The State of the Science of Health and Wellness for Adults With Intellectual and Developmental Disabilities

Historically, people with intellectual and developmental disabilities (IDD) have experienced health disparities related to several factors including: a lack of access to high quality medical care, inadequate preparation of health care providers to meet their needs, the social determinants of health (e.g., poverty, race and gender), and the failure to include people with IDD in public health efforts and other prevention activities. Over the past decade, a greater effort has been made to both identify and begin to address myriad health disparities experienced by people with IDD through a variety of activities including programs that address health lifestyles and greater attention to the training of health care providers. Gaps in the literature include the lack of intervention trials, replications of successful approaches, and data that allow for better comparisons between people with IDD and without IDD living in the same communities. Implications for future research needed to reduce health disparities for people with IDD include: better monitoring and treatment for chronic conditions common in the general population that are also experienced by people with IDD, an enhanced understanding of how to promote health among those in the IDD population who are aging, addressing the health needs of people with IDD who are not part of the disability service system, developing a better understanding of how to include people with IDD in health and wellness programs, and improving methods for addressing the healthcare needs of members of this group in an efficient and cost-effective manner, either through better access to general medical care or specialized programs.

Source: The State of the Science of Health and Wellness for Adults With Intellectual and Developmental Disabilities

Human Development Institute: H+W – HealthMatters

Source: H+W – HealthMatters

The Health & Wellness Initiative at the Human Development Institute at the University of Kentucky has partnered with the authors of HealthMatters curriculum from the University of Illinois at Chicago to provide a statewide roll out of online based training for staff around the state to become instructors within their community supports for the HealthMatters program. This evidence-based curriculum includes everything community based organizations need to run successful health promotion program for individual with intellectual and developmental disabilities.  Participants have reported feeling healthier, feeling better about themselves, and have started incorporating what they’ve learned from the health promotion programming into their daily lives.  Within the HealthMatters pages and links, you will find valuable resources for your HealthMatters programming. Please use these resources to make your programming as fun and effective as possible!

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Outcomes of “Partnering to Transform Healthcare with People with Disabilities” (PATH-PWD) conference

Research Team Sarah H. Ailey Principal Investigator Rush CON Molly Bathje Co-Investigator Rush CHS Tamar Heller Co-Investigator University of Illinois Award Period 6/1/16 – 5/31/17 Funding Source Agency for Healthcare Research and Quality (AHRQ) R13 Conference grant

Source: Partnering to Transform Healthcare with People with Disabllities (PATH-PWD) – Improving Acute, Primary and Transitional Health care with People with Disabilities | | Rush University

On March 23 and 24, 2017, leaders on disability rights and disability health care from around the country gathered at Rush University for the Partnering to Transform Healthcare with People with Disabilities (PATH-PWD) conference sponsored by Rush University and the Rehabilitation Research and Training Center on Developmental Disabilities and Health, University of Illinois at Chicago. The conference was funded by grants from the Agency for Healthcare Research and Quality (AHRQ) and the Special Hope Foundation.

IASSIDD PowerPoint presentation of the “Tackling Health Disparities and Implementing a Best Practices Healthcare Model: Report from (PATH-PWD) Conference” presented at the American Academy on Developmental Medicine and Dentistry (June 5, 2017).
Sarah H Ailey PhD RN APHN-BC CDDN, Tamar Heller, PhD, & Molly Bathje, PhD, OTR/L

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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.

 

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.

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