Health Access for Independent Living (HAIL): Developing a Health Promotion Assistance Tool To learn more, see the HAIL feature story. This project is one of five interventions designed to improve community living opportunities for people with disabilities.
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
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
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)
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.
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.
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.
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
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.
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.
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.
HealthMatters Program Team Consulting on Walmart Foundation Grant to AUCD “Nutrition is for Everyone”
Walmart Foundation Grant to AUCD Expands Nutrition Efforts for People with Disabilities in Four States
SILVER SPRING, MD – The Association of University Centers on Disabilities (AUCD) is pleased to announce that the Walmart Foundation has granted AUCD and four of its member Centers $300,000 to launch the “Nutrition is for Everyone” project. This one-year pilot project will provide nutrition education for an estimated 20,000 people in the disability community across Arkansas, Louisiana, Oklahoma, and Tennessee.
Based on public health data, the four selected states were identified as areas where people with disabilities are least likely to be consuming fruits and vegetables and therefore in the most need for nutrition education and support. The “Nutrition is for Everyone” program design employs “ Nutrition Ambassadors,” trained experts from the AUCD network and local community who will help people with disabilities, as well as their families and friends, develop the knowledge and skills to necessary to make healthy decisions about their nutrition needs.
“We are thrilled that AUCD was selected for this collaborative funding that benefits the field,” said Andy Imparato, AUCD’s Executive Director. “This is the first time the Walmart Foundation will support direct training people with disabilities and community members on nutrition, and we are confident the project will have a positive impact on the health of people with disabilities in Arkansas, Louisiana, Oklahoma, and Tennessee.”
The network Centers collaborating on this effort will receive over $190,000 in combined funding to facilitate the program, in which they will competitively select a state “Nutrition Ambassador.” Ambassadors will develop a tailored work plan based on their state’s specific needs. Ambassadors will provide training for community members with disabilities and their friends and families, to increase the number of people with disabilities receiving nutrition education and subsequently increase the rates of consumption of fruits and vegetables for people with disabilities.
Nutrition and disability experts from the Institute on Disability and Human Development, AUCD’s member Center at the University of Illinois in Chicago, will serve as consultant advisors, sharing lessons learned from “HealthMatters Program,” a program that builds capacity for organizations across the country to implement health promotion programs for people with developmental disabilities.
The four Centers working with Nutrition Ambassadors and AUCD on this project are:
Partners for Inclusive Communities at the University of Arkansas, Little Rock, AR
Since 1994, Partners for Inclusive Communities (Partners) has trained students to support people with disabilities and their families. Partners has graduated 74 nutrition students with 20 of those receiving more than 300 hours of training. Graduates have gone on to become credentialed as Registered Dietitians and Nutritionists.
Human Development Center at Louisiana State University, New Orleans, LA
Many projects at the Human Development Center focus on supporting the education and health of people with disabilities, as well as children and families from diverse and under-served populations. Current nutrition education and health literacy projects include the Early Head Start- Child Care Partnership, a federally funded collaboration with the Louisiana State University Agricultural Center to promote better nutrition and food safety in a cost-efficient, culturally sensitive manner.
Center for Learning and Leadership at the University of Oklahoma Health Sciences Center, Oklahoma City, OK
The Center for Learning and Leadership is located in the College of Medicine at the University of Oklahoma Health Sciences Center. The community relationships developed by this Center demonstrate a strong commitment to supporting self-advocates as they build capacity in their communities and enact systems change. The Center will draw on the research and guidance of academic associates at the College of Allied Health, as well as current research at the Behavioral Nutrition and Physical Activity Lab.
Boling Center for Developmental Disabilities (BCDD), University of Tennessee Health Science Center
The Boling Center for Developmental Disabilities (BCDD) will leverage its Act Early Ambassador experience with systems change in developmental monitoring to benefit “Nutrition is for Everyone.” BCDD is an interdisciplinary program that supports children and adults with developmental disabilities and their families through training, service, applied research, information dissemination, planning, and policy development. BCDD offers inclusive nutrition consultations across the lifespan for people with disabilities.
AUCD is a national, nonprofit network of centers in every state and territory working to advance policy and practice for people living with disabilities and their families. Learn more about AUCD and its Public Health is for Everyone program, which offers resources for public health professionals to create programs that benefit entire communities, including people with disabilities, by visiting www.aucd.org or on Twitter at @AUCDnews.
The mission of the Walmart Foundation is to create opportunities so people can live better. They provide grants to the thousands of organizations that share their mission. In 2014, Walmart and the Walmart Foundation gave $1.4 billion in cash and in-kind contributions around the world. Global in-kind donations accounted for $1 billion. Learn more at www.giving.walmart.com, or on Twitter at @WalmartGiving.
Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (Eds.) (2016), Health Care for People with Intellectual and Developmental Disabilities across the Lifespan
A new book has been published that offers a unique lifespan approach on health care for people with intellectual and developmental disabilities. It addresses the clinical as well as the systems of delivery of health care. It also provides a practical approach to dealing with the health and well-being of people with intellectual and developmental disabilities.
Chapters written by researchers of the Rehabilitation Research and Training Centre on Developmental Disabilities and Health include the following:
Kruti Acharya, Abigail Schindler and Tamar Heller:
Aging: Demographics, Trajectories and Health System Issues, pp 1423-1432.
Healthcare Financing, pp 177-183
David Erwin and Brian Hennen
Community Healthcare, pp. 229-241
James Rimmer and Kelly Hsieh
Health Promotion, pp1087-1103
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