Research and Training Center on Community Living: Summaries of Research Studies 2018-2023

Characteristics, support needs, outcomes, and longitudinal trends of adults with IDD in the National Health Interview and the National Core Indicators Surveys.

Study 1: Activity 1

Investigators

Principal Investigator: Sheryl Larson

Co-investigators: Sandra Pettingell, Lynda Lahti Anderson

Overview

This study examined the characteristics and outcomes of adults with IDD using the National Health Interview Survey (NHIS).

Why this mattered

The 1994/1995 National Health Interview Survey Disability Supplement provided a wealth of information about this population (Larson et al., 2001). Unfortunately, there have been few nationally representative publicly available data sources for adults with IDD since the NHIS-D. The primary issue is that the current NHIS survey includes asking the question “Has the person ever been told that they have autism spectrum disorders, intellectual disabilities, and developmental delay?” for children but not for adults.

An analysis using the 2017-2018 NHIS which included both the ACS and the Washington group questions on cognitive limitations, as well as asking specifically if an adult had an intellectual disability and the disability causing limitations in cognitive functioning, allowed us to examine how the questions functioned for adults with ID. In 2017 the NHIS question asked about difficulty concentrating or remembering. In 2018, the cognitive disability question asked about difficulty concentrating, remembering, or making decisions.

We used four items to identify adults with ID: does the person have intellectual disabilities (in the chronic conditions list? LCHRC14A); is intellectual disability the cause of one or more activity limitations? (ALHCA14A); is intellectual disability the reason for difficulties remembering or concentrating?(COGCAUS2R); and is intellectual disability the reason for difficulty remembering, concentrating, or making decisions? (PDFCAUS2R).

Key findings

Here are a few key findings. These are preliminary unweighted results.

Finding: We identified 559 adults as having ID based on one or more of these questions. Of the people with ID asked whether ID was the cause of an activity limitation, 56.6% said yes.

Conclusion: Directly asking a person (or their proxy respondent) whether they have ID is more effective in identifying this population.

Finding: Of the people with ID asked about difficulty remembering or concentrating (the 2017 sample) 34% reported no difficulty. Of the people with ID asked about difficulty remembering, concentrating, or decision-making, 24.2% reported no difficulty.

Conclusion: Far less than half of people identified as having ID endorsed either cognitive difficulty question as characterizing them.

Finding: The unweighted prevalence of ID was 0.69 percent in the 2017 NHIS sample and 1.06 percent in the 2018 NHIS sample.

Conclusion: Including decision-making in the cognitive difficulties question along with asking about the condition causing the difficulty allowed us to identify a higher proportion of the sample as having ID.

Finding: In the 2017 survey (using the question asking only about remembering or concentrating), the most common conditions listed as reasons for the difficulty were: mental illness (23%), chronic health conditions (15.6%), age-related changes (14.7%), and TBI or stroke (13.3%). Only 6.1% of the people reporting this difficulty reported the cause to be intellectual disability (8.9% reported the cause to be learning disability, and 2.9% reported the cause to be developmental disability). In the 2018 survey (using the question asking about remembering, concentrating, or decision making), the most common conditions listed as the reason for the difficulty were: age-related changes (40.8%), mental Illness (17.3%), learning disability (8.0%), and chronic health conditions (6.9%). Only 1.3% listed intellectual disability and 0.6% listed developmental delay as the cause of the limitation.

Conclusion: The cognitive limitation question (however worded) is not a proxy for having an intellectual disability. It is not specific to intellectual disability. The most common conditions causing cognitive limitations were mental illness or age-related changes. These questions are not helpful in identifying people with ID.

Key products, publications, and reports

Preliminary results were presented at the I/DD Counts national summit in 2022 (https://acl.gov/iddcounts ).

• Larson, S.A., Lincoln, A., Pham, M., & Vegas, L. (2022, November). What are non-governmental agencies doing to get data on prevalence and health of people with ID/DD? Washington, DC: Administration on Community Living, ID/DD Counts Conference (70 participants)

Study 1: Activity 2

Investigators

Principal Investigator(s): Sheryl Larson, Renata Ticha

Co-investigators: Amy Hewitt, Roger Stancliffe, Alixe Bonardi, Mary Lou Bourne

Overview

This study examined the characteristics and outcomes of adults with IDD using the National Health Interview Survey (NHIS) and the National Core Indicators (NCI) data. Activity 1 compared health, employment, retirement, and other outcomes for adults with or without IDD using the NHIS. Activity 2 examined both outcomes and longitudinal trends for people with IDD based on the NCI Adult Consumer Survey (NCI-ACS) data and specially collected longitudinal data from the NCI-ACS in PA.

Why this mattered

National Core Indicators (NCI) is a source of unique information about adults with IDD receiving services in the US. The data is collected in most US states on an annual basis and includes information about individual characteristics, satisfaction with services, and service outcomes. NCI data is used at the state level to evaluate service outcomes for adults with IDD. In Pennsylvania, NCI data collection has been extended to track additional information on adults with IDD longitudinally (Independent Monitoring for Quality – IM4Q). At ICI, we have had a productive history of analyzing NCI data (including this RTC-CL cycle) to investigate trends in community-based outcomes (including choice-making, employment, and privacy) for the target population across states to inform services and policy.

Key findings

• It is feasible to utilize IM4Q data collected in Pennsylvania to conduct longitudinal analysis on key community outcomes for adults with IDD using at least three waves of data.
• Three waves of IM4Q data indicated that adults with IDD had opportunities for more everyday choices, but not support-related choices over time.
• Based on national NCI data, adults with IDD who could stay home if they wanted had more choice about where, when and with whom they went out.
• Based on national NCI data, adults with IDD who have a history of living in institutions demonstrated worse outcomes overall than those who did not live in institutions.

Key products, publications, and reports

Publications

• Houseworth, J., Pettingell, S. L., Bershadsky, J., Tichá, R., Lemanowicz, J., Feinstein, C., & Zhang, A. (2023). Examining Choice and Control for People With IDD Over Time. American Journal on Intellectual and Developmental Disabilities, 128(6), 449–461. https://doi.org/10.1352/1944-7558-128.6.449
• Stancliffe, R. J., Tichá, R., Pettingell, S. L., Houseworth, J., & Bershadsky, J. (2023). Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis. Journal of applied research in intellectual disabilities: JARID, 36(4), 859–870. https://doi.org/10.1111/jar.13103
• Tichá, R., Pettingell, S. L., Lemanowicz, J., Feinstein, C. S., Bershadsky, J., Houseworth, J., & Zhang, A. Q. (2023). Using the Independent Monitoring for Quality Program to Examine Longitudinal Outcomes for People With Intellectual and Developmental Disabilities. Intellectual and developmental disabilities, 61(3), 238–249. DOI: 10.1352/1934-9556-61.3.238.
• Houseworth, J., Pettingell, S. L., Stancliffe, R. J., Bershadsky, J., Tichá, R., & Zhang, A. (2022). Community employment, facility-based work, and day activities for working age people with intellectual and developmental disability. Journal of Vocational Rehabilitation, 57(1), 97–112. DOI: 10.3233/JVR-221202.
• Stancliffe, R. J., Pettingell, S. L., Bershadsky, J., Houseworth, J., & Tichá, R., (2022). Community participation and staying home if you want: US adults with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 35(5), 1199-1207. https://doi.org/10.1111/jar.13014. Published open access.
• Stancliffe, R. J., Pettingell, S. L., Tichá, R., & Houseworth, J. (2022). Mothers and fathers with intellectual and developmental disabilities who use United States disability services: Prevalence and living arrangements. Journal of Intellectual Disability Research, 66(part 3), 297-305. https://doi.org/10.1111/jir.12912

Presentations

• Ticha, R., Houseworth, J., Lahti Anderson, L., & Stancliffe, R. (2023, March). Secondary analysis of National Core Indicators (NCI) data: Examining services and outcomes of adults with intellectual and developmental disabilities. Masonic Institute for the Developing Brain, University of Minnesota, Minneapolis, MN.
• Houseworth, J., Feinstein, C. S., Pettingell, S., Lemanowicz, J., Bershadsky, J., & Zhang, A. (2023, June). Changes in Employment Outcomes for People with Intellectual/Developmental Disabilities in Pennsylvania. [Poster]. The American Association on Intellectual and Developmental Disabilities 144th Annual Meeting, Pittsburgh, PA.
• Houseworth, J., Pettingell, S., Stancliffe, R., Bershadsky, J., Ticha, R., & Zhang, A. (2022, June). Day and employment participation among IDD services users: factors contributing to paid and community-based activities. Concurrent session at the American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting, Jacksonville, FL.
• Ticha, R., Pettingell, S., Lemanowicz, J., Feinstein, C. S., Bershadsky, J., Houseworth, J., & Zhang, A. (2022, June). Using the Independent Monitoring for Quality to Examine Longitudinal Outcomes for people with IDD[Poster]. The American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting, Jacksonville, FL.
• Houseworth, J., Feinstein, C. S., Pettingell, S., Bershadsky, J., Ticha, R., Lemanowicz, J., & Zhang, A. (2022, June). Using the Independent Monitoring for Quality (IM4Q) to Examine changes over time for people with IDD (Part 2): Choice-making. [Poster]. The American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting, Jacksonville, FL.
• Houseworth, J., Feinstein, C. S., Pettingell, S., Bershadsky, J., Ticha, R., Lemanowicz, J., & Zhang, A. (2022, June). Using the Independent Monitoring for Quality (IM4Q) to Examine changes over time for people with IDD (Part 1): Employment. [Poster]. The American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting, Jacksonville, FL.
• Stancliffe, R. J., Pettingell, S.L., Houseworth, J., & Tichá, R. (2022, June). Socially-inclusive community participation: community groups and religious services. AAIDD Annual Meeting, Jacksonville, FL.
• Stancliffe, R. J., Pettingell, S.L., Bershadsky, J., Houseworth, J., & Tichá, R. (2022, June). Community participation and choosing to stay home if you want [Poster]. AAIDD Annual Meeting, Jacksonville, FL.

Effects of Government Policies: The 2014 HCBS Settings Rule and Medicaid Self-Directed Services Options on community living and participation outcomes.

Study 2: Activities 1 and 2

Investigators

Principal Investigator: Sheryl Larson

Co-investigator: Lynda Lahti Anderson

Overview

This mixed-method study examined Medicaid LTSS policies and outcomes for people with IDD. Activity 1 used stakeholder interviews and case studies to identify and describe community settings in which people with IDD live that are ineligible for Medicaid HCBS funding under the 2014 Settings Rule in three states. It specifically examined farmsteads, gated communities, residential schools, and clustered residences. Activity 2 used secondary data analysis and interviews with states to examine implementation of the 2014 HCBS Settings rule and its impact on community living outcomes. Activity 3 used stakeholder interviews and policy reviews to examine state policies about Medicaid self-directed services.

In the original guidance, several types of settings were listed as presumably institutional and therefore subject to heightened scrutiny. That list included intentional communities and congregate day programs. After a change in political administrations, and pushback from some families and advocates, the list of settings was dropped, and additional flexibility was provided to states about which settings needed to be reviewed. Our plan to interview states about intentional communities was unsuccessful because many states were facing lawsuits regarding their plans to review and possibly decertify intentional communities; those states and others facing pushback were unwilling to participate in interviews. We substituted a series of focus groups cosponsored by NASDDDS with states focusing more broadly on experiences implementing the settings rule. That study and a technical report describing its findings have been completed.

Why this mattered

The 2014 HCBS rule affects every US state and all 4.2 million HCBS LTSS recipients (Chidambaram et al., 2023). The rule was ambitious and required massive systems changes. This set of activities used several strategies to examine the impacts of these systems changes.

Key findings

• Between 2013 and 2019, the proportion of adult LTSS recipients with IDD in facility-based work decreased from 24% to 12%, while the percentage in competitive integrated employment increased from 19% to 22%. The percentage receiving community or facility-based non-work services increased from 57% to 67% (Winsor, et al., 2022). The total number of people receiving day or employment support increased from 607,959 to 657,826 (8%). In those same years, the percentage of LTSS recipients living with a family member increased from 55% to 61% while the percentage living in group settings of four or more people decreased from 24% to 18% (Larson et al., 2022). The total number of LTSS recipients with IDD increased from 1,139,868 to 1,401,640, a 23% increase (Larson et al., 2022).
• State agencies and NASDDDS staff reported many systems changes associated with implementing the HCBS rule. Key areas of change included implementing more robust systems of person-centered planning and service delivery, addressing gaps between what the rule required for civil rights of participants and what providers were offering, and major revisions to strategies to engage stakeholders in policymaking that dramatically increased participation by individuals with disabilities and families in that process.
• States described challenges associated with changing federal guidance (especially guidance about heightened scrutiny, and shifting timelines
• The HCBS rule required changes in state agency culture and infrastructure to embed the rule into state policy; COVID-related funding helped states progress toward compliance with the rule; and states had to change their quality assurance infrastructure and process to address providers that were not in compliance with the rule.
• During the 9-year implantation of the settings rule, states changed their service menus shifting from congregate day services to inclusive community participation, and from sheltered workshops and subminimum wage jobs to competitive employment. Fewer changes were made to residential services for people with IDD but some large congregate settings for other populations were at risk of being decertified.
• Direct support workforce challenges which had been problematic for decades became dire as COVID changed American society in profound ways.
• COVID also served as a catalyst for change with one focus group participant noting “We moved 10 years in two months because we had to.” Key changes included paying family members to provide care, authorizing remote service delivery, and wide-sweeping changes in technology use. Remote conferencing made it possible for people with IDD and families to participate in policy discussions in a way not previously possible. National initiatives lead to increased access to broadband, states used COVID stimulus dollars to provide internet enabled devices to people with disabilities, families, and group homes. Finally, people with IDD in essential jobs who could not get on-site job coaching due to COVID were successful with remote supports. Barriers to telehealth were removed, improving access to medical and mental health care. Finally, there were increases in the use of assistive technologies.

References

• Chidambaram, P., & Burns, A. (2013). How many people use Medicaid long-term services and supports and how much does Medicaid spend on those people? Data Note. Kaiser Family Foundation. Downloaded November 28, 2023, from https://www.kff.org/medicaid/issue-brief/how-many-people-use-medicaid-long-term-services-and-supports-and-how-much-does-medicaid-spend-on-those-people/
• Winsor, J., Butterworth, J., Migliore, A., Domin, D., Zalewska, A., Shepard, J., & Kamau, E. (2022). StateData: The national report on employment services and outcomes through 2019. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion.

Key products, publications, and reports (jointly funded by RTCCL and RISP)

Technical Reports

• Anderson, L.L., Larson, S.A., & Hewitt, A.S. (2020). Non-traditional congregate residential programs for people with intellectual and developmental disabilities: An environmental scan. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
• Geyer, J., Larson, S.A., Nye-Lengerman, K., Gunty, A., Johnson, D., and Gubits, D. (2020). SSI Youth Community-Based Services and Supports. Abt Associates Inc. and University of Minnesota Institute on Community Integration, prepared for the Social Security Administration, Contract #28321319Q00000365.
• Havercamp, S. M., Krahn, G., & Larson, S. A. (2019). Working through the data conundrum: Identifying persons with intellectual and developmental disabilities in national population surveys. Washington DC: US Department of Health and Human Services, Administration on Community Living, Administration on Intellectual and Developmental Disabilities. https://aclprdep01.azureedge.net/cdn/ff/1iflcHhToo9FRTlfo47Yw-wct5dWX-Sf_RHQqY0XJhI/1569854188/public/Aging and Disability in America/National_Data_Paper_AIDD-ACL_09.25.2019 508 compliant.pdf
• Larson, S.A. & Geyer, J. (2021). Delaying application of SSI’s substantial gainful activity eligibility criterion from Age 18 to 22. Washington, DC: U.S. Department of Labor, Office of Disability Employment Policy. https://www.dol.gov/sites/dolgov/files/ODEP/pdf/SSI_Youth_Larson_Final_Proposal.pdf
• Larson, S.A., Butterworth, J., Winsor, J., Tanis, S., Lulinski, A., and Smith, J. (2021). 30 years of community living for individuals with intellectual and/or developmental disabilities (1987- 2017). Washington, DC: Administration for Community Living, U.S. Department of Health and Human Services.
• Larson, S.A., Eschenbacher, H.J., Taylor, B., Pettingell, S., Sowers, M., & Bourne, M.L. (2020). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2017. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
• Larson, S.A., Neidorf, J., Begin, B., Pettingell, S., Vegas, L., (in press). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2020. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration
• Larson, S.A., Neidorf, J., Pettingell, S., Sowers, M. (2022). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2019. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration. DOI: 10.13140/RG.2.2.23116.08320. https://ici-s.umn.edu/files/y_7tYyJDmn/risp_2019_v6
• Larson, S.A., van der Salm, B., Pettingell, S., Sowers, M., & Anderson, L.L., (2021). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2018. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
• Neidorf, J. & Larson, S.A. (2023). Experiences of State IDD agencies with the implementation of Medicaid’s 2014 Home and Community Based Services Rule: Focus Group Findings. Technical report. University of Minnesota, Research and Training Center on Community Living.

Journal Articles

• Anderson, L. L., Larson, S. A., MapelLentz, S., & Hall-Lande, J. (2019). A Systematic Review of U.S. Studies on the Prevalence of Intellectual or Developmental Disabilities since 2000. Intellectual and developmental disabilities, 57(5), 421-438. doi: 10.1352/1934-9556-57.5.421
• Havercamp, S. M., Krahn, G. L., Larson, S. A., Fujiura, G., Goode, T. D., & Kornblau, B. L. (2019). Identifying People with Intellectual and Developmental Disabilities in National Population Surveys. Intellectual and developmental disabilities, 57(5), 376-389. doi: 10.1352/1934-9556-57.5.376
• Larson, S.A., Caldwell, J., Robison, G., & Oteman, Q. (in press). Housing and long-term supports and services for people with IDD and DD from diverse communities. Intellectual and Developmental Disabilities.
• MapleLentz, S., Anderson, L.L., Larson, S.A. & Hall-Lande, J. (2019). A systematic review of US studies on the prevalence of intellectual or developmental disabilities since 2000. Intellectual and Developmental Disabilities, 57, 376-389.
• Qian, X., Larson, S. A., Tichá, R., Stancliffe, R. S., & Pettingell, S. L. (2019). Active support training, staff assistance, and engagement of individuals with intellectual and developmental disabilities in the United States: Randomized controlled trial. American Journal on Intellectual and Developmental Disabilities, 124(2), 157-173. doi: 10.1352/1944-7558-124.2.157
• Qian, X., Ticha, R., Larson, S.A., Stancliffe, R.J., and Wuorio, A. (2015). The impact of individual and organizational factors on engagement of individuals with intellectual disability living in community group homes: A multilevel model. Journal of Intellectual Disability Research, 59(6), 493-505. DOI: 10.1111/jir.12152
• Tichá, R., Qian, X., Stancliffe, R. J., Larson, S. A., & Bonardi, A. (2018). Alignment between the Convention on the Rights of Persons with Disabilities and the National Core Indicators Adult Consumer Survey. Journal of Policy and Practice in Intellectual Disabilities, 15(3), 247-255.

Book Chapters/Encyclopedia Entries (5 total)

• Anderson L.L., MapelLentz S., Larson S.A. (2019) Physical Disability and Health Disparities. In: Hollar D. (eds) Advances in Exercise and Health for People with Mobility Limitations. Cham, Switzerland: Springer Nature, pp. 41-59. DOI https://doi.org/10.1007/978-3-319-98452-0_4.
• Larson, S.A. (2018). Deinstitutionalization. In E. Braaten (Ed.). The SAGE encyclopedia of intellectual and developmental disorders. Thousand Oaks, CA: SAGE. Pages 355-360. DOI: http://dx.doi.org/10.4135/9781483392271.n119 .
• Larson, S.A. (2018). Group Homes. In T. Heller, S. Parker-Harris, C. Gill, and R. Gould (Eds.). Disability in American Life: An Encyclopedia of Concepts, Policies, and Controversies.
• Larson, S.A. (2018). Long-Term Supports and Services. In E. Braaten, (Ed). The SAGE encyclopedia of Intellectual and developmental disorders. Thousand Oaks, CA: SAGE Publications Inc. Pages 969-970. DOI: http://dx.doi.org/10.4135/9781483392271.n301 .
• Larson, S.A., Eschenbacher, H.J., & Pettingell, S.L. (2018). A place to call home. In Hewitt, A.S., & Nye, K. (Eds.). A Community Life: Community Living and Participation for Individuals with Intellectual and Developmental Disabilities. Washington DC: American Association for People with Intellectual and Developmental Disabilities.

Policy Research Briefs

• Cole, A. Begin, B., & Larson, S.A. (2023). Institutional bias in long-term services and supports for people with IDD. Policy Research Brief, 30 (2). Minneapolis: University of Minnesota, Research and Training Center on Community Living.
• Genjang, N., Anderson, L.L, & Larson, S.A. (2022). Most people with IDD getting long-term supports live with a family member. Policy Research Brief, 29 (3). Minneapolis: University of Minnesota, Research and Training Center on Community Living.
• Larson, S.A. (2022). A place to call your own: Housing for people with intellectual or developmental disabilities. In RAPP New Hampshire Disability and Housing. Concord, NH: NH Council on Developmental Disabilities. https://drcnh.org/edition/spring-2022-disability-and-housing/
• Larson, S.A. (2022). Are large institutions for people with intellectual or developmental disabilities a thing of the past? Policy Research Brief, 29 (2). Minneapolis: University of Minnesota, Research and Training Center on Community Living.
• Neidorf, J., Larson S.A. (2023). Overrepresentation of people with intellectual and developmental disabilities moving between large state-run institutions and the criminal legal system. Policy Research Brief, 30 (1). University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration. https://publications.ici.umn.edu/community-living/prb/30-1/main

Study 2: Activity 3

Investigators

Principal Investigator: Jennifer Hall-Lande

Co-investigator(s): Jon Neidorf, Libby Hallas

Overview

This mixed method study examines Medicaid LTSS policies and outcomes for people with IDD. Activity 3 uses stakeholder interviews and policy reviews to examine state policies about Medicaid self-directed services. This is the self-directed services portion of the study.

Why this mattered

Recipients of self-directed services continue to increase, and more states offer self-direction for people with IDD than in previous years. Additionally, the COVID-19 pandemic urged some people to try self-direction for the first time as a safety precaution from exposure to more people. This study sought to understand what, from state IDD agencies’ points of view, works well in self-direction, what needs to be improved, and how did use of self-direction change in response to COVID-19.

Key findings

• Self-direction's greatest strength is flexibility. It allows people to set their own schedules and choose their own staff.
• Hiring friends and family increases access to services, especially in areas that may not have other service options such as rural areas.
• People who self-direct must manage many complicated details of the self-direction plan. This can be a barrier to self-direction.
• Self-direction can be difficult for state IDD agencies to describe to people seeking services and their family members because they are very different from traditional services.
• While the number of people who self-directed only increased modestly at the beginning of the COVID-19 pandemic, those who self-directed at that time experienced smaller interruptions in their services compared to those receiving traditional LTSS.

Key products, publications, and reports

• Neidorf, J., Hallas, L., & Hall-Lande, J. (2023). State IDD Agencies’ Views on Self-Directed Services. (Policy Research Brief Vol. 30, Number 6). DOI: 10.13140/RG.2.2.23949.72163
• Neidorf, J., Hallas, L., & Hall-Lande, J. (2023). “State IDD Agencies' Views on Self-Directed Services.” Poster at the Association of University Centers on Disability Conference, Washington, DC. https://www.aucd.org/conference/detail/session_presentation.cfm?id=34412
• Neidorf, J., Hallas, L., & Hall-Lande, J. (In preparation). (Policy Forum on self-directed services).
• Neidorf, J., Hallas, L., & Hall-Lande, J. (In preparation). (Peer-reviewed journal article on self-directed services).

Effects of an enhanced customized direct support workforce intervention on organizational, frontline supervisor, and direct support professional outcomes.

Study 3

Investigators

Principal Investigator: Amy Hewitt

Co-investigator(s): Renáta Tichá, Brian Abery

Overview

This study was modified because of the COVID-19 pandemic. Early in the pandemic we recognized that we would struggle to get into organizations and so we modified the study to include a three-wave longitudinal study of the effects of COVID-19 on the direct support workforce and the people with IDD to whom they provide support. We significantly reduced the number of sites in our original proposal and moved it to a simple pre and post measure of two different groups (enhanced and basic intervention).

Why this mattered

In March of 2020, across the United States, many schools, businesses, and organizations that support individuals with disabilities implemented safety protocols, shut their doors, and began working and participating remotely or in very different ways because of the COVID-19 pandemic. Not only was it not an option to stop working for most direct support professionals (DSPs) and frontline supervisors (FLSs), their work continued in different ways and in some situations, different places. A series of four online surveys to hear the voices of DSPs from across the country throughout the pandemic. The initial survey was in April 2020 with 8,914 respondents, a 6-month follow-up in November 2020 with 8,846 respondents, a 12-month follow-up in June-July 2021 with 5,356 respondents, and a 24-month follow-up June-July 2022 with 2,657 respondents. All four surveys were intended to gather information about DSP experiences during the COVID-19 pandemic to inform effective policy and practice decisions about what is needed and to better prepare for potential future waves of this or other pandemics.

Key findings

• 70%-74% of respondents across survey timepoints indicated they were the primary wage earner in their household.
• Roughly one-third of respondents in the first three surveys reported receiving a salary augmentation due to the COVID-19 pandemic. By the 24-month survey, that was up to 53%.
• 15%-24% of respondents across timepoints worked an additional 31 or more hours on top of their regular work hours
• Respondents reported changes in work schedules including working more hours per week, different shifts, in different settings, supporting different people, and working remotely.
• PPE shortages existed when the pandemic started. In the 12- and 24-month surveys 90%-91% reported having enough PPE, but 15%-20% had to pay for it out of pocket.
• Additional safety measures including additional cleaning, quarantines, wearing PPE, taking temperatures, social distancing, and required vaccination were in place where respondents worked.
• In the 24-month survey, 84% of respondents were vaccinated; 67% had their booster shot.
• In the 24-month survey, 47% of respondents felt their work life was worse or much worse since the beginning of the pandemic.
• At the 12- and 24-month surveys, respondents indicated experiencing health and wellness issues as a result of the pandemic. These issues included sleep issues, physical health complications, physical and/or emotional burnout, depression, anxiety, other mental health issues, PTSD, suicidal ideation, loss of a loved one, and others.

Key products, publications, and reports

• Pettingell, S. L., Bershadsky, J., Anderson, L. L., Hewitt, A., Reagan, J., & Zhang, A. (2023). The Direct Support Workforce: An Examination of Direct Support Professionals and Frontline Supervisors During COVID-19. IDD, 61(3), 197-210 https://doi.org/10.1352/1934-9556-61.3.197
• Pettingell, S. L., Bershadsky, J., Hewitt, A., Anderson, L. L., & Zhang, A. (2023). Direct Support Professionals and COVID-19 Vaccination: A Comparison of Vaccinated and Unvaccinated DSPs. IDD, 61(1), 1-15. https://doi.org/10.1352/1934-9556-61.1.1
• Hall, S., Anderson, L. L., Pettingell, S. L., Zhang, A., Bershadsky, J., Hewitt, A., & Smith, J., (2022). Direct support professional and frontline supervisor perspectives on work life in a pandemic. Inclusion, 10(4), 314-326. https://doi.org/10.1352/2326-6988-10.4.314
• Pettingell, S. L., Bershadsky, J., Hewitt, A., Lahti Anderson, L., & Zhang, A. (Dec 2023). Direct support professionals and COVID-19 vaccination: A comparison of vaccinated early adopters and in-betweeners. Intellectual and Developmental Disabilities (2023) 61 (6): 492–505. https://doi.org/10.1352/1934-9556-61.6.492
• Hall, S., Lahti Anderson, L., & Pettingell, S. L. (Dec 2023). The self-perpetuating turnover cycle: Frontline supervisors and direct support professionals reflect on its causes and impacts. Inclusion (in press).
• Pettingell, S., Bershadsky, J., Hewitt, A., Lahti Anderson, L., Hall, S., Smith, J., Sanders, M., Kleist, B., Zhang, A., & Oteman, Q. (2022). Direct Support Workforce and COVID-19 National Survey Report: 24-month Follow-up. Minneapolis: Institute on Community Integration, University of Minnesota. https://publications.ici.umn.edu/community-living/covid19-survey-24-month-followup/main?
• Hewitt, A., Pettingell, S., Bershadsky, J., Smith, J., Kleist, B., Sanders, M., Zhang, A., Dean, K., & Kramme, J. (2021). Direct Support Workforce and COVID-19 National Survey Report: Twelve-Month Follow-up. Minneapolis: Institute on Community Integration, University of Minnesota. https://publications.ici.umn.edu/community-living/covid19-survey-12-month-followup/main
• Hewitt, A., Pettingell, S., Kramme, J., Smith, J., Dean, K., Kleist, B., Sanders, M., & Bershadsky, J. (2021). The Direct Support Workforce and COVID-19 National Survey Report: 6-Month Follow-up. Minneapolis: Institute on Community Integration, University of Minnesota. https://publications.ici.umn.edu/community-living/covid19-survey-6-month-followup/main
• Hewitt, A., Pettingell, S., Kramme, J., Smith, J. & Kleist, B. (2020). Results of the Direct Support Workforce COVID-19 National Survey 2020. Research and Training Center on Community Living, University of Minnesota. https://ici.umn.edu/covid19-survey
• Hall-Lande, J., Pettingell, S., & Anderson, L. (2023, March). Promoting health and wellness for direct support professionals. Poster session at the Art and Science of Health Conference, Colorado Springs, CO. https://publications.ici.umn.edu/posters/health-wellness-dsps/main
• Pettingell, S.L., Bershadsky, J., Hewitt, A., Smith, J. (2022, June). Challenges faced by direct support professionals during Covid-19. Concurrent session at the American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting, Jacksonville, FL.
• Pettingell, S., Bershadsky, J., Kramme, J., Hewitt, A., & Smith, J. (2022, March 24). The Direct Support Workforce and COVID-19: Low Wages and Racial Disparities [Poster]. College of Education and Human Development Research Day, Minneapolis, MN. https://conservancy.umn.edu/handle/11299/226783
• Kramme, J., Pettingell, S., Hewitt, A., Bershadsky, J., Smith, J. (2022, March 24). How has the COVID-19 pandemic impacted direct support professionals across the United States? [Poster]. College of Education and Human Development Research Day, Minneapolis, MN. https://conservancy.umn.edu/handle/11299/226759
• Pettingell, S.L., & Bershadsky, J. (2023, June). Challenges Faced by Direct Support Professionals and Frontline Supervisors in Community Employment Sites During COVID-19 Pandemic. Concurrent session at the American Association on Intellectual and Developmental Disabilities 144th Annual Meeting, Pittsburgh, PA.
• Hall, S., Lahti Anderson, L., & Pettingell, S.L. (2023, June). Work-Life During the COVID-19 Pandemic: Experiences of DSPs and Supervisors. Concurrent session at the American Association on Intellectual and Developmental Disabilities 144th Annual Meeting, Pittsburgh, PA.
• Hall-Lande, J., Pettingell, S., & Anderson, L. (2023, March). Promoting health and wellness for direct support professionals. Poster session at the Art and Science of Health Conference, Colorado Springs, CO. https://publications.ici.umn.edu/posters/health-wellness-dsps/main

Using smart home technology to enhance the quality-of-life of persons with intellectual and developmental disabilities.

Study 4

Investigators

Principal Investigator: Brian Abery

Co-investigators: Renáta Tichá, Amy Hewitt

Overview

The purpose of this study is to investigate the effectiveness of Smart Home/Smart Living Technology (SMLT) on the well-being, independence, self-determination, and social connectedness of adults with IDD. The study will provide initial data on differences in the number of staff and staff hours necessary to support persons with IDD in traditional versus SMHT-equipped homes. It will examine the relation between SMLTs and the personal goals of participants related to the aforementioned outcomes as well as the contextual factors of using such technologies.

Why this mattered

HCBS has typically involved supports focused on teaching skills to individuals, providing staff to support persons with activities they cannot perform independently, and making environmental adaptations. To carry out the HCBS mandate a stable, high-quality workforce is needed. Unfortunately, a substantial body of evidence indicates there continues to be a shortage of qualified DSPs (PCPID, 2017; PHI, 2014; BLS, 2015) with staff turnover rates, especially during the first year of service, extremely high (Bogenshutz, et al., 2014). This has been exacerbated by the recent pandemic. However, it is not just the shortage or the lack of competencies of staff that results in the community living experiences often failing to meet the “normalization” criteria set forth almost fifty years ago by Wolfensberger, et al (1972). The behavior and mere presence of DSPs too often limits opportunities for persons with IDD to be independent, experience self-determination, and access the community (Brown & Brown 2009; Finlay, et al., 2008). Given what is known about facilitating active participation in the community, and the difficulties experienced in providing a stable, qualified workforce, new paradigms for the provision of community-living supports are needed. To meet these challenges, approaches will need to be person-centered maximizing independence, providing supports only when necessary and in the least intrusive manner, allow staff to effectively support greater numbers of individuals, and appropriately balance risk and opportunity. One approach to enhancing the current state of affairs is the adoption of smart home/smart living technology (SMLT).

Key findings

What are the most commonly targeted outcomes in SMLT interventions involving PWIDD?

Among the main outcomes considered in the analysis of 101 research articles, independence/autonomy was the most frequently addressed outcome, accounting for approximately 42.57% of published papers. Following closely was social/community inclusion, which constituted around 30.69% of the papers. Employment and daily living activities were considered almost equally, making up 18-20% of the published literature in this area. Health and well-being was another important outcome, appearing in around 17% of the research. On the other hand, self-determination was the least considered outcome, representing somewhat less than 6% of published papers.

To what degree does research support the efficacy of SMLT to support quality of life?

There was a range of outcomes of published articles with significant outcomes reported for independence/autonomy (5 articles; p-value range 0.0001 - 0.0364), education (p-value < 0.001), social/community inclusion (3 articles; p-value range 0.00 - 0.05), employment (3; p-value range <0.001 - <0.05), daily living activities (2 articles; p-value range <0.001 - 0.04), health and well-being (p-value <0.001 - 0.04). A number of articles in the published research reported mixed outcomes: independence/autonomy (6 articles; significant p-values range 0.00 - 0.05), health and well-being (3 articles; significant p-values < 0.001 - 0.046), employment (4 articles; significant p-values range <0.001 - 0.05), daily living activities (significant p-value = 0.03), other: education (significant p-values range 0.01 - 0.05), other: speech intelligibility (significant p-values range <0.001 - <0.01). When effect sizes were reported, they ranged from 0.20 to 2.06. An effect size of 1.04 was found relating to social and community inclusion. Effect sizes ranged from 0.89 to 2.06 for the independence/autonomy outcome. For the employment outcome, effect sizes ranged from 0.70 to 1.0. In addition to studies that reported significant outcomes, many studies reported descriptive or non-statistically significant findings..

Overall Scoping Review Findings

Overall, there is some support that the use of SMLT has the potential to contribute to the quality of life outcomes experienced by people with IDD. Findings, however, have a number of limitations based on small sample sizes and the use if non-experimental designs. There continues to be a need for additional high-quality, methodologically sound research (RCTs and Regression Discontinuity Designs) with samples of sufficient size to convey adequate power to determine the proximal and distal impact of SMLT.

To what degree do caregivers who responded to the FINDS survey use SMLT to support and enhance the quality of life experienced by people with IDD?

The purpose of this secondary data analysis based on the FINDS study included in the RTC/CL was to explore the extent to which there is an association between SMLT accessibility, utility, and unmet needs and the characteristics of individuals with IDD and their families, including race, primary spoken language, age, region of residence, and socio-economic status. Primary findings suggest that overall, caregivers who report that their family members with IDD are younger, have a higher education level, have greater health-related needs, and are employed, are more likely to report technology as being more accessible or having more utility. Being on a waiting list for home and community-based services was identified as being associated with having a high level of unmet technology needs. Implications for policy and future research are discussed.

What is the impact of technology on direct support professionals (DSPs) and frontline supervisors (FLSs)?

DSPs and FLSs (2,584) responded to questions about the impact of technology on themselves and those whom they supported during the COVID-19 pandemic. Between one-half to two-thirds of DSPs and FLSs felt very confident with using different types of technology to support individuals with IDD during the COVID-19 pandemic. These technologies included video conferencing (57% felt very confident), remote home monitoring (49%), and medication dispensing (67%). High confidence was also reported for general app-based technology such as social media (59%) and transportation (60%). Participants reported that 62% of the people with disabilities whom they supported used devices for social media and video conferencing (57%). They also indicated that the people they supported used technology to access transportation (26%), dispense medication (20%), and for remote home monitoring (15%).

Differences between FLS and DSP perceptions of technology support and use.

No significant differences were found between DSPs and FLSs concerning the extent to which they felt supported by their employers to adopt and use technology as part of providing supports to people with IDD. However, DSPs were slightly more likely to report that their employer provided a lot of support than did FLSs (35% vs. 30%). Conversely, more FLSs felt their employer provided only a little support (20% vs. 16%) concerning adopting and using technology. Significant differences were evident between FLSs and DSPs related to knowing how to get support for technology use. FLSs were more likely to know with whom to talk if the technology they used was not working properly (81% vs. 69%). DSPs reported being uncertain than FLSs as to where to find technology support or know when to get help (31% vs. 19%).

DSPs (41% vs 21%) were significantly more likely than FLSs to report that there were no real changes in their own use of technology since the beginning of the COVID-19 pandemic. They were also more likely than FLSs to report that the use of technology on the part of people with disabilities they supported had not changed appreciably (41% vs 32%) and were also more likely to report that technology had no impact on their work (32% vs 21%). Conversely, FLSs were more likely than DSPs to report that technology had a somewhat positive impact on their work (41% vs 34%) and report using technology a lot more frequently since the beginning of the pandemic (47% vs 27%) than DSPs. Similar differences were found concerning FLS and DSP perceptions as to changes in technology use since the beginning of the pandemic of the people they support with FLSs more likely to report increased technology use (33% vs 20%).

Key products, publications, and reports

• Unholz-Bowden, E., Wu, Y., Abery, B.H. & Anderson L.L. (2023). Technology Access, Utility, and Unmet Needs: Results from the Arc's FINDS Survey. [Article submitted for publication].
• Mahmoudi, M., Farrington, M., & Abery, B.H. (2023). The impact of technology on the lives of people with intellectual disabilities: A systematic review of the literature, [Article submitted for publication].
• Pettingell, S.L., Anderson, L.L., Bershadsky, J., Hewitt, A, Abery, B.H., & Zhang, A., (2023). An Examination of Direct Support Professionals and Frontline Supervisors Use of Technology During COVID-19 Pandemic. [Article submitted for publication].
• Tichá, R., Kramme, J.E.D., Smith, J.G., Farrington, M., Lopp, M., Abery, B.H., Cakir-Dilek, B., & Nyce, A., (2023) (article accepted for publication). Interventions Used with the Direct Support Workforce in Home and Community-Based Settings: A Scoping Review. Inclusion.

Increasing employment outcomes and enhancing effectiveness through data-based feedback with employment consultants and organizations.

Study 5

Investigators

Principal Investigator(s): Julie Bershadsky, PhD, John Butterworth, PhD

Co-investigator(s): Alberto Migliore, Oliver Lyons

Overview

Employment consultants provide critical linkages between employers and job seekers with IDD. This study seeks to improve employment outcomes for individuals with IDD through a mixed methods design examining individual and organizational factors. Conducted in three phases, both quantitative and qualitative analysis will provide the foundation for developing an organizational-level pilot to improve employment consultant and organizational decision-making, service quality, and employment outcomes through data-based feedback. Each phase is informed by the previous activity and findings and provides a new lens for evaluating effective employment support practices.

Why this mattered

Despite the prevalence of research backing practices shown to be effective in supporting people with IDD to find and keep competitive, integrated employment, the implementation of these research-backed practices by employment consultants remains low. This study provided insight into who employment consultants are and how they spend their time. Understanding how these factors influence employment consultants is an important step to increasing the adoption and use of current standards of practice, and these findings provided the foundation for a pilot to try to improve implementation of effective employment strategies within teams of employment consultants. Additionally, the research team quickly pivoted to phase 2 of this study in response to the COVID-19 pandemic in spring 2020, instead conducting interviews with employment consultants to understand their experiences of providing employment services during that time.

Key findings

• Employment consultants are a diverse population with regard to their demographics, their job descriptions, and how they spend their time. Employment consultants consistently spent large portions of their workday engaged in administrative activities (i.e., paperwork, reports, charting, billing), which limits their ability to interact with job seekers and provide recognized employment support best practices.
• While no major changes emerged in the frequency of implementation of the practices targeted for improvement when employment teams used the data-enabled feedback tool ES-Coach, the participants reported positive results in other aspects of their operations. The coaching calls helped managers focus on the goals, identify catalysts, and identify potential obstacles for goal achievement. ES-Coach data helped them back up their decisions about departmental goals when interacting with their organizational leadership, and back up their conversations with state funding agencies
• Policy responses of state governments and agencies had an influence on employment consultants’ experience of providing services in the early days of the COVID-19 pandemic. How a state responded to the pandemic could support or impede flexibility and innovation in service provision, maintain or inhibit maintenance of employment staff, and enhance or restrict the ability of employment providers to provide services at all.
• During the start of the COVID-19 pandemic, employment consultants changed the types of employment supports they provided and the ways in which they provided supports. The adaptations and innovations made to employment services during the pandemic, especially regarding remote services, offer new and innovative approaches to helping people with IDD find and keep employment beyond the pandemic.

Key products, publications, and reports

Peer-reviewed articles

• Butterworth, J., Winsor, J., Kamau, E., Migliore, A., Mahoehney, D., C., (in press) The State of Employment for People with IDD: Implications for Practice, Policy and Equity Intellectual and Developmental Disabilities. Intellectual and Developmental Disabilities.
• Butterworth, J., Migliore, A., Lyons, O., Mahoehney, D., Eastman, J., Miles, B., Foos, P., & Zalewska, A. (in press). Supporting employment consultants to implement supported and customized employment. Intellectual and Developmental Disabilities.
• Lee, S., Mahoehney, D., Nye-Lengerman, K., & Butterworth, J. (under review). State-Level Policy Regarding Employment Supports for People with Intellectual and Developmental Disabilities in the Wake of the COVID-19 Pandemic. Journal of Disability Policy Studies.
• Mahoehney, D., Lee, S., Bershadsky, J., & Butterworth, J. (in press). How did employment consultants adjust and innovate services to respond to the COVID-19 pandemic? Journal of Vocational Rehabilitation.
• Migliore, A., Miles, B., Fleisig, M., Gentry, J. (2023) Supporting Employment Consultants Leveraging Data to Deliver Quality Services and Outcomes. Journal of Vocational Rehabilitation, 58(3), 271-277. https://content.iospress.com/articles/journal-of-vocational-rehabilitation/jvr230015
• Migliore, A., Butterworth, J., Nye-Lengerman, K. (2022) Rethinking Management Information Systems for Scaling up Employment Outcomes. Journal of Disability Policy Studies, 33(2) https://journals.sagepub.com/doi/pdf/10.1177/10442073211043518
• Migliore, A., Petrick, M., Dierks, K., Finkle, P., Suyer, A., (2022), Leveraging Electronic Documentation Software to Improve Employment Outcomes of job seekers with disabilities. Journal of Vocational Rehabilitation, 56(30), 231-236 https://content.iospress.com/articles/journal-of-vocational-rehabilitation/jvr221187
• Migliore, A., Butterworth, J., Pavlak, J., Patrick, M., Aalto, S. (2021) Tracking Metrics that Matter for Scaling up Employment Outcomes. A Panel with Providers. Journal of Vocational Rehabilitation, 54(3), 273-278.
• Nye-Lengerman, K., Gunty, K., Butterworth, J., & Migliore, A. (under review). Lessons Learned about Practices Employment Consultants Use to Support Job Seekers with Intellectual and Developmental Disabilities. Developmental Disabilities Network Journal.

Briefs and Other Publications

• Butterworth, J. (2023). Employment: The Multiplier Effect. IMPACT, 35(3) March, 2023. https://publications.ici.umn.edu/impact/35-3/employment-the-multiplier-effect
• Butterworth, J. (March, 2023). Employment [video]. State of the Science 2022. University of Minnesota, Institute for Community Integration. https://ici.umn.edu/state-of-the-science-2022
• Butterworth, J. (2022). Employment: Learning from Our History and Building Strong Practices. Frontline Initiative December 2022: Direct support professionals supporting people/s employment.
• Butterworth, J. (2020). Moving Beyond Training: Implementation Support for Employment Professionals. Capstone Newsletter, October 2020. Towson, MD: Council on Quality and Leadership.
• Migliore, A., Nye-Lengerman, K., Lyons, O., Bose, J., Butterworth, J. (2019) Un modello per l’inserimento lavorativo di persone con disabilità intellettiva. L’esperienza degli Stati Uniti. Supplemento a Lavoro Sociale, 19(4).
• Migliore, A., Nye-Lengerman, K., Lyons, O., & Butterworth, J. (2018). Strengthening employment services for job seekers with intellectual and developmental disabilities. Bringing Employment First to Scale (15). Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1021&context=thinkwork
• ThinkWork (2023). Leveraging Data to Deliver Quality Employment Services: Supporting Employment Consultants with ES-Coach. Spotlight on Research. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1252&context=ici_pubs
• ThinkWork (2022). Supporting employment consultants in their work with job seekers: A longitudinal study. Spotlight on Research. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1140&context=ici_pubs
• ThinkWork (2020) A comprehensive model of employment support. Bringing employment first to scale, Issue 6. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1104&context=ici_pubs
• ThinkWork (2020) Building trust. Bringing employment first to scale, Issue 1. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1099&context=ici_pubs
• ThinkWork (2020). Getting to know job seekers. Bringing employment first to scale, Issue 2. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1100&context=ici_pubs
• ThinkWork (2020). Supports planning. Bringing employment first to scale, Issue 3. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1101&context=ici_pubs
• ThinkWork (2020). Finding tasks and jobs. Bringing employment first to scale, Issue 4. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1102&context=ici_pubs
• ThinkWork (2020). Support after hire. Bringing employment first to scale, Issue 5. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1103&context=ici_pubs

Conference Presentations

• Migliore, A., Mahoehney, D., (2023) Supporting Employment Consultants to Implement Quality Supported and Customized Employment. AAIDD Annual conference, Pittsburg, PA, June 08, 2023.
• Migliore, A., Miles, B., Gentry, J. (2022) Beyond training: Leveraging Data to Deliver Evidence-Based Employment Supports and Improve Job Outcomes. Reinventing Quality Conference, Baltimore, MD, August, 1 2022.
• Migliore, A., Miles, B., Fleisig, M. (2022) ES-Coach. Supporting employment programs leveraging data to deliver quality services and outcomes. APSE 2022, Denver, CO, June 13, 2022.
• Migliore, A., Petricks, M., Dierks, K., Finkle, P., Suyer, A. (2021) Leveraging Electronic Documentation Software to Improve Employment Outcomes. A Panel Discussion. APSE 2021 Online, June 16, 2021, https://matchboxvirtual.com/2021-apse-virtual-conference-schedule/
• Migliore, A., Dierks, K., (2021) Leveraging data for improving job seekers’ employment outcomes. Therap National Conference. Online, February 3, 2021.
• Butterworth, J., Migliore, A., Pavlak, J., Aalto, S., Petrick, M. (2020) Tracking metrics that matter for scaling up employment outcomes. APSE 2020 Online, June 29, 2020.
• Migliore, A., (2019) Key Metrics for Effective Employment Support. AUCD, Washington DC, November 18, 2019
• Migliore, A. (2019) Identifying Key Metrics for Effective Employment Supports. IOWA APSE chapter, Des Moines, IA, September 17, 2019.
• Migliore, A., Nye-Lengerman, K., (2019) Identifying Key Metrics for Effective Employment Supports. APSE, St Louis, KS, June 19, 2019.
• Migliore, A., Nye-Lengerman, K., (2019) Strengthening the quality of supported employment services. European Union of Supported Employment (EUSE). Amsterdam, Netherland, May 29, 2019.
• Nye-Lengerman, K., Migliore, A., (2019) Using technology in the field to enhance effective employment support practices and organizational capacity. European Union of Supported Employment (EUSE). Amsterdam, Netherland, May 29, 2019.

Engaged Aging: Social inclusion & retirement for older adults with intellectual and developmental disabilities.

Study 6

Investigators

Principal Investigator(s): Julie Bershadsky (PI), Roger Stancliffe (co-PI)

Co-investigator(s): Renáta Tichá, Julie Kramme, Lynda Lahti Anderson

Overview

Social inclusion refers to the development and maintenance of relationships and connections in the community, participation in community organizations, and performing valued roles in the community (Amado et al., 2013). It is critical to well-being at every stage of life. Social isolation can occur at any age, but it can be at particular risk as people leave employment and pursue retirement. This study seeks to gain new knowledge and identify effective strategies to support socially inclusive aging and retirement for people with IDD.

This study is designed to increase the social inclusion of older adults with IDD through improved and more precise knowledge about retirement for such persons, and refinement of scalable model for socially inclusive retirement. This study has three primary goals: 1) examine retirement activities and outcomes; 2) explore experiences of social inclusion and retirement; 3) develop, test, and evaluate socially inclusive retirement strategies.

Why this mattered

There is a significant gap in supporting social inclusion and community living among aging adults with IDD to achieve an active, socially inclusive retirement lifestyle. People with IDD tend to have few friendships and experience a high incidence of loneliness and isolation, and an increasing percentage of older people use segregated day programs or participate in no formal activity during the day. This is of concern as it shows that the current situation for older adults is largely passive and segregated, which can result in social exclusion.

Key findings

Phase 1: Secondary data analysis

• Identifying people with IDD in a large Health and Retirement Study data set was difficult for several reasons including survey design and skip patterns which left an insufficient sample of participants that allowed for analysis.
• In a sample of participants with cognitive limitations who were present at the age of 50 when people entered the HRS sample, we learned the following:
  1. People with cognitive limitations (21.9%) were less likely than those without the cognitive limitations group limitations (3.8%) to have ever had paid employment.
  2. Individuals with Cognitive Limitations were significantly more likely to report that they were partially or completely retired than those without Cognitive Limitations (49.3% vs. 33.8%).
  3. They retired at a significantly younger age (51.8 vs. 55.2 years) and had been retired for significantly longer (10.1 vs. 6.7 years).
  4. Participants with cognitive limitations differed from those without cognitive limitations in planning for and experiences with retirement. They were more likely to report thinking ‘hardly at all’ about retirement (27% vs. 36%), were forced into retirement (40% vs. 42%), and were only moderately satisfied in retirement (45% vs. 54%).

Phase 2: Qualitative study

• There appeared to be a strong bias toward attending segregated disability day programs in retirement but only for those who lived in group homes and mostly for those who retired from segregated/sheltered employment.
• In retirement, one of seven retirees from mainstream community employment and all three retirees from facility-based (segregated) employment attended day programs for adults with IDD that also served younger people (i.e., not a retirement day program just for older people with IDD).
• All four people who lived in group homes attended these day programs but none of the other 6 with other types of living arrangements (e.g., own apartment) did so.

Phase 3A: Scoping study

• There were often multiple reasons for retirement across each study’s cohort and for individual participants.
• Push factors (e.g., age, health, problems with people at work, difficult work, job loss) were much more common than pull factors in the decision to retire.
• In some jurisdictions, there was a compulsory retirement age (e.g., 65) after which funding for employment support was no longer available for that person.
• Where retirement planning took place and participants were reported, there were often multiple stakeholders involved.
• The person with IDD almost always took part in planning, but there were still some cases (in 13% of papers) where the person had no role at all.
• Apart from disability staff supporting the person’s sheltered employment, employers were rarely involved in retirement planning.

Phase 3B: Multiple case study

• Participants found the right community group when there was a good match with both the activity and the people in the group.
• Two participants received supports from family members, three received supports from DSPs, and all participants received supports from other members of their group to coordinate activities, help with transportation, learn new skills, and ensure safety.
• Participating in mainstream community groups and developing relationships with their group’s members gave participants a sense of belonging. Participation also led to closer relationships, more opportunities, and increased happiness.
• They made their own decisions, developed new skills, and became more independent.

Phase 3C: Transition to Retirement supplement

• Adaptations for the current US context were provided for each chapter of the book Transition to Retirement.
• In planning a gradual transition to retirement, different considerations are discussed for reduction in days worked from mainstream employment versus sheltered employment.
• Considerations are provided for choosing and finding the right group for an individual, including a match with the activity and the individual’s personal interest as well as a social match with members of the group.
• Considerations are discussed about having a companion attend the group with the individual, including cautions about too many people with IDD or staff as companions.
• We propose that support for and encouragement of encounters with other community group members should be prioritized.
• Seasonal activities will often require reminders, support with logistics, and support to reestablish routines, transportation, and social connections.
• Though in-person participation is the most desirable, there may be circumstances when online attendance is appropriate to maintain a connection with the group when the person cannot attend in person due to a health crisis or other issues.

Key products, publications, and reports

Peer-Reviewed Journal Articles

• Hall, S. A., & Stancliffe, R. J. (under review). Successful participation in mainstream community groups by older US adults with intellectual and developmental disabilities: A multiple case study. Journal of Intellectual and Developmental Disability.
• Anderson, L. L., Hall, S., Kramme, J. E. D., & Stancliffe, R. (2023). Transition to retirement: The lived experiences of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 36(3), 547-557. https://doi.org/10.1111/jar.13078
  • NOTE: This article was chosen by the National Rehabilitation Information Center (NARIC) for inclusion in an issue of Research In Focus which highlights new and interesting findings from NIDILRR-funded studies.
• Stancliffe, R. J., & Hall, S. A. (2023). Social inclusion of adults with intellectual and developmental disabilities: Toward belonging. International Review of Research in Developmental Disabilities, Volume 65: Social and communicative functioning in populations with intellectual disability, 64, 253–306. https://doi.org/10.1016/bs.irrdd.2023.06.002
• Stancliffe, R. J., Nye-Lengerman, K., Kramme, J. E. D. (2019). Aging, community-based employment, mobility impairment, and retirement: National Core Indicators-Adult Community Survey data. Research and Practice for Persons with Severe Disabilities, 44(4). 251-266. https://doi.org/10.1177/1540796919882921
• Stancliffe, R. J., Kramme, J. E. D., & Nye-Lengerman, K. (2018). Exploring retirement for individuals with intellectual and developmental disabilities: An analysis of National Core Indicators data. Intellectual and Developmental Disabilities, 56(4), 217-233. https://doi.org/10.1352/1934-9556-56.5.217

Online Resource Guide

• Stancliffe, R. J., Hall, S. A., & Anderson, L. L. (2023). Transition to retirement: A guide to inclusive practice: Adaptations for the current U.S. context [Website]. Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota. https://ici.umn.edu/products/QSWHGLI1TnuYC2ADaAE9Hg

Literature Review Protocol

• Hall, S. A., Stancliffe, R. J., Riegelman, A., & Bershadsky, J. (2022, August 9). Retirement of adults with IDD scoping study. Open Science Framework. https://osf.io/9fvcp

Other

• Anderson, L. L., Pettingell, S. L., & Stancliffe, R. J. (2022). Retirement for older adults with long-term cognitive limitations. Institute on Community Integration, University of Minnesota. Unpublished manuscript.

Presentations

• Hall, S., & Stancliffe, R. (2023, January). Retirement and end of life for people with IDD. Webinar presentation at the Qualified Intellectual Disability Professional (QIDP) Leadership Conference, The Arc of Illinois.
• Anderson, L. L., Hall, S., Kramme, J., & Stancliffe, R. (2022, June). Retirement: Experiences and perspectives of adults with IDD. Poster symposium at the American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting, Jacksonville, Florida.
• Anderson, L. L., Hall, S., Kramme, J., & Stancliffe, R. (2022, March). What do older adults with IDD think about retirement? College of Education and Human Development Research Day, University of Minnesota, Minneapolis, Minnesota.
• Stancliffe, R. J., Nye-Lengerman, K., Kramme, J. E. D., Anderson, L. L., & Hewitt, A. S. (2019). Retirement, aging and independent mobility in community employment (Abstract). Journal of Intellectual Disability Research, 63(7), 642.
• Kramme, J. Stancliffe, R.J., Nye-Lengerman, K. (2019, June). Aging towards retirement: Mobility as a factor impacting employment. Poster symposium at the American Association on Intellectual and Developmental Disabilities conference. St. Paul, MN.
• Kramme, J., Stancliffe, R.J., Nye-Lengerman, K. (2018, June). Exploring retirement among individuals with IDD in 32 states. Poster symposium at the American Association on Intellectual and Developmental Disabilities conference. St. Louis, MO.
• Hewitt, A., Poetz, C., & Kramme, J. (2018). Aging and Intellectual and Developmental Disabilities. Presentation at the Minnesota ARRM Conference. St. Paul, MN.

National study of needs and characteristics of families and individuals with disabilities (FINDS).

Study 7

Investigators

Principal Investigator: Amy Hewitt

Co-investigator(s): Lynda Lahti Anderson, Sandra Pettingell

Overview

The RTCCL has been involved in three national surveys of family caregivers:

1. FAST fielded in conjunction with PACER (Technical Assistance for Parents (TAPP) regional office) to identify the needs of families of transition-age youth;
2. Family and Individual Needs for Disability Supports Survey (FINDS) 2010 online survey of families and people with disabilities in which we worked with The Arc of the United States to analyze data and develop the technical report; and,
3. FINDS 2017 online survey of families conducted in conjunction with The Arc of the United States.

These studies are one of the only mechanisms to identify specific information on the experiences of families of people with IDD who are not receiving services through state DD agencies and to learn about the economic, social/emotional and overall life experiences of families who have members with IDD. Other national surveys on family caregiving do not collect data in ways that allow the isolation of people with IDD in their samples. This study will build on previous work to refine and field the FINDS once during this RTC/CL cycle.

Why this mattered

Since 2001, more Medicaid LTSS recipients with IDD (58%) have lived in the home of a family member rather than in out-of-home settings (Larson, et al, 2018). It is estimated that as many as 80% of individuals with IDD don’t receive formal supports under the auspices of their state DD agency, meaning that they likely receive all of their supports from family (Larson, et al, 2018). Family caregivers are the backbone of supports and services for people with disabilities in the US. Over 18% of the US population provides supports to a family member with a disability, a chronic illness, or who is aging (National Alliance for Caregiving, 2015). Caregivers of individuals with IDD often have different experiences than caregivers of other groups of people as they usually provide supports over the lifespan of their family member rather than during specific stages of life (e.g., when elderly or post-injury). Supports provided vary widely and include interventions to support people in areas of behavior, health and medical supports (such as therapies), transportation, assistive technologies, and assistance with daily living activities such as preparing meals, personal care, shopping, and so on.

Key findings

• Family caregivers report that supports and services decreased due to the direct support workforce shortage.
• 68% of family caregivers reported that the direct support workforce crisis had negatively affected the supports that their family members received.
• 81% of family caregivers provided more supports due to decreased available supports and services.
• Participants reported that their family members are experiencing various negative effects from the decreased availability of supports, including access to therapies, having work hours cut, losing their job, or having schools/daycares cut hours or close.
• The number of caregivers who reported feeling very or extremely stressed has increased from 48% in 2017 to 54% in 2023.
• Nine in ten caregivers reported some impact on their employment related to their caregiving responsibilities.

Key products, publications, and reports

• Lahti Anderson, L. (2023). Policy Research Brief: The Economic Impact of Being a Family Caregiver. Minneapolis, MN: University of Minnesota, Institute on Community Integration
• Lahti Anderson, L., & Pettingell, S. (2023). Family and Individual Needs for Disability Supports Community Report 2023. University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
• Lahti Anderson, L & Pettingell, S. (2023). Unmet Support Needs Reported by Rural, Suburban, and Urban Family Caregivers. Submitted for review.

The current state of affairs of wages, benefits, turnover rates, vacancy rates, and tenure for the DSP workforce.

Workforce Supplement, Part 1

Investigators

Principal Investigator: Julie Bershadsky

Co-investigator(s): Quinn Oteman, Jack Reagan

Overview

Conduct a new comprehensive systematic literature review that includes new research studies on the essential role and function of DSPs during the COVID19 pandemic and current data regarding wages, benefits and their cost to the worker, turnover rate, vacancy rates, tenure and other key variables.

Key findings

After screening was complete, 14 studies were included in the review and underwent data extraction. It was found that the primary results of the included studies were consistent with other workforce literature. The included studies primarily focused on wages and turnover, with other themes.

Key products, publications, and reports

• Oteman, Q., Reagan, J., Riegelman, A., & Bershadsky, J. (2023, January 3). The Current State of Affairs of Wages, Benefits, Turnover Rates, Vacancy Rates, and Tenure for the DSP Workforce. https://doi.org/10.17605/OSF.IO/9GFQ4

Descriptions of direct support professionals in popular media during the first year of the COVID-19 pandemic.

Workforce Supplement, Part 2

Investigators

Principal Investigator(s): Julie Bershadsky

Co-investigator(s): Sarah Hall, Jerry Smith, Quinn Oteman, Tom Donaghy

Overview

Find and review popular media articles and stories about this workforce during the pandemic in each state to identify and code the ways in which DSPs and their roles are described and then reflect on how and the extent to which these articles and stories increase their value, visibility, and status.

Why this mattered

The direct support workforce is one of the largest occupations in the United States and is essential in ensuring that individuals with disabilities can live, work, and thrive in their communities. While seen as essential to the people they support and those who understand what they do, descriptions of this workforce vary. Mainstream media does not use consistent language to talk about the role of direct support workers. This inconsistency makes it difficult to communicate the value and complexity of the direct support profession. Misunderstandings of what direct support workers do have a negative effect on those who work in this role and the individuals with disabilities they support.

Key findings

• Workers were portrayed in the context of their profession, the workforce crisis, the pandemic, and in relation to families and the people they support.
• The media often described the job duties and professionalization of the workforce.
• Articles about staff shortages and low wages highlighted the effects of the workforce crisis on workers.
• The media emphasized the added stress the pandemic put on direct support workers as they changed how they provided support and made sacrifices to keep people safe.
• Fourteen terms were used to describe the role of the direct support worker: direct support professional, caregiver, home health worker (e.g., home care worker, home health aide, home health care worker), personal care assistant, other (e.g., manager, job coach, group home worker), direct care worker, and certified nursing assistant.
• “Direct support professional,” a title preferred in identifying workers who support individuals with IDD, was the most prevalent term used.

Key products, publications, and reports

• Hall, S., Smith, J., & Oteman, Q. (2023). Representation of direct support workers in popular media. Policy Research Brief, 30(5). Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota. https://ici.umn.edu/products/Ya7F_nbeTVSULZ-AjGqPvA