Positive Approaches Journal, Volume 11, Issue 2

Koffer Miller, Ardeleanu, Shea | 48-57




Positive Approaches Journal - Volume 2 Title

Volume 11 ► Issue 2 ► August 2022



The Importance of Measuring Changes among Individuals Leaving Institution-Based Care: An Example from the Field

Kaitlin H. Koffer Miller, MPH, Katherine Ardeleanu, MS, LGPC, & Lindsay L. Shea, DrPH, MS



Introduction

In 1999, the United States Supreme Court ruled in favor of the respondents in the watershed disability rights case Olmstead v. L.C. Jonathan Zimring argued the case on behalf of plaintiffs L.C. and E.W. against the state of Georgia for undue institutionalization of persons1 with disabilities in direct violation of Title II of the Americans with Disabilities Act (ADA) of 1990 (Olmstead v. L.C., 1999).  Title II of the ADA states that, “[s]ubject to the provisions of this subchapter, no…individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity”.2 The Supreme Court’s interpretation of Title II of the ADA, the precedent set in the Olmstead decision, and the legal actions that have occurred since 1999 are only pieces of a larger deinstitutionalization movement that has been ongoing since the late 1960’s.3

As deinstitutionalization proceeded, adverse outcomes among individuals who transitioned from institutional settings into communities have been documented. Increases in the reliance upon community-based sources of services and support for mental health and other care needs coupled with increases in the rates of homelessness and criminal justice system interactions have yielded widespread calls to action for improved transitions and system capacity building.4,5 Studies have found that transitioning to community-based care has positive effects on quality of life, including more choice and access to activities.6,7 Emerging research continues to point toward improved outcomes among individuals with disabilities in communities, when compared to institution-based settings, which further underscores the need to identify options for supporting community-based service delivery.

Pennsylvania has put in place multiple efforts to transition individuals from institutional-based settings into community-based care. The Bureau of Supports for Autism and Special Populations (BSASP) within the Office of Developmental Programs (ODP) has been supporting the transition of autistic individuals leaving Pennsylvania institutional settings, such as State Hospitals and State Centers, into one of the two BSASP adult autism programs: the Adult Autism Waiver (AAW) and the Adult Community Autism Program (ACAP). AAW and ACAP provide an array of home-and community-based services including assistive technology, behavioral supports, community supports supported employment, and more.8,9 For ACAP, as a managed care model, in addition to the previously described home-and community-based services, participants also receive their physical health services including doctor’s and dentist’s visits.9 The change in living circumstances, as well as service delivery and utilization coming from an institutional setting into a community, can be a tumultuous transition for an individual and their family and tracking changes in skills and adaptive functioning is critical. To that end, the ODP Clinical Team has implemented the ABAS-3 Adaptive Behavior Assessment System 3rd Edition (ABAS-3)10  to measure the skills associated with daily living among a sample of individuals entering the programs. The purpose of this paper is to determine the proof of concept for measuring differences across ABAS-3 scores among a sample of autistic adults who transitioned from an institutional setting into one of the two BSASP adult autism programs.

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Methods

ODP Clinical Team members completed the ABAS-3 with State Center and State Hospital residents who were identified for transition into AAW or ACAP between August of 2017 and December of 2019. The ABAS-3 was administered before and after individuals transitioned from State Hospitals and State Centers into the programs. The ODP Clinical Team members administering the ABAS-3 included doctoral and master’s level clinicians with extensive experience administering assessment tools and overseeing service delivery to autistic adults. The timeline for completion of the ABAS-3 prior to discharge varied and the administration of the ABAS-3 following discharge occurred within 3 months after the transition from the institution to the community.

The ABAS-3 is a commonly used measurement tool among individuals with intellectual and developmental disabilities (IDD), autism spectrum disorder (ASD), learning differences, and other neurodevelopmental and psychological diagnoses across the lifespan (birth-89 years old).10  Utilizing a tool like the ABAS-3 provides a formalized approach to measuring the successes and challenges experienced by an individual overtime and can be integrated into effective service planning.10 The ABAS-3 is an adaptive behavior rating scale that measures adaptive behavior at a global level (General Adaptive Composite, or GAC); domain level (Conceptual, Social, and Practical); and 11 individual skill area levels.10 The Conceptual domain measures communication skills, including verbal and nonverbal skills, as well as academic capabilities across a range of subject areas.10 This domain also assesses several executive functioning skills, including decision making and impulse control. 10 The Social domain measures social skills and respondents’ ability to successfully engage in community and social activities.10 Lastly, the Practical domain captures the ability to complete daily tasks and self-care activities, such as shopping, bathing, and eating. Scores from this domain also indicate how well a person is able to take care of their health.10 Within the overarching adaptive domains, there are 11 measured skill areas including communication, community use, functional academics, health and safety, home living, leisure, motor, self-care, self-direction, social, and work.10 ABAS-3 raters provide an ability rating, a frequency rating (i.e., 1 = never or almost never, 2 = sometimes, and 3 = always or almost always), and whether guessing was involved in the response.10 For each skill area, the respondent answers 20 to 26 items with higher scores indicating higher functioning in each area.10  The standardized mean score for the GAC and each of the three domains is 100, with a standard deviation of 15. Data were entered into a secure platform for analysis.

Descriptive data were compiled to generate an understanding of the ABAS-3 scores across administrations and across reporters. Overall scores, adaptive score domains and skill area scores were generated for each administration.

Results

A total of nine individuals transitioned from a State Hospital or a State Center to either AAW or ACAP during the time period of this examination. The average age of individuals transitioning was 36 years old. Two individuals only had ABAS-3 measures completed at one timepoint. Most individuals with two ABAS-3 measures completed before and after a transition from a State Hospital or State Center into a AAW or ACAP had a two-year period between their first ABAS-3 and the second ABAS-3. One individual had eight days from their first ABAS-3 to their second ABAS-3.

Among the seven individuals who had ABAS-3 measures completed while in a State Hospital or State Center, there was an average score increase of 1.33, or a slight improvement or increase across the timepoints. Increases in averaged scores across all three adaptive domains were observed. The average conceptual skill area increased by 2 points, the average social skill area increased an average of 2.67 points, and the practical skill area increased an average of 0.44 points. Although overall average scores increased, there was variation across ABAS-3 GAC scores among individuals. Of the seven individuals with ABAS-3 measures at more than one timepoint, ABAS-3 GAC scores did not change for three individuals and ABAS-3 GAC scores changed for four individuals. Among these four individuals, the score changed from below average (score range 80-89) to low (score range 70-79) for one individual and from average (score range 90-109) to below average (score range 80-89) for a second individual. Among individuals with GAC score increases, the score range shifted from low (score range 70-79) to below average/average (score around 90) and from extremely low (scores below 70) to low (score range 70-79).

Discussion

ABAS-3 measures were successfully completed on a small sample of autistic individuals who transitioned from a State Hospital or a State Center to AAW or ACAP. It is noteworthy that this process was implemented through collaborative efforts of the leadership and staff at the State Hospitals and State Centers and at ODP. The forethought and planning to put in places measures of the transition should be applauded, since it represents a step forward in bridging the gap from institution-based care to community-based case.

Overall, there were improvements in overall ABAS-3 GAC score and in skill area scores as well. Although these findings warrant further study and replication, they point toward reinforcing the deinstitutionalization of individuals with disabilities. Further linking these findings to the services and supports received by these individuals during their time spent in a State Hospital or State Center, their transition services, and the services received in community-based programs is a critical next step for this work. Documenting the demographic and clinical characteristics of this group also warrant additional attention, as there may be important differences that point toward documented health inequities across populations and critical markers for needed clinical services and supports.

Limitations of this analysis include a small sample for observing changes in ABAS-3 scores and some variability in the duration between ABAS-3 administrations. ABAS-3 scores were generated pre-and post-a transition out of a State Hospital or State Center and the transition served as the index event. However, the length of time between the ABAS-3 scores before and after the index event varied, especially for one exceptionally short difference (8 days) in time between the first and second ABAS-3 administration. The utility of the ABAS-3 for the intended purpose has not, to our knowledge, been replicated in other research or program practices and continued efforts to assess optimal measures should be considered. Another limitation would be that what services the individuals received when they transitioned into either AAW or ACAP from the State Centers was not analyzed for the purpose of this study. Therefore, it is not known what level of services and supports the individual is receiving which could impact their ABAS-3 score.

Proactive and intentional efforts to understand and document the experiences of individuals who transition from institutional settings into community-based programs should be a priority across the US. Identifying optimal outcomes could point toward promising transition planning and processes and the observation of suboptimal outcomes serves an indicator for areas for focus and improvement in implementing needed services and supports.




References   

1. Musumeci M, Claypool H. Olmstead’s role in community integration for people with disabilities under Medicaid: 15 years after the supreme court’s Olmstead decision. 2014.

2. Americans with Disabilities Act of 1990. In: 1990 AwDAo, editor. Pub L No 101-336, 104 Stat 3281990.

3. Larson S, Ryan A, Salmi P, Smith D, Wuorio A. Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2010. 2011.

4. Franklin MS, Bush C, Jones KA, et al. Inequities in Receipt of the North Carolina Medicaid Waiver Among Individuals with Intellectual Disability or Autism Spectrum Disorder. Journal of developmental and behavioral pediatrics. 2022;doi:10.1097/DBP.0000000000001075

5. Beadle-Brown J, Mansell J, Kozma A. Deinstitutionalization in intellectual disabilities. Current opinion in psychiatry. 2007;20(5):437-442. doi:10.1097/YCO.0b013e32827b14ab

6. Chowdhury M, Benson BA. Deinstitutionalization and Quality of Life of Individuals With Intellectual Disability: A Review of the International Literature: Deinstitutionalization and Quality of Life. Journal of policy and practice in intellectual disabilities. 2011;8(4):256-265. doi:10.1111/j.1741-1130.2011.00325.x

7. Larson S, Lakin C, Hill S. Behavioral Outcomes of Moving from Institutional to Community Living for People with Intellectual and Developmental Disabilities: U.S. Studies from 1977 to 2010. Research and practice for persons with severe disabilities. 2012;37(4):235-246. doi:10.2511/027494813805327287

8. Pennsylvania Department of Human Services (DHS). ​Adult Autism Waiver. Accessed 4 August 2022, https://www.dhs.pa.gov/Services/Disabilities-Aging/Pages/Adult%20Autism%20Waiver.aspx

9. Pennsylvania Department of Human Services (DHS). Adult Community Autism Program (ACAP). 4 August 2022. https://www.dhs.pa.gov/Services/Disabilities-Aging/Pages/ACAP.aspx

10. Harrison PL, Oakland T. Adaptive Behavior Assessment System, Third Edition (ABAS-3). Western Psychological Services; 2015.



Biography

Kaitlin Koffer Miller is the Regional Director of the Autism Services, Education, Resources, & Training Collaborative (ASERT) Eastern Region at the AJ Drexel Autism Institute. Ms. Koffer Miller’s work focuses in policy research as well as qualitative data analyses. Ms. Koffer Miller holds a master’s degree in Public Health from the Dornsife School of Public Health at Drexel University and is a doctoral candidate in Health Policy at the Dornsife School of Public Health at Drexel University

Katherine Ardeleanu, is a PhD student at Drexel University’s Dornsife School of Public Health. She is also a licensed graduate professional counselor and holds a master’s degree in mental health counseling from Johns Hopkins University. Her work focuses on improving access to and quality of mental health services for underserved populations.

Lindsay Shea is a Senior Healthcare Analyst supporting data and policy efforts in ODP’s BSASP. She is also an Associate Professor at Drexel University, and holds a master’s degree in social policy from the University of Pennsylvania and a doctoral degree in health policy from Drexel University.

Contact Information

Kaitlin Koffer Miller, MPH

Regional Director, ASERT Eastern Region

A.J. Drexel Autism Institute

Drexel University

kk629@drexel.edu

Katherine Ardeleanu, MS, LGPC

PhD Student, Health Services Research & Policy

Dornsife School of Public Health

Drexel University

ka928@drexel.edu

Lindsay L. Shea, DrPH, MS

Senior Healthcare Analyst

Office of Developmental Programs, Bureau of Supports for Autism and Special Populations

c-lishea@pa.gov