Date: April 23, 2012
Report provides overview of findings on any research/data available of the issues of safety for people with DD such as risk vs. choices and life quality in comparison of living arrangements; as well as any change of VA incident reports regarding specific living arrangements. Following reports/researches were identified as referring to the safety issues and reviewed:
- Outcomes of the Robert Wood Jonson Foundation’s National Initiative on Self Determination for Persons with Developmental Disabilities, James W. Conroy, Ph. D et al., Center for Outcome Analysis, 2002,
- Satisfaction and Sense of Well Being Among Medicaid ICF/MR and HCBS Recipients in Six States, Roger J. Stancliffe et al., Intellectual and Developmental Disabilities (Volume 47, Number 2: 63-83, April 2009),
- Attainment of Personal Outcomes by People with Developmental Disabilities, James F Gardner et al., Mental Retardation (Volume 43, Number 3, June 2005)
Regarding any changes of VA incidents reports depending on the living arrangements, that change is relatively difficult to be measured objectively. According to the feedback from the field professionals, the number of VA incidents reported will presumably always be higher in facilities with supporting staff presence simply due to the number of prospective reporters available. From other point of view, the design of databases on VA incidents would not always allow retrieving data based on the living arrangement category – sometimes reports would indicate the place of incident identified (such as day program center or otherwise, for instance) meanwhile the living arrangement of an individual will not be used as an identifying criteria in a database.
However, a contact with local Adult Protection state office of DHS has been established in order to inquire further data sharing opportunities.
Table of Contents
Outcomes of the Robert Wood Jonson Foundation’s National Initiative on Self Determination for Persons with Developmental Disabilities (James W. Conroy, Ph. D et al., Center for Outcome Analysis, 2002) 1
Satisfaction and Sense of Well Being Among Medicaid ICF/MR and HCBS Recipients in Six States (Roger J. Stancliffe et al., Intellectual and Developmental Disabilities, 2009) 3
Attainment of Personal Outcomes by People with Developmental Disabilities, James F Gardner et al., Mental Retardation, 2005 5
Additional resources/documents used for report 5
Outcomes of the Robert Wood Jonson Foundation’s National Initiative on Self Determination for Persons with Developmental Disabilities (James W. Conroy, Ph. D et al., Center for Outcome Analysis, 2002)
The report, which has been kindly shared by Dr. J. Conroy, is a result of 3 years of analysis, research and evaluation of self-determination project. This initiative started in New Hampshire and then was expanded to 18 grantees states. The Center for Outcome Analysis (COA) began evaluation of the national self-determination initiative in 1998, in partnership with Human Services Research Institute. The report analyses “before and after” data for 441 individuals in 6 states (CA, HI, MD, MI, OH, WI).
The impact of self-determination was measured through the Personal Life Quality protocol, with around 37 elements of quality of life, among those: power to make one’s own life choices, psychological and emotional adjustment, challenging behaviors and reduction of such behaviors, attitudes and experience of primary caregivers, integration at various levels, relationships, satisfaction at various levels, etc. COA has collected data on all of these dimensions over a 20 year period for more than 40,000 people, accumulating a national resource of information on outcomes.
Quality of life was measured in several elements, with rating of 1 (very bad) to 5 (very good) for the time periods of “before” self-determination and “now”. The results are presented below, sorted by magnitude of change:
Quality of Life Changes
Life Area / Before / Now / ChangeGetting out and getting around / 3.3 / 4.0 / 0.7
Running own life, making choices / 2.8 / 3.5 / 0.7
Seeing friends, socializing / 3.3 / 3.9 / 0.6
Happiness / 3.6 / 4.2 / 0.6
Overall Quality of Life / 3.6 / 4.2 / 0.6
What s/he does all day / 3.3 / 3.9 / 0.6
Treatment by staff/attendants / 3.8 / 4.4 / 0.5
Comfort / 3.8 / 4.3 / 0.5
Privacy / 3.7 / 4.1 / 0.4
Safety / 3.8 / 4.2 / 0.4
Health care including dental / 3.9 / 4.2 / 0.3
Health / 3.6 / 3.9 / 0.3
Food / 3.7 / 4.0 / 0.3
Family relationships / 3.9 / 4.1 / 0.2
Family Views of Changes
Quality increased the least in some life areas, such as “safety”, “health care”. The report explains it with the prior system emphasis on these areas.
However, this data is worth to be compared with the value system of families, represented in the table below. Participants were asked to identify five most important things for them concerning their relative’s well-being.
* The answers were put onto a “relative importance” scale developed for this study. The most important item was given 5 points, the second most important 4 points, and so on down to the fifth most important at 1 point. The answers were then averaged across all the respondents to produce this graph.
The families expressed their highest values as Health and Safety – which is not really different from the feelings of any parents. The next highest ranked values were “love,” “dignity and respect” and “medical attention.” The five items least valued by respondents to the National Self-Determination Family Survey were “travel/vacations,” “integration/inclusion,” “assistive devices,” “girlfriends/boyfriends” and a “large facility to live in.”
Satisfaction and Sense of Well Being Among Medicaid ICF/MR and HCBS Recipients in Six States (Roger J. Stancliffe et al., Intellectual and Developmental Disabilities, 2009)
In this research self-reported satisfaction and sense of well-being were assessed in a sample of 1,885 adults with intellectual and developmental disabilities receiving HCBS and ICF/MR services in six states (Alabama, Indiana, Kentucky, Massachusetts, Oklahoma and Wyoming). Questions dealt with such topics as loneliness, feeling afraid at home and in one’s neighborhood, feeling happy, feeling that staff are nice and polite, and liking one’s home and work/day program. Loneliness was the most widespread problem. Few differences were evident by HCBS and ICF/MR status. Particularly, well-being of HCBS and ICF/MR for recipients not living with families was compared according to the degree of choice of where one lives, where responds to the questions on loneliness, feeling safe and happy were rendered according to “No choice”, “Some choice” and “Full choice” (please see the table below).
Well Being of HCBS and ICF/MR Recipients Not Living with Family by Choice of Where One Lives
The results showed that those with no choice of where to live were significantly more likely to feel afraid at home, unhappy, to have staff they did not consider nice, and to dislike their home.
Comparisons among HCBS users who lived with parents-relatives or elsewhere: loneliness, being afraid and home, and liking where you live yielded significantly more positive results for those living with family.
Those living with family reported one negative result. Individuals who received in-home support from paid workers reported that staff were less nice and polite compared with those who lived elsewhere. It is not clear why this was the case. One possibility is that, compared with family members who are constant in the person’s life, individuals with intellectual and developmental disabilities living with family may feel less comfortable with paid staff who come and go daily and change over time. Conversely, those who did not live with family may particularly appreciate the human contact provided by support staff.
Among six factors of well being and satisfaction examined in all the analyses, some items were more sensitive to differences in living arrangements than others. Liking one’s home more was significant in all analyses and was associated with HCBS, smaller settings, living with family, choosing living companions and choosing where one lives. Less loneliness was significantly associated with smaller settings, living with family, and choosing living companions. Feeling happy was associated with both choice of where and with whom to live. Feeling less scared at home was associated with living with family. Feeling scared in one’s neighborhood was not significantly associated with living arrangements in any of analyses.
Overall, the self-reported well-being and satisfaction findings document the benefits of residential support provided in very small settings, with choice of where and with whom to live and to individuals living with family.
Attainment of Personal Outcomes by People with Developmental Disabilities, James F Gardner et al., Mental Retardation
The Council on Quality and Leadership in Supports for People with Disabilities developed a person-centered outcome assessment instrument, Personal Outcome Measures (1997). The Council has maintained a database of 3,630 interviews (between August 1993 and December 2002) of Personal Outcome Measures. This research reports findings on the relationships between and among the Personal Outcome Measure and patterns of individual outcome attainment; as well as examines the impact of characteristic variables (disability, organizational size, residential type, or source of program funding) on the individual attainment of personal outcomes.
Participants received support and services from 552 geographically diverse organizations, including 36 states and the District of Columbia. The organizations range from traditional single-site residential/vocational providers to multisite, multiprogram organizations. Variables of the research included primary and secondary disability; primary source of funding (ICF/MR, HCBS, State Pay, Private Pay); living arrangements; number of persons served by the organization; demographics; and findings for each personal outcome. Personal Outcome Measures include 25 items, such as choosing personal goals, choosing where and with whom to live, participation in community life, safety, being free from abuse and neglect, etc – classified into dependent variables under four factors such as Identity, Affiliation, Safeguards, and Health and Wellness.
Investigation of relationship between attainment of outcomes in the domain of Identity (personal choice) and Affiliation and those in Safeguards and Health and Safety identified that choice did not affect the outcome of “people are safe”, but did have a modest relationship to “people are free from abuse”, and a moderate relationship to “people perform different social roles” The results of investigation support the finding that having greater choice does not affect an individual’s safety and only modestly affects an individual’s freedom from abuse and neglect. However, when the three choice outcomes were present (“people choose where and with whom they live”, “people choose where they work” and “people choose services”) an individual was three times more likely to have the outcome of social roles also present. There was evidence that choice of services, residence, or work had a modest impact on the outcomes for either safety or abuse and neglect, but they did have a greater impact on the outcomes of social roles.
Further findings demonstrate that independent living has significantly greater percentage of personal outcomes than did the other arrangements and that supported living was higher than both natural and foster families. Supervised living was significantly lower than the others.
The data analysis of personal outcomes suggests that there are indications of some patterns and relationships:
- Maintaining close ties with natural support systems and having intimate relationships and friends may be the best predictor of personal safety and freedom from abuse and neglect.
- Regardless of severity of disability, no differences were found in outcome factors of Health and Wellness and Safeguard for people supported by the ICF/MR or the HCBS programs. However, people in the HCBS program did achieve significantly more outcomes in Identity and Affiliation than those residing in the ICF/MR settings.
- There appears to be no evidence of an adverse relationship between the outcomes related to safety and freedom from abuse and neglect and the outcomes involving choice – of work, living situation, personal goals, or services. There was no support for the oft-made suggestion that people with disabilities must accept natural trade-offs of health and safety for personal choices.
Additional resources/documents used for report
- Self-Determination for Persons with Developmental Disabilities, RWJF National Program (October, 2007)
- Choosing Independence: An Overview of Cash-and-Counseling Model of Self-Directed Personal Assistance Services (RWJF, 2006)
Contacts established through the report:
- James Conroy, Ph. D., Center for Outcome Analysis,
- Paul Spangler, Ph.D., Licenced Psychologist,
- Elliot Glickman, Program Compliance/Data Management Analyst at Phila. County Dept. Mental Retardation Services
- Sheryl A Larson, Senior Research Associate, Institute of Community Integration, UoM,
- Rosa C. McAllister, M.Ed., Co-Founder & Assistant Executive Director , Networks for Training and Development, Inc.
- Jennifer Kirchen, Minnesota DHS,
- Colleen Wieck, Minnesota Governor's Council on Developmental Disabilities of the Department of Administration
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