HealthMatters Alert Newsletter Volume 2, Issue 1 (January/February 2017)

Project SEARCH at Cincinnati Children’s Awarded Grant from Ohio DD Council to Incorporate Health Matters Curriculum

Cincinnati, OH – Cincinnati Children’s has been awarded a $100,000 grant from the Ohio Developmental Disabilities Council to study Healthy Lifestyles for People with Disabilities. The goal of the project is to incorporate Health Matters Curriculum, a health education curriculum specifically designed for people with developmental disabilities, into Project SEARCH and create and test a clear set of guidelines for integration. The aim is to provide a general model for introducing health and fitness education into high school transition, a critical life stage for establishing patterns and habits for healthy and successful adult life.The proposed project leverages a partnership between Project SEARCH and UnitedHealthcare Community & State(UHC). Through this partnership, UHC purchased Health Matters Curriculum for distribution to all 430 Project SEARCH program sites.

Project SEARCH at Cincinnati Children’s Hospital Medical Center will be the lead organization, and will partner with the following organizations to carry out this project:

Continue Reading

Promoting sexuality across the life span for individuals with IDD

Ailey, SA, Marks, B, Crisp, C, Hahn, JE. (2003). Promoting sexuality across the life span for individuals with intellectual and developmental disabilities, Nurs Clin N Am 38, 229–252.

“No group in this country faces the sort of sexual and reproductive restrictions disabled people do: we are frequently prevented from marrying, bearing and/or rearing children, learning about sexuality, having sexual relationships and having access to sexual literature . . . [sexual] confusion arises as a consequence of society forcing us to internalize the notion that we are sexually inferior. This conspiracy, which society manufactures by way of discriminatory social policies which lead to our sexual subjugation, is keeping us in a state of sexual self-hate. I believe that this is done tacitly to keep us from doing the thing that poses an overwhelming threat to our disability-phobic society: taking their sons and daughters as sexual and life partners, bearing their grandchildren. If I sound full of rage to you, you’re reading me correctly, I am outraged.” —Barbara Faye Waxman, 1991, p. 85–6 [1]

Promoting sexuality across the life span for individuals with IDD – 2003

Flourishing From the Start: What Is It and How Can It Be Measured?

Many practical challenges remain in specifying such measures, and in gaining widespread agreement on their use. Nevertheless, culturally responsive, brief, clear, and reliable measures that could replace those that traditionally have required lengthy surveys, observational assessments, and specialized training would be welcome. Even so, nearly all constructs require that data be collected directly from children and families, rather than from administrative data systems, since these typically document only basic demographic and service use information. Moreover, the information in such systems generally focuses on problems, e.g., poverty, food insecurity, maltreatment, and developmental delays/disabilities. Accordingly, other approaches are needed to collect data on flourishing.

Findings from the research indicate that early investments can support positive child development and result in long-lasting benefits. However, in order to successfully implement policies and programs that help children flourish, there needs to be a way to define, measure, and monitor what is meant by “flourishing.” A new research brief from Child Trends, Flourishing From the Start: What Is It and How Can It Be Measured? (March 2017), discusses the importance of establishing a conceptual model for defining and achieving flourishing as well as feasible measurement methods for assessing flourishing in a variety of settings and for different purposes. The authors recommend a set of critical constructs that, if measured, would provide a more balanced view of children that highlights child well-being or flourishing as well as promotive and protective factors.

Flourishing From The Start

NTG Caregivers Newsletter on ID and Dementia Practices (Volume 1, Issue 1)

Welcome to the first issue of the NTG Caregiver News (Volume 1 Issue 1) March 2017. This publication has grown out of the NTG’s Family Caregiver Online Support Group for those who are caring for, or have cared for, loved ones with Alzheimer’s and intellectual disabilities.

Once each month, we open the airwaves to share what is happening in our lives and with our loved ones. To keep the group effective for support to the families, we limit participation to those who have loved ones with dementia or are direct caregivers. As we identify topics we would like more information about, we invite specific professionals to lead our conversation. Upcoming issues of this newsletter will include some of the highlights of those conversations. In addition, watch for links to helpful resources.

This issue includes some general information on intellectual and developmental disabilities and dementias, as well as an introduction to the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices. We encourage you to visit the NTG website for more information on their activities and to become a member.

We have learned through interactions with families in the online support group that there are lots of questions, many uncertainties, multiple feelings of loss, limited resources in local communities, and great recognition that love is most important for all of us.

Please do circulate NTG Caregiver News (Volume 1 Issue 1) March 2017 among your colleagues and to any family caregiver groups with which you have contact.

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Karen Watchman, PhD1, Matthew P. Janicki, PhD2, Michael Splaine, MA3, Frode K. Larsen4, Tiziano Gomiero, PhD5 and Ronald Lucchino, PhD6

1 University of Stirling, Scotland, UK
2 University of Illinois at Chicago, USA
3 Splaine Consulting, Columbia, Maryland USA
4 Norwegian National Advisory Unit on Ageing and Health, Oslo, Norway
5 ANFFAS Trentino Onlus, Trento, Italy
6 Utica College, Sarasota, Florida USA



The WHO has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia in Scotland reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that their carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes and greater advocacy is required from national organisations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia

McCallion, P.1, Hogan, M.2, Santos, F H.3, McCarron, M.4, Service, K.5, Stemp, S.6, Keller, S.7, Fortea, J.8, Bishop, K.9, Watchman, K.,10 Janicki, M.P.11 and the Working Group of the International Summit on Intellectual Disability and Dementia


Adults with intellectual disability are affected by dementia at equivalent and elevated rates; many surviving into advanced age. End-of-life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. The International Summit on Intellectual Disability and Dementia’s report on end-of-life care in advanced dementia provides a synthesis statement which encompasses defining the state of advanced dementia, proposing use of palliative care services (including hospice), and recommending special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end-of-life care and supports, and involvement of adults with intellectual disability early on in their advance care planning.

This consensus statement was developed as an output from the 2016 International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland, 13-14 October 2016, and hosted by the University of Stirling and University of the West of Scotland, funded by the RS MacDonald Trust, the Scottish Government, and Alzheimer Scotland. Collaborating sponsors included the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States and the Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD), University of Illinois at Chicago. The Summit was composed of individuals and representatives of many international and national organizations with a stake in issues related to adults with intellectual disability affected by dementia. The contents of this statement were partially developed under a grant from the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT5020-03-00. However, those contents do not necessarily represent the policy of the US Department of Health and Human Services, nor the endorsement by the US federal government. The opinions expressed represent those of the Summit participants and of the NTG.

1University at Albany, New York USA
2Family Advocate, Eliot, Maine USA
3 University of Minho, Braga, Portugal
4 Trinity College Dublin, Dublin, Ireland
5 Nurse Practitioner Consultant, Northampton, Massachusetts USA
6Reena Foundation, Toronto, Ontario Canada
7 American Academy of Developmental Medicine and Dentistry, Lumberton, New Jersey USA
8 Catalan Foundation for Down Syndrome, Barcelona, Spain
9Geriatrics Consultant, Lee Center, New York USA
10University of Stirling, Scotland
11University of Illinois at Chicago, Illinois USA

Address for Corresponding Author:
Philip McCallion, Ph.D.
Center for Excellence in Aging Services
RI 383
University at Albany
Albany NY 12222 USA
Email: [email protected]
Telephone: +1 518 442-5347

Accepted for publication in the Journal of Applied Research in Intellectual Disability (1/31/17)

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature

Janicki, M.P.1, McCallion. P.2, Splaine, M.3, Santos, F.H.4, Keller, S.M.5, Watchman, K.6. (October 2017). Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature. American Association on Intellectual and Developmental Disabilities (AAIDD).

1 University of Illinois at Chicago, USA

2 University at Albany, New York USA

3 Splaine Consulting, Columbia, Maryland USA

4 São Paulo State University, Bauru, Brazil

5 American Academy of Developmental Medicine and Dentistry, Lumberton, New Jersey USA

6 University of Stirling, Scotland

Correspondence Address: Matthew P. Janicki University of Illinois at Chicago Department of Disability and Human Development (MC626) 1640 W. Roosevelt Road Chicago, IL 60608 USA Email: [email protected]


A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion; an increasingly crucial issue given the increased global attention dementia is receiving in that field. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing familiarity with dementia-related diagnostic, condition-specific, and social care terms (as identified in the working group’s report), (b) creating a guidance document on accurately defining and presenting information about individuals or groups referenced, and (c) that in reports on neuropathologies or cognitive decline or impairment, definitions are used and data include subjects’ ages, sex, level of ID, residential situation, basis for dementia diagnosis, presence of Down syndrome (or other risk conditions), years from diagnosis, and if available, scores on objective measures of changing function.

HealthMatters for People with Intellectual and Developmental Disabilities: Building Communities of Practice for Health

HealthMatters for People with Intellectual and Developmental Disabilities: Building Communities of Practice for Health

A Research to Policy Brief from AUCD and UIC’s RRTCDD (November 14, 2016)


The emergence of accessible health promotion initiatives for people with intellectual and developmental disabilities (IDD) over the past 20 years demonstrates great promise for improving their health status. However, people with IDD continue to experience numerous age-related health issues and often lack control over environments and practices that impact their health. Just as in the general U.S. population, a great challenge remains to lower obesity levels, increase physical activity, and improve diets among people with IDD.  While research evidence for successful population specific health promotion programs and training, such as the 12-Week HealthMatters Program has been documented, an urgent need exists for widespread translation of evidence-based programs into practice and policy implementation. The next step is to develop and test models to support changes in state and community based organizations’ (CBOs) policies and fiscal budgets that embed and sustain evidence-based health promotion programs in the communities where people with IDD live, work, and play. Determining successful scale-up processes of “what works” is critical in being able to achieve the goal of improved lives for the greatest number of people.

Jasmina Sisirak and Beth Marks University of Illinois at Chicago
Lindsey Mullis and Kathy Sheppard-Jones University of Kentucky
LynnAnn Tew University of Alaska Anchorage
Kristin Krok and Dina Donohue-Chase NorthPointe Resources
George S. Gotto and Christy Miller University of Missouri Kansas City
Amanda George eitas – Developmental Disability Services of Jackson County
Jessica Minor and Christine Grosso Association of University Centers on Disabilities

AAIDD Research Brief: Health and Wellness for People with IDD

Sisirak, J. & Marks, B. (2015). AAIDD Research Brief: Health and Wellness for People with IDD. AAIDD National Goals Conference

People with intellectual and developmental disabilities (IDD) have begun to participate in their own health promotion and disease prevention activities and are learning how to advocate for their own health. Over the next decade, a coordinated approach to research, practice, and education, along with a policy agenda for health and wellness activities, can result in improved health and wellness outcomes for people with IDD.

Health and Wellness Strand: Recommendations From National Goals Conference 2015

Sisirak, J. & Marks, B. (2015). Health and Wellness Strand: Recommendations From National Goals Conference 2015. Inclusion, 3(4), 242-249,

Although a variety of health and wellness initiatives have emerged in the past decade, people with intellectual and developmental disabilities (IDD), their caregivers, and advocates still are facing remarkable challenges in staying healthy and receiving appropriate health services. The National Goals 2015 Conference provided a unique platform and an opportunity to summarize the current state of knowledge, identify national goals in research, practice, and policy, and set the stage for the future directions in health and wellness in IDD field. This article presents an outline to improve the health of people with IDD. The goals identify major health and wellness issues and solutions proposed by a group of disability researchers, policy specialists, advocates, health care providers, and service providers with the aim to set forth an agenda for national, state, and local action to improve the health of people with IDD and include them fully in appropriate health systems.