RRTCDD Training Opportunities
- Dissemination through national providers, professional, and consumer collaborations;
- Development of user friendly products in various formats;
- Use of train-the-trainer models to promote local ownership of effective practices;
- Targeted promotion of systemic changes that maintain programmatic and policy changes; and,
- Use of web-based technologies to provide global access to knowledge and training products.
Training for Individuals with I/DD and Families
Taking Charge of Your Supports
Taking Charge of Your Supports is a curriculum to teach people with I/DD and their families in consumer directed programs how to direct their own supports. Training consists of 2 half day sessions and an individualized planning session that help adults with I/DD and families to identify their needs and wants, develop person- centered goals and identify barriers, learn about advocacy and how to work toward meeting goals, and develop the skills to find, choose, and keep personal assistants. The training package includes a manual and an instructor’s guide so CBO staff can provide the training to consumers and their families.
Please contact Dr. Tamar Heller for more information.
A naturalistic examination of the evolution of three specialty group homes for dementia-related care of adults with intellectual disabilities
- Collect longitudinal data on three newly developed dementia care group homes.
- Determine whether level of care home specialization will occur.
Wichita Study Findings: Changes in Dementia Care Group Homes as Residents Age
Agencies responsible for care of older adults with intellectual disabilities (ID) are developing small dementia-care group homes that can serve as community care alternatives. Such small group homes are designed to be ‘dementia-capable’ and provide for extended older age care. As dementia affects adults differentially, both with respect to symptoms and to the pathway of decline, it was hypothesized that given differential timelines and patterns of decline such dementia care homes will eventually be defined by the nature of their residents in terms of residual functional skills and personal care needs.
Given stage-specific changes that eventually occur, a longitudinal study was undertaken of three such dementia-care community-based group homes (which were opened simultaneously) to observe progression of decline and alterations in care practices. One aim was to see if home specialization would occur. It was found that dementia care was affected by differences in complexity of impairments and co-incident conditions found in adults with ID and dementia. Specifically, there were significant differences in the number of comorbidities, staff time devoted to specialized care, and frequency of occurrence of dementia-associated behaviors between dementia-care group home residents and controls. Also, residents with Down syndrome were younger and had significantly less comorbidities. With respect to specialization, some trending was evident of differentiation among the homes over the two years (with evident decline patterns), but it was not statistically significant.
Results point to potential specialization over time if agency assigns new residents by level of care needs.
National Task Group on Dementia Care and Intellectual Disabilities (NTG)
The RRTC and AAMD will conduct a series of local and regional trainings on dementia care as part of the NTG. They will be organized by local organizations. In the last few years these events have been organized locally by the state DD Councils, UCEDDs, and service providers.
What are we?
The ‘NTG’ is a coalition of interested persons and organizations working toward ensuring that the needs and interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and related dementia – as well as their families and friends – are taken into account as part of the National Plan to Address Alzheimer’s Disease.
The ‘NTG’ is a coalition of interested persons and organizations working toward ensuring that the needs and interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and related dementia – as well as their families and friends – are taken into account as part of the National Plan to Address Alzheimer’s Disease. The NTG is working to underpin the National Plan to Address Alzheimer’s Disease, and is represented by members at the quarterly meetings of the federal Advisory Council on Alzheimer’s Research, Care, and Services.
The NTG is composed of families, association and organization representatives, practitioners, academics, and others who contribute time and effort to its activities. The NTG is supported by the with the Rehabilitation Research and Training Center on Aging with Developmental Disabilities-Lifespan Health and Function at the University of Illinois at Chicago, along with the American Academy of Developmental Medicine and Dentistry, the American Association on Intellectual and Developmental Disabilities, along with the Center on Excellence in Aging at the University at Albany.
An invitation to affiliate with the NTG is open. Anyone interested in contributing to this effort can register as a contributing member or NTG friend at http://aadmd.org/civicrm/profile/create?gid=10&reset=1.
For more information or questions, please contact either Seth Keller, M.D. (American Academy of Developmental Medicine and Dentistry) at firstname.lastname@example.org or Matthew Janicki, Ph.D. (University of Illinois at Chicago) at email@example.com, the co-chairs of the NTG.
Matthew P. Janicki, Ph.D.
National Task Group on Intellectual Disabilities and Dementia Practices
The National Task Group on Intellectual Disabilities and Dementia Practices organized a national task group along with the American Association on Developmental Medicine and Dentistry that produced a seminal report and recommendations for federal, state, and local agencies and organizations as well as into the National Alzheimer’s Project Act. The project uses a web-based interaction, national meeting and broad based dissemination for training and affecting public policy. A summative report “My Thinker’s Not Working” was created.(11) Presentations have been made in webinars, a series of workshops, and conferences. Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia has been published in the Journal of Policy and Practice in Intellectual Disabilities. It also has been widely disseminated through RRTC website, NTG, and through its national network.
The NTG’s Educational Activities
The NTG is engaging in an awareness campaign that involves a series of national and regional workshops and Webinar series, and distribution of public education materials. The NTG has organized workshops on the topic of dementia and intellectual disabilities (in 2012, workshops were held in Phoenix, Charlotte, Los Angeles, New Brunswick [NJ], and Chicago). In 2013 workshops have been held or are planned for Ontario, Canada, Bangor (ME), Richmond (VA), Baltimore (MD), Prince George (BC) and several other locations. NTG members are also involved in special presentations at the annual meetings of various national associations and organizations. The 2013 workshop schedule is available at http://aadmd.org/ntg/schedule.
The NTG also maintains a program of educational Webinars. For the Webinar schedule go to http://aadmd.org/ntg/webinars
The NTG also has a promotional brochure and set of FAQs that promote awareness of dementia and of the activities of the NTG. NTG members have helped create informational materials that are being distributed both other organizations, such as the National Down Syndrome Society.
Products & Publications of the NTG
The NTG has produced a number of products which may be helpful. To obtain a copy of any of the following products, via download, go to www.aadmd.org/ntg.
- Janicki, M., & Keller, S. (2012) ‘My Thinker’s Not Working:’ A National Strategy for Enabling Adults with Intellectual Disabilities Affected By Dementia to Remain In Their Community and Receive Quality Supports.
- ‘My Thinker’s Not Working’: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports (PDF)
- ‘My Thinker’s Not Working’: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports – Executive Summary (PDF)
- Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (Booklet version)
- Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (Journal version)
- NTG-Early Detection Screen for Dementia – English (PDF)
- NTG-Early Detection Screen for Dementia – German (PDF)
- NTG-Early Detection Screen for Dementia – Italian (PDF)
- The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities (PDF) – Available soon
- Frequently Asked Questions (PDF)
- NTG Brochure (PDF)
- Jokinen, J. Janicki,M.P., Keller, S.M., McCallion, P., Force, L.T. and the National Task Group on Intellectual Disabilities and Dementia Practices. (2013). Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia
. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1-28.
- Moran J.A., Rafii, M.S., Keller, S.M., Singh, B.K., & Janicki, M.P. (in press). The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities. Mayo Clinic Proceedings.
- L. Esralew, M.P. Janicki, M. DiSipio, N. Jokinen, S.M. Keller and Members of the National Task Group Section on Early Detection and Screening. (2013). National Task Group Early Detection Screen for Dementia (NTG-EDSD) Manual. NADD Bulletin, 16(3), 47-54.
Training for Health Professionals and Supports
HealthMatters Community Academic Partnership
Through the HealthMatters Community Academic Partnership (HMCAP), RRTC staff (Dr. Marks and Dr. Sisirak) and HealthMatters CAP Partners (Dina Donohue-Chase and Kristin Krok at Northpointe Resources) will continue working with Healthmatters community affiliates.
HealthMatters Train the Trainer Workshop: Becoming a Certified Instructor
An evidence-based 6-hour training that provides structured information on how to organize and start a tailored physical activity and health education program for people with I/DD in CBOs. The training can enhance staff’s skills, knowledge, and abilities to work with persons who have disabilities to become more physically active, make healthy food choices, and incorporate healthy lifestyle into daily living. We have conducted trainings in 20 states certifying over 2000 Certified Instructors in CBOs that provide services for people with I/DD. Over 7000 known individuals with I/DD have participated in a 12-week HealthMatters Program. The HealthMatters curriculum is also being used internationally in countries including Australia, Ireland, U.K., Canada, Netherlands, Kenya, and Mauritius.
Additional trainings through HMCAP include the following:
Implementing Health Promotion: Is Your Organization Ready?
A training focused on reviewing the organizational processes of implementing a sustainable health promotion programs within CBOs and the value of Direct Support Professionals as health advocates. The training covers supports and barriers in developing and starting tailored physical activity and health education programs for adults with I/DD in CBOs.
HealthMatters: It’s Everyone’s Job
A training that aims to build health and wellness capacity within CBOs to create a culture supporting health promotion. Goals are to give staff the skills and strategies they need to: 1) understand the importance of health and wellness for people with I/DD; 2) incorporate health and wellness initiatives for their clients in their work activities; and 3) identify local and CBO specific activities that promote health for people with I/DD.
The Peer to Peer: HealthMessages Program
An evidence-based workshop for people with I/DD to become Healthy Lifestyle Coaches (HLCs) and deliver health messages to their peers. HLCs are leaders who can give their peers new health information and can show them how to take better care of their bodies. The training includes a 75 minute webinar and HealthMessages Program kit to teach up to 10 peers.
HealthMatters 4kids: Diabetes Prevention Training
HealthMatters 4kids: Diabetes Prevention Training was developed by NorthPointe Resources in collaboration with the RRTC and funded through the Illinois Department of Public Health (IDPH) to provide diabetes prevention. This workshop introduces health promotion and advocacy to children and adolescents with I/DD through diabetes education and resources for parents, teachers, and health professionals who help to pave the road for a healthy future.
The Signs & Symptoms Program: Continuity of Care for Emerging Health Concerns
This course instructs Direct Support Professionals to observe early signs and symptoms of illness among people with I/DD and accurately communicate these observations to nursing personnel in CBOs. It aims to establish continuity of health care services so that nursing staff and administrators can develop targeted health care and health promotion services.
Please visit HealthMattersProgram.org for more information.
AADMD will conduct physicians training via webinar series on transitions from pediatric to adult health care and on patient-physician communication with CMEs provided through the American Academy of Family Physicians. It will also be available to physician assistants, nurse practitioners, and other health professionals.
Health Promotion Training for CBOs
Community-Based Health Promotion Training
The HealthMatters Community Academic Partnership (HealthMatters CAP) team has trained over 2000 instructors in 20 states and 5 countries have been certified by the HMCAP as Certified Instructors to start a health promotion program for people with I/DD to manage their health by being more physically active and making healthier food choices to reduce the onset of chronic health conditions (e.g., diabetes, hypertension, cardiovascular disease).
We have developed partnerships with 23 CBOs across the U.S. and Ireland through the HealthMatters Program and conduct trainings, workshops, presentations, and technical assistance through the following 8 HealthMatters Programs:
- HealthMessages Program: Becoming a Healthy Lifestyle Coach
- HealthMatters Program: Train-the-Trainer Certified Instructor Workshop
- HealthMatters: Getting the Memo
- HealthMatters: Developing Community Academic Partnerships for Service Learning, Research, and Training to Improve Health Outcomes for Individuals with Intellectual/Developmental Disabilities
- Signs & Symptoms Program: Early Recognition of Emerging Health Problems
- Health Matters for People with Developmental Disabilities: Promoting Health Advocacy
- What About Staff: Impact of HealthMatters Program for Employees in Day/Residential CBOs
- HealthMatters 4kids: Today Counts for Diabetes Prevention
We continue to develop partnerships with CBOs, UCEDDs, and state DD Councils to build capacity and develop systematic methods for increasing awareness for health promotion statewide using a peer to peer health messages program.
Training for the LHIDS project (R2) will present findings on
- racial and ethnic health disparities among people with I/DD,
- changes in health and health behaviors across time,
- relationship between modifiable health behaviors and their impact on health and function, and
- recommendations for health promotion programs to Wisconsin Managed Care Organization professionals.
Visit LHIDS for more information.
POWERS for ID
Telehealth Weight Management System. Training for the POWERS project (R3) will present findings on associated causes of obesity in adults with I/DD and knowledge on how to manage obesity in adults with I/DD. Also, trainings will review strategies ￼Section D: Design of Training Activities for adopting the e-health weight management system in CBOs to manage obesity among people with I/DD receiving day and residential services.
Contact Dr. Jim Rimmer for more information.
Leadership Education in Neurodevelopmental Disabilities (LEND)
The Leadership Education in Neurodevelopmental and related Disabilities (LEND) Interdisciplinary Training Program is a 1-year intensive training program that incorporates both didactic and experiential learning in clinical and community-based settings. This program prepares future leaders who will serve children with neurodevelopmental and related disabilities (with a focus on autism) and their families through coordinated, culturally competent, and family-centered care, in addition to public health services and policy systems change.
The LEND Program provides long-term, graduate level interdisciplinary training designed to improve the health and wellbeing of individuals with disabilities. This goal is accomplished by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields, and by ensuring high levels of interdisciplinary clinical competence. LEND focuses training on the policy, advocacy, research and clinical skills necessary to affect positive change on all levels, from the individual to systems.
There are currently 43 LENDs in 37 states. Collectively, they form a national network that shares information and resources to maximize their impact. They work together to address national issues of importance to children with special health care needs and their families, exchange best practices and develop shared products. They also come together to address regionally specific issues and concerns.
While each LEND program has its own focus and expertise, they all provide interdisciplinary training, have faculty and trainees from a wide range of disciplines, and include parents or family members as paid program participants. They also share the following objectives:
- Advancing the knowledge and skills of all child health professionals to improve health care delivery systems for children with developmental disabilities;
- Providing high-quality interdisciplinary education that emphasizes the integration of services from state and local agencies and organizations, private providers, and communities;
- Providing health professionals with skills that foster community-based partnerships; and
- Promoting innovative practices to enhance cultural competency, family-centered care, and interdisciplinary partnerships.
The LENDs grew from the 1950s efforts of the Children’s Bureau (now the Maternal and Child Health Bureau) to identify children with disabilities as a Title V program priority. The LENDs are currently funded under the 2006 Combating Autism Act and are administered by the Health Resources and Service’s Administration’s (HRSA) Maternal and Child Health Bureau (MCHB).
The Illinois LEND was founded in 2008. It is one of the first LEND programs to have self-advocacy as one of its disciplines.
Disability Studies Program
UIC’s exemplary Disability Studies program, which currently has 74 Masters and Ph.D. students, provides an ongoing stream of students interested in disability research. Our department also provides research and training experience to 30 students from 13 different disciplines from UIC, University of Chicago, Southern Illinois and Rush Universities, and three schools of psychology.