Health, Social, and Health, Social, and Emotional Well-Being of Emotional Well-Being of Adults with Intellectual Adults with Intellectual

and Psychiatric and Psychiatric DisabilitiesDisabilities

Ruth I. FreedmanRuth I. FreedmanBoston University School of Social WorkBoston University School of Social Work

Sarah Taub & Giusi ChiriSarah Taub & Giusi ChiriHuman Services Research InstituteHuman Services Research Institute

AAMR Annual Meeting, Philadelphia, PAAAMR Annual Meeting, Philadelphia, PAJune 3, 2004June 3, 2004

BackgroundBackground

Emotional and behavioral disorders and Emotional and behavioral disorders and mental illness are “…among the most mental illness are “…among the most common and least understood aspects of common and least understood aspects of health and MR…” (Surgeon General’s Report, health and MR…” (Surgeon General’s Report, 2002)2002)

Prevalence of dual diagnosis (developmental Prevalence of dual diagnosis (developmental disability and psychiatric disabilities/mental disability and psychiatric disabilities/mental disorders) ranges from 10 – 40% disorders) ranges from 10 – 40%

Prevalence of psychotropic medication usage Prevalence of psychotropic medication usage among persons with DD ranges from 30 – among persons with DD ranges from 30 – 50% (varies by type of residence)50% (varies by type of residence)

Background (continued)Background (continued)

Dual diagnosis is often associated with Dual diagnosis is often associated with the presence of behavioral challengesthe presence of behavioral challenges

Presence of MR frequently Presence of MR frequently “overshadows” the symptoms of mental “overshadows” the symptoms of mental disorders (Reiss & Szysko, 1983)disorders (Reiss & Szysko, 1983)

Persons with dual diagnosis face Persons with dual diagnosis face difficulties finding appropriate services; difficulties finding appropriate services; often get caught in-between two often get caught in-between two service systemsservice systems

Prior ResearchPrior Research

Prior research primarily limited to:Prior research primarily limited to:– small, non-probability samplessmall, non-probability samples– residents in institutional facilitiesresidents in institutional facilities– data obtained from administrative data obtained from administrative

recordsrecords

Limited empirical data about:Limited empirical data about:– Community outcomesCommunity outcomes– Services and supportsServices and supports

NCI AnalysisNCI Analysis

NCI analysis based upon:NCI analysis based upon:– Large random sampleLarge random sample– Cross-state data (17 states)Cross-state data (17 states)– Respondents in community and Respondents in community and

institutional settingsinstitutional settings– Data obtained from consumers and Data obtained from consumers and

proxies on physical and behavioral proxies on physical and behavioral health, services and supports, health, services and supports, community outcomescommunity outcomes

Research QuestionsResearch Questions

Do persons with and without dual diagnosis Do persons with and without dual diagnosis differ in terms of:differ in terms of:– Demographic and background characteristicsDemographic and background characteristics– Health and behavioral statusHealth and behavioral status– Services and supports receivedServices and supports received– Social and emotional well-beingSocial and emotional well-being

What factors predict whether or not a person:What factors predict whether or not a person:– has a dual diagnosishas a dual diagnosis– receives clinical services receives clinical services – uses psychotropic medicationsuses psychotropic medications

Type of Diagnosis (n=8501)Type of Diagnosis (n=8501)

n=6,048

71%

n=2,453

29%

MR only Dual dx

Age Groups (n=8350)Age Groups (n=8350)

61.3

38.7

52.547.5

0

20

40

60

80

100

18-44 45+

MR only Dual dx

Level of MR (n=8501)Level of MR (n=8501)

35.8

27.8

17.9

18.4

49.8

27.8

13.6

8.8

0 20 40 60 80 100

mild

moderate

severe

profound

MR only Dual dx

Type of Residence (n=7805)Type of Residence (n=7805)

9.6

38.1

17.2

35.0

10.2

52.8

21.215.7

0

20

40

60

80

100

Specializedfacility

Communityresidence

Independenthome/apartment

Parent/relative' shome

MR only Dual dx

# Additional Disabilities # Additional Disabilities (n=8501)(n=8501)

28.836.6 34.6

40.531.0 28.5

0

20

40

60

80

100

No additionaldisability

1 additionaldisability

2 or moreadditional

disabilities

MR only Dual dx

Functional CharacteristicsFunctional Characteristics

21.915.8 16.5

10.85.3

16.1

0

20

40

60

80

100

Non verbal (n=7837) Non ambulatory(n=8082)

Vision or hearingimpairment (n=8450)

MR only Dual dx

Takes Psychotropic Takes Psychotropic MedicationsMedications

23%

77%

MR only Dual dx

Type of Psychotropic Type of Psychotropic MedicationMedication

75.6

5.9 2.66.5 5.3 4.1

14.419.7

5.410.6

28.321.6

0

20

40

60

80

100

Nomedications

Mood only Anxiety only Behavior only Takes 2types of

meds

Takes 3types of

meds

MR only Dual dx

Presence of Problem Presence of Problem BehaviorBehavior

15.926.6 24.427.6

52.8 47.1

0

20

40

60

80

100

Self-injury(n=1534)

Disruptivebehavior(n=2839)

Uncooperativebehavior(n=2465)

% y

es

MR only Dual dx

Frequency of Health ExamsFrequency of Health Exams

87.8

63.475.2

92.9

67.080.9

0

20

40

60

80

100

Physical exam Dentist visit OB/GYN exam

within past year(n=7543)

within past 6months (n=6460)

within past year(n=2459)

MR only Dual dx

Services & Supports Services & Supports ReceivedReceived

95.7

55.0

18.9

37.0

70.2

17.3

5.7

23.9

97.0

63.8

11.8

76.3 74.3

11.93.9

27.5

0

20

40

60

80

100

svc

coo

rd/

case

mg

mn

t (n

=80

82)

com

mu

nit

yp

art

icip

ati

on

(n=

4403

)

ass

isti

vete

chn

olo

gy

(n=

1231

)

clin

ica

lse

rvic

es

(n=

3740

)

tra

nsp

ort

ati

on

(n=

5839

)

resp

ite

(n

=12

54)

sch

oo

l (n

=29

5)

oth

er

svcs

& s

up

po

rts

(n=

1725

)

MR only Dual dx

Vocational Supports Vocational Supports ReceivedReceived

18.1

8.6

38.5 37.2

19.1

9.5

43.2

36.3

0

20

40

60

80

100

supported employment

(n=1405)

group employment

(n=674)

facility based employment

(n=3023)

non-vocational day

services (n=2784)

MR only Dual dx

Social & Emotional Well-Social & Emotional Well-BeingBeing

70.6

85.1

12.2

82.2 82.7

65.0

84.2

16.3

76.380.9

0

20

40

60

80

100

Hasfriends

(not staffor family)(n=3839)

Has a bestfriend

(n=4466)

Often feellonely(692)

Can seefamily

(n=4134)

Can seefriends

(n=4124)

MR only Dual dx

Sig. (2-sided)

Sig. (2-sided)

Age 0.000 *** Service coord/case mgmt 0.004 *Type of residence 0.000 *** Community participation 0.000 ***

# of additional disabilities 0.000 *** Assistive technology 0.000 ***Mobility 0.000 *** Clinical services 0.000 ***

Communication skills 0.000 *** Transportation 0.000 ***Respite 0.000 ***

Self-injury 0.000 *** School 0.005 *Disruptive behavior 0.000 *** Other services 0.007 *

Uncooperative behavior 0.000 *** Facility-based vocational 0.000 ***

Physical exam 0.000 *** Has friends 0.000 ***Dentist visit 0.005 * Feels lonely 0.000 ***

OB/GYN exam 0.001 * Can see family 0.000 ***Pyschotropic medications 0.000 *** Can see friends 0.016 *

*p<0.05 ***p<0.001

Significant Differences between MR only and Dual Diagnosis GroupsSig.

(2-sided)Sig.

(2-sided)Age 0.000 *** Service coord/case mgmt 0.004 *

Type of residence 0.000 *** Community participation 0.000 ***# of additional disabilities 0.000 *** Assistive technology 0.000 ***

Mobility 0.000 *** Clinical services 0.000 ***Communication skills 0.000 *** Transportation 0.000 ***

Respite 0.000 ***Self-injury 0.000 *** School 0.005 *

Disruptive behavior 0.000 *** Other services 0.007 *Uncooperative behavior 0.000 *** Facility-based vocational 0.000 ***

Physical exam 0.000 *** Has friends 0.000 ***Dentist visit 0.005 * Feels lonely 0.000 ***

OB/GYN exam 0.001 * Can see family 0.000 ***Pyschotropic medications 0.000 *** Can see friends 0.016 *

*p<0.05 ***p<0.001

Significant Differences between MR only and Dual Diagnosis Groups

Dual Diagnosis

Psychotropic Medications

Clinical Services

Odds Ratio Sig. Odds Ratio Sig. Odds Ratio Sig.Intercept 0.03 *** 0.12 *** 0.22 ***

Age 1.01 *** 1.00 0.99 **Gender 1.08 0.99 0.93

Problem behavior 3.39 *** 2.72 *** 2.03 ***Diagnosis -- 10.98 *** 5.24 ***

Total # of additional disabilities 0.90 *** 1.00 1.22 ***Verbal 1.82 *** 1.26 * 0.95

MR LevelMild level of MR 2.40 *** 0.73 ** 0.80 *

Moderate level of MR 1.64 *** 0.88 0.79 *Severe level of MR 1.18 0.97 0.87

Profound 1.00 1.00 1.00

Type of residenceSpecialized facility 2.97 *** 1.96 *** 6.94 ***

Community residence 2.67 *** 1.95 *** 2.99 ***Independent home 2.11 *** 2.28 *** 3.15 ***

Parent/relative home 1.00 1.00 1.00

*p.<.05, **p<.01, ***p<.001

Predictors of Dual Diagnosis, Use of Psychotropic Medication, and Use of Clinical Services

Conclusion/QuestionsConclusion/Questions

Dual diagnosis more likely among less severely Dual diagnosis more likely among less severely disabled – in terms of MR level, additional disabled – in terms of MR level, additional disabilities, and verbal abilitiesdisabilities, and verbal abilities

-- Dual diagnosis is more difficult to assess with Dual diagnosis is more difficult to assess with persons with severe disabilitiespersons with severe disabilities

-- Does “diagnostic overshadowing” play a role?Does “diagnostic overshadowing” play a role?

People living in specialized facilities have highest People living in specialized facilities have highest odds of dual diagnosis, yet persons with dual odds of dual diagnosis, yet persons with dual diagnosis are also more likely to be mildly diagnosis are also more likely to be mildly disableddisabled

-- Why are mildly disabled persons with dual Why are mildly disabled persons with dual diagnosis placed in specialized facilities?diagnosis placed in specialized facilities?

Conclusion/Questions Conclusion/Questions (continued)(continued)

Presence of behavior problems is strongly linked to Presence of behavior problems is strongly linked to dual diagnosisdual diagnosis

-- Do behavior problems associated with dual Do behavior problems associated with dual diagnosis influence likelihood of placement in diagnosis influence likelihood of placement in specialized facilities?specialized facilities?

People living in family/relative homes are People living in family/relative homes are leastleast likely to have a dual diagnosislikely to have a dual diagnosis

-- Are families more likely to seek out-of-home Are families more likely to seek out-of-home placements when a family member has a dual placements when a family member has a dual diagnosis? diagnosis?

-- Are families less likely to recognize/identify Are families less likely to recognize/identify psychiatric problems in family members with MR?psychiatric problems in family members with MR?

Conclusion/Questions Conclusion/Questions (continued)(continued)

Dual diagnosis is a strong predictor of both use of Dual diagnosis is a strong predictor of both use of clinical services and use of psychotropic clinical services and use of psychotropic medicationsmedications

-- People with dual diagnosis are 5 times more People with dual diagnosis are 5 times more likely likely to use clinical services than to use clinical services than persons without dual persons without dual diagnosisdiagnosis

-- People with dual diagnosis are 11 times more People with dual diagnosis are 11 times more likely to use psychotropic medications than likely to use psychotropic medications than persons without dual diagnosispersons without dual diagnosis

Conclusion/Questions Conclusion/Questions (continued)(continued)

Our data analysis is not based upon a causal Our data analysis is not based upon a causal modelmodel

-- Findings show complex relationships Findings show complex relationships between sets between sets of variablesof variables

-- Dual diagnosis, problem behaviors, and Dual diagnosis, problem behaviors, and type of type of living setting are living setting are strongly associated with use of strongly associated with use of clinical services and psychotropic medicationsclinical services and psychotropic medications

-- Does having a dual diagnosis influence Does having a dual diagnosis influence these these other variables or do other variables or do these other variables these other variables influence whether one is dually diagnosed?influence whether one is dually diagnosed?