Institutions inDetail

Institutions inDetail

Institutions inDetail

This section of the Deinstitutionalization Toolkit includes the supportive detail on the subject of Institutions. The research and detailed information are intended to provide background for the Deinstitutionalization Toolkit:

INSTITUTIONS – inDETAIL

Large State Institutions

Large Institutions: Trends and Populations

The peak of institutionalization for people with Intellectual disabilities and developmental disabilities (ID/DD) was in 1967, when 194,650 people with ID/DD nationally were housed in large designated state institutions. Figure 1 shows that by 2008, this number had been reduced to 32,909 (Lakin et al., 2010).

An additional 33,850 people with ID/DD were housed in state psychiatric facilities in 1967, but by 2009, this number had been reduced to 765. When addressing the institutionalization of people with ID/DD, it is therefore reasonable to focus our research on large state and nonstate facilities for people with ID/DD.

Figure 1: Average Daily Census of People with ID/DD in Large State ID/DD Facilities, 1950–2009

Line chart showing the average daily census of people with ID/DD in large state ID/DD facilities. In 1950, the average daily census was 124,000. This number rose steadily until 1967, when it reached 195,000. It has been decreasing consistently since that time, but at a slowing rate of decrease. In 2009, the average daily census was 32,909.

Source: Data from Lakin et al., 2010

Trends in the average daily census mask the dynamics of the movement to and from state institutions. New admissions have not stopped. Between 2008 and 2009, it is reported that 3,111 people were discharged and 870 had died. However, during the same period, reports indicate that 1,981 were admitted (Lakin et al., 2010). Thus, it is important to focus not only on moving people out of institutions but also on reducing new admissions.

Large Institutions: Population Characteristics

The population of people served in large (more than 16 residents) state institutions has changed since 1977, when the institutional population was more than four times what it is today. Table 1 shows the following information:

  • The population has aged. The proportion of large state facility residents 21 years or younger declined dramatically between 1977 and 2008, from 36 percent to less than 5 percent. At the same time, the percentage of residents over 40 (ages 40 to 62 and 63 and older in table 1) increased dramatically, from 23 percent to 73 percent.
  • The percentage of people with more significant levels of intellectual impairment has increased. Currently, 58 percent of institution residents have a profound intellectual impairment, compared with 46 percent in 1977.
  • The type and level of assistance has changed. The percentage of residents with behavior disorders has increased substantially, and a higher percentage of residents need supervision with daily activities such as walking, eating, dressing, toileting, and communicating.

Table 1: Characteristics of Residents of Large State ID/DD Facilities, 1977 and 2008

(Data for 2009 are not available)

 

1977

2008

 

151,112

35,035

Gender-Male

57%

63%

Age

 

 

0–21

36

5

22–39

41

23

40–62

19

61

63+

4

12

Level of Intellectual Disability

 

 

Mild/No ID

10

14

Moderate

16

12

Severe

28

16

Profound

46

58

Additional Conditions

 

 

Cerebral Palsy

19

23

Behavior Disorder

25

52

Psychiatric Disorder

NC

52

Needs Assistance or Supervision with:

 

 

Walking

23

39

Eating

21

51

Dressing

56

53

Toileting

34

57

Communicating

44

58

Source: Lakin et al., 2009

Comparison of the “Severity of Disability” of People in an Institution and in the Community

The residents of institutions in the United States vary in age, level of intellectual disability, number of coexisting conditions, and functional limitations. Typically, they include people who have significant and complex medical needs, behavioral issues, and psychiatric disabilities, as well as people who have grown old in the institution.

Research has revealed these two important facts about the population:

  • More people with extensive support needs are served in the community than in institutions.
  • A higher percentage of people in institutions have intensive support needs.

These facts about institutional populations present two important ideas about deinstitutionalization. The first indicates that people with extensive support needs can be served effectively in the community. The second affects the cost estimates for serving them. As discussed in the “Costs” topic area of the Deinstitutionalization Toolkit, costs are associated with a variety of factors, including level of need. For more information on this subject, see Section 6 of the Deinstitutionalization Toolkit.

Opponents of deinstitutionalization claim that people in institutions are “more disabled” than those in the community, and thus the track record of success of community living does not apply to those still in institutions. They claim that people remaining in institutions have such significant complicating conditions that either they cannot be supported in the community or the cost of supporting them in the community exceeds the institutional cost.

Table 2 shows that the data substantiate the claim at this point in California institutions, where a higher proportion of people who remain in institutions are older, have more profound intellectual disabilities, have more complicating conditions, and require more assistance than those living in the community. As the number of people living in institutions has been reduced in the past 40 years, those with functional skills and fewer complicating factors generally were discharged first. As a result, the 32,909 people living in state institutions are, on average, “more disabled” than the 436,000 who are receiving state support and living in the community.

Table 2: State of California Department of Developmental Services Characteristics of Clients in Developmental Center Compared with Clients in the Community, December 2007

Developmental Center Clients

Description

Community
Clients

n

Pct

n

Pct

1,082

41%

Have Cerebral Palsy

33,564

18%

349

13%

Have Autism

36,603

19%

1,334

50%

Have Epilepsy

36,553

19%

2,404

90%

Have Medical Problems

51,931

27%

480

18%

Are Technology Dependent

8,653

5%

1,198

45%

Take Behavior-Modifying Drugs

31,531

17%

541

20%

Have Severe Loss of Sight

15,357

8%

206

8%

Have Severe Hearing Loss

4,558

2%

991

37%

Have Severe Behavior Problem

13,189

7%

1,190

45%

Do Not Walk Well

36,217

19%

528

20%

Do Not Understand Spoken Word

5,872

3%

1,193

45%

Are Violent

21,811

11%

703

26%

Must Be Fed

14,679

8%

1,953

73%

Need Help Toileting

82,356

43%

2,040

76%

Need Special Health Care Item

44,659

23%

1,791

67%

Are Incontinent

62,713

33%

1,190

45%

Are Self-Injurious

24,954

13%

1,099

41%

Destroy Property

17,748

9%

1,533

57%

Have Unacceptable Social Behavior

43,263

23%

913

34%

Will Run Away

33,503

18%

Levels of Intellectual Impairment

 

 

8

0%

Not MR

49,549

26%

449

17%

Mild

72,416

38%

238

9%

Moderate

32,152

17%

370

14%

Severe

14,614

8%

1,585

59%

Profound

9,256

5%

20

1%

Unknown

12,865

7%

Number of Special Conditions or Behaviors

 

 

1,428

54%

None

174,647

92%

360

14%

One

9,685

5%

285

11%

Two

3,951

2%

597

22%

Three or More

2,569

1%

Source: State of California, Quarterly Client Characteristics Report, December 2007. http://www.dds.ca.gov/FactsStats/docs/Dec07_QRTTBLS.pdf

The proportions can distort an important reality. The California data indicate that vastly larger numbers of people with ID/DD and extensive needs for health or behavioral support are living in the community rather than in institutions. For example, although 59 percent of an institution’s residents have profound intellectual impairment compared with 5 percent of community residents, there are only 1,585 people with profound intellectual impairment in institutions compared to 9,256 in the community.

A Human Service Research Institute (HSRI) study confirms these findings. Utilizing the Support Needs Index (SNI), a well-established metric for needs assessment, researchers compared the 156 individuals living at the Southeastern Virginia Training Center (SEVTC) with a sample of people receiving services under the Home Community-Based Services (HCBS) Waiver program. They found that the people in SEVTC had a higher average score (111.96, compared with 101.74), but people in the community had a higher maximum level of support needs. In other words, many people in the community had needs equivalent to those at the SEVTC, and some had even more intensive needs (Fortune and Auerbach, 2009).

Table 3 compares the minimum, maximum, and average scores of the total SNI and of each of its component parts, and Figure 2 compares the distribution of SNI scores.

Table 3: Comparison of Support Needs of HCBS Waiver Clients and SEVTC Residents, 2009

 

HCBS Waiver Clients (n=521)

SEVTC Residents (n=156)

min

max

avg

min

max

avg

Home Living Activities, Community Living Activities, Health and Safety Activities)

12

52

30.56

27

42

35.37

Medical Problems

0

22

2.43

0

22

6.32

Behavioral Problems

0

20

4.77

0

20

5.55

Total Support Needs Index*

60

143

101.74

90

124

111.96

Source: Fortune and Auerbach, 2009.

*The SNI is normed to represent support needs with average of 100 and a standard deviation of 15. For more information about the scale, see Fortune and Auerbach, 2009.

Figure 2: Comparison of the Distribution of Scores of the SNI between a Sample of Virginia’s HCBS Waiver Community and SEVTC Residents, 2009

The figure shows two bar charts that graphically display how people with the highest support needs scores live in the community but the average support needs score is higher in SEVTC. The bar chart on the left shows the scores on the support needs index in increments of five points for the 521 people being served in the community. Scores range from 60 to 143, with most scores between 90 and 115. The chart also shows that, in statistical terms, the chart fits the curve of a normal distribution. The bar chart on the right shows the scores for 156 people living in the SEVTC. Scores range from 90 to 124, with most scores between 105 and 125, and no scores over 124. Together, these charts show that people with the highest support needs score (143) live in the community, but people in institutions have scores clustered in a higher range than people in the community.

Source: Fortune and Auerbach, 2009

The University of Minnesota Research and Training Center on Community Living further confirms this finding. Using data from the National Core Indicators in six states in 2006, Lakin et al. (2006) found that “HCBS Waiver finances services for people with a full range of disabilities and support needs, but ICF/DD beneficiaries on average on a number of measures exhibited substantially greater levels of impairment than HCBS recipients. Because of the greater total number of HCBS recipients on most of the same measures there were more HCBS than ICF/DD recipients with substantial impairments.” Table 4 shows the following examples:

  • Fifteen percent of HCBS Waiver recipients were reported to have profound ID, compared with 39 percent of ICF/DD recipients, but of the combined HCBS and ICF/DD samples, 60 percent of the respondents with profound ID were HCBS Waiver recipients (Lakin et al., 2006).
  • In addition, 11 percent of HCBS Waiver recipients were reported to be nonambulatory, compared with 20 percent of ICF/DD recipients, but of the combined HCBS and ICF/DD samples, 70 percent of those who were nonambulatory were HCBS Waiver recipients (Lakin et al., 2006).
  • HCBS and ICF/DD recipients were not statistically different in the proportions with visual impairments, cerebral palsy, autism, monthly or more frequent seizures, or dual diagnoses of intellectual and psychiatric disabilities; or in the prescription of medication for mood, anxiety, or behavior disorders (Lakin et al., 2006).

Table 4: Selected Characteristics of Adults (18 and Older) with ID/DD Receiving Medicaid HCBS and ICF/DD Waiver Services in Six States

Characteristics

HCBS

ICF/DD

Total

N

%

N

%

N

%

Age

 

 

 

 

 

 

Average Age

42.25

45.38

43.77

18 to 54

1,947

83.4

445

77.5

2,392

82.3

55 and older

387

16.6

129

22.5

516

17.7

Total

2,334

80.3

574

22.6

2,908

100.0

Level of ID

 

 

 

 

 

 

Mild

955

40.6

149

25.6

1,104

37.7

Moderate

603

25.7

87

14.9

690

23.5

Severe

352

15.0

110

18.9

462

15.8

Profound

334

14.2

221

38.0

555

18.9

None

48

2.0

4

0.7

52

1.8

(Not Reported)

(58

2.5)

(11

1.9)

(69

2.4)

Reported Total

2,350

80.2

582

19.8

2,932

100.0

Psychiatric Diagnosis

 

 

 

 

 

 

No

1,576

69.4

387

66.7

1,963

68.9

Yes

695

30.6

193

33.3

888

31.1

% of Total

2,271

79.7

580

20.3

2,851

100.0

Autism

 

 

 

 

 

 

No

2,107

93.8

514

93.8

2,648

93.8

Yes

140

6.2

36

6.2

176

6.2

% of Total

2,247

79.3

577

20.4

2,824

100.0

Cerebral Palsy

 

 

 

 

 

 

No

1,939

86.0

472

81.9

2,411

85.2

Yes

315

14.0

104

18.1

419

14.8

% of Total

2,254

79.6

576

20.4

2,830

100.0

Seizure or Neurological Disorder

 

 

 

 

 

 

Disorder reported

735

33.0

240

41.9

975

34.8

1 or more seizures/month

228

10.0

50

9.0

278

9.8

Table 4: Selected Characteristics of Adults (18 and Older) with ID/DD Receiving Medicaid HCBS and ICF/DD Waiver Services in Six States (continued)

Characteristics

HCBS

ICF/DD

Total

N

%

N

%

N

%

Self-Injury

 

 

 

 

 

 

No

1,868

82.1

461

69.2

2,329

79.2

Yes

406

17.9

205

30.8

611

20.8

At least monthly

241

61.6

111

55.0

352

59.4

At least weekly

98

25.1

64

31.7

162

27.3

At least daily

45

11.5

23

11.4

68

11.5

At least hourly

7

1.8

4

2.0

11

1.9

 % of Total

391

65.9

202

34.1

593

100.0

Disruptive Behavior

 

 

 

 

 

 

No

1,488

65.6

361

54.2

1,849

62.9

Yes

782

34.4

305

45.8

1,087

37.0

At least monthly

438

56.6

150

49.3

588

54.5

At least weekly

223

28.8

119

39.1

342

31.7

At least daily

101

13.0

29

9.5

130

12.1

At least hourly

12

1.6

6

2.0

18

1.7

 % of Total

774

71.8

304

28.2

1,078

100.0

Uncooperative Behavior

 

 

 

 

 

 

No

1,477

65.2

401

60.2

1,878

64.1

Yes

788

34.8

265

39.8

1,053

35.9

At least monthly

402

51.3

135

51.1

537

51.3

At least weekly

260

33.2

86

32.6

346

33.0

At least daily

113

14.4

38

14.4

151

14.4

 At least hourly

8

1.0

5

1.9

13

1.2

 % of Total

783

74.8

264

25.2

1,047

100.0

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