National Goals Conference: Self-Determination and Self-Advocacy Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Self-Determination and Self-Advocacy Research, Practice, and Policy

In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Self-Determination and Self-Advocacy Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals Conference: Long Term Supports and Services Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Long Term Supports and Services Research, Practice, and Policy

In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Long Term Supports and Services Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals Conference: Health and Wellness Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Health and Wellness Research, Practice, and Policy

In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Health and Wellness Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals Conference: Families Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Family Research, Practice, and Policy

In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Families Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals Conference: Aging Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Aging Research, Practice, and Policy

In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Aging Issue Brief, AAIDD Inclusion Journal Article, and Video

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Racial and Ethnic Disparities among Adults with Intellectual and Developmental Disabilities

Sandra Magaña, Susan Parish, Miguel A. Morales, Henan Li and Glenn T. Fujiura

Overview
This
study investigated the extent of racial and ethnic disparities in the health of adults with intellectual and developmental disabilities. Analyzing data from the 2002-2011 Medical Expenditure Panel Survey and the 2000-2010 National Health Interview Survey, we found that Black and Latino adults with intellectual and developmental disabilities have markedly worse health in contrast to their white peers with intellectual and developmental disabilities.
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Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study

Elisabeth L. Zeilinger, Claudia Gärtner, Matthew P. Janicki, Lucille Esralew & Germain Weber

Journal of Intellectual & Developmental Disabilities
Published online: 23 Nov 2015
http://dx.doi.org/10.3109/13668250.2015.1113238

ABSTRACT
Background

In this study, we evaluated the feasibility of using the German-language version of a recently developed screening tool for dementia for persons with intellectual disability (ID): the National Task Group – Early Detection Screen for Dementia (NTG-EDSD).

Method
Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing.

Results
All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group. Conclusions The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy of this instrument for application of early detection of dementia in persons with ID.

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Ageing-related experiences of adults with learning disability resident in rural areas: one Australian perspective

Stuart Wark, Miranda Canon-Vanry, Peta Ryan, Rafat Hussain, Marie Knox, Meaghan Edwards, Marie Parmenter, Trevor Parmenter, Matthew Janicki, andChez Leggatt-Cook

British Journal of Learning Disabilities: Special Issue: Aging and People with Learning Disabilities
Volume 43, Issue 4, Pages 293–301
December 2015

Summary
  • This paper is about older people with learning disabilities who live in the country in Australia.
  • We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder.
  • These people said that they were well supported by the local community and particularly their doctors.
  • However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like.

Abstract

Background:
Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia.

Materials and Methods:
This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas.

Results: It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation.

Conclusion: An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals' needs.

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Life course health and healthcare utilization among adults with spina bifida

Liptak GS, Robinson LM, Davidson PW, Dziorny A, Lavalley R, Flaherty MG, Dosa NP

Developmental Medicine & Child Neurology 2015 Nov 2

Abstract
AIM:
To evaluate the prevalence of organ system disorders and describe healthcare utilization among adults with spina bifida at a regional clinic.

METHOD: This study was a structured chart review using the Rochester Health Status Survey-IV. 65 males, 57 females aged 16 to 59 years were seen at the Spina Bifida Center of Central New York between January 2007 and December 2008 (annual hospitalization rate was 15 out of 100).

RESULTS: Hospitalizations and acute outpatient visits were associated with having shunted hydrocephalus, whereas visits to the emergency department were associated with having a decubitus ulcer. Logistic regression models revealed that older adults made proportionately fewer visits to primary care providers than younger adults (odds ratio 0.919; p=0.02). Yet for every 1-year increase in age, the odds of being hospitalized increased by 5% (odds ratio 1.051; p=0.03).

INTERPRETATION: Adults with spina bifida have multiple organ-system disorders. They have greater difficulty accessing services, and utilize emergency and inpatient healthcare at higher rates than the general population. In the future, adults with spina bifida will require access to more medical care and preventive services if they are to have optimal health, well-being, and functioning.

doi: 10.1111/dmcn.12952
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Caregiving and Family Support Interventions: Crossing Networks of Aging and Developmental Disabilities

Heller, T., Gibbons, H.M., & Fisher, D. (2015). Caregiving and Family Support Interventions: Crossing Networks of Aging and Developmental Disabilities. Intellectual and Developmental Disabilities, 53(5), 329–345.

Abstract

This scoping review addressed the following questions: (a) What types of caregiver interventions are being done in both aging and developmental disability research? (b) How are these interventions similar and different? (c) What kinds of outcomes do these interventions have? (d) What innovative approaches are these interventions using? and (e) What can each field (developmental disabilities and gerontology) learn from the other based on this review? The disability review spanned 20 years (1992–2012), resulting in 14 studies; the aging review spanned 5 years (2008– 2012), resulting in 55 studies. Data from the final selected studies were then extracted and compared on research design, type of intervention (governmental programs, small-group psychosocial, and other), and outcomes. Generally, in both fields, family-support interventions benefited participants’ well-being and improved service access and satisfaction. Increased partnership between the fields of aging and developmental disabilities is critical to future scholarship in caregiving for both populations.

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Health Conditions and Functional Status in Adults with Autism: A Cross-Sectional Evaluation


Fortuna, R.J., Robinson, L., Smith, T.H., Meccarello, J., Bullen, B., Nobis, K., Davidson, P.W.
J Gen Intern Med. 2015 Sep 11.
http://link.springer.com/article/10.1007%2Fs11606-015-3509-x

Abstract

BACKGROUND:
Children and adolescents with autism spectrum disorder (ASD) have many well-known health concerns, yet health conditions in adults with ASD remain poorly defined.

OBJECTIVE: To examine health conditions and functional status in adults with ASD and identify factors associated with health and functional status across age cohorts.

DESIGN AND SUBJECTS: We collected cross-sectional data from 255 adult subjects aged 18 to 71 years with ASD using the Rochester Health Status Survey IV (RHSS-IV), a 58-item validated survey instrument. We used the National Health and Nutritional Examination Survey and National Health Interview Survey to provide comparative prevalence rates in the general population.

RESULTS: Compared to the general population, young adults aged 18-29 with ASD had a substantially higher prevalence of seizure disorder (11.2 % vs. 1.4 %; p = 0.002), depression (16.4 % vs. 6.4 %; p = 0.007), hypertension (12.9 % vs. 6.3 %; p = 0.05), and allergies (39.7 % vs. 8.4 %; p < 0.001). In contrast, young adults with ASD had considerably lower rates of sexually transmitted illness (STI) (0.9 % vs. 4.3 %; p = 0.03), tobacco use (5.2 % vs. 31.9 %; p < 0.001), and alcohol misuse (0.9 % vs. 11.9 %; p < 0.001). Adults 40 and over with ASD also had higher rates of seizure disorder (29.2 % vs. 1.7 %; p < 0.001), lower tobacco use (2.8 % vs. 24.5 %; p < 0.001), and lower alcohol misuse (1.4 % vs. 18.2 %; p < 0.001) compared to the general population. Amongst the 55 % of participants with a documented IQ score, 91 % had an intellectual disability (IQ < 70). Within the cohort aged 40 years old and older, only 54.2 % were independent with eating, 43.0 % independent with dressing, and 43.1 % independent with bathing. Lower IQ and depression were associated with lower functional status.

CONCLUSIONS: Adults with ASD have a high prevalence of seizure disorders and depression, but low rates of STIs, tobacco use, and alcohol misuse. Within our cohort, the majority of older adults with ASD required some assistance with activities of daily living.

Why do we need national guidelines for adults with intellectual disability and dementia?

New Article Highlights Need for National Practice Guidelines for Adults with ID and Dementia

Matthew P. Janicki and Seth M. Keller

The NIDILRR-funded
Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD) recently published an article, Why do we need national guidelines for adults with intellectual disability (ID) and dementia? in the open access journal Alzheimer's & Dementia: Diagnosis, Assessment, & Disease Monitoring. The article introduces current research in dementia care practices and highlights the need for special guidelines for individuals with ID, for whom symptoms of dementia may be undiagnosed or misdiagnosed. Read More...

Impact of Adulthood Stage and Social-Environmental Context on Body Mass Index and Physical Activity of Individuals With Intellectual Disability

Kelly Hsieh, Tamar Heller, Julie Bershadsky, and Sarah Taub
Intellectual and Developmental Disability 2015, Vol. 53, No. 2, 100–113

Individuals with intellectual disability (ID) are at risk for obesity and physical inactivity. We analyzed a subset of 2009–2010 National Core Indicators (NCI) database to examine (1) the impact of three adulthood stages– younger (20–39 years), middle (40–59 years), and older (60 years and older) on Body Mass Index (BMI) and physical activity (PA); and (2) the relationship between social-environmental context (i.e., residence type, everyday choices, and community participation) and BMI and PA, with adjustment for individual characteristics of the adults with ID. Findings highlight the need to pay more attention to obesity by providing health education and emphasizing healthy choices. Results also suggest the importance of community participation as a way of promoting more physical activity.

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Promoting Collaboration Between Hospice and Palliative Care Providers and Adult Day Services for Individuals With Intellectual and Developmental Disabilities

Corina R. Ronneberg, Lisa Peters-Beumer, Beth Marks, and Alan Factor

Abstract While end-of-life issues are increasingly gaining more attention, people with intellectual and developmental disabilities (IDD) continue to receive significantly less consideration in research, education, and clinical practice compared with the general population. This is a growing concern especially since the sheer number of persons aging with IDD is expected to double in the next 17 years. Furthermore, policies are shifting to reflect a preference for home and community-based services as an alternative to institutionalization, and it becomes evident that adult day services (ADS) may be ideal settings for receipt of end-of-life care, especially among individuals with IDD. However, end-of-life care and advance planning most commonly occur in long-term care settings for the general population and have historically been less of a priority in ADS and residential services for people with IDD. This article discusses the attitudes of, and collaboration between, ADS and end-of-life providers for aging adults including persons with IDD and explores how ADS may be a great pathway for delivering end-of-life care to the IDD population. Implications and recommendations will also be examined.

http://ome.sagepub.com/content/70/4.toc Read More...

Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities

Kathleen M. Bishop, Mary Hogan, Matthew P. Janicki, Seth M. Keller, Ronald Lucchino, Dawna T. Mughal, Elizabeth A. Perkins, Baldev K. Singh, Kathy Service, Sarah Wolfson, and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices (2015)

Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, February 2015, Vol. 53, No. 1, pp. 2-29. doi: http://dx.doi.org/10.1352/1934-9556-53.1.2

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Use of promotoras de salud in interventions with Latino families of children with IDD

Magaña, S., Lopez, K., Paradiso de Sayu, R., Miranda, E. (2014). Use of promotoras de salud in interventions with Latino families of children with IDD. In R. Hodapp (Ed.) International Review of Research in Developmental Disabilities, 47, IRRDD, UK: Academic Press, 2014, pp. 39-75.
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Viability of a Dementia Advocacy Effort for Adults with Intellectual Disability: Using a National Task Group Approach

Journal of Policy and Practice in Intellectual Disabilities
Volume 11 Number 3 pp 176–191 September 2014

Matthew P. Janicki and Seth M. Keller
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Obesity and associated factors in adults with intellectual disability

K. Hsieh, J. H. Rimmer & T. Heller
Journal of Intellectual Disability Research
volume 58 part 9 pp 851–863 september 2014
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Supporting People with Intellectual and Developmental Disabilities to Participate in their Communities through Support Staff Pilot Intervention

Andrea Gossett Zakrajsek, Joy Hammel, & Joseph A. Scazzero
Volume 27, Issue 2 March
2014
Pages 154–162
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Improving health behaviours of Latina mothers of youths and adults with intellectual and developmental disabilities

Magaña, S., Li, H., Miranda, E., & Paradiso, R. (2014) Improving health behaviors of Latina mothers of youths and adults with intellectual and developmental disabilities. Journal of Intellectual Disability Research. doi: 10.1111/jir.12139

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Interventions to promote health: crossing networks of intellectual and developmental disabilities and aging

Heller, T., Fisher, D., Marks, B., & Hsieh, K. (2014) Interventions to promote health: crossing networks of intellectual and developmental disabilities and aging. Disability and Health Journal, 7, S24-S32.

http://www.sciencedirect.com/science/article/pii/S193665741300109X
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The Political Arithmetic of Disability and the American Family: A Demographic Perspective

Fujiura, G. (2014) The Political Arithmetic of Disability and the American Family: A Demographic Perspective. Family Relations Interdisciplinary Journal of Applied Family Studies, 63(1), pp. 7-19.

http://onlinelibrary.wiley.com/doi/10.1111/fare.12051/abstract
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Reciprocity and Social Capital in Sibling Relationships of People With Disabilities

Kramer, J., Hall, Allison, & Heller, T. (2013) Reciprocity and Social Capital in Sibling Relationships of People With Disabilities. Intellectual and Developmental Disabilities, (51)6, 482-495. doi: http://dx.doi.org/10.1352/1934-9556-51.6.482

http://aaiddjournals.org/doi/abs/10.1352/1934-9556-51.6.482

Health Promotion for People with Intellectual and Developmental Disabilities

Laurence Taggart and Wendy Cousins
http://mcgraw-hill.co.uk/html/033524694X.html

About the book
People with learning disabilities are affected by significantly more health problems than the general population and are much more likely to have significant health risks. Yet evidence suggests they are not receiving the same level of health education and health promotion opportunities as other members of society.

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Siblings: Long-Lasting Ties by Tamar Heller

Siblings: Long-Lasting Ties by Tamar Heller

Obesity and associated factors in adults with intellectual disability

Hsieh, K., Rimmer, J.H., & Heller, T. (2013). Obesity and associated factors in adults with intellectual disability, Journal of Intellectual Disability Research. doi: 10.1111/jir.12100r

http://onlinelibrary.wiley.com/doi/10.1111/jir.12100/abstract

Health outcomes of mid-life and aging Latina and Black American mothers of children with developmental disabilities

Magaña, S., & Smith, M.J. (2006). Health outcomes of mid-life and aging Latina and Black American mothers of children with developmental disabilities. Mental Retardation, 44, 224-234.

Health behaviors, service utilization and access to care among older mothers of color who have children with developmental disabilities

Magaña, S. & Smith, M. (2008). Health behaviors, service utilization and access to care among older mothers of color who have children with developmental disabilities. Intellectual and Developmental Disabilities, 46, 267-280.

Older adults of color with developmental disabilities and serious mental illness: Experiences and service patterns

Magaña, S. & Ghosh, S. (2014). Older adults of color with developmental disabilities and serious mental illness: Experiences and service patterns. In K. Whitfield and T. Baker (Eds.) Handbook of Minority Aging. New York: Springer Publishing Company.

National Task Group Early Detection Screen for Dementia (NTG-EDSD) Manual

National Task Group Early Detection Screen for Dementia (NTG-EDSD) Manual. 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). NADD Bulletin, 16(3), 47-54.
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