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

Abstract

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.

Authors:
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: pmccallion@albany.edu
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: mjanicki@uic.edu

ABSTRACT

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)

Abstract

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, http://aaiddjournals.org/doi/abs/10.1352/2326-6988-3.4.242.

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.

 

Technical Standards for Nursing Education Programs in the 21st Century.

Ailey, S. H. & Marks, B. (2016). Technical Standards for Nursing Education Programs in the 21st Century. Rehabilitation Nursing. doi: 10.1002/rnj.278

Abstract

Purpose  The Institute of Medicine (IOM, 2000; 2002) exposed serious safety problems in the health system and called for total qualitative system change. The IOM (2011; 2015) also calls for improving the education of nurses to provide leadership for a redesigned health system. Intertwined with improving education is the need to recruit and retain diverse highly qualified students. Disability is part of diversity inclusion, but current technical standards (nonacademic requirements) for admission to many nursing programs are a barrier to the entry of persons with disabilities. Rehabilitation nurse leaders are in a unique position to improve disability diversity in nursing. The purpose of this paper is to discuss the importance of disability diversity in nursing.

Design  The history of existing technical standards used in many nursing programs is reviewed along with examples.

Methods  Based on the concept that disability inclusion is a part of diversity inclusion, we propose a new model of technical standards for nursing education.

Conclusion and Clinical Relevance  Rehabilitation nurse leaders can lead in eliminating barriers to persons with disabilities entering nursing.

NPs Promoting Physical Activity: People with Intellectual and Developmental Disabilities.

Marks, B. & Sisirak, J. (2017). NPs Promoting Physical Activity: People with Intellectual and Developmental Disabilities. The Journal for Nurse Practitioners, 13(1), e1–e5. DOI: 10.1016/j.nurpra.2016.10.023

Abstract

People with intellectual and developmental disabilities (IDD) are not residing in large congregate care centers due to legislative, attitudinal, and treatment changes, and they are living longer than their peers of previous generations. With the absence of inclusive and accessible health promotion, people with IDD are experiencing a constellation of health issues related to negative determinants of health. This article aims to raise awareness among nurse practitioners that people with IDD need support from their health care providers to be physical active. A secondary aim is to discuss barriers and resources for people with IDD to be more physically active.

 

 

 

The impact of support services teams: Community-based behavioral health support interventions

Owen, R., Bowers, A., Heller, T., Hsieh, K. and Gould, R. (2016).  The impact of support services teams: Community-based behavioral health support interventions. Journal of Policy and Practice in Intellectual Disabilities. doi:10.1111/jppi.12186.

Abstract

Background: Community capacity to serve people with intellectual/developmental disabilities (IDD) and behavioral health challenges is often limited. Using interdisciplinary teams to work with stakeholders, including people with IDD, their families, providers, and agencies may help increase this capacity. One example in the United States is the Support Services Teams (SST) program of a midwestern state. Specific Aims: This research aimed to identify changes before to after referral to SST in the proportion of people who used and the total number of admissions/visits, and prescriptions; and the Medicaid liability associated with emergency room (ER), hospital, and pharmacy services for SST participants. Second, the research described the SST participants and services provided. Method: The authors used Wilcoxon and McNemar’s tests to compare hospital, ER, and pharmacy outcome measures for 109 people who were referred to SST and had 12 months of data before and after referral. Separate analyses were also conducted for the 88 people who remained in the community after referral and the 21 people who had short institutional stays. Findings: For the full population of SST participants, the proportion of people with a hospital admission, the total number of hospital admissions, and Medicaid liability for hospitalizations significantly decreased from before to after referral to SST. Medicaid liability for prescriptions significantly decreased for people with an institutional stay. Changes in the other outcomes trended downwards, although not significantly. Discussion: This study shows that the use of interdisciplinary teams for people with IDD and behavioral health challenges can be effective in reducing the use of services. These teams can help to build community capacity to work with these individuals and avoid more costly ER and hospital services and reduce the number of medications prescribed.

Siblings of disabled peoples’ attitudes toward prenatal genetic testing and disability: A mixed methods approach

Carli Friedman, Aleksa L Owen
Siblings of disabled peoples’ attitudes toward prenatal genetic testing and disability: A mixed methods approach.
Disability Studies Quarterly, 36(3).
Abstract
We used the phenomenon of prenatal genetic testing to learn more about how siblings of disabled people understand prenatal genetic testing and social meanings of disability. By interweaving data on siblings’ conscious and unconscious disability attitudes and prenatal testing with siblings’ explanations of their views of prenatal testing we explored siblings’ unique relationships with disability, a particular set of perspectives on prenatal genetic testing, and examined how siblings’ decision-making processes reveal their attitudes about disability more generally. In doing so we found siblings have both personal and broad stakes regarding their experiences with disability that impact their views.
DOI: http://dx.doi.org/10.18061/dsq.v36i3.5051

Un/paid labor: Medicaid Home and Community Based Services waiver that pay family as personal care providers

Carli Friedman and Mary C. Rizzolo (2016)
Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers.
Intellectual and Developmental Disabilities: August 2016, Vol. 54, No. 4, pp. 233-244.
doi: http://dx.doi.org/10.1352/1934-9556-54.4.233
Correspondence concerning this article should be addressed to Carli Friedman, Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Road, M/C 626 Chicago, IL, 60608 USA (e-mail: cfried6@uic.edu).
This paper was sponsored in part by a grant from the Administration on Intellectual and Developmental Disabilities (90DN0296).
Abstract
The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.

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