Community-Based Setting—Quality of Life
A substantial body of research has evaluated the impact of deinstitutionalization on quality of life, behavioral outcomes, life satisfaction, competence in activities of daily living, and challenging behaviors. The studies, regardless of analytical technique or country of origin, find that living in the community yields positive results. Quality of life has many elements. It involves personal health and well-being, a sense of home, a network of friends, the availability of choices, self-respect, and personal fulfillment. These are desired by all people. Researchers have found that quality of life for people with ID/DD involves eight domains (Schalock and Verdugo, 2004):
- Interpersonal Relations: Interactions, Relationships, Supports
- Social Inclusion: Community Integration and Participation, Community Roles, Social Supports
- Self-Determination Autonomy/Personal Control, Goals and Personal Values, Choices
- Human Rights (Respect, Dignity, Equality) and Legal Rights (Citizenship, Access, Due Process)
- Material Well-Being: Financial Status, Employment, Housing
- Personal Development: Education, Personal Competence, Performance
- Emotional Well-Being: Contentment, Self-concept, Lack of Stress
- Physical Well-Being” Health and Health Care, Activities of Daily Living, Leisure
Measuring “quality of life” characteristics to determine the success of deinstitutionalization and to provide feedback to improve the delivery of necessary services and supports in community-based models is an important activity. The NCI 2009–2010 survey shows some of these quality of life characteristics. Figures 2–6 are charts provided from the data collected in the 2009–2010 survey. They illustrate choice and decision making, community inclusion, relationships, and satisfaction (see Human Services Research Institute/ National Association of State Directors of Developmental Disabilities Services, National Core Indicators, 2011).
Figure 2. Proportion of People Who Report Having Friends and Caring Relationships with People Other Than Support Staff and Family Members Figure 3. Proportion of People Who Like Their Home or Where They Live
Figure 4. Proportion of People Who Would Like to Live Somewhere Else
Figure 5. Proportion of People Who Report That They Never Feel Scared in Their Home
Figure 6. The Proportion of People Who Have a Job in the Community by Each Type of Community Employment*
*too few cases to report outcomes by people living in institutional settings
At least four well-regarded meta-analyses of institutional versus community care have been published since 2005. Together, the analyses review more than 150 articles that meet accepted criteria for quality research.
- Lakin et al. (2011) reviewed 38 studies related to changes in adaptive and challenging behavior associated with movement from institutional to community residences. They found that more than two-thirds of the studies showed improvements in adaptive behaviors of individuals in the community.
- Kozma et al. (2009) reviewed 68 studies published in English from different countries since 1997. The work focused on the following categories: (a) community presence and participation, (b) social networks and friendships, (c) family contact, (d) self-determination and choice, (e) quality of life, (f) adaptive behavior, and (g) user and family views and satisfaction. They found that small-scale arrangements are superior to large, congregate options in most domains. Regarding quality of life, they reported that studies showed people in small-scale community-based residences or in semi-independent or supported living arrangements have a better objective quality of life than do people in large, congregate settings. Particularly, people in the small community settings have more choice-making opportunities, have larger social networks and more friends, access more mainstream facilities, participate more in community life, have more chances to acquire new skills and develop or maintain existing skills, and are more satisfied with their living arrangements.
- Walsh et al. (2010), in a meta-analysis of literature published between 1995 and 2005, found that the research showed consistent evidence that smaller settings provided for greater choice, self-determination, and participation in community-based activities. However, they found no evidence for better physical health or material well-being, and little evidence for a relationship between type of setting and employment.
- Stancliffe et al. (2009) used data from the NCI in six states to assess self-reported satisfaction and sense of well-being in a sample of 1,885 adults with ID/DD receiving Medicaid HCBS Waiver services and ICF/DD services. Questions dealt with such topics as loneliness, feeling afraid at home and in one’s neighborhood, feeling happy, feeling staff are nice and polite, and liking one’s home and work/day program. Loneliness was the most widespread problem, and small percentages of people also reported negative views in other areas. The research revealed consistent benefits of residential support provided in very small settings—with choices of where and with whom to live—and to individuals living with family.
The literature reviews indicate that community-based settings, services, and supports are superior to institutional settings in many areas, but certain key elements must be in place in order for the community living experiences to be optimum.
Community Based-Services—Quality ‘Matters’Community Integration and Participation Matters
Table 3 displays information from the NCI 2009–2010 survey. The chart depicts the number of times a person participated in an activity at a regular interval. The scores reveal that the consumers surveyed had a high level of participation in daily life activities reflecting community integration.
Table 3. Activity of People within a Time Period
A Number of times people went shopping in past month
B Number of times people went out on errands in past month
C Number of times people went out for entertainment in past month
D Number of times people went to exercise or play integrated sports in past month
E Number of times people went out to religious services in past month
F Number of times people went on vacation in past year
STATE
A
B
C
D
E
F
N
AVG
N
AVG
N
AVG
N
AVG
N
AVG
N
AVG
AL
325
2.9
298
1.84
321
2
389
2
355
2.5
381
0.3
AR
385
3.9
383
2.39
382
2.7
387
9.3
385
2.4
387
1
DC
351
2.9
346
2.64
344
2.9
342
7.1
343
2.3
342
1
GA
419
4.2
401
2.87
411
2.8
433
4.2
408
2.9
416
0.6
IL
358
2.6
351
2.03
349
1.9
359
6.1
349
1.7
348
0.4
KY
430
3.1
427
1.67
429
2.6
428
4.7
426
1.1
423
0.4
LA
324
3.7
325
2.18
324
2.1
326
4.5
322
2.4
320
0.7
ME
400
6.1
392
5.46
385
3
401
7.3
408
1
407
1
MO
408
3.3
408
2.82
404
2.6
410
4.9
403
1.7
402
0.4
NC
882
4.4
885
2.9
878
2.4
889
6.5
879
2.4
879
0.9
NJ
400
3.1
397
2.26
390
3.3
392
0.9
380
1.2
389
0.5
NY
1,136
4.4
1,126
3.04
1,129
2.3
1,156
4.9
1,132
1.4
1,120
0.8
OH
483
3.3
476
2.65
479
1.9
481
5.2
469
1.9
476
0.8
OK
401
3.8
402
4.09
400
4.4
402
2.5
402
1.5
397
0.6
PA
1,237
4.2
1,220
3.59
1,237
6.7
1,244
0.7
RCOC
593
3.7
591
2.2
593
2.4
593
7.2
599
1.7
593
0.7
TX
1,943
2.2
1,949
1.8
1,958
1.9
1,971
5.1
1,951
2.2
1,939
0.4
WY
390
4.7
386
4.15
385
4.1
388
9.9
385
1.1
381
0.7
Total
10,865
3.7*
10,763
2.81*
9,984
2.5*
10,984
5.5*
10,341
1.7*
10,844
0.7*
* average of averages
N=Number of Individuals
Source: Compiled from tables 1–7 of the NCI 2009–2010 survey.
Additional Consumer Survey scores may be found at:
http://www2.hsri.org/docs/NCI%20CS%2009-10%20FINAL%20Report.pdf
The Quality of the Community Care Matters
Physical presence in the community is not the same as integration and inclusion. Moving people from an institution to the community does not automatically result in positive impacts. For example, Kozma et al. (2009) note that results vary even within service models of the same type, depending on service characteristics. This implies that the shift from institutional care to community living does not guarantee a better outcome for all residents. In addition to changing where people live, it is critical to have the skilled staff necessary to support individual service requirements and goals.
Individual and Personalized Supports Matter
Kozma et al. (2009) found that people with higher support needs—whether because of the nature of their intellectual and physical disabilities or their challenging behavior or social impairment—often experience outcomes that are not as good as people who are more independent and have less complex medical or behavioral needs. However, demonstration projects have shown that it is possible to greatly increase the level of outcomes for people with the most severe disabilities to a level higher than achieved in any institutional setting. Three factors are necessary to create real opportunities for people with more severe disabilities in community settings: available activity, available personal support, and effective assistance (Mansell, 2006).
Table 4. The Proportion of People Who Report Going to a Day Program or Some Other Daily Activity
State
N
Overall
In State
In Institution
In Community-Based
In Ind. Home
In Parent’s Home
Significantly Above Average
WY
202
97%
n/a
96%
n/a
95%
AL
327
95%
n/a
94%
n/a
98%
NJ
258
93%
n/a
93%
n/a
n/a
KY
275
91%
n/a
94%
n/a
79%
IL
237
84%
92%
91%
53%
85%
Within Average Range
NY
859
73%
n/a
75%
48%
77%
DC
247
73%
n/a
75%
65%
66%
AR
244
72%
87%
76%
55%
72%
RCOC
422
71%
91%
84%
34%
55%
OH
368
69%
n/a
89%
52%
67%
ME
294
65%
n/a
67%
26%
n/a
NC
553
65%
n/a
77%
42%
64%
LA
213
62%
77%
80%
45%
51%
Significantly Below Average
GA
328
61%
n/a
81%
44%
54%
TX
723
57%
74%
n/a
n/a
48%
PA
968
56%
87%
78%
29%
48%
MO
255
51%
79%
48%
48%
56%
OK
197
41%
n/a
51%
32%
n/a
Total
6,970
71%*
84%*
79%*
44%*
68%*
Source: Consumer Outcomes – Phase XII Final Report 2009-2010 Data.
Community-Based Consumer Choice Matters
One of the most important indicators of a quality life in the community is the extent to which the person with ID/DD is empowered to make decisions on the issues that his or her life.
Again, we look to the NCI 2009–2010 survey for the key indicators reflecting the extent to which community residents participate in decision-making activities, have a voice in their daily schedule, and are able to choose who will provide professional support and services.
Table 5. Proportion of People Who Indicate the Option of Choice in Activities
A Proportion of people who chose where they live
B Proportion of people who chose the staff who help them at home
C Proportion of people who chose their day activity
D Proportion of people who choose how to spend their free time
E Proportion of people who choose what to buy with their spending money
F Proportion of people who chose their roommates
STATE
A
B
C
D
E
F
N
%
N
%
N
%
N
%
N
%
N
%
AL
436
16%
171
15%
315
25%
444
91%
440
89%
429
7%
AR
385
41%
236
81%
181
71%
386
88%
387
90%
385
39%
DC
330
49%
211
64%
212
60%
357
78%
358
84%
312
48%
GA
423
64%
153
69%
196
77%
437
98%
436
96%
416
61%
IL
330
47%
160
71%
200
67%
360
87%
355
85%
333
40%
KY
425
65%
195
56%
252
88%
430
97%
427
96%
428
35%
LA
317
33%
184
75%
133
48%
321
88%
320
83%
323
37%
ME
391
55%
266
70%
195
85%
407
97%
406
95%
385
45%
MO
390
34%
265
63%
146
61%
411
94%
406
87%
380
27%
NC
864
42%
555
58%
459
62%
896
88%
895
88%
866
35%
NJ
400
33%
250
52%
250
30%
394
97%
393
94%
393
17%
NY
1,088
46%
632
70%
702
59%
1168
89%
1,157
89%
1097
36%
OH
487
49%
219
88%
246
80%
493
91%
493
89%
488
54%
OK
344
53%
401
68%
185
60%
402
93%
402
86%
375
52%
PA
1,205
44%
440
45%
444
57%
1324
94%
1,306
88%
1183
42%
RCOC
544
43%
455
80%
409
48%
600
92%
598
91%
562
32%
TX
1,814
15%
421
43%
450
59%
1981
79%
1,968
74%
1934
22%
WY
359
89%
171
81%
193
93%
388
97%
388
96%
384
84%
Total
10,532
45%*
5,385
64%*
5,168
63%*
11,199
91%*
11,135
89%*
10,673
40%*
* average of averages
N=Number of Individuals
Source: Compiled from tables 8–15 of the NCI 2009–2010 survey.
The NCI 2009–2010 survey results clearly show that people living in the community have increased autonomy and decision-making opportunities. Particularly meaningful are the questions in the survey indicating choice in relation to personal finance and staffing.