Beyond Care Coordination: Cross-Systems Care Integration for Adults with IDD
Betty Geer, DNP, RN, CPNP · Brystal Karber, BA · Nichole Guerra, DBA
February 15th, 2018

RRTCDD and The Arc 2018 Health and Wellness Webinar Series

Webinar 2: Beyond Care Coordination: Cross-Systems Care Integration for Adults with Intellectual and Developmental Disabilities

3:00 pm, Eastern Standard Time

PLAY RECORDING (1 hr 6 min)

Download Presentation Slides

Abstract:

This presentation will define a new experimental role known as the Care Integration Specialist and explain how this role functions within a clinical setting, coordinating care across healthcare and community support systems. Preliminary and anecdotal data will be shared showing how this role positively impacts healthcare and quality of life of individuals with intellectual and developmental disabilities.

Presenter bios:

Nichole Guerra is a Research Coordinator at The Resource Exchange Research Center. She will earn her Doctor of Business Administration in June 2017. Her educational background is in Health Science and Nonprofit Management in the Human Services industry. Mrs. Guerra’s career in the field of intellectual and developmental disabilities began in 2005. She has extensive experience in residential and day program settings, case management, and adapted physical activities.

Betty Geer became Research Center Director for The Resource Exchange in Colorado Springs in September 2016. Her background includes more than 30 years cumulative experience in a broad range of fields, including public health research, nursing, graphic design, economic development, and architecture. She holds five degrees from the University of Colorado: Bachelor of Fine Art, Bachelor of Science in Nursing, Master of Science in Nursing, Master of Architecture, and Doctor of Nursing Practice. Dr. Geer also completed a Postdoctoral LEND Fellowship at JFK Partners at the University of Colorado, Anschutz Medical Campus. She is currently PI for the Care Integration and Quality of Life study, the research portion of the collaborative project entitled Health Coordination for People with Intellectual and Developmental Disabilities (IDD).

Brystal Karber, Bachelor of Arts in Cultural Anthropology and a Teaching Assistant at University of Colorado.

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace

American Journal of Nursing

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace by Diane Stonecipher, BSN, RN

“His IQ may have been devastated, but his EQ has not. He has lived 25 years on this earth and his experiences are valuable and visceral to him.”

Diane Stonecipher is a nurse living and working in Texas. Contact author: bobcipher@yahoo.com. 

Congressional Testimony on Aging – Tamar Heller

Tamar Heller, RRTCDD director, gave testimony before the United States Senate Special Committee on Aging on October 25, 2017. Her testimony addressed a number of issues facing older adults with intellectual and developmental disabilities including changes in health and health promotion, support for family caregivers, and retirement options. Download Full Testimony.

For a video of the entire hearing titled “Working and Aging with Disabilities: From School to Retirement” see the following link: https://www.aging.senate.gov/hearings/working-and-aging-with-disabilities-from-school-to-retirement

XCEL Training

XCEL is designed to give quick tips in an entertaining way to reception/support staff who interact with people with developmental disabilities in healthcare settings. It comprises of a 7 minute animated video, a fact sheet, and highlights other resources that are helpful.

 

Source: Florida Center for Inclusive Communities (FCIC)

XCEL Training

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.

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

Where All Bodies Are Exquisite

Source: The New York Times

“Circle Story #10,” a 2003 painting of poet and essayist Eli Clare. Credit Riva Lehrer

It’s 2009, and I’m in Philadelphia to deliver a talk at a conference. During a long break, I decide to visit the Mutter Museum. I teach anatomy, and the Mutter houses a collection of so-called medical curiosities. I examine the wall of skulls, the cases full of skeletons, and go downstairs, where preserved specimens wait for inspection.

And there I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. Some extrude a bulging sac containing a section of the cord. These balloons make the fetuses appear as if they’re about to explode. This condition is called spina bifida.

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18th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care

AUCD is proud to support the online broadcast of Baylor College of Medicine’s 18th Annual Chronic Illness and Disability Conference.

Source: AUCD

Participate Remotely

All MCH Training Programs and UCEDDs are invited and encouraged to participate remotely by hosting a live stream of this conference for trainees, faculty, staff, families, and others at your center or program. Eligible broadcast sites include MCH training programs, UCEDDs, and Title V programs. This is an excellent opportunity for your trainees and staff to gain in-depth coverage of a range of transition issues at a very low cost of $150 per site.

An Engaging Agenda

Hosted by Baylor College of Medicine and available nationwide through an AUCD-sponsored live broadcast, this year’s conference is shaping up to be a valuable resource for the AUCD network and beyond. Register as a broadcast site in order to:

  • Listen to Toronto Children’s Hospital share about the role that social media and digital communications can play in engaging transition-aged youth
  • Participate in a breakout session on Supported Decision Making
  • Learn about one LEND alumni’s work toward educate others on healthy sexuality for people with I/DD
  • Earn CME and CNE Credits, Social Work CEUs, and PT and OT CCUs without leaving the office

… and much more!

Register

To register as a broadcast site, contact Baylor College of Medicine, Office of Continuing Medical Education, at 713-798-8237 or e-mail cme@bcm.edu for instructions. For registration questions, contact Baylor’s Cicely Simon. To speak with someone at AUCD about this event, contact Sarah DeMaio

Why We Participate

“Minnesota LEND partners with Gillette Lifetime Specialty Clinic in co-hosting the live broadcast of this conference …to learn about evidence-based practices in the critical need area of healthcare transition. Gillette staff members were very excited about this opportunity to ‘attend’ Baylor’s conference at their work place. We hope to increase this type of collaborative learning each year for our clinical partners and trainees.” 

– Rebecca Dosch-Brown, MN LEND Training Coordinator

Baylor does an excellent job of addressing the task of facilitating adolescent transition as youth learn to navigate health care, post-secondary work or school, and independent living. The mixture of national and local presenters who come from clinical, research, policy, advocacy, and patient perspectives provide a well-rounded presentation of the realities of transition. The annual conference jumps starts our trainees’ knowledge and skill development regarding transition. It allows us to introduce a wide array of issues that would take us much longer to do with our own content development. We are grateful that we are able to gain so much with a relatively small investment on our part.

– David Deere, Arkansas Regional LEND Training Director

“WI LEND program works with our state Youth Health Transition Hub to host at least 2 sites in Wisconsin – Madison and Milwaukee. LEND trainees participate as they are able, but are a small part of the audience. We have mostly providers (nurses, SW, MD, other health professionals), our MCH PPC partners and trainees, and just a few families, who come to the broadcast.”

-Anne Harris, WI LEND Director