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


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).

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.

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.


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


  • 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.


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.


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

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

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.


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.

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.


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.

White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs for the California Committee on Employment of People with Disabilities (CCEPD)

Marks, B. & Ailey, S. (2014). White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs for the California Committee on the Employment of People with Disabilities. Chicago, IL. Featured on The American Association of Colleges of Nursing (AACN) website: Accommodating Students with Disabilities (

A White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs is available on the American Association of Colleges of Nursing (AACN) website. This paper also presents a new model of technical standards inclusive of all students with and without  disabilities.

ABSTRACT: Nurses  are  challenged  to  fill  the  new  and  expanded  roles  for  a  health  care  system  designed  to improve the quality  of  health  care.  Despite  the  unique  perspective  and  set  of  skills  that students and health professionals with disabilities have to address many of these challenges, people  with  disabilities  are  often effectively  excluded from  the  nursing  profession. The purposes of this white paper are to 1) frame the issues that prevent applicants with disabilities from entering nursing education and the nursing profession and 2) propose the changes necessary to engage the potential of people with disabilities to enhance nursing leadership and innovation  necessary  to transform  health  care.  Major  barriers  include  the  following: 1) outmoded admission standards that deter applicants with disabilities; 2) misconceptions about the capacity of students with disabilities to function effectively in the clinical components of nursing education; and, 3) lack of a comprehensive understanding of issues related to patient safety. This paper begins with an historical overview of the journey toward the acceptance of nurses with disabilities, including civil rights legislation, judicial rulings with reference to specific landmark cases, and the development of current technical and educational standards. The paper also presents a new model of technical standards inclusive of all students with and without  disabilities, along with recommendations  supportive  of  students with  disabilities  in admission, matriculation and graduation from nursing programs.

Additional Resources

  1. A New Model of Technical Standards
  1. White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs
  1. ADAAA and Accommodations

Marks, B & Ailey, S. A. (2014) White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs. Sacramento, CA: California Committee on Employment of People with Disabilities (CCEPD).

EEOC Sues Muskegon Family Care for Disability Discrimination

Medical Provider Fired Employee with a Disability, Federal Agency Charges

DETROIT – Muskegon Family Care, a medical services provider located in Muskegon, Heights, MI, violated federal law by firing an employee due to a disability, the U.S. Equal Employment Opportunity Commission (EEOC) alleged in a lawsuit filed today.
According to EEOC’s suit, Avis Lane worked for Muskegon Family Care as an outreach enrollment coordinator for over a month when it fired her based on information obtained during her pre-employment physical.
Firing an employee due to a disability violates the Americans with Disabilities Act of 1990 (ADA). EEOC filed a lawsuit in U.S. District Court for the Western District of Michigan (EEOC v. M.G.H. Family Health Center d/b/a Muskegon Family Care, Civil Case No.: 1:15-CV-00952) after first attempting to reach a pre-litigation settlement through its conciliation process. EEOC’s lawsuit seeks back pay, compensatory damages, punitive damages, and injunctive relief — including a court order prohibiting Muskegon Family Care from firing disabled employees in the future.
“Firing a qualified employee, who successfully performed the job for over a month, based on information obtained during a physical violates the ADA,” said Laurie Young, regional attorney for EEOC’s Indianapolis District. “Employers cannot use recommendations from a third-party health examiner without determining for itself whether the employee can actually do the job.”
EEOC enforces federal laws prohibiting employment discrimination. Further information about EEOC is available on its web site at

Supporting Nurses and Nursing Students with Disabilities

Supporting Nurses and Nursing Students with Disabilities
Neal-Boylan, Leslie PhD, RN, APRN, CRRN, FAAN; Marks, Beth PhD, RN; McCulloh, Karen J. BSN, RN
AJN, American Journal of Nursing:
October 2015 – Volume 115 – Issue 10 – p 11

Federal agencies and nursing organizations say it’s high time to put aside preconceptions.
Nursing students and nurses with disabilities face discrimination and bias both in schools of nursing and in the workplace. This can be overt or subtle and can take many forms. In March 2014, nurses spoke up on behalf of, and with, nurses with disabilities at a policy roundtable in Washington, DC, cosponsored by the National Organization of Nurses with Disabilities (NOND) and the Department of Labor, Office of Disability Employment Policy. Representatives from several federal agencies and national nursing organizations attended the meeting, where a plan of action was developed through the collaboration of federal agencies, nursing and disability rights organizations, nurse educators, researchers, clinicians, and nurses with disabilities.

Diversity among doctors: Students with disabilities are finding their place in medical schools—and beyond

< , who do not work with me directly, and they have assumptions.”
That medical students and residents face stigma because of a health condition is ironic—but not so surprising. “There’s some deep psychological theory around how doctors in general may not necessarily accept their mortality,” says Vera Krejcik, president of the Canadian Association of Physicians with Disabilities. “A lot of people have noticed a certain discomfort; colleagues don’t know how to negotiate being with somebody with a difference.”
Krejcik had a stroke while studying medicine at the University of Calgary. With limited use of one arm, she switched her focus from internal medicine to psychiatry. It was a matter of being “realistic,” says Krejcik. “I don’t worry about hobbling around or needing to suture.”
Before anyone can become a doctor, there are technical standards they must meet, both physical and cognitive, says Lewis, who helped Dunkley establish herself as a resident at the University of Alberta. But there are intangibles to consider, too. Dunkley and others are proving that. As Lewis puts it, “Any candidate who comes from an extraordinary background with a unique perspective, they often do make extraordinary physicians.”

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.

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