Community inDetail, Part 2

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

Bar graph displaying percentage of survey responses by setting, indicating an affirmative response to “having friends other than staff and family”. The percentages are: Overall in State – 73%; In an Institution – 63%; In Community Based – 72%; In an Individual Home – 81%; and In Parent’s Home – 74%.

Figure 3. Proportion of People Who Like Their Home or Where They Live

Bar graph displaying percentage of survey responses by setting, indicating an affirmative response to “Liking home or where they live.” The percentages are: Overall in State – 90%; In an Institution – 83%; In Community-Based – 87%; In an Individual Home – 90%; and In Parent’s Home – 96%.

Figure 4. Proportion of People Who Would Like to Live Somewhere Else

Bar graph displaying percentage of survey responses by setting, indicating an affirmative response to “would like to live somewhere else.” The percentages are: Overall in State – 27%; In an Institution – 39%; In Community-Based – 30%; In an Individual Home – 26%; and In Parent’s Home – 20%.

Figure 5. Proportion of People Who Report That They Never Feel Scared in Their Home

Bar graph displaying percentage of survey responses by setting, indicating an affirmative response to “Never feeling scared in home.” The percentages are: Overall in State – 83%; In an Institution – 79%; In Community-Based – 82%; In an Individual Home – 83%; and In Parent’s Home – 88%.

Figure 6. The Proportion of People Who Have a Job in the Community by Each Type of Community Employment*

Figure 6. The Proportion of People Who Have a Job in the Community by Each Type of Community Employment: 82% overall in state; 85% in community-based; 89% in individual home; 84% in parent's home

*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

         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:

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

        Proportion of people who chose where they live

        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.

National Council on Disability • 1331 F Street, NW, Suite 850 • Washington, DC 20004