DAY 0 - One Voice for Oral Health PRE-CONFERENCE
Thursday MAY 9 | Eastman Institute for Oral Health
This Pre-Conference is included in your registration, but please register using the button below if you plan on attending.
8:15 AM - Registration & Continental Breakfast
9:00 AM - Pre-cONFERENCE WELCOME
Stephen B. Sulkes, MD, President of AADMD • Eli Eliav, DMD, MSc, PhD, Professor & Director, EIOH
9:30 AM - Keynote
Rick Rader, MD, Director, Morton J. Kent Habilitation Center, Orange Grove Center • Matt Holder, MD, MBA, Global Medical Advisor, Special Olympics
11:00 AM - Break
11:15 AM - EIOH Video & Henry Schein Recognition
11:45 AM - Arizona School of Dentistry & Oral Health's Model
Jack Dillenberg, DDS, MPH, Dean Emeritus, ASDOH
12:30 PM - Lunch & Golisano Foundation’s Address
Ann Costello, Executive Director of the Golisano Foundation
1:15 pM - Panel: Patient Experience & Perspective
Moderator: Tiffany Pulcino, MD | Panelists: Parent Advocate, Karen Raposa, RDH • Parent Advocate, Carrie Burkin • Mary Cariola Children's Center, Sara Walworth, LMSW • Patient, TBD
2:00 PM - Panel Discussion: Best Practices
Moderator: David Fray, DDS, MBA | Panelists: Wayne Lipschitz, DDS, Eastman Institute of Oral Health • Mark Wolff, DDS, PhD, University of Pennsylvania • Gary Goldstein, Emblem Health • Mary Foley, Executive Director, Medicaid/CHP • Meelin Dian Chin Kit-Wells, DDS, University at Buffalo • Michelle Ziegler, DDS, Medical University of South Carolina
3:15 PM - Tour of the Smilemobile & New Clinic
3:45 PM - Networking
Enjoy a cash bar while networking. Event will end around 5:00 PM.
NOTE: Earn 6 continuing education credits. Parking will be available in the main lot of the Larry and Cindy Bloch Alumni & Advancement Center located at 300 E River Rd. Shuttle service begins at 8:00 a.m. and will run all day.
DAY 1
Friday MAY 10 | The Hyatt Regency Rochester | Grand Ballroom
7:30 AM - Registration & Continental Breakfast
8:00 AM - CONFERENCE WELCOME - AADMD President's Address
Stephen B. Sulkes, MD, President of AADMD
Ann Costello, Executive Director of the Golisano Foundation
Norm Silverstein, President & CEO of WXXI Public Broadcasting Council & the Little Theatre Film Society
8:30 AM - Keynote Address
Joseph Shapiro, NPR Investigations Correspondent
Proud Keynote Sponsor of Joseph Shapiro
9:30 AM - Panel Introduction
Dianne Cooney Miner, PhD, MS, BS, Associate Vice President for Community Engagement and Dean, Wegmans School of Nursing, St. John Fisher College
9:45 AM - Panel: Aging well together
Moderator: Seth Keller, MD | Panelists: Beth Marks, PhD, RN • Lindsay R. Chura, PhD • Mark Peterson, PhD, MS • Dawna Mughal, PhD
*Nursing CE Available
Abstract: Getting older holds a great number of promises as well as challenges and uncertainties. A great body of research has shown that caring for oneself throughout life does matter and can have an impact upon the aging process. This panel will bring together national experts on wellness and health promotion as well as advocates who will discuss the current research and provide a practical approach that everyone should follow. Aging Well Together will also describe how a team approach is best to ensure that living well as one ages can lead to a positive and productive future. We are looking to get feedback from the participants in this open panel discussion, all ideas and thoughts are welcome and greatly appreciated.
10:30 AM - Exhibitor Showcase & Mid-Morning Break
11:00 AM - Panel: Aging well together Resumes
11:50 AM - Lunch Keynote Introduction
Stacey Hengsterman, President & CEO of Special Olympics New York
11:55 AM - Lunch Keynote
Neil Romano, Chairman of the National Council on Disability
12:45 pM - Exhibitor Showcase & Break
1:10 pM - Breakout presentations
Serial Assessment of Function in Dementia
Presenter(s): Seth M. Keller, MD, Kathryn G. Pears, MPPM, Kathy Service, RN, MS,. FNP-BC, CDDN, Adel Herge, OTD, OTR/L, Caitlin Cadematori
*Nursing CE Available
Abstract: Individuals with IDD and dementia present with behavioral and physical challenges as they progress through their disease. The support and healthcare for these individuals hold many opportunities to be able to help offset some of these complications of the disease and currently there is no consistent tool or scale which has been used to be able to provide feedback and data to help to document this disease and its many different elements. The AADMD in partnership with the Department of Occupational Therapy at Thomas Jefferson University is engaged in a project supported by the WITH Foundation to assess the validity and quality of the Serial Assessment of Function in Dementia (SAFD) tool. The SAFD is a digitalized online tool which is completed by caregivers to help provide like based information of an individuals ADL's, severity fo dementia symptoms, as well as a measure on the impact to the caregiver. The presentation will describe the project; its goals, validity measures, and the scope and direction of the study will be provided by several of the SAFD project team.
Colonoscopy in Individuals with Intellectual and Developmental Disabilities: Experience and Recommendations
Presenter(s): Leonard Fischer, MD, AGAF
Abstract: A colonoscopy examination program was established for adults with intellectual disabilities for screening and surveillance for colon neoplasms and evaluation of alarm symptoms associated with colon cancer.
Methods: We reviewed results of 100 colonoscopy examinations performed in 67 adults with intellectual disabilities from 1996 through 2016, using standard colonoscopy quality indicators.
Results: For individuals examined from 1996 through 2010, preparation quality was adequate for detection and removal of polyps > 5 mm in 61% of examinations, the cecal intubation rate was 89%, and the adenoma detection rate was 19%. There were 2 interval cancers out of 3 colon cancers detected. Following preparation protocol revision, there was improvement in preparation quality from 61% to 74% adequate, adenoma detection rate from 19% to 28%, no interval cancers were detected, and there were no complications. 28% of all individuals were found to have dilated or redundant colons consistent with acquired megacolon, and these individuals had the lowest quality examinations. Best quality results were achieved in individuals with mild or no constipation.
Conclusion: A colonoscopy examination program for adults with ID is feasible and essential for evaluation and management of colon neoplasms. The quality of examinations in adults with ID may be compromised, and the cancer prevention effectiveness of colonoscopy may be reduced. Substandard quality examinations were related to preparation difficulties in individuals with dysphagia, constipation, and acquired megacolon. Improvements in adenoma detection rate and preparation quality occurred following adjustments to the preparation protocol.
A colonoscopy program for adults with ID must include a customized preparation plan, monitoring of preparation progress, and extra time for modification of plans. Colonoscopy examination in adults with ID and an increased risk for colon cancer is recommended. Screening of individuals with average colon cancer risk should be considered, based on individual comorbidities and the prevailing screening program.
Impact of an Interprofessional Exercise in Disability for Health Professions Students
Presenter(s): Tamsen Bassford, MD
Abstract: Background: The majority of physicians have limited knowledge regarding the health and psychosocial needs of people with IDD, primarily due to a lack of exposure/training. A required IPE in Disability (IPED) is presented annually to UA health professions students and includes people with disabilities as co-teachers.
Specific Aims:
1) To improve knowledge and attitudes of health professions students about healthcare for people with disabilities.
2) To involve people with disabilities, and people with IDD specifically, in a meaningful way as co-teachers.
Methods: The IPED was presented to 696 students in AY2018. The session included a panel discussion by people with disabilities and case discussion by eight-person multi-professional groups. In a 2018 pilot project, community members with disabilities (including IDD) also joined 17 of the small groups as co-facilitators to represent the patient perspective and model person-centered planning. Impact of the event was measured by online retrospective pre-post evaluation, pre-post attitudinal word choice, post-event student comments. Impact of the pilot was captured by comments from faculty on a post-event survey.
Findings: The AY2018 evaluation (88% response) showed significant increases in self-reported understanding of health care from a disability perspective, impact of disability on health care, team member roles, disability as a social construct, and attitudes toward disability. 59% of student comments noted the panel discussion as the best aspect of the event. Comments from faculty facilitators on the pilot were positive and noted that the presence of self-advocates in small groups caused the students to take the exercise more seriously and show more empathy.
Discussion: An IPED had a positive impact on health students’ knowledge and attitudes. Teaching by self-advocates was seen as important by students and faculty. We will increase the number of self-advocates with IDD as IPED co-faculty through collaboration with Special Olympics Arizona athlete ambassadors.
A Health Literacy Curriculum for Adolescents and Young Adults with Autism Spectrum Disorder
Presenter(s): Laura Silverman, PhD, Therese R. Welch, PhD
Abstract: CLINICAL AIM: Over half of youth with autism spectrum disorder have typical cognitive abilities and are often expected to be more independent in their adulthood. Nearly half of these youth also have co-existing health conditions that require specialized care and result in higher use of medications. Few receive transition services to support self-management of their health care. A recent study developed and field-tested a health literacy curriculum to help address this concern. The major aim of the recent study was to design and pilot an intervention to support the transition to health care and medication self-management for this population.
PATIENT/ SUBJECTS: Participants were 14-25, with autism spectrum disorder, cognitive ability to participate in English, and currently prescribed medication for behavioral/emotional symptoms.
INTERVENTION: Participants were randomized to receive 10 curriculum modules as either: in-person classes (intervention) or self-study manuals (comparison). Classes met for 10 weeks, 5 weeks, and 3-day intensive. Curriculum developed with parent, patient, clinician, educator, and pharmacist input included safe effective medication use, making MD appointments and talking with doctors, creating a medication plan, and use of the pharmacy.
OUTCOME: 21 of 29 participants (72% intervention; 73% comparison) completed the trial. Intervention participants liked interactive/social aspects of the class; comparison self-study participants liked "small activities” and "how much time I had..." Some measures of transition readiness improved in both groups. Fidelity to curricular elements was 94% (intervention) and 63% (comparison). Our curriculum for self-management of medications for transition-age individuals with higher-functioning ASD was acceptable, feasible, and delivered with fidelity to the curriculum. Further research to test this intervention in a larger randomized trial is warranted.
1:35 pM - Breakout presentations
Relating Global Literature to Local Lives
Presenter(s): Jeanne Squires Lake, MS
Abstract: Issues: 1) Prevalence studies around the world are often limited by insufficient and conflicting information and data. How does this relate to area that we live in? 2) How would baseline guidelines help caregivers in recognizing disease related decline in their wards? Would one set of specific baseline guidelines work for all Intellectual and Developmental Disabled (I/DD) people? 3) What are the post diagnosis supports for caregivers and people with I/DD in local areas? How can these supports be found?
Positions and Findings: 1) In third world countries, disabled people cope with stigmatization and lack of understanding. This same thing happens in the US. but can be changed. 2) Guidelines of cognitive function are best established in DS around age of 35, and I/DD without DS ~age 50. 3) There are websites and brochures for support networks in local areas.
Conclusions: 1) Most insufficient and conflicting information comes from lack of understanding of conditions. Education of disabilities can help people to be more accepting of others. 2) Guidelines need to be individual in cognitive functions because each person is individual. This allows a caregiver to recognize when there is a decline in their ward, or other testing is needed to check for other problems; therefore, a specific set of baseline guidelines for all people with I/DD would not be efficient. 3) Professionals working with the diagnosis of each individual should have information available for patients and caregivers support systems.
Discontinuation of antipsychotics for challenging behavior in adults with IDD: A review of the literature
Presenter(s): Emily J. Johnson, MD
*Nursing CE Available
Abstract: Issues: Antipsychotic medications are commonly used to manage aggressive and challenging behavior in adults with IDD despite the limited evidence that exists for this indication. Many patients take antipsychotic medications long term without clear goals or end points. Although recommended, many do not undergo trials of discontinuation of antipsychotic medications.
Findings: Multiple recent studies address the effects of antipsychotic discontinuation on challenging behavior in patients with IDD, including a recent systematic review and additional randomized control trials. A range of responses to discontinuation were seen across patient populations in the reviewed studies, ranging from behavior improvement to behavior worsening. A variety of barriers to antipsychotic discontinuation and further research on the topic arose in multiple studies, primarily a lack of appropriate non-pharmacologic behavioral supports.
Conclusions: Although patients with IDD are likely to respond in different ways to attempts to discontinue antipsychotic medications, it is reasonable to attempt dose reduction or discontinuation of long-term antipsychotic medications in patients with intellectual disabilities with challenging behavior. A subset of this group will likely tolerate antipsychotic discontinuation without worsening of challenging behavior. Dose reduction and discontinuation may also have benefits on physical health including reduction in weight and other metabolic parameters.
National Curriculum Initiative in Developmental Medicine: 2019 Update
Presenter(s): Priya Chandan, MD, MPH
Abstract: Background: The National Curriculum Initiative in Developmental Medicine is a multi-year partnership between the American Academy of Developmental Medicine and Dentistry (AADMD) and Special Olympics International (SOI), with resources from a cooperative agreement funded by the Centers for Disease Control and Prevention. The goal of the project is to provide training to medical students in the field of developmental medicine - the care of individuals with intellectual/developmental disabilities (IDD) across the lifespan. Specific Aims: 1) Support medical schools nationwide in implementing developmental medicine curriculum. 2) Engage self-advocates in the development of curriculum Methods: Each Medical School Partner develops project activities that are feasible and sustainable given their local context. NCIDM supports the testing of multiple methodologies, to determine best practices for training medical students about the patient population of people with IDD. Findings: Preliminary results from NCIDM will be discussed. Discussion: NCIDM is an opportunity for those interested in medical education efforts regarding people with IDD. The presenter will discuss strategies and lessons learned, to assist those interested in developing an application for Cohort 4.
Oral Health Among U.S. Adults by Disability Status and Disability Type
Presenter(s): Catherine Okoro, MS, PhD
Abstract: Background: Oral health disease is a leading secondary condition among people with disabilities that may further compromise their health. People with severe disabilities may have more difficulty with access to preventive oral health services.
Specific Aims: This study aimed to examine the prevalence of oral health service use and edentulism by disability status and functional disability type.
Method:Data from the 2016 Behavioral Risk Factor Surveillance System survey — a state-based telephone survey of U.S. non-institutionalized adults aged ≥18 years — were analyzed to assess prevalence of oral health service use and edentulism among 402,705 adults without and with disabilities (serious difficulty with cognition, hearing, mobility, or vision; any difficulty with independent living or self-care). Adjusted prevalence ratios were estimated by conducting log-binomial regression with a robust estimator while adjusting for sociodemographic characteristics (age, sex, race/ethnicity, educational attainment, marital status, and federal poverty level), health care access, lifestyle behaviors, body mass index, and chronic conditions.
Findings: One in 4 adults aged ≥18 years had at least 1 of 6 disability types. Adults with disability had a lower prevalence of dental service use (55.4% vs. 70.2%; p
2:00 PM - BREAKOUT PRESENTATIONS
In Their Own Words: The Experience of Caregiving for Adults with Intellectual Disability and Dementia
Presenter(s): E. Adel Herge, OTD, OTR/L, FAOTA
Abstract: Background:There is a growing population of adults with intellectual disability (ID) and dementia. Changes in personality and behavior are often exhibited and symptoms vary from the typical population. These changes along with decline in adaptive skills and cognitive function frequently pose significant challenges to direct support personnel (DSP). Approaches for effectively supporting adults with ID and dementia demand a new set of skills that differ from those required to support a person with ID1. Evidence identifies support and training as important factors to mitigate the stress the DSP experiences when addressing needs of persons with ID and dementia2. In order to develop and implement a specialty training program for DSPs, an understanding of their experience is essential.
Specific Aims: We sought to capture the daily caregiving experiences of DSPs supporting adults with ID and dementia in group homes and identify the specific language DSPs use to describe their experience.
Method: A trained interviewer conducted focus groups and audio recorded and transcribed each session. Thematic analysis was conducted to identify major themes.
Findings: We uncovered three themes that reflect DSP experiences: caregiver characteristics (selflessness, feeling valued), challenges and solutions (different every day; try something new), and past and current experiences (life experience; learning by doing).
Discussion: These findings will be used to adapt a proven education program for family caregiver of persons with dementia for use with DSP supporting adults with ID and dementia.
1. Wilkinson, H., Kerr, D., & Cunningham, C. (2005). Equipping staff to support people with an intellectual disability and dementia in care home settings. Dementia, 4(3), 387-400.
2. Iacono, T., Bigby, C., Carlin-Jenkins, R., & Torr, J. (2014). Taking each day as it comes: staff experiences of supporting people with Down syndrome and Alzheimer’s disease in group homes. Journal of Intellectual Disability Research, 58 (6), 521-533.
Successful Inclusion: The Nurse's Role
Presenter(s): S. Diane Moore, BSN, RN, CDDN
*Nursing CE Available
Abstract: Issues: Inclusion for all individuals with IDD is today’s goal, but defining successful inclusion, and identifying relevant barriers, can be challenging. In many community-based IDD settings, unlicensed direct support personnel (DSP) are solely responsible for providing daily health support to the individual. In many cases, there is no mechanism in place to prepare the DSP to recognize or meet the person’s health needs. With a focus on increasing the person’s social exposure and experiences, the solid foundation necessary for successful inclusion is often overlooked.
Positions/Findings: Identifying what constitutes successful inclusion for the person and recognizing barriers are prerequisites to developing effective inclusion plans. Stable health is critical to the solid foundation necessary for successful inclusion. Failing to prepare the DSP to recognize or meet the person’s health needs and/or failing to provide the necessary clinical oversight, places the individual with IDD at risk, often with devastating consequences. Support teams must develop structures and systems that minimize risk and promote positive health outcomes.
Conclusions: Utilizing an experienced IDD nurse in the person’s support plan helps ensure positive health outcomes for the individual and provides critical education and support to the DSP. Understanding the key functions of the IDD nurse – in participating in the development of the support plan and in educating/preparing DSP – improves health support services and promotes successful inclusion.
TBD
Managed Long Term Care as a Non-Traditional Service Option for Individuals with ID/DD and Unmet Needs
Presenter(s): Joel Haas, M.D. and Andrew Sewnauth, Executive VP of Operations at CDS Life Transitions
Abstract: Issues: It is estimated that over 280,000 individuals in New York State have intellectual disabilities that could benefit from services that improve health, quality of life and independence. Yet less than half of these individuals are receiving services coordinated through OPWDD, including older adults with ID/DD who never engaged with State programs as pre-adults. Many of these individuals are now experiencing difficulty qualifying for services through OPWDD and face significant threats to health, safety and independence as their medical conditions accrue and their parents can no longer care for them due to advancing age and infirmity. These problems are compounded by a fragmented fee-for-service medical system ill-prepared to manage the complex needs of individuals with ID/DD.
Position: iCircle, supported by a grant from the Golisano Foundation, is exploring the impact of providing MLTC services as an option to traditional OPWDD services for high-risk, high-need individuals. Through education and outreach iCircle has identified and enrolled over 160 members using an assessment tool specific to ID/DD. iCircle has engaged its existing network of providers to provide services, many who already ID/DD providers. Education has been provided to iCircle Care Managers and assessment nurses on the special needs of this population in order to improve their health and independence, and promote the Triple Aim of healthcare by improving population health and reducing costs.
Conclusion: The results to date have demonstrated that MLTC is a viable alternative to the already strained and under-resourced traditional health and service delivery system. In addition, this innovative project will help to build the tools and skills required in care management for the ID/DD population, and will facilitate the transition to fully integrated Managed Care for individuals ID/DD.
2:25 PM - BREAKOUT PRESENTATIONS
A functional approach to treating challenging behaviors: Implications for individuals with ID and dementia.
Presenter(s): SungWoo Kahng, Ph.D., BCBA-D
Abstract: Clinical Aim: There is a paucity of research examining behavioral interventions for challenging behaviors exhibited by individuals with intellectual disabilities (ID) and dementia. The aim of this clinical research project is to demonstrate the applicability of an applied behavior analytical approach to treating these problem behaviors in this population.
Patients/Subjects:Individuals with ID and dementia who exhibit challenging behaviors such as self-injurious behaviors, aggressions, and disruptive behaviors.
Intervention: Treatment based on applied behavior analysis (ABA) has been demonstrated to be an evidenced-based intervention for challenging behaviors exhibited by individuals with intellectual and developmental disabilities. However, there is little clinical research on how dementia can impact ABA treatment efficacy.
Outcome: We will discuss how ABA-based interventions, which include accommodations for dementia, can be effective for this populations.
A Review of Tools to Improve Healthcare Encounter Communication and Outcomes
Presenter(s): Susan Abend MD FACP, Priyanka Dharampuriya, MS
Abstract: ISSUES: Healthcare encounters for adults with intellectual disability (ID) are often limited by inefficient access to relevant information. Communication disabilities can make it difficult for providers to access the data they need within the time constraints of an average visit, and individuals with D/ID are not always accompanied by a knowledgeable advocate. Often, gaps in provider skill can also hinder correct information acquisition. These information voids have been identified as primary barriers to health equity for those with ID.
POSITIONS/FINDINGS: Tools developed in the US, Europe and Australia to improve health information communication were reviewed for content, ease-of-use, workflow, implementation consistency and evidence of outcome improvement. The study found that many currently available tools have inconsistent content and implementation. These tools also varied with respect to evidence of usability within the US and evidence of improved healthcare outcomes.
CONCLUSION: Effective healthcare communication tools are those which are most accurate and adapt easily to the workflow of current healthcare encounters. In addition, they should be easily accepted by patients, their advocates, and providers, and should be widely available to the general ID population. New electronic record technologies can communicate information from patients, direct service providers and all healthcare providers to inform all encounters and guide proper care. Leveraging information technology to optimize healthcare communication tools can improve health equity and outcomes for adults with ID.
Turning Clinician Education Upside Down: An Innovative Approach to Educate Clinicians Utilizing Direct Support Professionals
Presenter(s): Craig Escude, MD, FAAFP
Abstract: Clinical Aim:Improving the knowledge base of physicians, dentists and other clinicians in the area of IDD-specific healthcare can be challenging. With minimal training in professional schools, the competition of multiple continuing education options and limited availability of CME training in IDD healthcare, reducing the knowledge gap in this area can be difficult. Direct support professionals have DIRECT ACCESS to clinicians who are treating people with IDD each time they accompany a person to their office for care. Why not utilize this valuable access to provide information that can potentially lead to better healthcare for people with disabilities.
Subjects: The subjects include physicians, dentists, nurses, physical/occupational therapists and others who provide clinical care to people with IDD.
Interventions: A newly-developed tool provides direct support professionals, nurses and others who have direct clinician access with handouts that cover over 50 topics in IDD healthcare is used to deliver IDD health-specific information to clinicians. The handouts are designed to be delivered in sequence and to provide concise, important and necessary information and give insight to improve clinicians’ skillsets in the field.
Outcome: Utilizing an already available team who has access to clinicians, the knowledge base of healthcare providers in the area of IDD healthcare will be significantly improved resulting in better and more inclusive healthcare for people with IDD.
Access to Healthcare: A Focus Area of AUCD's National Center on Disability in Public Health
Presenter(s): Adriane Griffen, DrPH, MPH, MCHES
Abstract: Issues: Most public health, allied, and medical training programs do not include curriculum on disability and methods for including people with disabilities in core public health efforts; yet people with disabilities comprise 25% of the US population. The Association of University Centers on Disabilities (AUCD) created the National Center on Disability in Public Health to increase the capacity of health providers to include people with disabilities in their plans and efforts. There is a clear need for efforts to reduce health disparities among people with disabilities. This can be achieved by building a stronger health workforce skilled in ways to include people with disabilities in all health efforts.
Findings: AUCD's National Center on Disability in Public Health offers five practice and evidence-based strategies to support the process of inclusion of people with disabilities into public health efforts. These strategies include use of facilitative leadership, taking advantage of timing, systematic reflection, sufficient support and personal commitment as key supports to make inclusion happen. Success strategies and lessons learned from the implementation of the Diabetes Prevention Program with a community of practice of CDC's Disability and Health Grantees, as well as the action learning process employed by the Health is for Everyone Action Team focused on inclusion of disability in medical education, will be shared as tactics for achieving inclusion. Outcomes include an AMA Resolution to include DD in medical education and a national sign on letter to LCME to integrate DD into functions of medical schools. Findings from a new community of practice on how to implement developmental disability in medical education on a local and regional level will be shared.
Conclusions: Facilitated communities of practice have been successful in achieving disability inclusion in public health and health promotion efforts. Inclusion strategies may be applied to medical education with successful outcomes.
2:50 PM - Exhibitor showcase, Positive Exposure Art Exhibition & mid-afternoon Break
3:20 PM - BREAKOUT PRESENTATIONS
Relationships: Fundamental to the Provision of Quality Dementia Capable Care
Presenter(s): Nancy Jokinen, MSW, PhD
Abstract: Issue: A person-centered approach has long been championed in the field of intellectual disabilities (ID) as an underlying tenet in providing service supports. It is also promoted in general gerontological practice, particularly in supporting people affected by dementia. While certainly a person-centered approach is important, the relationships people have with family, friends, members of the wider community, staff and agencies providing service may be fundamental to achieving person-centered care that enhances quality of life. This presentation discusses the role of relationships within the context of providing dementia capable care.
Position: A person-centered approach needs to be balanced with a relationship centered approach. They are not mutually opposed concepts rather viewed as working in unison. The nature and quality of relationships between individuals are a major influence in providing person-centered care. We question if in fact quality person-centered care can occur in the absence of positive relations. Factors influencing various relationships are highlighted and discussed. The presentation also considers what constitutes ideal relationships and engages the audience in a dialogue on how we might work more consciously towards those ideal relations - with the individual, their families as well as staff and their agencies.
Conclusion: Clinical and personal struggles occur in providing dementia capable care to persons over the course of the disease. Taking a deliberate stance to incorporate a relationship centered approach balanced with a person-centered approach may pave the way to achieve quality dementia capable care.
Body Changes and Hygiene: Pimples, Puberty and Privacy
Lorna Patanella, CPNP, Linda L Matons, M.A.
*Nursing CE Available
Abstract: Our presentation will review common pubertal changes and the effect that occurs in teens with developmental and intellectual disabilities. Our goal is to provide an evidenced based review of both medical, educational and behavioral strategies and interventions to support both the individual and their care givers and professionals. For teens with intellectual disabilities development in these areas can be uneven and delayed making it a challenge for them to identify, communicate and manage their thoughts, feelings and behaviors. Often this can lead to anxiety, depression and behavioral regression making this difficult for the teen, parent and professionals caring for them.
Improving Direct Support Professional Practice Standards via Digital Badges
Presenter(s): Joseph M. Macbeth
Abstract: This session will reflect on changes to our system over time that are driven by funders, families and people with disabilities and how service organizations must implement continuous quality improvement practices. The presenters will explain how "quality is defined at the point of interaction" and therefore the knowledge, skills and values of direct support professionals are the key to providing quality supports. The session will provide information on two different models of certification which focus on these qualities: A more traditional portfolio-based certification process and a recently introduced process using electronic badges to document the development of each DSP.
Applying an information technology platform to improve person-centered, data driven outcomes and health care
Presenter(s): Dean Tucker, Michele Barringer
Abstract: Issues: Achieving higher quality health care for people with neuro-developmental disorders and intellectual disabilities (ND/ID) can be achieved through the application of health information technology (IT) that can link long-term services and supports with individuals, families, health care clinicians and community-based services.
Positions: Effective health care delivery must be integrated with community-based long-term services and supports to fully maximize the potential for favorable outcomes and improved individual wellness. System integration, essential for improving the value, quality, and efficacy of care and services delivered, cannot be achieved without the application of improved IT to enable easily accessible and shared data among providers and partners.
The authors conducted a case study of New York’s on-going efforts to transform the delivery of services and supports for individuals with ND/ID. The first phase of the transition to managed care for individuals with ND/ID is underway through Care Coordination Organization (CCO) federal health home authority. The authors specifically examined the health IT system used by the CCOs and will demonstrate how this innovative and adaptable solution can serve as the vehicle for generating improved quality, outcomes, compliance, and value.
The authors will describe key elements of this technology platform and present and discuss best practices identified during implementation, including significant lessons learned by stakeholders, including individuals, families, clinicians, payers, and state agencies responsible for carrying out this important initiative.
Conclusions: More easily and holistically capturing and sharing information that individuals and families, clinicians and community-based providers need to serve individuals with ND/ID is a fundamental and urgent call to action. Clinicians must grow more comfortable with adopting information technology as they serve individuals with ND/ID. This session is intended to bridge information gaps among clinicians and illustrate how use of technology can help individuals with ND/ID achieve improved health and outcomes.
3:45 PM - BREAKOUT PRESENTATIONS
Open NTG Conversation on Responses to RFI RE: 2nd National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers
Presenters: Matthew P. Janicki PhD & Seth M. Keller MD (National Task Group)
Abstract: The National Institute on Aging has issued a Request for Information (RFI) inviting comments and suggestions for the 2nd National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers, set to occur on March 24 & 25, 2020. The National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer’s Project Act (NAPA), is seeking input on topics of consideration from its stakeholders, including persons living with dementia, caregivers, members of the scientific community, academic institutions, the private sector, health professionals, professional societies, advocacy groups, patient communities, as well as other interested members of the public. This session invites conference attendees to raise and explore a range of issues related to dementia caregiving and services research and intellectual disability and solicits recommendations that could be passed along to the NIA
Silver Diamine Fluoride-A game changing treatment option for those who who need treatment now but are not ready in their behavior management program
Presenter(s): Brooke MO Fukuoka, DMD
Abstract: Clinical Aim- Silver Diamine fluoride is a valuable tool to have in your belt and can be a valuable option for all patients. It is especially useful in patients who have unique treatment needs or risks. The clinical aim of SDF is to safely treat the bacterial etiology of dental caries in a minimally invasive fashion which poses minimal physical, and/or mental/emotional threat to patients. SDF can be utilized as a step in a desensitization program or with a SMART restoration as a definitive treatment option. This lecture aims to discuss the basic science and history of SDF and SMART restorations as well as answer the common questions that practitioners have when beginning to offer this treatment.
Patients/Subjects- This is an excellent option for all patients, but is a game changer for patients who have a difficult time behaving appropriately in the dental chair, or who have medical complexities that make traditional treatment more risky. I have utilized this in my mobile clinic where I treat geriatric patients in long term care facilities and adults who have IDD in group homes. I have used it in the health center, and even on myself when my tooth fractured. I even have a very special surprise patient example for those who come to the lecture.
Intervention- I will discuss multiple protocols for the use of SDF and SMART restorations and when I use each method. I have detailed step-by step instructions and discuss multiple products and options.
Outcome- I will show my results and the results of studies that show this as an effective treatment option. I will discuss how it has changed my practice and dramatically improved access to minimally invasive dental care.
Disability Health in Medical Education: Development, implementation, and evaluation of a novel curriculum at Stanford University School of Medicine
Presenter(s): Richard Whitten Sapp, MS
Abstract: Background: In the United States, 61 million individuals (25% of population) have a disability. People with disabilities face significant healthcare disparities due to barriers to accessing care, negative attitudes of providers, and lack of education on disabilities for healthcare professionals. To address this disparity, we have developed, implemented, and evaluated a novel disability curriculum at Stanford School of Medicine.
Specific Aim: To evaluate the effect of novel educational interventions on medical students’ abilities to care for patients with disabilities.
Methods: Using Kern’s six-step approach to curriculum development, we developed two disability medicine educational interventions: 1) a mandatory 2-hour session for first-year students and 2) a 9-week elective course. Pre- and post-intervention surveys measured students attitudes (Disability Attitudes in Health Care), empathy (Jefferson Scale of Empathy), anxiety, knowledge, and skills regarding the care of individuals with disabilities.
Findings: Pre-intervention survey results in the first-year class (response rate = 70%) demonstrated that Stanford medical students had equivalent attitudes towards individuals with disabilities compared to medical students at other institutions. At baseline, higher empathy and lower anxiety scores correlated with more positive attitudes towards individuals with disabilities (r= 0.87, p
SOI Women’s Health Taskforce
Presenter(s): Steven Perlman, DDS, MScD, DHL (hon) and other invited presenters
4:10 PM - BREAKOUT PRESENTATIONS
The HealthE6 Lifestyle Model for Adults with Intellectual and Developmental Disability
Presenter(s): Alyce Sherwood MA CCC/SLP, Sara Budde
Abstract: Issues: Given the longer life expectancy of adults with intellectual and developmental disabilities (IDD), it is critical to develop lifestyle approaches to meet the unique challenges of this population. Models of care to support adults aging with IDD and other complex disorders are significantly limited. The Adult Program at The Center for Discovery features a continuum of residential opportunities for 168 adults, from 21 to senior citizens with complex disabilities including those with a variety of aging issues. The program is designed to accommodate varying levels of independence with a focus on personal progression and individual preferences.
Positions or Findings: The HealthE6 Lifestyle Model is the basis for adult program development at The Center for Discovery. The dimensions in the HealthE6 are designed as a foundational intervention to optimize health and functioning. The first four of the six primary components, each with their own essential elements, are the environment, energy regulation, eating and nutrition and emotional regulation. The two remaining elements, education and evidence based ensure the integrity of the model. A forty hour training course for direct care providers based on the model has also been developed. This model of care has been successfully implemented within the adult residential and day program for adults with IDD and complex disorders.
Conclusions: The HealthE6 Lifestyle Model can be utilized as a lifestyle approach for adults aging with IDD and complex disorders. The application of the program can also provide a template for a model of care for adults aging with IDD who are affected by Alzheimer's disease and related dementias. The Center for Discovery is uniquely positioned to sustain and replicate this model of care given its expanding research program in conjunction with the creation of its new Specialty Hospital.
Student/Resident Meeting
Using Telemedicine to Reduce Emergency Department Utilization for I/DD Patients
Presenter(s): Maulik Trivedi MD, Matthew Kaufman MD
*Nursing CE Available
Abstract: The technology for providing healthcare services through real-time two-way communication between the healthcare provider and patient (virtual visit) is spreading across the healthcare spectrum. The implementation of a simple telemedicine solution can provide many benefits not only to the patient but also to organizations that have adopted them.
Studies have shown that adding a telemedicine service specifically for the I/DD population reduces ER use, keeps that patient in place, avoids a disruption in routine, provides immediate access to a physician, drastically reduces costs and improves both staff and patient satisfaction. Typically a patient that requires medical attention is often sent to the ER for an evaluation by a physician. Transportation is arranged and staffing is added to accompany the patient. Emergency rooms across the country are already burdened with large patient loads and non-emergent patients are placed at the end of the queue. The patient endures hours of waiting in a foreign environment and is often times subject to unnecessary diagnostics. The trauma of this type of transfer can be avoided with the implementation of a telemedicine solution.
With a telemedicine solution in place, the caretaker simply contacts the telemedicine provider and within minutes they can evaluate the patient, visualize the patient, listen to heart and lung sounds, access the medical records, place orders and institute a plan while providing additional follow up as needed. Adding a telemedicine solution is a simple, cost-effective way to provide quality care to the I/DD population.
SOI Women’s Health Taskforce (continued)
Presenter(s): Steven Perlman, DDS, MScD, DHL (hon) and other invited presenters
4:35 PM - BREAKOUT PRESENTATIONS
Panel: Quality Measurements & Improvements (By Invitation Only)
Using Telehealth to Train Parents of Children with Autism Across the Globe
Presenter(s): Loukia Tsami, MA., BCBA, LBA
Abstract: Clinical Aim: Coaching parents of children with autism to implement functional communication training is a highly effective approach for treating problem behavior. Delivering this intervention via telehealth is effective and acceptable to parents in the United States. In this presentation, we will discuss the activities of the Telehealth ABA World Project as we extended his work to families in countries around the world.
Patients/Subjects: Families with children with autism residing in South America, Europe, Africa, Asia, and Middle East.
Intervention: Behavior analysts located in a university clinic in the United States provided assessment and treatment services for problem behavior weekly during 1-hour appointments with the families for 3 months to 10 months. Interpreters facilitated communication with non-English speaking families. Most families used smart phones to connect online with the behavior analysts.
Outcome: Treatment for all participants was effective and parents rated the assessment and treatment as acceptable. Furthermore, parents liked receiving services via telehealth. We will also present anecdotal data on informational presentations provided to parents, teachers and other professionals who work with children with neurodevelopmental disabilities.
SOI Special Smiles: Comparing 2015 World Games Athlete Oral Health Outcomes to Global Athlete Trends
Presenter(s): Lyubov Slashcheva, DDS, FABSCD
Abstract: Background: The Special Olympics International (SOI) hosts Healthy Athletes screening and treatment programs at most athletic events. Special Smiles is a subset of these services that focuses on oral health. World Games athletes are exposed to a higher frequency of athletic events and Healthy Athletes services than their peers, but the outcomes of World Games athletes have not been compared to those of their home-country peers.
Specific Aims: Determine whether there is a difference in oral health outcomes detected at Special Smiles screening between World Games athletes and their home-country peers.
Method: 2015 prevalence reports from 79 countries participating in 202 athletic events were compared with the 2015 World Games screening data to determine any differences in country-specific oral health outcomes.
Findings: There is a difference in oral health outcomes between World Games athletes and their home-country peers.
Discussion: The improvement seen in World Games athletes' oral health outcomes may be attributed to several factors besides frequency of exposure to Healthy Athletes screening and treatment programs. However, more frequent involvement with SOI events is correlated with better oral health outcomes and may indicate the benefit of repeated exposure to Healthy Athletes screening and treatment programs for all SOI athletes.
Project Accessible Oral Health (PAOH) - Alliance for Oral Health Brainstorming Session
Facilitators: Barbie Vartanian, Executive Director of the Viscardi Center’s new Project Accessible Oral Health initiative, Deborah Weisfuse, President of the Alliance for Oral Health Across Borders and Steven Perlman, DDS, MScD, DHL (hon)
5:00 PM - Exhibitor Showcase, Positive Exposure Art Exhibition & Break
6:30 PM - Posters & Awards Reception
Enjoy heavy hors d’oeuvres & cash bar while AADMD awards the leaders in IDD Healthcare. Event will end around 9:00 PM.
DAY 2
Saturday may 11 | The Hyatt Regency Rochester | Grand Ballroom
7:30 AM - Continental Breakfast
8:15 AM - Welcome & Introduction
8:30 AM - Policy Address
Congressman Joseph D. Morelle, US Representative of New York’s 25th Congressional District
9:00 AM - Keynote
Theodore A. Kastner, MD, MS
10:00 AM - Exhibitor Showcase & Mid-Morning Break
10:30 AM: Panel Introduction
Ryan Easterly, Executive Director of the WITH Foundation
10:35 AM - Panel: Healthcare Decision-Making
Moderator: Alicia Bazzano, MD, PhD | Panelists: Jeffrey Brosco, MD, PhD • Judy Mark, MS • Vivian Do, Student
Abstract: Decision making should involve collaboration among the patient, caregivers, and the physician/health care team in deciding on appropriate interventions that will promote the values of people with developmental disabilities. This process can be very tricky, especially when more complex, high stakes decisions are involved. On this panel, we will present challenging cases and hear perspectives of the clinician, ethicist, advocate, and family member, including students working on short films to educate on decision making. Audience participation is requested and encouraged.
11:45 AM - Keynote Introduction
Mary Davis, CEO, Special Olympics
12:00 pM -Lunch Keynote - Foundations of Developmental Medicine
Rick Rader, MD
12:45 PM - Exhibitor Showcase, Positive Exposure Art Exhibition & Noon Networking Break
1:10 PM - Workshops
Women’s Health Challenges
Presenter(s): Katrina Nicandri,MD,
Abstract: This session will look at specific challenges and solutions addressing health needs for women with Intellectual and Developmental Disabilities. Topics will include discussions of safe sex,considerations in contraceptive choice, pregnancy management, and peri-partumcare.
Collaborative Care in Oral Health
Presenter(s): Cynthia Peacock, MD, John Berens, MD & David Fray, DDS, MBA
Abstract: The artificial divisions between oral and physical health care create unnecessary barriers to optimal care provision for people with IDD. This session will focus on ways of overcoming these barriers. Topics including optimal pre-procedure screening and physical clearance, recognizing oral clues to systemic disease, and coordinating care under general anesthesia will be covered, along with strategies for optimizing inter-professional communication using electronic health records.
Inpatient & Acute Care Challenges
Presenter(s): Sarah H. Ailey PhD RN CNE PHNA-BC CDDN, Matthew Mason PhD, Doreen Bestolarides R.N. ADN, Carolyn DeJean Christiansen, Former Chair of Illinois Consumer/Family Advisory Council on Intellectual Disabilities, Carole Schwartz, Former Senior Policy Advisor for the Illinois Dept. on Aging, Alicia Thatcher, Chair AADMD Student/Resident Committee, 2019 MD Candidate University of Saskatchewan College of Medicine, Kasey Kotsiris, Occupational Therapy student, Rush University, Avery Schneider, Occupational Therapy Student, Rush University, Kim Bullock, Kim Bullock, MD, FAAFP, Medical Director, DD Health Initiative, Avra Selick MA Health Policy and Equity, PhD student University of Toronto
Abstract: When people with IDD arrive in emergency departments, they often find themselves at the beginning of an experience that can be as frustrating for their health care providers as for them. Physical accessibility and communication challenges, hospital rules, provider attitudes, and poor coordination with the IDD service system can all combine to result in unnecessary care, prolonged and expensive hospital stays, and general dissatisfaction. Participants will learn about effective and easily implemented programs developed by several medical centers that lead to better outcomes for patients, families, providers and the hospitals themselves.
Behavior Management in Healthcare Settings
Presenter(s): Kenneth Shamlian, PhD,
Abstract: This session will help participants learn basic strategies to help patients relax, communicate effectively, and get the most from health care encounters in the hospital, outpatient medical, dental, and eye care offices, and other environments. Participants will learn the A-B-C (Antecedent-Behavior-Consequence) approach to understanding behavior, and learn sensory, communication, and movement techniques to smooth health care interactions.
Healthcare Practices in the Assessment and Care of Aging Adults with IDD with Decline in Function Including Dementia
Moderator: Seth M. Keller, MD
Panelist: Toni Sexton, Ian M. Deutchki, MD, Tiffany Pulcino MD, PhD, Anton P. Porsteinsson, MD, Elmar Frangenberg, MD
2:50 PM - Exhibitor showcase, Positive Exposure Art Exhibition & Mid-Afternoon break
3:20 PM - BREAKOUT PRESENTATIONS
Dental Advances for Minimally Invasive Dentistry AND Preventive Dentistry
Presenter: Allen Wong, DDS, EdD, DABSCD
Abstract: Patients with special healthcare needs can be high to extreme caries and periodontal risks. Dentistry is one of the most overlooked and unmet needs in this population. Dental caries is supposedly a preventable disease, yet we have not mastered that concept.
Whether you are a dentist, physician or healthcare worker, you can learn to spot a person(s) who may benefit from prevention strategies.
Early recognition of patterns and use of prevention strategies can save time, money and pain.
Representation of Individuals with Developmental and Intellectual Disabilities in Mainstream, High-Impact Clinical Literature
Presenter(s): Priyanka Dharampuriya, MS
Abstract: ISSUES: When surveyed, > 90% of primary care providers and nurses report that they have insufficient skills to care for persons with developmental and intellectual disabilities (D/ID). While graduate and post graduate curricula are currently in development, there is minimal literature on which to base a technical framework for excellent care. Consensus-based guidelines have been developed in Canada, but few US practitioners are aware of these. High impact, or frequently cited, journals are an important avenue to disseminate and evaluate information about clinical practice.
POSITIONS/FINDINGS: A bibliometric analysis of literature content of major clinical journals in the US and UK was performed to assess the proportion of literature that discussed D/ID, compared with the proportion devoted to smaller clinical populations such as Acquired Immunodeficiency Syndrome (AIDS), drug abuse and breast cancer. All major journals published >60-300% fewer articles about D/ID than the other conditions throughout the time period 1946-2018. Publication rates of D/ID articles in major US clinical journals and the Lancet, as well as those in major neurology, psychiatry and psychology journals, appeared to peak in the early 1960s. Publication rates in US clinical journals did not appear to correlate with NIH funding changes and did not increase after the 2002 Surgeon General Report.
CONCLUSIONS: There is a dearth of information in the major clinical journals to guide the care of individuals with D/ID, and representation for this population in mainstream research is not increasing despite national initiatives to address healthcare disparities. Given the value of high impact journals in disseminating state-of-the-art clinical information to the general and specialty provider populations, it is important to develop projects and strategies that improve publication rates in these journals.
A Model of Shared Decision Making for People with Intellectual Disability
Presenter(s): Molly Bathje, PhD, OTR/L, Sarah Ailey, PhD, RN, CDDN, CNE, PHNA-BC, Teresa Moro, PhD, MSW, LSW
*Nursing CE Available
Abstract: Background: People with intellectual disability experience age related health conditions, chronic conditions, and significant comorbidities similar to the general population, but have poorer health outcomes. Although shared decision making has been shown to be effective in improving health outcomes, communication, and patient satisfaction, little is known about the use of shared decision making with people with intellectual disability. Implementing shared decision making with this population may help decrease health disparities, improve outcomes, and decrease costs, but current models do not address the unique needs of people with intellectual disability. This presentation will introduce a model of shared decision making that considers the needs of people with intellectual disability in the shared decision making process.
Specific Aims: The aims of this project include 1) Identify unique aspects of shared decision making for adults with intellectual disability, and 2) Create a model of shared decision making specific to adults with intellectual disability.
Methods: A grounded theory approach included gathering data during focus groups that included a) Adults with intellectual disability b) Family members of adults with intellectual disability c) Providers who serve adults with intellectual disability. Transcripts were analyzed using open, axial and selective coding, and an initial model of shared decision making was developed. Stakeholders provided feedback about the initial model that were incorporated into the model.
Findings Discussions: The model is the first to include the perspective of people with intellectual disability. Preliminary findings include components that are not included in existing models such as the importance of context and environment and the presence of a third decision maker, along with support for components of existing models such as awareness that a decision is being made. This new model may inform current practice and aid in development of tools and measurements that address the needs of people with intellectual disability.
Medfest - Designing a Way to Do Large Pre-Participation Exams for Special Olympics Athletes.... 3500 Athletes Later
Presenter(s): Jeffrey A Zlotnick MD (CAQ) FAAFP
3:45 PM - BREAKOUT PRESENTATIONS
An Approach to Reduce the Risk and Impact of Abuse among Individuals with I/DD
Presenter: Nora J. Baladerian, Ph.D.
Abstract: Clinical intervention presentation
Clinical Aim: The objective is to increase physician awareness and response to signs of abuse that may be the cause of changes in the child as reported by the parent/caregiver. The “Rule Out Abuse Physician Education Campaign” provides detailed information on abuse and signs of abuse as they emerge in children with I/DD, which may differ from the conventional “signs of abuse” identified for those children and adults without disabilities. The outcome is increased recognition of the obvious and subtle signs of abuse, responding by filing a suspected child abuse report, and documenting in the medical record the signs and symptoms that are identified. In addition to making the mandatory suspected abuse report, it is hoped that more appropriate medical recommendations be made for trauma-directed treatment, including appropriate medication, therapy, counseling or other trauma-reduction related recommendations/interventions.
Patients/Subjects: The patient is ANY patient brought in for regular check-up or parent/caregiver seeking the cause of myriad changes they have noted in their child. These are detailed in the program document online, including taking a history of when changes were initially noticed, the course of the changes (improving/worsening), in terms of mood, eating, sleeping patterns, resistance to any person, place, activity, illness, etc.
Intervention If abuse is suspected, relevant changes for the patient should be recommended including discontinuing participation at school or other out-of-home program or transportation immediately. Referral for an investigation should be made. Interim therapy should be provided, and additional in-home support for the caregivers
Outcome: An increase in quick recognition of subtle or prior unrecognized signs of abuse, to reduce trauma exposure for the patient and more quickly provide indicated treatment. Increase recognition of abuse skills. By both increasing recognition of signs of abuse as such, and documenting signs of abuse, improved patient care will result.
To Fight Childhood Obesity-Educate Undergraduate Students as Agents of Change
Presenter(s): Claire Watson, PhD
Abstract: Issues: The data for children with intellectual disabilities in New York State are overwhelming in that 35% are obese as evidenced through Special Olympics Healthy Athletes’ screenings as compared with children without ID (14.3%). Comorbidities associated with obesity include: Type 2 diabetes, cardiovascular disease, asthma, sleep apnea and social problems. The probability of developing these conditions compound the other health problems children with ID face. Living in our rural area, children with ID have a limited number of pediatricians to work with to address these concerns.
Positions or Findings: Through health promotion activities associated with SO Healthy Athletes, children have the opportunities to learn to choose healthier foods and to be more active. Our university students have worked with children with (and without) ID over the past 4 years through SO Unified basketball. Health assessments have not been performed during these events and therefore we have missed measures of BMI and other indicators of health: blood pressure, nutrition and physical activity behaviors. Protocols and recording tools provided by SO will be the missing link to connect health promotion measures and activities with local pediatricians. Our undergraduate students are currently being educated on how to work with individuals with ID; which helps to address this concern within health/medical education. By having students assess, educate and share their findings with the local pediatricians it is expected to not only bridge the gap in care but also reduce the incidence of obesity in this population.
Conclusions: Through our experiences, we have learned how to improve future health promotion events for children with ID. By providing children a health report card, these data can be shared with the pediatricians to further build the health care record for those with ID and will be an invaluable learning opportunity for our students as future health professionals.
SEPSIS ALERT: Implications and Impact on the Person with DD/IDD
Presenter(s): Doreen Bestolarides R.N. ADN,
*Nursing CE Available
Abstract: ISSUES Patients who present to the hospital with sepsis, have high mortality and morbidly rates. Early detection is crucial to survival. The DD/IDD population is at risk due to ineffective communication of illness, co-morbidities increasing susceptibility, pre-existing conditions and anatomical abnormalities (rotated thorax or other factors compromising lung expansion.
POSITION/FINDINGS The current Best Practice Guidelines include Screening, Early goal-directed therapy and sepsis order sets/hospital protocols. The sepsis “bundle” includes initial fluid therapy which may require up to 4-6 liters of fluid resuscitation for stabilization. Etiologies for this population are numerous. The pathophysiology of the body’s systemic response, including inflammation, coagulopathy and maldistribution of blood flow, complicate the potential outcome.
CONCLUSION Clinicians need to be aware of the potential infection sources, sepsis risk factors and importance of recognizing early signs, advocacy and management guidance, which will impact survival. Most importantly the effects of fluid over-resuscitation and precautions must be considered to prevent further complication.
Being Real Extraordinary Kool Youth (BR3KY): Promoting Adaptive Winter Sports and Unified Recreation in Syracuse Schools and Parks
Presenter(s): Nienke Dosa MD, MPH, Bobbierre Heard, Christina Kim, Peyton Sefick, Maddy Locastro, Stephanie Santiago
Abstract: Issues: Inner city high school students have limited access to adaptive Winter sport, recreation and wellness programs. This panel will describe a youth-led fundraising and awareness campaign to promote adaptive Winter sports and unified recreation in city parks during Winter break.
Positions or Findings: The BR3KY Scavenger hunt takes place during February break in Syracuse, New York. High school teams include students with and without disabilities. Students are recruited with a kick-off event during school hours (unified bowling field trip, physical education class presentation on wheelchair basketball). BR3KY Teams (5-15 students) are given team hats and a map for a scavenger hunt. The scavenger hunt takes place over five days during February break. Events are located in city parks and include Unified Drumming, Unified Yoga, Wheelchair basketball, Power Soccer, Adaptive Nordic Ski, Snowshoe, Sled Hockey and a workshop on how to adapt a sled or toboggan. Team members post photos on social media to document attendance. Teams are eligible to win up to $2000 for unified sports programs at their schools by completing the BR3KY scavenger hunt at all park locations. BR3KY Scavenger hunt is sponsored by the Fitness Inclusion Network, a grassroots organization that supports inclusion and wellness in Central New York.
Conclusions: The BR3KY Scavenger hunt creates awareness among inner city high school students about regional adaptive sports programs, many of which are located outside the city. All of the scavenger hunt events take place in city parks, thereby strengthening linkages between municipal park staff and people who have expertise in adaptive sports and unified recreation. BR3KY teams function as a booster club for the promotion of unified sports at their schools and for inclusion and justice in the community.
4:10 PM - BREAKOUT PRESENTATIONS
Methods for Improving Abuse Recognition and Provider Management
Presenter(s): Nora J. Baladerian, Ph.D., Susan L. Abend, M.D. FACP
Abstract: ISSUES: Persons with IDD report abuse at seven times the rate of the average population. Most data indicate this is likely an underestimate of the abuse rate in this population. Providers do not have a standard method to recognize signs of abuse, which often can be mistaken for other health issues in a population with communication disabilities. Often the child or advocate cannot communicate that abuse is the source of changed mood, health, behavior and other changes. Improving provider awareness of the signs of abuse will improve detection and intervention.
POSITIONS OR FINDING: The “Rule Out Abuse Physician Education Campaign” provides detailed information on abuse and signs of abuse as they emerge in persons with I/DD, which may differ from the conventional “signs of abuse” identified for those without disabilities. The goal is increased recognition of the obvious and subtle signs of abuse. New technologies help individuals communicate the signs and symptoms, and give provider guidance for proper detection, appropriate legal requirements, and timely trauma-directed treatment. This may include appropriate medication, therapy, counseling or other trauma-reduction related recommendations/interventions.
CONCLUSION: An increase in quick recognition of subtle or prior unrecognized signs of abuse are likely to reduce trauma exposure for the patient and more quickly provide indicated treatment. By improving provider recognition skills, as well as supplying patient-generated prompts at the point of care, appropriate and timely intervention can prevent the suffering of ongoing trauma.
Community Health Needs Assessment in Colorado: What is Culturally Competent Healthcare for People with Intellectual and Developmental Disabilities?
Presenter(s): Nichole Guerra, MS, DBA,
Abstract: Issue: Health disparities among people with IDD have been associated with barriers to accessing high quality and culturally competent healthcare, a lack of primary prevention efforts, and low socio-economic status (Anderson, Humphries, McDermott, Marks, Siserak, & Larson, 2013). A community needs assessment founded in community-based participatory research (CBPR) principles is the first step to effecting change in local communities (Eng et al., 2013) and was identified as the most appropriate strategy for improving healthcare in our local Colorado IDD community.
Position: This needs assessment focuses on primary, mental/behavioral, and dental healthcare, and briefly explores specialty care, emergency room services, and urgent care. The purpose of this research is to describe what culturally competent healthcare for people with IDD and developmental delays means across four distinct Colorado counties to understand the following: a) experiences of people with IDD and their caregivers when seeking and accessing healthcare, b) how experiences and healthcare services could improve for people with IDD, c) experiences of healthcare providers when delivering services to people with IDD, and d) how healthcare providers could be better supported to improve healthcare services for people with IDD. The presentation will include the final results of the four-county community needs assessment including social determinants of health and barriers to culturally competent healthcare specific to each county, and offers practical recommendations for healthcare practice and service providers across communities.
Conclusion: Historically, people with IDD have had little voice in how research is conducted on their behalf (Beail & Williams, 2014; Hall, 2013). Likewise, people with IDD have had less involvement in their own healthcare than the general population. Using a CBPR approach for this needs assessment facilitates a meaningfully translation of research to practice by engaging community stakeholders from the very beginning of the process.
Stories and Solutions: Films about People with ID and Healthcare
Presenter(s): Sarah Ailey, PhD, RN, CDDN, CNE, PHNA-BC, Molly Bathje, PhD, OTR/L
Abstract: Issues: Individuals with intellectual disabilities receive acute health care services at lower rates and with poorer outcomes than the non-disabled population. Barriers to equitable care include lack of access, communication challenges, and provider knowledge about intellectual disability. When hospitalized, individuals with intellectual disability have longer lengths of stay, indicating that hospitals are challenged to meet the complex needs of individuals with intellectual disability. Two organizations are attempting to address these issues through innovative programs.
Positions or Findings: Authors produced two films about health care and people with intellectual disability. The first film documents the experiences of adults with intellectual disabilities in the health care system, highlighting injustices and opportunities for improvement. The second film presents solutions to improving care at organizational and direct care levels that are happening at Rush University Medical Center and Georgetown University. Films feature individuals with intellectual disability recounting their experiences and providing advice for practitioners including the need for culture change in systems so that care is person-centered. They advise providers to respect all patients by talking directly to them and asking their opinion about treatment plans. Additionally, practical and low cost initiatives are described with the hope that these can be easily adopted by health care organizations, including: staff education, use of patient navigators/liaisons/transition specialists, nursing care plans, and outreach to community-based services. Including local advocate groups in an advisory role is stressed.
Conclusions: The films capture the experiences of people with intellectual disability, making use of personal narrative to bring attention to the inequities that exist in healthcare. The films can be used to inform health care providers and organizations about the inequality that exists and potential solutions. The videos can also be used to inform individuals with intellectual disability about their rights and potential solutions.
Cardiovascular Disease Risk Factors and Multimorbidity in Special Olympics Athletes
Presenter(s): Lindsay DuBois, Ph.D., Matt Holder, MD, MBA
*Nursing CE Available
Abstract: Background: Individuals with intellectual disability (ID) have as many chronic health conditions at age 20+ as individuals in the general population do at age 50+. Among other cardiovascular disease (CVD) risk factors, high blood pressure (BP) and obesity place individuals at increased risk of chronic health conditions and mortality.
Specific Aims: The present study examines the prevalence of CVD risk factors and multimorbidity amongst Special Olympics (SO) athletes worldwide.
Method: In 2015 and 2017, a total of 7,833 SO athletes from 167 nations worldwide attended a SO World Games event. With support from coaches and/or caregivers, SO athletes completed a medical history, including questions regarding CVD risk factors and a physical exam with a physician, including objective measures of height, weight, and BP.
Findings: Roughly 43% of SO athletes were observed to have a history or presence of at least one CVD risk factor and approximately 12% presented with 2 or more. Across all SO athletes, nearly 1/3 exhibited elevated BP readings during the physical. A one-way analysis of variance (ANOVA) indicated a significant difference (p
4:35 PM - BREAKOUT PRESENTATIONS
Understanding Sexual Health of People with IDD: Causes, Effects, and Strategies for Change
Presenter(s): Katie Hanley, LMSW
*Nursing CE Available
Abstract: Attendees will join us for an informative overview about the prevalence of abuse, why this population is vulnerable to abuse, how to promote sexual health and healthy relationships for people with IDD, and the role medical providers and clinicians play in providing compassionate, trauma-informed care.
Issues: People with intellectual and developmental disabilities (IDD) are sexually assaulted at a rate seven times higher than those without disabilities.
Positions or Findings: Many factors contribute to the IDD population’s vulnerability to abuse. Much like when someone who uses a wheelchair can’t get into a building without a ramp — the problem is the building, not the person. We as a community must work together to make healthy relationships more accessible to people with IDD.
Conclusions: If healthcare providers are aware of the prevalence of abuse and the factors contributing to vulnerability, they will be better prepared to effectively treat patients with IDD.
Meta-analysis of the Oral Findings of Children with/without Down Syndrome
Presenter(s): Tamer Marzouk, DDS, MFDS RCS Ed
Abstract: Background: Down syndrome (DS) is a genetic condition caused by a third copy of choromsome 21. Because dental anomalies and malocclusions maybe manifested in children both with and without DS, our aim is to conduct a systematic review and meta-analysis to compare those oral findings between both groups.
Methods: Indexed databases (PubMed, Cochrane, Web of Science, Embase, Science direct, and LILACS) were searched without language restriction up to and including January 1st 2019. Oral findings of children with and without DS were compared. The meta-analysis was performed using Cochrane RevMan 5 software. Quality assessment was performed to identify risk of bias.
Results: The literature search generated 617 records, and 41 full-text articles were reviewed. Seventeen studies comprising 17,400 individuals fulfilled our selection criteria and were included in the meta-analysis. The meta-analysis revealed a positive association between individuals with DS and class 3 malocclusion (OR = 14.2; 95%confidence interval [CI] = 9.4 to 21.5), open bite (OR = 8.8; 95%CI, 4.1 to 18.8), anterior crossbite (OR = 11.9; 95%CI, 2.3 to 61.2), posterior crossbite (OR = 7.5; 95%CI, 5.4 to 10.5), hypodontia (OR = 26.0; 95%CI, 11.3 to 59.7), peg-shaped lateral (OR = 7.9; 95%CI, 2.9 to 21.3), microdontia (OR = 4.0; 95%CI, 1.1 to 13.8), fissured tongue (OR = 8.5; 95%CI, 1.2 to 60.1), transposition (OR = 3.9; 95%CI, 0.7 to 21.8), and tooth wear (OR = 3.9; 95%CI, 2.3 to 6.9) compared with individuals without DS.
Conclusion: Our findings suggest a higher prevalence of dental anomalies and malocclusions in individuals with DS compared to individuals without DS.
Disability in Nursing Education: State of the Science
Presenter(s): Suzanne C Smeltzer
Abstract: Background: Nursing education has been hesitant if not resistant to respond to the need to address disability in baccalaureate and graduate level nursing curricula. Yet, little was known about nursing faculty's perceptions about the need to address this issue, making it difficult to identify strategies to move the profession forward in adding the topic to nursing curricula.
Specific Aims: Three related studies were conducted to examine the state of the science in nursing education related to teaching nursing students about disability.
Method: Two of the 3 studies were surveys of national samples of nursing faculty about their efforts to address disability and their beliefs about its relevance to undergraduate and graduate level nursing education. The third study was a review of 33 textbooks used in nursing education to determine the extent and quality of disability-related content included in those textbooks.
Findings: The national survey studies revealed that many faculty did not see the topic of disability as relevant to address in their curricula or thought they already did an adequate job of addressing it. The textbook study revealed that the topic is largely absent from textbooks widely used in nursing education, although most faculty reported using such textbooks to teach their students about disability.
Discussion: The findings clearly revealed very inadequate attention to the topic of disability in nursing education, highlighting the need to reach nursing faculty with rationale for addressing the issue, guidance on how to do so, and resources that would enable them to begin to address disability in their curricula. National efforts to support the effort were garnered to move the agenda forward based on the studies’ findings.
Access to Hospital-based Adult Special Needs Dental Care
Presenters: Alisha Desai, B.S. and Alexander Cruz Walma, B.S.
Abstract: Background: We've spoken with nearly one-hundred caregivers of adult special needs patients that are unable to find a dental provider; their child is treated at a Children's hospital until adulthood, after which, they are forced to find other accommodations without any guidance. This subpopulation of special needs (medically compromised, motor deficits, intellectually disabled) must be treated for their dental needs under general anesthesia. Based on our preliminary research, there are not many hospitals that accommodate such services. Moreover, it may be financially cumbersome for private practice dentists to maintain their hospital privileges.
Aims: To evaluate the access to dental care for adult special needs patients that must be treated in a hospital operating room, in Massachusetts.
Methods: An anonymous telephone survey will be used when contacting the 124 hospitals in Massachusetts. 1 out of 4 hypothetical special needs patients with varying conditions will be described to a hospital representative and then survey questions will help determine whether an adult patient with special needs considerations can be treated in their hospital OR. Each response will be categorized into generalized predetermined responses (written based on previously cited barriers to accessing special needs care). Following data collection, an extensive analysis will be conducted to answer the projects' purpose.
Discussion: From this study we will gain an understanding of access-to-care barriers for adult special needs patients treated in a hospital setting. We will compile a contact list of hospitals and providers in Massachusetts to distribute to patients and their caregivers. We hope to distribute our findings and expose the demand for adult special needs care that is missing in Massachusetts to encourage legislative reform. Lastly, we want to create a research framework that can be adapted by other researchers across the US to perform similar studies in their respective areas to encourage nationwide change.
5:00 PM - Exhibitor Showcase, Positive Exposure Art Exhibition & Break
5:00 pM - The Institute Discussion Group (Institute only)
6:00 pm - Anthem presents - The Institute Mentoring Dinner (By invitation only)
Students & Residents attending The Institute will join their AADMD mentors for a special dinner at nearby restaurant Ox and Stone.
Proud sponsor of the Institute Mentoring Dinner
DAY 3
Sunday MAY 12 | The Hyatt Regency Rochester & The Little Theatre
7:30 AM - Continental Breakfast with Exhibitors
8:00 AM - AADMD Business meeting
8:30 AM - Walk or Ride to The Little THeatre
9:15 AM - “Red Carpet” Film Screening at the little Theatre
Don’t miss the screening of POSITIVE EXPOSURE’S short films, Cerebral Palsy in FRAME, Autism in FRAME & The the World Premiere of Intellectual Disabilities in FRAME, filmed on location at Roberts Wesleyan College starring participants from the BELL (Bridge to Earning, Learning & Living) Program.
FRAME (FACES REDEFINING THE ART OF MEDICAL EDUCATION) is a web-based library of brief films and photographic galleries that change how medical information is presented to health care professionals in training, clinicians, families and communities. In each FRAME, individuals living with the featured condition and their families demonstrate the basic hallmark characteristics of the condition, placing humanity front row and center in medical education. POSITIVE EXPOSURE will be presenting 3 of their newest films, supported by a grant from the WITH Foundation and in collaboration with AADMD.
**The stars of the film will also be attending the screening and will be available for autographs.
10:00 AM - PaneL: Self-Advocates share their Voice
10:30 AM - WORKSHOP: Creating a US-Canadian IDD Healthcare Collaborative
Abstract: Health disparities and challenges occur despite differences in culture, language and in geography, nor do they stop at the border. This meeting will help bring together IDD leaders in health and supports from both the United States as well as in Canada. There are great opportunities in front of us to work together to help tackle common concerns and issues which exist in both countries.
11:30 AM - Adjourn
*Presentations, times and speakers are subject to change. Please check back often for up-to-date information.