disability and helps to reduce the stigma surrounding the label,” said Kathleen Bogart, an assistant professor of psychology in the College of Liberal Arts at Oregon State University.

Those who self-identify are also more likely to develop pride in their disability, a shift in thinking that can help build resilience and change public attitudes about the “disabled” label, said Bogart, an expert on ableism, or prejudice about disabilities, whose research focuses on the psychosocial implications of disabilities.

“The challenge with disability as a label is that it’s so mired in stigma that people don’t want that label,” she said. “Can we reduce the stigma and reframe the label as a neutral label that is just useful as a category, like male or female? Or taking it even further, can we shift the label to the point where people have pride in that label?”

Bogart explored issues around disability self-identification and disability pride in two new studies published recently in the journal Rehabilitation Psychology.

The first study examined who is most likely to self-identify as disabled. For the study, about 700 people over age 18 completed an online survey that asked them to identify health conditions they had by checking boxes, or if their condition was not listed, filling in a box. Among the most common impairments were allergies, anxiety, depression, migraines, back injury or pain, attention-deficit/hyperactivity disorder, respiratory disease, hypertension and chronic pain.

Participants also were asked to rate characteristics of their health condition, such as whether it affects daily life, how often it causes physical pain and how often it is noticeable to other people. In addition, they completed a questionnaire about whether they experienced stigma and discrimination because of their condition. They were also asked whether they identify as a person with a disability. Only 12 percent of people with a health condition agreed or strongly agreed that they were a person with a disability.

The researchers found that experiencing stigma, along with severity of the impairment, were the biggest factors influencing whether someone with a disability identified that way.

“The finding regarding stigma was a really powerful one,” Bogart said. “It supports the idea that the concept of disability is primarily a social construct, developed by society’s reaction to that impairment. It’s not just the physical impairment. It’s the way people treat you and the way society builds an environment that does or does not include you.”

The study results suggested that severe impairments lead to greater stigma, which increased the likelihood that people self-identified as disabled.

In the second study, the researchers looked further at the role disability pride plays in overall wellbeing for people with disabilities. Developing pride in the disability — and rejecting the stigma of society on whole — shows promise as a way to protect against stigma and build self-esteem, Bogart said.

“Little is known about the good things that might come with embracing a disability identity,” Bogart said. “We believe developing pride may offer some protective effects for people with disabilities who experience stigma.”

Using the same set of more than 700 survey participants from the previous study, but looking at additional questions, the researchers analyzed factors that influence whether someone has pride in their disability. They found that disability pride tended to be more prevalent among those who experience stigma, those who have strong social support and people of color. They also found that people experiencing greater stigma seemed to lead to more pride, and greater pride was associated with greater self-esteem.

“Disability pride is still a rare thing,” Bogart said. “Most disabilities are invisible and people have to choose to identify with them. Many people hide their disabilities to avoid discrimination. But not identifying also perpetuates the stigma that disability is undesirable. Developing disability pride seems to reduce protect self-esteem against the negative effects of stigma. It’s a really valuable protection for people with disabilities.

“A logical next step for the research would be to develop interventions designed to boost disability pride among people with disabilities and at a policy level, with the goal of improving overall well-being and reducing stigma.”

Social support within the disability community could be bolstered through social groups and mentoring. At a policy level, political activism, media representation featuring disability pride and disability pride events may support pride development.

Co-authors of the self-identification study are Adena Rottenstein of Eastern Michigan University; Emily M. Lund of Boston University; and Lauren Bouchard of Purdue University. Rottenstein and Lund are also co-authors on the pride study. The research was supported by a research grant from the OSU College of Liberal Arts.

Oregon State University. “Self-identifying as disabled and developing pride in disability aid overall well-being.” ScienceDaily. ScienceDaily, 28 August 2017. www.sciencedaily.com

Story Source:

Materials provided by Oregon State UniversityNote: Content may be edited for style and length.


Journal Reference:

  1. Kathleen R. Bogart, Emily M. Lund, Adena Rottenstein. Disability Pride Protects Self-Esteem Through the Rejection-Identification Model.Rehabilitation Psychology, 2017; DOI: 10.1037/rep0000166

Medication and supplement use in older people with and without intellectual disability: An observational, cross-sectional study

1 Faculty of Pharmacy, University of Ljubljana, Ljubljana, Slovenia, 2 School of Pharmacy and Pharmaceutical Sciences, Trinity College Dublin, Dublin, Ireland, 3 IDS-TILDA School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland, 4 Dean of the Faculty of Health Sciences, Trinity College Dublin, Dublin, Ireland, 5 School of Social Work, Temple University, Philadelphia, Pennsylvania, United States of America, 6 The Irish Longitudinal Study on Ageing (TILDA), Trinity College Dublin, Dublin, Ireland, 7 Trinity College Institute of Neuroscience (TCIN), Trinity College Dublin, Dublin, Ireland

Source:  2017 Sep 6;12(9):e0184390. doi: 10.1371/journal.pone.0184390. eCollection 2017.

Abstract

Introduction Understanding the medication and supplement use of aging people is critical to ensuring that health service providers in primary care can optimise use of these agents. An increasing number of people with different levels of intellectual disability (ID) are living in the community and becoming for the first time substantial users of primary health care services. This, however, brings new challenges that need to be addressed at the primary health care level. We quantified the use of medicines and food supplements and described the associated patterns of morbidity in the two comparable cohorts of aging population with and without intellectual disability.

Method This research aligned participants of 50 years and over who lived in the community from two nationally representative cohorts of older people; those with ID from the Intellectual Disability Supplement (n = 238) and those without ID (n = 8,081) from the Irish Longitudinal Study on Ageing.

Results Data showed that both medication and supplement use in the two groups was prevalent but that those with ID received more of both medications and supplements (e.g. polypharmacy was 39.0% in ID vs. 18.1% in non-ID cohort). Moreover, based on an analysis of the therapeutic groups and medications used that treatment was more intense in the ID cohort (95.8 vs. 7.0 International Non-proprietary Names per 100 participants). Supplement use was almost twice as prevalent in the ID group but substantially less diverse with only 10 types of supplements reported. Morbidity was higher in the ID group and showed a higher prevalence of neurological and mental health disorders.

Medication and supplement use among older people with and without IDD

Caregiving and IDD and Dementia: Report of the Pre-Summit Workgroup on Caregiving and IDD

This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.  The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association.  The purpose was threefold:
  1. assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities;
  2. translate the contributions of these findings to the greater dementia care agenda; and
  3. promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform.
The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD.  Considered were five major areas related to care and caregiving:
(1) family caregiving interventions;
(2) supportive care settings;
(3) effects of diversity;
(4) screening and early detection; and,
(5) bridging service networks.
Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations.

NATIONAL RESEARCH SUMMIT ON CARE, SERVICES AND SUPPORTS FOR PERSONS WITH DEMENTIA AND THEIR CAREGIVERS: PRE-SUMMIT ACTIVITIES

See Information on the Assistant Secretary for Planning and Evaluation (ASPE) Website

National Task Group on Intellectual Disabilities and Dementia Practices — Caregiving and Program Research on Caregiving of Persons with Intellectual Disability and Dementia 

Prof. Tamar Heller, RRTCDD Director and chair of this ad hoc working group will be speaking at the Summit, and conveying the workgroup’s recommendations.

PRE-SUMMIT PAPERCaregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities
This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association. The purpose was threefold: (1) to assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities; (2) to translate the contributions of these findings to the greater dementia care agenda; and (3) to promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform. The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD. Considered were five major areas related to care and caregiving: (1) family caregiving interventions; (2) supportive care settings; (3) effects of diversity; (4) screening and early detection; and (5) bridging service networks. Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations. [PDF Version]