From the DSP Perspective: Exploring the Use of Practices That Align With Trauma-Informed Care in Organizations Serving People With Intellectual and Developmental Disabilities

2020 ◽  
Vol 58 (3) ◽  
pp. 208-220
Author(s):  
John M. Keesler
Keyword(s):  
Organizational Culture ◽  
Developmental Disabilities ◽  
Online Survey ◽  
Intellectual And Developmental Disabilities ◽  
Organizational Practices ◽  
Trauma Informed Care ◽  
Trauma Informed ◽  
Current Practices

Abstract Trauma-informed care (TIC) is a systemwide approach that emphasizes organizational practices based upon principles of safety, choice, collaboration, empowerment, and trustworthiness. It is intended to influence an entire organization, with implications for clients and the workforce. The present study explored the extent to which IDD organizations utilize practices that align with TIC with their DSP workforce. Through an online survey, 380 DSPs (84% women; 82% white) responded to a trauma-informed organizational culture measure. Results demonstrated variability across items and significant differences between TIC principles with safety most strongly scored, and collaboration least strongly scored. Perception of organizational practices differed by ethnicity, with non-white DSPs having more favorable responses. Current practices with DSPs align with TIC, however, increased attention through explicit trauma-informed initiatives is warranted.

Trauma-informed care in the context of intellectual and developmental disability services: Perceptions of service providers

2020 ◽  
pp. 174462952091808
Author(s):  
Amanda J Rich ◽  
Nikki DiGregorio ◽  
Carla Strassle
Keyword(s):  
Developmental Disabilities ◽  
Service Providers ◽  
Well Being ◽  
Service Organizations ◽  
Intellectual And Developmental Disabilities ◽  
Mental Health Providers ◽  
Health Providers ◽  
Trauma Informed Care ◽  
High Staff Turnover ◽  
Trauma Informed

Traumatic life events have pervasive impacts on health and well-being. A growing body of literature shows that people with intellectual and developmental disabilities are disproportionately impacted by trauma. Trauma-informed care (TIC) is a philosophy of service provision that is committed to preventing traumatization and re-traumatization and promoting healing. This study explores the perceptions of 130 leaders in the field of intellectual and developmental disabilities services on the adoption and practice of TIC through the analysis of quantitative data. Results indicated a disconnect between the level of TIC integration and perceptions detailing how well organizations are currently performing in aspects of TIC. Barriers to TIC included high staff turnover, lack of accessible mental health providers, lack of affordable training, stigma, and restrictive funding structures. Implications and recommendations for service organizations and educators are provided.

Case Management Workforce Supporting People With Intellectual and Developmental Disabilities: Indications of a New Frontier of the Workforce Crisis

2019 ◽  
Vol 57 (6) ◽  
pp. 499-511
Author(s):  
Matthew D. Bogenschutz ◽  
Parthenia A. Dinora ◽  
Khalilah R. Johnson
Keyword(s):  
Mixed Methods ◽  
Developmental Disabilities ◽  
Case Management ◽  
Online Survey ◽  
Regulatory Compliance ◽  
Intellectual And Developmental Disabilities ◽  
Mixed Methods Approach ◽  
Optimal Outcomes ◽  
New Frontier ◽  
Semistructured Interviews

Abstract Case management (CM) is one of the most commonly used services by individuals with intellectual and developmental disabilities (IDD), but little is known about the workers who provide CM. This study used a mixed methods approach to gain understanding of the CM workforce in one U.S. state. An online survey was completed by 35 IDD service directors (87.5% of directors in the state); and 113 CMs and CM supervisors participated in semistructured interviews and focus groups. Results indicated an annual crude separation rate of 28.2%, and participants often complained that turnover resulted in caseload sizes that prevented optimal outcomes for people with IDD. A limited applicant pool, duties focused on regulatory compliance, and inadequate wages were cited as major challenges for CMs.

scholarly journals COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

2020 ◽  
Vol 3 ◽  
pp. 39 ◽  
Author(s):  
Christine Linehan ◽  
Tal Araten-Bergam ◽  
Julie Beadle-Brown ◽  
Christine Bigby ◽  
Gail Birkbeck ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
Developmental Disabilities ◽  
Living Arrangements ◽  
Online Survey ◽  
Healthcare Access ◽  
National Level ◽  
Lessons Learned ◽  
Intellectual And Developmental Disabilities ◽  
Survey Team ◽  
The Impact

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

scholarly journals ‘We have been in lockdown since he was born’: a mixed methods exploration of the experiences of families caring for children with intellectual disability during the COVID-19 pandemic in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e049386
Author(s):  
Jeanne Wolstencroft ◽  
Laura Hull ◽  
Lauren Warner ◽  
Tooba Nadeem Akhtar ◽  
William Mandy ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
Developmental Disabilities ◽  
Thematic Analysis ◽  
Online Survey ◽  
Intellectual And Developmental Disabilities ◽  
Semistructured Interview ◽  
Mixed Emotions ◽  
Use Of Technology ◽  
Extreme Change ◽  
The Uk

ObjectivesThis study aimed to explore the experiences of parents caring for children with intellectual and developmental disabilities (IDD) during the UK national lockdown in spring 2020, resulting from the COVID-19 pandemic.DesignParticipants were identified using opportunity sampling from the IMAGINE-ID national (UK) cohort and completed an online survey followed by a semistructured interview. Interviews were analysed using thematic analysis.SettingInterviews were conducted over the telephone in July 2020 as the first UK lockdown was ending.Participants23 mothers of children with intellectual and developmental disabilities aged 5–15 years were recruited.ResultsThemes reported by parents included: managing pre-existing challenges during a time of extreme change, having mixed emotions about the benefits and difficulties that arose during the lockdown and the need for appropriate, individualised support.ConclusionsOur findings confirm observations previously found in UK parents of children with IDD and provide new insights on the use of technology during the pandemic for schooling and healthcare, as well as the need for regular check-ins.

scholarly journals COVID-19 IDD: A global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

2020 ◽  
Vol 3 ◽  
pp. 39
Author(s):  
Christine Linehan ◽  
Tal Araten-Bergam ◽  
Jennifer Baumbusch ◽  
Julie Beadle-Brown ◽  
Christine Bigby ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Living Arrangements ◽  
Online Survey ◽  
Healthcare Access ◽  
National Level ◽  
Family Members ◽  
Lessons Learned ◽  
Intellectual And Developmental Disabilities ◽  
Survey Team ◽  
The Impact

Background: This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

A Conversation with Research Ethics Boards About Inclusive Research with Persons with Intellectual and Developmental Disabilities

2019 ◽  
pp. 185-196
Author(s):  
Virginie Cobigo ◽  
Lynne A. Potvin ◽  
Casey Fulford ◽  
Hajer Chalghoumi ◽  
Mariam Hanna ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Research Ethics ◽  
Research Participation ◽  
Third Parties ◽  
Intellectual And Developmental Disabilities ◽  
Ethical Considerations ◽  
Ethical Research ◽  
Research Ethics Boards ◽  
The Right ◽  
Current Practices

Persons with intellectual and developmental disabilities (IDD) have the right to participate in research with dignity and respect. Information about persons with IDD is often acquired from third parties; however, they are capable of, and want to be included in, research. Nevertheless, current practices to protect persons with IDD from harm may preclude them from participating in research. Therefore, inclusive research requires ethical and practical considerations to ensure that persons with IDD are treated fairly. In this chapter, experiences and recommendations in four aspects of ethical research with persons with IDD are shared: (1) accessibility, (2) consent, (3) confidentiality, and (4) research participation risks. Interactions with research ethics boards are used to illustrate the complexity of these ethical considerations and the need for guidelines.

scholarly journals 3311 Trauma Informed Care Needs Assessment of Internal Medicine Residents

2019 ◽  
Vol 3 (s1) ◽  
pp. 76-76
Author(s):  
Jenny Xin Wen ◽  
Colleen Christmas ◽  
Anika Alvanzo
Keyword(s):  
Internal Medicine ◽  
Partner Violence ◽  
Online Survey ◽  
Medical Training ◽  
Underserved Populations ◽  
Nonparametric Tests ◽  
Additional Training ◽  
Trauma Informed Care ◽  
Internal Medicine Residents ◽  
Trauma Informed

OBJECTIVES/SPECIFIC AIMS: In the US, 60-90% of adults have experienced emotional trauma-- defined as an event or series of events (such as abuse, loss, or chronic stressors) that negatively affect health. Trauma exposure is strongly associated with proportional increases in chronic diseases, behavioral health disorders, and risky behaviors. These negative sequelae disproportionately affect ethnic minorities and urban, underserved populations. Physicians and healthcare providers can play important roles in intervention or re-traumatization of victims. However, current standard medical training does not include trauma or Trauma Informed Care (TIC). We aimed to examine the knowledge, attitudes, perceived skills, and behaviors of internal medicine residents regarding managing patients with histories of trauma, as well as residents’ desires for additional training in trauma informed care. METHODS/STUDY POPULATION: We conducted an online survey of residents enrolled in 4 internal medicine programs in Baltimore, Maryland to assess the following behaviors: recognizing, screening, managing, and referring patients with trauma histories. The questionnaire was based on PREMIS (Physician Readiness to Manage Intimate Partner Violence Survey) and addressed residents’ knowledge, attitudes, self-assessed preparedness, and close personal experiences with trauma. Nonparametric tests (Kruskal-Wallis, Fisher’s exact, and Wilcoxon rank sum) were used for analysis. RESULTS/ANTICIPATED RESULTS: Of the 168 residents who responded to the survey (54% response rate), 44% were female, 55% White, 28% Asian, 4% Black and 13.2% unknown/other. Knowledge and preparedness were very limited. 83% percent of respondents underestimated trauma prevalence; 31.7% felt inadequately prepared to appropriately respond to positive disclosures. 59.5% reported they seldom asked about trauma in the past 6 months, and 8.8% never asked. Factors significantly associated with higher frequency of screening patients include greater perceived preparedness to identify, respond to, and refer patients (p =.0001 −.012); familiarity with referral resources (p=.005); comfort in discussing trauma with patients (p =.003); and perceived faculty (p =.001) and workplace support (p =.038). 68.7% had previous training on some trauma-related topics in medical school, and 42.2% did in residency; 91.8% wished for additional training on trauma and trauma informed care. Differences among genders, races, years in training, and program sites were minimal. DISCUSSION/SIGNIFICANCE OF IMPACT: Internal medicine residents in Baltimore had very limited knowledge about trauma prevalence and risks for comorbidities. Although most residents feel TIC is relevant to clinical practice, they feel unprepared to identify, respond to, manage, and refer patients with histories of trauma. Our results support the need for integration of trauma and Trauma Informed Care training into graduate medical education for internal medicine residents.

Adolescent Siblings of Individuals With and Without Intellectual and Developmental Disabilities: Self-Reported Empathy and Feelings About Their Brothers and Sisters

2017 ◽  
Vol 122 (1) ◽  
pp. 62-77 ◽  
Author(s):  
Carolyn M. Shivers ◽  
Elisabeth M. Dykens
Keyword(s):  
Developmental Disabilities ◽  
Online Survey ◽  
Parent Report ◽  
Self Report ◽  
Intellectual And Developmental Disabilities ◽  
Typically Developing ◽  
Target Child ◽  
Sibling Pairs ◽  
Important Addition ◽  
Child Factors

Abstract Siblings of brothers or sisters with intellectual and developmental disabilities (IDD) are important but understudied family members. As many previous studies have relied on parent report of sibling outcomes, the use of sibling self-report is an important addition to the research. This study assessed the feelings of adolescent siblings toward their brothers or sisters with and without IDD, as well as broader aspects of sibling empathy. Data were collected via a national, online survey from 97 parent-sibling pairs. Siblings of individuals with IDD reported higher levels of anxiety toward the target child than did siblings of typically developing individuals. Sibling feelings toward the target child were related to both parental and target child factors, but only among families of individuals with IDD.

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