in person: non-normative extension interview

In Person: Non-Normative Extension Interview

JNNEXT Non-normative Extension Interview

OVERVIEW

This module is an extension of the non-normative screener module of the 2011

collection wave. The purpose is to collect more information about the

participant’s selected non-normative child. If a child with a developmental

disorder was identified in the 2004 collection wave, that child was also

discussed in this wave. If a non-normative child was not discussed in 2004,

they were identified in the non-normative screener and discussed further here.

If a participant reported more than one child with a developmental disability

in the screener module, the one they had the most contact with was chosen to be

discussed here. The "selected non-normative child" refers to either the child

talked about in 2004, the child identified in the non-normative screener in the

2011 collection wave or the non-normative child that the participant had the

most contact with. Information was collected in the following ways:

Once the correct child was verified, the participant was read a list of

possible developmental disorders and reported which the selected non-normative

child had. After version 17 of this survey, the participant was then asked if

they had contact with the selected non-normative child in the past year, such

as seeing them in person or talking to them on the phone. If they had not had

contact in the past year they were not asked any more questions regarding the

selected non-normative child.

Participants who had contact with the selected non-normative child in the past

year were then asked questions regarding details about their child such as

their overall physical health, employment, programs they participate in,

volunteering, activities of daily living, living situation, social activities,

behavior and care the child recieves.

The variables in this module have been, for the most part, replicated from

2004. However, the variables regarding the diagnoses (HH125REA-HH126REB) are

new to the 2011 wave, as well as the variable regarding whether the participant

had contact with their child in the past year (HH200).

BRIEF VARIABLE DESCRIPTIONS

Variable ranges reference dataset/codebook order and are not necessarily

alphabetical.

_____________________________________________________________________

HNNESTAT-HNNEREL: Module-Level Status Variables.

HH125: Focus child’s roster ID

HH125REA-HH126REB: Diagnoses of child

HH200: Interaction with child in past year

HH001-HH002: Health of child

HH003,HH126: Employment of the child

- 1 -

Wisconsin Longitudinal Study Codebook

HH006-HH021: Daily activities of child

HH022: How many hours does respondent help child

HH023-HH071: Activities of daily living

HH077-HH083: Living situation of child

HH084-HH089: Social participation of child

HH090-HH103: Negative behavior problems of child

HH105-HH114: Mental health care of child

HH115-HH119: Future care for child

hnnestat: Was the Nonnormative Extension Interview Module completed

by Participant alone, with help, or by proxy?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_nneflag, y_nneproxy1, y_nnehelp0, capiproxy, y_proxy, y_ivwloc*NOT AVAILABLE ON PUBLIC RELEASE*

Frequencies

Value Label Male Female Total

. System missing - NR 2146 2019 4165

-30 NOT PART OF MOSAQ 68 116 184

-5 PARTIAL INTERVIEW 7 2 9

1 R COMPLETED ALONE 2489 3023 5512

2R COMPLETED ALONE WITH SOMEONE ELSE IN THE ROOM

245 139 384

3 R RECEIVED A LITTLE HELP 17 4 21

4 R RECEIVED A LOT OF HELP 4 6 10

5 HELPER RESPONDED TO ALL ITEMS 1 1 2

7 WHOLE INTERVIEW DONE BY PROXY 14 16 30

Note: For many cases a participant’s spouse or other family member was present during the interview.This sometimes resulted in the participant relying on the other person for help in answering some or manyof the questions. At the end of each module the interviewer indicated the amount of help the participantreceived and who provided that help. That assessment is covered by codes 1 through 5. Additionally, acode of 7 indicates that the entire interview was administered to a proxy while a code of 6 indicates that

- 2 -


this particular module was answered by a proxy but other modules were answered by the participant.

hnnerel: Relationship of Nonnormative Extension Interview Module

helper or proxy to Participant.

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: HNNESTAT, y_nneproxy1, y_nnehelp0, y_nnehelp1, y_nnehelp2_hfn, y_nnehelp3,y_h1fn-y_h4fn, y_pfn, prxyfnam, y_p1fn-y_p5fn, y_prel, prxyrel, y_p1rel-y_p5rel*NOT AVAILABLE ON PUBLIC RELEASE*

Frequencies





-4 NOT ASCERTAINED 0 1 1

-2InappropriateInap, (Sampled skip or hnnestat=1,2,-3)

2734 3162 5896

0 SPOUSE 33 17 50

2 BROTHER 1 0 1

8 DAUGHTER 1 3 4

25 FRIEND 0 1 1

26 GRANDDAUGHTER 0 1 1

30 GRANDSON 0 1 1

48 SON 1 3 4

Note: If this module was administered via proxy or if the participant received help answering the questionsin this module then the interviewer recorded the relationship of the proxy/helper to the participant.Although most participants relied on only one helper or proxy for the interview, some had more than one.Thus the value of the relationship code may vary across the modules.

hh125: Roster ID of the non-normative child about whom the questions

in extension module are being asked.

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: nnID*NOT AVAILABLE ON PUBLIC RELEASE*

- 3 -


Frequencies





-2InappropriateInap, No child selected

2629 2999 5628

101 44 61 105

102 50 53 103

103 27 38 65

104 9 17 26

105 5 15 20

106 5 1 6

107 0 2 2

108 0 1 1

109 1 1 2

110 0 1 1

hh125rea: Has the selected non-normative child ever been diagnosed with

mental retardation or cognitive disability?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_nne04_1*NOT AVAILABLE ON PUBLIC RELEASE*

- 4 -


Frequencies





-3 REFUSED 3 1 4

-2InappropriateInap, No child selected Or non-normative case previouslyreported in 2004

2705 3080 5785

-1 DON’T KNOW 2 4 6

1 YES 8 7 15

2 NO 52 97 149

hh125reb: Has the selected non-normative child ever been diagnosed

with Down Syndrome?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 1 0 1

2 NO 60 106 166

- 5 -


hh125rec: Has the selected non-normative child ever been diagnosed with

Autism?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 1 2 3

2 NO 61 104 165

hh125red: Has the selected non-normative child ever been diagnosed

with Asperger’s?


- 6 -


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 0 1 1

2 NO 59 103 162

hh125ree: Has the selected non-normative child ever been diagnosed with

Pervasive Developmental Disorder (PDD)?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 2 1 3

2 NO 57 103 160

- 7 -


hh125ref: Has the selected non-normative child ever been diagnosed with

Rett’s Syndrome?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


2 NO 60 105 165

hh125reg: Has the selected non-normative child ever been diagnosed with

Epilepsy or seizure disorder?


- 8 -


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 2 7 9

2 NO 60 98 158

hh125reh: Has the selected non-normative child ever been diagnosed

with Cerebral Palsy (CP)?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 1 2 3

2 NO 61 104 165

- 9 -


hh125rei: Has the selected non-normative child ever been diagnosed with

Muscular Dystrophy?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


2 NO 62 106 168

hh125rej: Has the selected non-normative child ever been diagnosed with

traumatic brain injury (TBI)?


- 10 -


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 1 6 7

2 NO 60 99 159

hh125rek: Has the selected non-normative child ever been diagnosed

with Attention Deficit Disorder or Attention Deficit Hyperactivity

Disorder (ADD/ADHD)?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 15 25 40

2 NO 45 80 125

- 11 -


hh125rel: Has the selected non-normative child ever been diagnosed with

a learning disability, such as Dyslexia?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 6 9 15

2 NO 53 94 147

hh125rem: Has the selected non-normative child ever been diagnosed

with Obsessive Compulsive Disorder (OCD)?


- 12 -


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 13 12 25

2 NO 49 90 139

hh125ren: Has the selected non-normative child ever been diagnosed

with an anxiety disorder?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 26 39 65

2 NO 34 61 95

- 13 -


hh125reo: Has the selected non-normative child ever been diagnosed with

Depression?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 31 76 107

2 NO 28 28 56

hh125rep: Has the selected non-normative child ever been diagnosed

with Bipolar Disorder, also known as manic depression?


- 14 -


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 46 79 125

2 NO 15 24 39

hh125req: Has the selected non-normative child ever been diagnosed

with Schizophrenia or Schizoaffective Disorder?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 7 15 22

2 NO 55 89 144

- 15 -


hh125rer: Has the selected non-normative child ever been diagnosed with

a personality disorder?


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 6 12 18

2 NO 53 91 144

hh125res: Has the selected non-normative child ever been diagnosed with

alcoholism?


- 16 -


Frequencies





-3 REFUSED 3 1 4


2705 3080 5785


1 YES 12 24 36

2 NO 50 80 130

hh126rea: Has the selected non-normative child ever been diagnosed with

fragile X syndrome?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_nne07*NOT AVAILABLE ON PUBLIC RELEASE*

Frequencies





-3 REFUSED 1 1 2


2619 2987 5606

-1 DON’T KNOW 24 25 49

1 YES 0 1 1

2 NO 126 175 301

- 17 -


hh126reb: Has the selected non-normative child ever been tested for

fragile X syndrome?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_nne08*NOT AVAILABLE ON PUBLIC RELEASE*

Frequencies





-3 REFUSED 2 1 3

-2InappropriateInap, No child selected Or child diagnosed with fragile xsyndrome (hh126rea = 1)

2619 2988 5607

-1 DON’T KNOW 64 68 132

1 YES 5 2 7

2 NO 80 130 210

hh200: Has Participant seen the selected non-normative child face-to-face

or talked over the telephone in the past year?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_D413*NOT AVAILABLE ON PUBLIC RELEASE*

- 18 -


Frequencies






-3 REFUSED 1 0 1


2636 3010 5646


1 YES 124 167 291

2 NO 7 11 18

Note: This was not asked before version 18. If the participant reported not having seen or spoken to theirselected non-normative child in the past year they were not asked any more questions in this module.

hh001: How would you rate the health of the selected non-normative

child?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H080*NOT AVAILABLE ON PUBLIC RELEASE*

- 19 -


Frequencies





-3 REFUSED 1 1 2

-2InappropriateInap, No child selected Or hasn’t seen/talked to child in pastyear (hh200 != 1)

2629 2999 5628


1 EXCELLENT 29 32 61

2 GOOD 65 87 152

3 FAIR 27 44 71

4 POOR 16 18 34

5 VERY POOR 1 7 8

hh002: How is the health of the selected non-normative child compared

to 5 years ago?


- 20 -


Frequencies





-3 REFUSED 1 1 2


2629 2999 5628


1 BETTER 31 59 90

2 ABOUT THE SAME 80 80 160

3 WORSE 28 50 78

hh003: Does the selected non-normative child have a job without special

supports?


- 21 -


Frequencies






-3 REFUSED 1 0 1


2629 2999 5628


1 YES 57 86 143

2 NO 82 102 184

hh126: How many hours a week does the selected non-normative child

work at the job without special supports?


- 22 -


Frequencies





-2InappropriateInap, No child selected Or child doesn’t have a job withoutsupports (hh003 != 1)

2713 3103 5816


4 - 20 10 17 27

22 - 35

11 16 27

36 - 40

22 35 57

45 - 60

12 15 27

hh006: Does the selected non-normative child participate in a supported

or transitional employment program?


- 23 -


Frequencies






-3 REFUSED 1 0 1


2629 2999 5628


1 YES 22 17 39

2 NO 116 165 281

hh007: How many hours per week does the selected non-normative child

participate in a supported or transitional employment program?


- 24 -


Frequencies






-2InappropriateInap, No child selected Or child doesn’t have a job withsupports (hh006 != 1)

2748 3170 5918


1 1 0 1

2 1 0 1

3 2 0 2

4 1 0 1

5 0 1 1

6 2 0 2

8 0 1 1

14 0 1 1

15 4 1 5

18 1 1 2

20 0 4 4

24 1 0 1

25 2 0 2

30 4 4 8

32 1 0 1

35 0 2 2

40 1 0 1

- 25 -


hh008: Does the selected non-normative child attend a sheltered

workshop?


Frequencies






-3 REFUSED 1 0 1

-2InappropriateInap, No child selected Or child has an MI diagnosis

2714 3133 5847

1 YES 11 13 24

2 NO 43 41 84

Note: If the participant reported in 2004 that the selected non-normative child was diagnosed with mentalillness, they were not asked questions regarding their child’s participation in sheltered workshops or dayactivity programs. Such cases have been assigned a value of -2 on HH008-HH011.


attend a sheltered workshop?


- 26 -


Frequencies





-2InappropriateInap, No child selected Or child has an MI diagnosis Or childdoes not attend a workshop (hh008 != 1)

2759 3176 5935

8 0 1 1

15 1 3 4

18 2 1 3

20 1 2 3

24 1 0 1

25 2 0 2

30 2 2 4

32 1 0 1

35 1 2 3

40 0 1 1

56 0 1 1


hh010: Does the selected non-normative child attend a day activity

program?


- 27 -


Frequencies






-3 REFUSED 1 0 1

-2InappropriateInap, No child selected Or child has an MI diagnosis

2714 3133 5847


1 YES 4 11 15

2 NO 49 41 90



attend a day activity program?


- 28 -


Frequencies





-2InappropriateInap, No child selected Or child has an MI diagnosis Or childdoes not attend a day program (hh010 != 1)

2766 3178 5944


4 0 1 1

5 1 0 1

8 1 1 2

10 0 2 2

16 0 1 1

30 1 2 3

35 1 1 2

40 0 1 1

56 0 1 1


hh012: Does the selected non-normative child go to a Department of

Vocational Rehabilitation, day treatment or clubhouse program?


- 29 -


Frequencies







2629 2999 5628


1 YES 5 5 10

2 NO 117 165 282

Note: This was supposed to be asked of all children with a developmental disability but those beforeversion 23 were not asked.

hh013: Which of the three programs - a Department of Vocational

Rehabilitation, day treatment program, or clubhouse program - does the

selected non-normative child attend?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H090_1*NOT AVAILABLE ON PUBLIC RELEASE*

- 30 -


Frequencies





-2InappropriateInap, No child selected Or child does not attend any of theprograms (hh012 != 1)

2765 3184 5949

1 DVR 2 1 3

2 DAY TREATMENT PROGRAM 1 1 2

3 CLUBHOUSE PROGRAM 2 3 5

hh014: Is that a DVR, day treatment program or clubhouse program?


Frequencies





-2InappropriateInap, No child selected Or child does not attend any oftheprograms (hh012 != 1) Or all programs listed

2770 3189 5959

hh015: Is that a DVR, day treatment program or clubhouse program?


- 31 -


Frequencies





-2InappropriateInap, No child selected Or child does not attend any oftheprograms (hh012 != 1) Or all programs listed

2770 3189 5959


go to a Department of Vocational Rehabilitation program?


Frequencies





-2InappropriateInap, No child selected Or child does not attend a DVR (hh013!= 1)

2768 3188 5956

4 0 1 1

15 1 0 1

25 1 0 1


go to a day treatment program?


- 32 -


Frequencies





-2InappropriateInap, No child selected Or child does not attend a daytreatment program (hh013 != 2)

2769 3188 5957

5 1 0 1

40 0 1 1


go to a clubhouse program?


Frequencies





-2InappropriateInap, No child selected Or child does not attend a clubhouseprogram (hh013 != 3)

2768 3186 5954


2 1 0 1

3 0 1 1

4 1 0 1

15 0 1 1

- 33 -


hh019: Is the selected non-normative child involved in any volunteer

activities?


Frequencies





-3 REFUSED 1 0 1


2629 2999 5628

-1 DON’T KNOW 7 10 17

1 YES 36 41 77

2 NO 97 139 236


participate in volunteer activities?


- 34 -


Frequencies





-2InappropriateInap, No child selected Or child does not volunteer (hh019 != 1)

2734 3148 5882


0 0 3 3

0.50 0 1 1

1 4 4 8

2 9 10 19

3 5 2 7

4 2 1 3

5 0 1 1

6 3 0 3

8 0 3 3

10 2 3 5

12 1 3 4

20 0 2 2

30 1 0 1

40 0 1 1

60 0 1 1

hh021: Where does the selected non-normative child spend most of their

day?


- 35 -


Frequencies






-3 REFUSED 2 0 2

-2

InappropriateInap, No child selected Or the child is involved in a structureddaily activity: Job (hh003, hh006), workshop (hh008), activityprogram (hh010), DVR or clubhouse (hh012), volunteering (hh019)

2683 3075 5758


1 AT HOME 51 73 124

2 OUTSIDE OF HIS/HER HOME 27 33 60

Note: This is only asked of children who did not report participating in any activities or who are notflagged with a mental illness.

hh022: Not including social or entertainment activities or watching TV,

how many hours in a typical week do you help your selected

non-normative child in care related activities, such as getting dressed,

grooming, shopping, transportation, chores or other activities?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H099a*NOT AVAILABLE ON PUBLIC RELEASE*

- 36 -


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628


0 100 150 250

1 - 25 34 29 63

29 - 97

1 5 6

hh023: How much help does the selected non-normative child need with

grooming?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H099b*NOT AVAILABLE ON PUBLIC RELEASE*

- 37 -


Frequencies






-3 REFUSED 4 3 7


2629 2999 5628


1 NONE 102 151 253

2 A LITTLE 14 10 24

3 SOME 12 13 25

4 A LOT 6 8 14


cooking and cleaning?


- 38 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628


1 NONE 90 133 223

2 A LITTLE 14 11 25

3 SOME 10 16 26

4 A LOT 18 19 37


getting up and going in the morning?


- 39 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628


1 NONE 106 141 247

2 A LITTLE 15 16 31

3 SOME 9 13 22

4 A LOT 3 9 12


traveling to places s/he needs to go?


- 40 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628


1 NONE 77 118 195

2 A LITTLE 19 18 37

3 SOME 17 16 33

4 A LOT 21 29 50


grocery shopping?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H105A*NOT AVAILABLE ON PUBLIC RELEASE*

- 41 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628


1 NONE 86 129 215

2 A LITTLE 14 12 26

3 SOME 11 13 24

4 A LOT 19 24 43


shopping for personal items?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H106A*NOT AVAILABLE ON PUBLIC RELEASE*

- 42 -


Frequencies





-2

InappropriateInap, No child selected Or R did not know or refused howmuch help the child needs with grocery shopping (hh047 = -1 | -3)

2640 3011 5651


1 NONE 84 133 217

2 A LITTLE 13 11 24

3 SOME 14 9 23

4 A LOT 19 24 43


doing household chores, such as dishes or cleaning?


- 43 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628


1 NONE 95 118 213

2 A LITTLE 9 23 32

3 SOME 15 18 33

4 A LOT 12 21 33


taking medications?


- 44 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628


1 NONE 85 125 210

2 A LITTLE 16 18 34

3 SOME 12 12 24

4 A LOT 13 19 32

7 NO MEDICATIONS 6 4 10


managing his/her money?


- 45 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628

-1 DON’T KNOW 6 10 16

1 NONE 53 87 140

2 A LITTLE 14 20 34

3 SOME 26 18 44

4 A LOT 39 51 90

hh077: Where does the selected non-normative child currently live?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H113A, y_H113B*NOT AVAILABLE ON PUBLIC RELEASE*

- 46 -


Frequencies






-3 REFUSED 1 0 1


2629 2999 5628


0 WITH RESPONDENT 19 17 36

1 GROUP LIVING 11 18 29

2 INDEPENDENT LIVING 89 136 225

3 FOSTER HOME 1 0 1

4 INSTITUTION 3 1 4

7 OTHER FAMILY MEMBER 13 11 24

9 OTHER 1 0 1

hh078: Has the selected non-normative child lived with the participant in

the past six months?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H113C*NOT AVAILABLE ON PUBLIC RELEASE*

- 47 -


Frequencies






-2InappropriateInap, No child selected Or child lives with R (hh077 = 0)

2648 3016 5664

1 YES 15 19 34

2 NO 106 148 254

hh079: What level of supervision does the selected non-normative child

have at his/her place of residence?


Frequencies






-2InappropriateInap, No child selected Or child does not live in a group home(hh077 != 1)

2758 3165 5923


1 100% SUPERVISION BY STAFF 6 13 19

2 STAFF PRESENT SOME OF THE TIME 4 2 6

3 NO STAFF ARE PRESENT 1 1 2

- 48 -


hh080: How long does it take for the participant to drive to the residence

of the selected non-normative child?


Frequencies






-3 REFUSED 2 0 2


2648 3016 5664


1 WITHIN 5 MINS 18 23 41

2 WITHIN 1/2 HOUR 40 57 97

3 WITHIN 1 HOUR 12 12 24

4 WITHIN 1/2 DAY 19 35 54

5 FURTHER THAN 1/2 DAY 27 32 59

hh081: How satisfied is the participant with the living situation of the

selected non-normative child?


- 49 -


Frequencies






-3 REFUSED 1 0 1


2648 3016 5664


1 NOT AT ALL SATISFIED 15 18 33

2 SOMEWHAT SATISFIED 41 47 88

3 VERY SATISFIED 62 99 161

hh082: How satisfied are you with having the selected non-normative

child living with you?


- 50 -


Frequencies





-3 REFUSED 0 1 1

-2InappropriateInap, No child selected Or child does not live with R (hh077 != 0)

2751 3172 5923

1 NOT AT ALL SATISFIED 1 0 1

2 SOMEWHAT SATISFIED 5 3 8

3 VERY SATISFIED 13 13 26

hh083: Is the selected non-normative child on a waiting list for housing?


Frequencies





-3 REFUSED 1 2 3


2629 2999 5628


1 YES 5 3 8

2 NO 128 178 306

- 51 -


hh084: How many times per year does the selected non-normative child

socialize with relatives?


Frequencies





-3 REFUSED 3 3 6


2629 2999 5628

-1 DON’T KNOW 14 23 37

0 - 4 22 43 65

5 - 24 25 39 64

26 - 52 27 32 59

60 - 156 31 27 58

208 - 365

19 23 42


socialize with friends?


- 52 -


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628

-1 DON’T KNOW 25 37 62

0 - 24 25 32 57

36 - 72 22 30 52

104 - 156

28 35 63

208 - 365

38 52 90


participate in recreational activities?


Frequencies





-3 REFUSED 3 3 6


2629 2999 5628

- 53 -


-1 DON’T KNOW 21 42 63

0 40 59 99

1 0 1 1

2 2 3 5

3 1 1 2

4 3 0 3

6 1 1 2

8 1 0 1

12 16 10 26

24 12 10 22

36 1 2 3

48 0 1 1

52 21 29 50

60 1 0 1

104 9 17 26

156 2 2 4

208 3 2 5

260 1 2 3

300 0 1 1

365 3 4 7


work on a hobby?


- 54 -


Frequencies





-3 REFUSED 3 3 6


2629 2999 5628

-1 DON’T KNOW 27 38 65

0 50 64 114

4 0 1 1

12 1 3 4

24 2 4 6

36 2 0 2

48 1 1 2

52 9 10 19

72 1 2 3

104 4 12 16

156 4 3 7

180 0 1 1

208 4 4 8

260 2 2 4

300 1 0 1

312 1 0 1

360 1 0 1

364 0 2 2

365 28 40 68

- 55 -



walk, play sports, or get some kind of physical exercise?


- 56 -


Frequencies





-3 REFUSED 3 3 6


2629 2999 5628

-1 DON’T KNOW 23 28 51

0 19 39 58

1 0 1 1

4 1 0 1

12 3 1 4

20 0 2 2

24 2 3 5

52 8 16 24

84 1 0 1

104 10 12 22

144 1 0 1

156 12 9 21

208 5 5 10

260 8 8 16

300 0 1 1

365 45 62 107


attend services or an event at a church or synagogue, or participate in

other religious ceremonies?

- 57 -



Frequencies





-3 REFUSED 3 4 7


2629 2999 5628

-1 DON’T KNOW 20 19 39

0 57 79 136

1 - 36 24 36 60

48 - 52 31 41 72

104 - 365

6 11 17

hh090: Has the selected non-normative child hurt him/herself in last 6

months?


- 58 -


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628


1 YES 7 8 15

2 NO 126 171 297

hh091: Has the selected non-normative child destroyed, deliberately

broken, or defaced any property in last 6 months?


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628


1 YES 5 9 14

2 NO 125 167 292

- 59 -


hh092: Has the selected non-normative child had any disruptive

behaviors that interfered with the activity of others in the last 6 months?


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628

-1 DON’T KNOW 6 11 17

1 YES 24 19 43

2 NO 108 155 263

hh093: Has the selected non-normative child had any repetitive behaviors

in the last 6 months?


- 60 -


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628


1 YES 20 28 48

2 NO 110 148 258

hh094: Has the selected non-normative child had any socially offensive

behaviors in the last 6 months?


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628


1 YES 23 27 50

2 NO 108 150 258

- 61 -


hh095: Has the selected non-normative child been withdrawn in last 6

months?


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628

-1 DON’T KNOW 5 10 15

1 YES 42 56 98

2 NO 91 119 210

hh096: Has the selected non-normative child been uncooperative in last 6

months?


- 62 -


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628


1 YES 19 19 38

2 NO 112 157 269

hh097: Has the selected non-normative child hurt people or animals in

last 6 months?


Frequencies





-3 REFUSED 3 5 8


2629 2999 5628


1 YES 2 6 8

2 NO 131 174 305

- 63 -


hh098: Has the selected non-normative child hurt the participant or

someone else in the household in the last 6 months?


Frequencies





-2InappropriateInap, No child selected Or child has not hurt any people oranimals in the last 6 months (hh097 != 1)

2768 3183 5951

1 YES 1 0 1

2 NO 1 6 7

hh099: How often has the selected non-normative child hurt the

participant or someone else in the household?


Frequencies



-30 68 116 184


-2InappropriateInap, No child selected Or child has not hurt anyone inhousehold (hh098 !=1)

2769 3189 5958

3 ON SEVERAL OCCASSIONS 1 0 1

- 64 -


hh100: Has the selected non-normative child threatened physical

violence?


Frequencies





-3 REFUSED 3 4 7

-2InappropriateInap, No child selected Or child has hurt participant orsomeone else in household (hh098 = 1)

2630 2999 5629


1 YES 2 2 4

2 NO 133 182 315

hh101: How often has the selected non-normative child threatened

physical violence?


- 65 -


Frequencies



-30 68 116 184


-2InappropriateInap, No child selected Or child has not threatened physicalviolence (hh100 != 1)

2768 3187 5955

1 ONCE 1 1 2

2 ON A COUPLE OF OCCASIONS 0 1 1


hh102: Has the selected non-normative child been verbally abusive to you

or someone in your household?


Frequencies





-3 REFUSED 3 4 7


2629 2999 5628


1 YES 16 18 34

2 NO 120 166 286

- 66 -


hh103: How often has the selected non-normative child been verbally

abusive?


Frequencies



-30 68 116 184


-2InappropriateInap, No child selected Or child has not been verbally abusivein last 6 months (hh102 != 1)

2754 3171 5925

1 ONCE 1 0 1

2 ON A COUPLE OF OCCASIONS 5 7 12


4 ON MORE THAN SEVERAL OCCASSIONS 5 4 9

hh105: How old was the selected non-normative child when s/he first

started having mental health problems?


- 67 -


Frequencies





-3 REFUSED 2 1 3

-2InappropriateInap, No child selected Or child does not have an MI diagnosisOr not asked in previous round

2723 3106 5829


0 - 12 7 16 23

13 - 17

9 14 23

18 - 30

13 20 33

32 - 42

7 17 24

43 - 49

1 8 9

hh106: What age category was the selected non-normative child in when

s/he first started having mental health problems?


- 68 -


Frequencies





-3 REFUSED 2 1 3

-2InappropriateInap, No child selected Or child does not have an MI diagnosisOr R knew age problems started (hh105 != -1)

2760 3181 5941


1 DURING CHILDHOOD 1 0 1

2 DURING YOUNG ADULTHOOD 4 2 6

4 AFTER AGE 25 3 4 7

hh107: How old was the selected non-normative child when s/he first

received a mental health diagnosis?


- 69 -


Frequencies





-3 REFUSED 2 1 3

-2InappropriateInap, No child selected Or child does not have an MIdiagnosis Or not asked in previous round

2723 3106 5829

-1 DON’T KNOW 4 10 14

1.50 - 16

8 16 24

17 - 27 11 11 22

28 - 33 10 12 22

34 - 40 10 18 28

41 - 50 2 15 17

hh108: What age category was the selected non-normative child in when

s/he first received a mental health diagnosis?


- 70 -


Frequencies





-3 REFUSED 2 1 3

-2InappropriateInap, No child selected Or child does not have an MI diagnosisOr R knew age problems started (hh107 != -1)

2764 3178 5942


1 DURING CHILDHOOD 0 2 2

2 DURING YOUNG ADULTHOOD 1 2 3

4 AFTER AGE 25 3 5 8

hh109: Has the selected non-normative child ever been admitted for an

overnight stay in a hospital for mental health problems?


- 71 -


Frequencies





-3 REFUSED 2 1 3

-2InappropriateInap, No child selected Or child does not have an MI diagnosisOr not asked in previous round

2723 3106 5829


1 YES 25 50 75

2 NO 18 29 47

hh112: How many times has the selected non-normative child been

hospitalized for mental health or emotional problems?


- 72 -


Frequencies





-2InappropriateInap, No child selected Or MI child has not had an overnighthospital stay (hh109 !=1)

2745 3139 5884


1 11 12 23

2 5 14 19

3 4 12 16

4 0 1 1

5 1 1 2

6 1 0 1

9 0 1 1

12 1 1 2

30 0 1 1

99 0 1 1

Note: In 2004, this was asked of all children with mental health conditions

hh113: During the past six months, has the selected non-normative child

received services from a mental health community support program?


- 73 -


Frequencies





-3 REFUSED 3 3 6


2629 2999 5628

-1 DON’T KNOW 20 20 40

1 YES 17 28 45

2 NO 101 139 240

Note: In 2004, this was asked of children with mental health conditions

hh114: Where does the selected non-normative child usually go for

mental health care?


- 74 -


Frequencies





-3 REFUSED 4 1 5

-2InappropriateInap, No child selected Or child receives help from a CSP(hh113 = 1)

2646 3027 5673

-1 DON’T KNOW 19 22 41

1 NOWHERE 14 22 36

2 FAMILY DOCTOR 14 20 34

3 V.A. HOSPITAL 3 3 6

4 OUTPATIENT MENTAL HEALTH CLINIC 2 8 10

5 PRIVATE PSYCHIATRIST 15 26 41

6 EMERGENCY ROOM 1 0 1

8 OTHER 27 34 61

97 DOESN’T NEED TREATMENT 25 26 51

hh115: When you are no longer alive or able to care for or do what you

do for the selected non-normative child, is there a family member who

will be most involved with the child’s care?


- 75 -


Frequencies





-3 REFUSED 5 4 9


2629 2999 5628

-1 DON’T KNOW 6 12 18

1 YES 91 111 202

2 UNCERTAIN, BUT ABLE TO GUESS 5 10 15

3 NO, CHILD NEEDS NO HELP 14 24 38

4 NO ONE INVOLVED W/ CHILD 14 13 27

5 NO, R DOES NOT CARE FOR CHILD 6 16 22

hh116rec: Who will be involved in the future care of the selected

non-normative child?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H171Revisions: Updated June 2017 replaces hh116 *NOT AVAILABLE ON PUBLIC RELEASE*

Frequencies





-2InappropriateInap, No child selected Or no planned care/ no care needed(hh115 != 1 |2 )

2674 3068 5742


- 76 -


1 HUSBAND 6 8 14

6 BROTHER 26 34 60

7 FATHER 0 8 8

11 BROTHER-IN-LAW 1 0 1

17 STEP-FATHER 0 1 1

25 OTHER MALE NON-RELATIVE 0 1 1

31 WIFE 1 2 3

32 FORMER WIFE 0 1 1

34 DAUGHTER 0 2 2

36 SISTER 24 29 53

37 MOTHER 20 1 21

49 AUNT 2 1 3

59 SPOUSE, GENDER UNKNOWN 11 15 26

74 CHILD, GENDER UNKNOWN 1 10 11

91 FRIEND, GENDER UNKNOWN 0 1 1

106 MULTIPLE CAREGIVERS, FAMILY 1 5 6

108 MEDICAL PROFESSIONALS 1 0 1

114 COUSIN 0 1 1

119 CARETAKER, GENDER UNKNOWN 0 1 1

168 MULTIPLE RELATIVES 1 0 1

Note: The relationship listed on this variable refers to the relationship to the selected non-normative child,not the relationship to the participant.

hh117rec: Who will be second most involved in the care of the selected

non-normative child after the person most involved is no longer able to

care for the child?

Data source: Graduate Participant or Proxy Collected in: 2011 Mode: In person & telephoneSource variables: y_H172Revisions: Updated June 2017 replaces hh117 *NOT AVAILABLE ON PUBLIC RELEASE*

- 77 -


Frequencies





-2

InappropriateInap, No child selected Or no planned care/ no care needed(hh115 != 1 |2 ) Or parent or grandparent not next caretaker(hh116 != 00 |30 |37 |7 |78)

2752 3188 5940


6 BROTHER 5 1 6

36 SISTER 5 0 5

74 CHILD, GENDER UNKNOWN 1 0 1

161 STATE GOVERNMENT AGENCY OR PROGRAM 1 0 1

Note: If the parent or grandparent of the selected non-normative child was named as being involved in thefuture care of the child, a follow-up question was asked regarding the future care of the child if said parentor grandparent were to die or become unable to care for the child. Note: The relationship listed on this variable refers to the relationship to the selected non-normative child,not the relationship to the participant.

hh118: Have you spoken with the person who will take care of the

selected non-normative child about taking care of the child?


- 78 -


Frequencies






-2

InappropriateInap, No child selected Or no planned care/ no care needed(hh115 != 1 |2 ) Or R doesn’t know who will take care afterparent or grandparent (hh117 = -1)

2681 3068 5749


1 YES 50 76 126

2 NO 38 44 82

hh119: Has the person named to take care of the selected non-normative

child agreed to take care of the child?


Frequencies





-2InappropriateInap, No child selected Or R has not talked to someone abouttaking care of the child (hh118 != 1)

2720 3113 5833


1 YES 43 72 115

2 NO 6 3 9

- 79 -


Table of Contents

............ 1In Person: Non-Normative Extension Interviewhnnestat: Was the Nonnormative Extension Interview Module completed by Participant alone,

................ 2with help, or by proxy?hnnerel: Relationship of Nonnormative Extension Interview Module helper or proxy to

................... 3Participant.hh125: Roster ID of the non-normative child about whom the questions in extension module are

................... 3being asked.hh125rea: Has the selected non-normative child ever been diagnosed with mental retardation or

................. 4cognitive disability?

. 5hh125reb: Has the selected non-normative child ever been diagnosed with Down Syndrome?

... 6hh125rec: Has the selected non-normative child ever been diagnosed with Autism?

.. 6hh125red: Has the selected non-normative child ever been diagnosed with Asperger’s?hh125ree: Has the selected non-normative child ever been diagnosed with Pervasive

.............. 7Developmental Disorder (PDD)?

. 8hh125ref: Has the selected non-normative child ever been diagnosed with Rett’s Syndrome?hh125reg: Has the selected non-normative child ever been diagnosed with Epilepsy or seizure

................... 8disorder?9hh125reh: Has the selected non-normative child ever been diagnosed with Cerebral Palsy (CP)?

10hh125rei: Has the selected non-normative child ever been diagnosed with Muscular Dystrophy?hh125rej: Has the selected non-normative child ever been diagnosed with traumatic brain injury

.................... 10(TBI)?hh125rek: Has the selected non-normative child ever been diagnosed with Attention Deficit

...... 11Disorder or Attention Deficit Hyperactivity Disorder (ADD/ADHD)?hh125rel: Has the selected non-normative child ever been diagnosed with a learning disability,

.................. 12such as Dyslexia?hh125rem: Has the selected non-normative child ever been diagnosed with Obsessive

............... 12Compulsive Disorder (OCD)?13hh125ren: Has the selected non-normative child ever been diagnosed with an anxiety disorder?

.. 14hh125reo: Has the selected non-normative child ever been diagnosed with Depression?hh125rep: Has the selected non-normative child ever been diagnosed with Bipolar Disorder, also

............... 14known as manic depression?hh125req: Has the selected non-normative child ever been diagnosed with Schizophrenia or

................ 15Schizoaffective Disorder?hh125rer: Has the selected non-normative child ever been diagnosed with a personality

................... 16disorder?

.. 16hh125res: Has the selected non-normative child ever been diagnosed with alcoholism?17hh126rea: Has the selected non-normative child ever been diagnosed with fragile X syndrome?

.. 18hh126reb: Has the selected non-normative child ever been tested for fragile X syndrome?hh200: Has Participant seen the selected non-normative child face-to-face or talked over the

................ 18telephone in the past year?

..... 19hh001: How would you rate the health of the selected non-normative child?

.. 20hh002: How is the health of the selected non-normative child compared to 5 years ago?

... 21hh003: Does the selected non-normative child have a job without special supports?hh126: How many hours a week does the selected non-normative child work at the job without

- i -


................... 22special supports?hh006: Does the selected non-normative child participate in a supported or transitional employment

.................... 23program?hh007: How many hours per week does the selected non-normative child participate in a supported or

............... 24transitional employment program?

...... 26hh008: Does the selected non-normative child attend a sheltered workshop?hh009: How many hours per week does the selected non-normative child attend a sheltered

.................... 26workshop?

..... 27hh010: Does the selected non-normative child attend a day activity program?hh011: How many hours per week does the selected non-normative child attend a day activity

.................... 28program?hh012: Does the selected non-normative child go to a Department of Vocational Rehabilitation, day

............... 29treatment or clubhouse program?hh013: Which of the three programs - a Department of Vocational Rehabilitation, day treatment

..... 30program, or clubhouse program - does the selected non-normative child attend?

....... 31hh014: Is that a DVR, day treatment program or clubhouse program?

....... 31hh015: Is that a DVR, day treatment program or clubhouse program?hh016: How many hours per week does the selected non-normative child go to a Department of

............... 32Vocational Rehabilitation program?hh017: How many hours per week does the selected non-normative child go to a day treatment

.................... 32program?33hh018: How many hours per week does the selected non-normative child go to a clubhouse program?..... 34hh019: Is the selected non-normative child involved in any volunteer activities?

hh020: How many hours per week does the selected non-normative child participate in volunteer .................... 34activities?..... 35hh021: Where does the selected non-normative child spend most of their day?

hh022: Not including social or entertainment activities or watching TV, how many hours in a typicalweek do you help your selected non-normative child in care related activities, such as getting dressed,

......... 36grooming, shopping, transportation, chores or other activities?

.... 37hh023: How much help does the selected non-normative child need with grooming?

.38hh029: How much help does the selected non-normative child need with cooking and cleaning?hh035: How much help does the selected non-normative child need with getting up and going in the

.................... 39morning?hh041: How much help does the selected non-normative child need with traveling to places s/he

.................... 40needs to go?

.. 41hh047: How much help does the selected non-normative child need with grocery shopping?hh053: How much help does the selected non-normative child need with shopping for personal

..................... 42items?hh059: How much help does the selected non-normative child need with doing household chores,

................. 43such as dishes or cleaning?

.. 44hh065: How much help does the selected non-normative child need with taking medications?

.45hh071: How much help does the selected non-normative child need with managing his/her money?

........ 46hh077: Where does the selected non-normative child currently live?

.. 47hh078: Has the selected non-normative child lived with the participant in the past six months?hh079: What level of supervision does the selected non-normative child have at his/her place of

.................... 48residence?hh080: How long does it take for the participant to drive to the residence of the selected

- ii -


.................. 49non-normative child?49hh081: How satisfied is the participant with the living situation of the selected non-normative child?.. 50hh082: How satisfied are you with having the selected non-normative child living with you?...... 51hh083: Is the selected non-normative child on a waiting list for housing?.52hh084: How many times per year does the selected non-normative child socialize with relatives?.52hh085: How many times per year does the selected non-normative child socialize with friends?

hh086: How many times per year does the selected non-normative child participate in recreational .................... 53activities?... 54hh087: How many times per year does the selected non-normative child work on a hobby?

hh088: How many times per year does the selected non-normative child walk, play sports, or get................ 56some kind of physical exercise?

hh089: How many times per year does the selected non-normative child attend services or an event at........ 57a church or synagogue, or participate in other religious ceremonies?..... 58hh090: Has the selected non-normative child hurt him/herself in last 6 months?

hh091: Has the selected non-normative child destroyed, deliberately broken, or defaced any property................... 59in last 6 months?

hh092: Has the selected non-normative child had any disruptive behaviors that interfered with the.............. 60activity of others in the last 6 months?.. 60hh093: Has the selected non-normative child had any repetitive behaviors in the last 6 months?

hh094: Has the selected non-normative child had any socially offensive behaviors in the last 6 ..................... 61months?..... 62hh095: Has the selected non-normative child been withdrawn in last 6 months?.... 62hh096: Has the selected non-normative child been uncooperative in last 6 months?.... 63hh097: Has the selected non-normative child hurt people or animals in last 6 months?

hh098: Has the selected non-normative child hurt the participant or someone else in the household in................... 64the last 6 months?

hh099: How often has the selected non-normative child hurt the participant or someone else in the .................... 64household?...... 65hh100: Has the selected non-normative child threatened physical violence?.... 65hh101: How often has the selected non-normative child threatened physical violence?

hh102: Has the selected non-normative child been verbally abusive to you or someone in your .................... 66household?..... 67hh103: How often has the selected non-normative child been verbally abusive?

hh105: How old was the selected non-normative child when s/he first started having mental health .................... 67problems?

hh106: What age category was the selected non-normative child in when s/he first started having................. 68mental health problems?

hh107: How old was the selected non-normative child when s/he first received a mental health .................... 69diagnosis?

hh108: What age category was the selected non-normative child in when s/he first received a mental................... 70health diagnosis?

hh109: Has the selected non-normative child ever been admitted for an overnight stay in a hospital................ 71for mental health problems?

hh112: How many times has the selected non-normative child been hospitalized for mental health or.................. 72emotional problems?

hh113: During the past six months, has the selected non-normative child received services from a............. 73mental health community support program?

- iii -


... 74hh114: Where does the selected non-normative child usually go for mental health care?hh115: When you are no longer alive or able to care for or do what you do for the selected

.75non-normative child, is there a family member who will be most involved with the child’s care?

... 76hh116rec: Who will be involved in the future care of the selected non-normative child?hh117rec: Who will be second most involved in the care of the selected non-normative child after the

......... 77person most involved is no longer able to care for the child?hh118: Have you spoken with the person who will take care of the selected non-normative child

................ 78about taking care of the child?hh119: Has the person named to take care of the selected non-normative child agreed to take care of

.................... 79the child?

- iv -


in person: non-normative extension interview

Documents