S. Diane Moore, BSN, RN, CDDN and Kathleen A. Brown BA, RN, CDDN

Providing quality nursing support to persons with I/DD requires the nurse to identify the health needs of the individual and to develop an effective intervention plan. As in all healthcare settings, nursing care for persons with I/DD must be provided in accordance with the nursing process and established standards of nursing care. This session will focus on common health issues faced by persons with I/DD and explore methods to determine health needs. The session will include a review of the nursing process and discuss ways to assure that nursing care is provided in accordance with the Standards of I/DD Nursing Practice. Also discussed will be nursing concerns surrounding the use of unlicensed direct support personnel and barriers to positive health outcomes, with a focus on identifying effective strategies to address these challenges.

CE available

Rita Pobanz, MSN, RN

Epilepsy challenges both individuals and healthcare providers. The epilepsy prevalence rate in persons with I/DD is approximately 25%, and it is frequently more severe than in the general population. Identifying seizure activity, assessing treatment effectiveness, and providing emotional and physical supports are essential nursing services. At the end of this presentation, you will be able to: describe major seizure and epilepsy classifications, along with co-morbid conditions associated in persons with intellectual and developmental disabilities; identify diagnostic and treatment strategies; and discuss the impact of epilepsy on quality of life.

CE available

Nanette Wrobel, BS, RPH

This session will focus on the medications commonly used to treat the disease states most often found in individuals with I/DD. Medications for the following clinical syndromes will be discussed: epilepsy, neurobehavioral issues including aggression, self-injurious behavior, anxiety, depression, psychosis, sleep disorders and dementia, GERD, osteoporosis, urinary continence, constipation, arthritis, osteoporosis and spasticity. Indications, drug interactions, common side effects and dosages will be discussed for each of these disease states so that the nurse may be better prepared to address common usages and concerns for these medications as they are used for the clients we serve.

CE available

Terry Broda, RN, BScN, NP-PHC, CDDN

This session will provide an overview of 10 different genetic syndromes: Down syndrome, Fragile X, Williams, Angelman, Prader-Willi, Smith Magenis, Cornelia de Lange, Rett, Tuberous Sclerosis, and Velocardiofacial (22q-) syndrome. Included will be the screening measures necessary to identify comorbid health problems associated with these genetic syndromes. Also included in this session will be helpful strategies for addressing these comorbidities, as well as key areas of knowledge related to syndromes and conditions that would be expected of a certified developmental disabilities nurse.

CE available

S. Diane Moore, RN, CDDN, President, DDNA Board of Directors and Kathleen A. Brown, BA, RN, CDDN, President-Elect, DDNA Board of Directors

Medications for individuals with I/DD are often managed by unlicensed direct support personnel without standardized criteria or training and with limited nursing involvement or oversight. This approach to medication management places nurses and agencies at risk for practicing outside the established standards of care and increases liability for both. This session will identify concerns with the existing approach to medication management for persons with I/DD and explore strategies to address the issues surrounding this critical area of support. During the session, DDNA will present newly-developed criteria and parameters for helping to assure safety in medication administration for the person with I/DD and for minimizing practice liability through the use of standardized medication management protocols.

CE available

S. Diane Moore, RN, CDDN and Kathleen A. Brown, BA, RN, CDDN

Safe, effective medication management is a fundamental need for persons with I/DD and agencies and nursing staff must comply with program regulations and nursing practice standards while addressing this essential need. Using a standardized approach to medication management helps assure compliance with related standards and helps limit liability for the nurse and the agency, while facilitating safe medication administration for the individual. This session will identify procedures needed to assure safety and move to establishing a standardized approach to medication management for this vulnerable population. During the session, the presenter(s) will outline appropriate assessment processes and effective training strategies for the person served, and will establish core components of DSP education and training.

CE available

Michael R. Willis, RN, MBA, JD, LLM

When a medication error occurs, the nurse needs to be prudent in documenting the event, clearly communicating with his/her employer, and in giving concise and accurate statements if called to testify at deposition or trial. This session will address key questions: Who is ultimately liable? When will an injured party sue the nurse individually, apart from the facility/employer/agency? When medication administration is delegated to direct support personnel, is the nurse "off the hook" because the personnel completed approved or statutorily recommended training? Must the nurse know with certainty and personally verify that personnel are competent, have appropriate experience, and can carry out the applicable protocols? Who is responsible for personnel selection, retention and training? When should a nurse document concern about delegation perceived to be unsafe, or even refuse to participate? Should the nurse consider purchasing malpractice insurance? What should the nurse do if she/he is disciplined or even sued for a delegated medication error?

CE available

Sharon Oxx, RN, CDDN

TBD

CE available

Nancy Thaler, MS, HOS, Executive Director of the National Association of State Directors of Developmental Disabilities Services

Most people with I/DD live in the community with their families, some live independently in shared living arrangements, and some live in staffed group homes. Quality generally is defined in terms of life outcomes, with the goal of people with I/DD having the same routines, rhythms and experiences as their peers without disabilities. A large percentage of people with I/DD have medical conditions; many take medications necessary to treat their conditions. The administration of medications requires competencies and oversight, as well sensitivity to people's life styles and freedom of movement. Different states have approached the delegation of the administration of medications in different ways, but all states must attend to issues of safety and maintaining good health. The delegation of medication administration has led to a different and generally expanded role for nurses to include consumer and staff training, oversight and health monitoring.

CE available

Michael Wilkins, MD

We are honored and privileged this year to have Dr. Michael Wilkins as our Keynote Speaker. He was the "whistleblower" at Willowbrook. His actions in bringing public attention to the abysmal conditions endured by "inmates" at Willowbrook have forever changed the care of people who have intellectual and developmental disabilities.

People with I/DD often become victims of oppression. They and their caregivers and family members sometimes find themselves having to speak and act against oppression. During the days of the large institution, the oppression was visible, but not recognized by most caregivers and other employees, and even by many family members. There was a group at Willowbrook--the world's largest institution for people with I/DD - who in 1972 began first to challenge the dangerous conditions within the facility, then to question whether large institutions are appropriate. The group included family members, professional and nonprofessional staff members. This presentation describes the origin of the "Willowbrook Wars" in the conscience of the members of the group and a brief description of what developed.

CE available

Gloria Krahn, PhD, MPH

People with I/DD experience a cascade of disparities in health and health care that have largely gone unrecognized. This session will consider the questions: What's the disability? What's health disparity? What's disabilism? And who's monitoring the health of people with I/DD as a population? Research indicates that people with I/DD, as a group, are more likely to have complex health conditions, less likely to have their health needs recognized, have less access to quality health care and fewer health promotion opportunities. While the health of the general population is routinely monitored through national surveys, the health of Americans with ID is neither systematically monitored nor reported. A framework for addressing these health disparities can be found in two Surgeons General reports (2002, 2005) and a recent Institute of Medicine (IOM) report (2007).

CE available

Steven M. Eidelman, MBA, MSW, George Jesien, PhD, and Nancy Thaler, MS, HOS

Organizations that address issues of importance to persons with I/DD each have their own purpose and perspective, but all share the goal of supporting people with disabilities so they can live and fully participate in all aspects of community life. Recognizing that the power for positive change comes from cooperative and collaborative relationships, this session brings together top leaders in the field of I/DD to share their organizations' perspectives on health care disparity issues that affect persons with I/DD and how these issues relate to policy making on a national level. What are the challenges in effecting meaningful change to ensure that persons with I/DD receive optimal health screening and preventive care, that their daily medications and treatments are administered correctly, and that their health problems across the lifespan are promptly identified and treated by nurses, physicians, and dentists who are knowledgeable in the care of persons with I/DD? What opportunities do we have, as specialists in the nursing, medical, and dental care of persons with I/DD, to support and contribute to positive change? At the end of the day, there will be time for audience dialogue with the speakers, so bring your questions and concerns.

CE available

Steven M. Eidelman, MBA, MSW, George Jesien, PhD, and Nancy Thaler, MS, HOS

Organizations that address issues of importance to persons with I/DD each have their own purpose and perspective, but all share the goal of supporting people with disabilities so they can live and fully participate in all aspects of community life. Recognizing that the power for positive change comes from cooperative and collaborative relationships, this session brings together top leaders in the field of I/DD to share their organizations' perspectives on health care disparity issues that affect persons with I/DD and how these issues relate to policy making on a national level. What are the challenges in effecting meaningful change to ensure that persons with I/DD receive optimal health screening and preventive care, that their daily medications and treatments are administered correctly, and that their health problems across the lifespan are promptly identified and treated by nurses, physicians, and dentists who are knowledgeable in the care of persons with I/DD? What opportunities do we have, as specialists in the nursing, medical, and dental care of persons with I/DD, to support and contribute to positive change? At the end of the day, there will be time for audience dialogue with the speakers, so bring your questions and concerns.

CE available

Robert Gettings, MPA

As this conference brochure is being put together, President Obama and Congress are in the final stages of formulating legislation to restructure the American health care system. This legislation, which, at the time of this printing, was expected to be enacted into law before the end of 2009, will mandate sweeping changes in the financing and delivery of health care services in the United States. This session will explain the global aims of the national health reform measure and highlight the various ways in which the legislation is likely to alter the delivery of acute health and long-term services to individuals with I/DD. This presenter also will discuss the implications of the legislation for health and allied health professionals and offer insights into the Obama Administration's plans to institute reforms.

CE available

Rick Rader, MD and Rubens Pamies, MD

TBD

CE available

Steven M. Eidelman, MBA, MSW, Robert Gettings, MPA, George Jesien, PhD, Seth Keller, MD, Gloria Krahn, PhD, MPH and S. Diane Moore, BSN, RN, CDDN

This session will bring together today's speakers for continued discussion of disparities, national and state policies related to the health care of persons with I/DD, and what we can do - as the expert nurses, physicians, and dentists - to promote awareness of what is and is not working in the healthcare system. Also discussed will be how we, as the experts in I/DD healthcare, can help to assure that all individuals with I/DD across the lifespan have access to qualified health professionals, receive preventive care, are assessed routinely and PRN for health problems, and receive appropriate care and follow-up when health problems arise. The Town Hall will be a moderated question and answer session. We encourage you to submit your questions for this panel at the DDNA Board of Director's table.

CE available

Hank Chambers, MD

Transitioning individuals who have cerebral palsy and other disabilities from pediatric to adult health care services is a challenge in most areas of the country. Dr Chambers is a pediatric orthopedic surgeon who also has a Lifespan Clinic that serves more than 2200 patients with all types of disabilities. He is also the father of a 27-year-old son with total body involvement cerebral palsy. His presentation will provide an update on new developments in the etiology, definition, classification and treatment of children and adults with cerebral palsy. He also will share his research and personal experiences with transition and adult care issues.

CE available

Ginny Focht-New, PhD, PMH-CNS, BC, CDDN

Adults with intellectual/developmental disabilities (I/DD) have both common and complex health conditions and an increased risk for morbidity and mortality. With the focus on deinstitutionalization, the need for health services, resources, and particularly education has shifted to community settings. A qualitative, descriptive study was conducted interviewing twenty-three nurses who provide health teaching to this adult population. In this session the audience will learn about a variety of health teaching experiences, as well as about effective teaching activities for conveying health information to adults with varying impacts of I/DD. The findings of the study focus on the transformative processes of both the teachers and learners in health teaching.

CE available

Sherrill Hayter, RN, CDDN

A community hospice agency, the Department of Developmental Disabilities Northeast Region Area Office Nurses, and a community pharmacy developed a collaboration to address end-of-life needs for a large group of underserved individuals with I/DD who were dying without the benefits of hospice care. Hospice care in the group home setting needs to be available and set up so that the individual, family, support staff, hospice staff, DDS and provider agency are all comfortable with the choice and process. This workshop will identify the population served, their living situations, and explain the collaborative process. Also discussed will be obstacles encountered, their resolution, forms developed, trainings provided for DDS and hospice staff, and how MAP regulations were amended for hospice care in Massachusetts. Success stories will be shared, as well as updates on progress over the past 6 years.

CE available

Denise Schuffman, RN, RD, LD

Choking Prevention and Altered Consistency Diets Training provides an understanding of choking risks and prevention strategies for persons with I/DD, who have a higher incidence of dysphagia leading to negative health consequences. Deaths and negative outcomes from choking can be reduced with proper screening, education and implementation of a plan. Caregivers with proper training are more likely to start the screening process and report early changes in an individual before a life-changing event occurs. This overview of physical and behavioral factors that lead to an increased risk of choking includes strategies for reducing choking risk and implementation of altered consistency diets. Persons with I/DD benefit from a more pleasurable meal time experience with reduced risks. This presentation will also discuss how to successfully develop and implement a feeding protocol.

CE available

Leonard S. Fischer, MD

Colorectal cancer is common in adults. It can be treated and cured if detected early, but has a high mortality rate if diagnosed after overt symptoms have developed. Because of this, screening of adults by colonoscopy is recommended for early detection of cancer and precancerous colon lesions. How do these screening recommendations apply to I/DD adults? Are the potential benefits and risks of screening similar to the general population, or are there problems unique to persons with I/DD. What about colonoscopy efficacy and safety in general for person with I/DD? Using actual case histories and a retrospective review of results, this presentation will attempt to answer these questions, and provide recommendations for colorectal cancer screening and surveillance, as well as general colonoscopy and preparation recommendations for persons with I/DD.

CE available

Jack Dillenberg, DDS, MPH

Integration of medicine and dentistry go beyond looking at pathologies in the oral cavity as markers for systemic illness. Oral health care professionals have shown to be a resource for the identification of individuals at risk for many chronic diseases, such as cardiovascular disease and diabetes, by screening for high blood pressure, cholesterol, and plasma glucose levels. This integration is especially critical in populations with special needs. Deinstitutionalization and the movement towards community-based services have left many individuals with I/DD without a medical home. At the same time, pediatricians have started to integrate oral health exams and provide fluoride varnish to children who have yet to find a dental home. This may provide a model for further integration of care for persons with I/DD. This presentation will address the advantages and disadvantages associated with bringing the medical home and dental home closer in order to provide patient-centered, family-oriented, comprehensive and coordinated preventive health care.

CE available

Jarrett Barnhill, MD, DFAPA, FAACAP

People with autism and related disorders are often medicated for behavioral issues. This session will review the basic components of functional behavioral analysis, the neurobiological aspects of autism, and key features in the psychiatric diagnosis of co-morbid conditions. It will also review the neurochemistry of autism and the biological underpinnings of challenging behaviors, as well as their relationship with psychiatric disorders. Current evidence-based and newer pharmacological strategies for treatment will be discussed, as well as their side effects and how these influence treatment monitors.

CE available

Shirley McMillan RN, BScN, MN, CDDN and Tom Cheetham, MD, CCFP

Individuals with I/DD are often perceived by health professionals as being complicated and their health disparities have been well documented. One of the main reasons is lack of education and clinical exposure for health care providers. Primary Care Consensus Guidelines for Adults with DD were developed by an interdisciplinary group of clinicians and researchers from the Canada, the U.S, Australia, and the U.K. to provide a framework for providers to help them provide optimal health care.

This session will present an overview of the Guidelines and a systematic approach to follow them in offering health care services to adults with I/DD. Attendees will be among the first to review tools that were developed specifically to accompany the Guidelines to help providers in working through complicated cases, for example, in crisis situations with complex medical, behavioral and psychiatric issues.

CE available

Rita Pobanz, RN, MSN

Nurses are responsible for nursing outcomes. It does not matter whether nurses perform the tasks themselves or delegate the implementation to an unlicensed support person. Nurses still retain responsibility for the result of nursing actions. Delegation of nursing tasks to other than licensed nurses is a reality in today's healthcare environment. Consequently, it is essential that licensed nurses be able to articulate those actions that are essential to nursing outcomes. At the end of this presentation, participants will be able to differentiate between nursing outcomes, nursing delegation, and the responsibilities of other members of the healthcare team.

CE available

James Powell, MD

Individuals with I/DD often present with various type of "urinary accidents." It becomes difficult to determine whether the origin is medical, behavioral or a combination of both. This talk will explore the common causes of incontinence for both men and women and explain ways that the behavioral and medical teams can work together to improve the quality of life for the individuals we serve.

CE available

Allen Wong, DDS, FACD, DABSCD and Karen A. Raposa, RDH, MBA

Individuals with I/DD are more vulnerable to caries and periodontal disease, and their oral health is an often overlooked and underestimated part of overall health. It is important to assess for caries and help institute prevention protocols. CAMBRA (CAries Management By Risk Assessment), a new model for understanding and controlling risk factors for dental disease, will be presented. Also presented will be practical solutions with tips and techniques for proper applications of home care devices and therapeutics, including over-the-counter products. Behavioral supports that may reduce resistance by the individual with I/DD to these applications will also be discussed.

CE available

Doreen Canton, BS, RN, CDDN and Lucien Canton, CEM

The complexity of modern society has given rise to increasing vulnerability to natural disasters. The impact of these disasters falls hardest on those who are the least able to care for themselves and the most likely to be marginalized by responders. This presentation will provide information on what really occurs in disasters, what we can expect from the government response, and methods for helping to prepare the I/DD community to cope with these emergencies.

CE available

Jennifer R. Wilhelmy RN, DCN, CNP

The skin is the largest organ in the body and the first line of defense for the body. Individuals with I/DD are at higher risk for skin breakdown related to pressure and incontinence. This presentation will discuss elements of good skin care, pressure ulcer prevention and treatment, and incontinence dermatitis prevention and treatment. Specific diagnoses, such as cerebral palsy and spina bifida, and skin care will be addressed. Case studies with photographs will be presented.

CE available

J. Carolyn Graff, PhD, RN

Environmental health issues affecting persons with developmental disabilities may be misunderstood, misinterpreted, and mislabeled as related to a person's disability. Exposure to toxic chemicals in everyday products, food, drinking water, and the air can create or increase risk for health problems. The links between the environment, health, and behavior of persons with developmental disabilities will be discussed along with the critical role of nurses in preventing and reducing exposure.

CE available

H. Barry Waldman, DDS, MPH, PhD

"Front line" nurses, physicians, dentists and other health providers of service for individuals with I/DD amass years of "how-to-do" knowledge that can facilitate the efforts by their colleagues. Writing and publishing about these insights and experiences is not beyond the capacity of most front-line providers. This session will help attendees to identify the key steps in the process of organizing and preparing a manuscript for submission and eventual acceptance and publication in a range of journals.

CE available

Allen Wong, DDS, FACD, DABSCD, Gerri Collins-Bride, RN, MS, ANP, Lisa Itaya, DDS, FAGD, and Seth Keller, MD

The growing problem of access to care is nationwide. Having experts at hand to give opinions and provide comprehensive medical and dental evaluations for persons with I/DD can be challenging. Technology has come a long way in many aspects. This program will present some creative and efficient uses of telemedicine and teledentistry. A brief overview of how the programs were established, what is needed, some of the concerns, and learning lessons of the programs will be discussed.

CE available

Janean Fossum, BSN, RN, CDDN

This session will describe ways to recognize signs of abuse in individuals with I/DD. It will also review the statistics of abuse, the wounds of abuse commonly seen, the proper documentation to use, and the behaviors seen in the victim and perpetrators.

CE available

Seth Keller, MD, Phillip May, MD, and Robin May, RN, MSN, ANP-C, CDDN

Adults with I/DD often have complex medical issues. The healthcare team spends a lot of time and resources trying to reduce and improve the various health problems. Tests, clinical evaluations, medications, and documentation are used in abundance, but does this make our patients better? There are no clear standardizations for many of the frequently encountered health difficulties in this population. This lecture will review the problems in healthcare outcome assessments. The speakers will demonstrate how outcomes can be measured by using various objective clinical assessment tools. These approaches will demonstrate how staff can be educated to provide a high level of care so adults with I/DD will have a better quality of life.

CE available

Celia Moreno, MD, Jean McMaster, MFT, and Doreen Canton, BS, RN, CDDN

People with I/DD often have difficulty in accessing mental health services in the community, including psychiatrists and therapists. We frequently see undiagnosed or misdiagnosed conditions that are left untreated or treated with heavily sedating medications. This leads to the inappropriate use of police and Psychiatric Emergency Services to provide crisis management when situations get out of control. This presentation includes an overview of a community coming together to overcome the barriers and work collaboratively to ensure comprehensive services for the individual to diagnose and treat mental health needs. Audience members will be able to identify systems barriers and how to work around institutional mindsets to create a more open and collaborative model integrating mental health, medical and dental services.

CE available

Nanette Wroebel, BS, RPH

The diagnosis and treatment of depression in individuals with I/DD can be complex. This session will review the etiology, incidence, and signs and symptoms of depression related to this population. It will also provide an in-depth discussion of the various classes of antidepressant medications available, which will better equip healthcare professionals to understand medication options. Because individuals with I/DD commonly take many other types of medication, this session will review possible drug interactions that may occur. Also discussed will be how best to monitor for antidepressant medication effectiveness and for any potential side effects of these pharmacological agents.

CE available

Rick Rader, MD

Individuals with I/DD may need to be physically stabilized for various medical or dental procedures because of disruptive behavior, or to prevent injury to themselves or others. This presentation will address the use of "medical stabilization interventions," which require clear indications, safe application, trained staff, reassessment guidelines, and use only after the consideration of alternative methods.

CE available

Adadot Hayes MD

Healthcare for people with disabilities has often been hampered by social constraints including inclusion, dignity, access, respect and knowledge. These issues have affected not only issues of health, but also quality of life and well-being. These obstacles are often overcome by the people working in this field who have made commitments to this population. This talk outlines some of the problems and solutions in this area while honoring a doctor who struggled and succeeded with these issues, Dr. Steve Zelenski.

Stephanie Wincik, RN, CDDN

The hallmark feature of Lesch-Nyhan Syndrome (LNS) is an overwhelming, involuntary compulsion to self-injure. Some individuals may have only mild intellectual disability and are fully aware of their situation, but are powerless to control their own self-damaging behavior. This session will review the genetic basis and pathophysiology of LNS and identify its unique behavioral manifestations. Treatment options will be discussed, including practical information on effective behavior management strategies. A short documentary produced by Bill Melius, a 35-year-old survivor of LNS, will be shown. As we follow Bill through a typical day, we will develop a greater understanding of what it means to live with this syndrome.

Wes Matthias, RPh, CGP, BCPP

The purpose of this presentation is to present the current treatment algorithms for hypertension, diabetes and pre-diabetes, and hyperlipidemia in a humorous and memorable fashion -- to help I/DD nurses to not only help those for whom they care, but to also apply these guidelines to their own lives, as well. Be prepared to laugh!!

CE available

DDNA is pleased to invite our current chapter leaders to be our guests at a special recognition and networking luncheon. As a chapter leader, you have taken on the challenge of connecting with and providing support to I/DD nurses in your chapter area. You want to find ways to contribute to your chapter's success, which can include developing and maintaining an informative website, locating and recruiting new members, providing quality education programs for I/DD nurses and the community, encouraging existing members to serve in leadership roles, and nurturing the spirit of providing mutual support. When you arm yourself with new ideas and support, finding ways to grow and vitalize your chapter can be identified and developed. During this luncheon, chapter leaders will have an opportunity to network with one another, share strategies to address common challenges, and identify solutions that will help to strengthen and improve their chapters. DDNA's Board of Directors will share their experiences with their chapters and other information of importance to chapter leaders. Each chapter can send up to two representatives, each of whom must be an elected officer of the chapter.

CE available