4b1 Edif

4.B.

Cross-Sectional Descriptive Study

4.B.1.

Enrollment and Demographic Information Form (EDIF)

NOTE TO OMB REVIEWER:

No burden is attached to this instrument. It is included here for illustrative purposes only.

ENROLLMENT AND DEMOGRAPHIC INFORMATION FORM (EDIF)

EDIFDATE (Today’s date) / /

Month Day Year

CHILDID (National evaluation ID)

TIMEFRAM (Assessment period) 1 = Intake

A. Sources of information used to complete this form [Select all that apply]

1 = Caregiver (child’s caregiver in a family, household environment)

2 = Staff as Caregiver (staffperson who has acted as the child’s day-to-day caregiver for the majority of the past 6 months)

3 = Youth

4 = Case record review

5 = Other

B. Agency that the child is currently involved with [Select all that apply]

1 = Corrections

2 = Juvenile court

3 = Probation

4 = School

5 = Mental health agency/clinic/provider

6 = Physical health care agency/clinic/provider

7 = Public child welfare

8 = Substance abuse agency/clinic/provider

9 = Family court

10 = Early care: Early Head Start program

11 = Early care: Head Start program

12 = Early care: Early intervention (Part C)

13 = Early care: Preschool special education program (Part B)

14 = Early care: Other early care and education programs/providers (including childcare/providers)

15 = Other—please specify

__________________________

[If 7 = Public child welfare not selected above, go to Item C.]

B1. Child welfare involvement

1 = Receiving child abuse and neglect investigation/assessment

2 = Court-ordered out-of-home placement— Foster care

3 = Court-ordered out-of-home placement—Kinship care

4 = Court-ordered out-of-home placement—Residential treatment

5 = Voluntary out-of-home placement— Foster care

6 = Voluntary out-of-home placement— Kinship care

7 = Voluntary out-of-home placement—Residential treatment

8 = Court-ordered in-home services

9 = Voluntary in-home services

C. Agency or individual who referred child to the program [Select primary referral agency]

1 = Corrections

2 = Juvenile court

3 = Probation

4 = School

5 = Mental health agency/clinic/provider

6 = Physical health care agency/clinic/provider

7 = Public child welfare

8 = Tribal child welfare agency

9 = Substance abuse agency/clinic/provider

10 = Family court

11 = Caregiver

12 = Self (youth referred himself or herself)

13 = Early care: Early Head Start program

14 = Early care: Head Start program

15 = Early care: Early intervention (Part C)

16 = Early care: Preschool special education program (Part B)

17 = Early care: Other early care and education programs/providers (including childcare/providers)

18 = Other—please specify

__________________________

666 = Not applicable

777 = Refused

888 = Don’t know

999 = Missing

SECTION I. Child Demographic Information

1.	What is (child’s name) date of birth? / / Month Day Year
2.	With which gender does (child’s name) identify? 1 = Male 2 = Female 3 = Transgender (male to female) 4 = Transgender (female to male) 5 = I don’t know/I’m not sure 6 = Other—please specify ____________________________________________
3.	Is (child’s name) of Hispanic, Latino, or Spanish origin? 1 = No [GO TO QUESTION #4] 2 = Yes, Mexican, Mexican American, or Chicano 3 = Yes, Puerto Rican 4 = Yes, Cuban 5 = Yes, another Hispanic, Latino, or Spanish origin—please specify ____________________________________
4.	What is (child’s name)’s race? [Select all that apply] 1 = White 2 = Black or African American 3 = American Indian or Alaska Native—please specify enrolled or principal tribe ____________________________________ 4 = Asian Indian 5 = Chinese 6 = Filipino 7 = Japanese 8 = Korean 9 = Vietnamese 10 = Other Asian—please specify race (for example, Hmong, Laotian, Thai, Pakistani, Cambodian, and so on) ____________________________________ 11 = Native Hawaiian 12 = Guamanian or Chamorro 13 = Samoan 14 = Other Pacific Islander—please specify race (for example, Fijian, Tongan, and so on) ____________________________________
5.	What is the ZIP Code of the address where (child’s name) currently lives? _______________
6.	What were the problems leading to (child’s name) being referred for services? [Select all that apply] 1 = Suicide-related problems (including suicide ideation, suicide attempt, self-injury) 2 = Depression-related problems (including major depression, dysthymia, sleep disorders, somatic complaints) 3 = Anxiety-related problems (including fears and phobias, generalized anxiety, social avoidance, obsessive–compulsive behavior, posttraumatic stress disorder) 4 = Hyperactive and attention-related problems (including hyperactive, impulsive, attentional difficulties) 5 = Conduct/delinquency-related problems (including physical aggression, extreme verbal abuse, noncompliance, sexual acting out, property damage, theft, running away, sexual assault, fire setting, cruelty to animals, truancy, police contact) 6 = Substance use, abuse, and dependence-related problems 7 = Adjustment-related problems (including changes in behaviors or emotions in reaction to a significant life stress) 8 = Psychotic behaviors (including hallucinations, delusions, strange or odd behaviors) 9 = Pervasive developmental disabilities (including autistic behaviors, extreme social avoidance, attachment disorder, stereotypes, perseverative behavior) 10 = Specific developmental disabilities (including enuresis, encopresis, expressive or receptive speech and language delay) 11 = Learning disabilities 12 = School performance problems not related to learning disabilities 13 = Eating disorders (including anorexia, bulimia) 14 = Gender identity 15 = Feeding problems in young children (including failure to thrive) 16 = Disruptive behaviors in young children (including aggression, severe defiance, acting out, impulsivity, recklessness, and excessive level of overactivity) 17 = Persistent noncompliance (when directed by caregivers/adults) 18 – Excessive crying/tantrums 19 = Separation problems 20 = Non-engagement with people 21 = Sleeping problems 22 = Excluded from preschool or childcare program, not related to learning disabilities (including behavioral issues, repeated noncompliance) 23 = At risk for or has failed family home placement 24 = Maltreatment (child abuse and neglect) 25 = Other problems that are related to child’s health (cancer, illness, or disease related-problems) 26 = High-risk environment: Maternal depression 27 = High-risk environment: Maternal mental health (other than depression) 28 = High-risk environment: Paternal mental health 29 = High-risk environment: Caregiver mental health (other than maternal or paternal) 30 = High-risk environment: Maternal substance abuse/use 31 = High-risk environment: Paternal substance abuse/use 32 = High-risk environment: Caregiver substance abuse/use (other than maternal or paternal) 33 = High-risk environment: Family health problems (maternal, paternal, caregiver, or other family member) 34 = High-risk environment: Other parent/caregiver/family problems 35 = High-risk environment: Problems related to housing (including homelessness) 36 = Other—please specify ____________________________________
7.	During the past 6 months, was (child’s name) the recipient of . . . ? [Select all that apply] 1 = Medicaid 2 = CHIP 3 = SSI 4 = TANF 5 = Private insurance 6 = Other—please specify ____________________________________

SECTION II. Child Diagnostic Information: DSM–IV–R and ICD–9

Children may have diagnostic codes for more than one classification system (e.g., DSM–IV–R and DC:0–3R).

8.	Does (child’s name) have a DSM–IV–R or ICD–9 diagnosis? 1 = No [GO TO QUESTION #13] 2 = Yes

In this section, please record the DSM–IV–R or ICD–9 diagnostic codes in the indicated fields. When entering diagnostic codes, please use the following prefixes in front of the codes without spaces:

• DSM–IV–R — DSM

• ICD–9 — ICD

Examples: A DSM–IV–R diagnosis of Alcohol-Induced Anxiety Disorder should be entered as DSM291.89. An ICD–9 diagnosis of Drug-Induced Delirium should be entered as ICD292.81.

The entire list of diagnostic codes is available in PDF format for your reference.

9.	Has diagnostic evaluation been done as part of the intake into the system of care program? 1 = No 2 = Yes 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
10.	Date of the most recent multiaxial diagnostic evaluation ________________________________ (mm/dd/yyyy)
11.	Who provided the diagnosis? 1 = Child psychiatrist 2 = General psychiatrist 3 = Child psychologist 4 = General psychologist 5 = Licensed mental health staff (clinical social worker/professional counselor/ therapist) 6 = Primary care physician 7 = Nurse practitioner psychiatric nurse practitioner/physician’s assistant) 8 = Other licensed physical health staff 9 = Unlicensed staff (mental health assessment specialist) 10 = Other—please specify ____________________________________ 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing

[Primary diagnosis should be listed as the first diagnosis on each axis (1a, 2a).]

12.	AXIS I: Clinical Disorders Diagnostic code DSM–IV–R name axis_1a _________.____ _________________________________________ axis_1b _________.____ _________________________________________ axis_1c _________.____ _________________________________________
	AXIS II: Personality Disorders and Mental Retardation Diagnostic code DSM–IV–R name axis_2a _________.____ _________________________________________ axis_2b _________.____ _________________________________________
	AXIS III: General Medical Condition (ICD–9–CM numeric code) [Separate multiple codes with commas] ICD–9–CM numeric code axis 3 ______________________________________________________________________
	AXIS IV: Psychosocial and Environmental Problems [Select all that apply] 1 = Problems with primary support group 2 = Problems related to the social environment 3 = Educational problems 4 = Occupational problems 5 = Housing problems 6 = Economic problems 7 = Problems with access to health care services 8 = Problems related to interaction with the legal system/crime 9 = Other psychosocial and environmental problems 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	AXIS V: Global Assessment of Functioning Scale (GAF) [Enter current GAF score]	_______________

SECTION III. Child Enrollment Information

13.	Date of child’s assessment for system of care eligibility ________________________________ (mm/dd/yyyy)
	13a. System of care enrollment status of the child 1 = Child is receiving, or has received, a service that is provided through the system of care (e.g., assessment, crisis intervention, etc.) but is NOT eligible for additional system of care services [GO TO QUESTION #17] 2 = Child has received a system of care service and is eligible for additional services but will NOT be receiving any additional services [GO TO QUESTION #17] 3 = Child is eligible for system of care services and is receiving, or about to receive, system of care services [GO TO QUESTION #13b]
	13b. Date of the child’s first service (after assessment for system of care eligibility) received through the system of care ________________________________ (mm/dd/yyyy)

[Questions #13c–13e are skipped, as they are not applicable at intake.]

	13f. If the child is younger than age 6, how was system of care eligibility determined? 1 = Child has an emotional, socio-emotional, behavioral, or mental disorder diagnosable under the DSM–IV or its ICD–9–CM equivalents, or subsequent revisions, or under the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood–Revised (DC:0–3R) [GO TO QUESTION #14] 2 = Child (aged birth through 3 years) has a DC:0­3R Axis II Relationship Disorder and a PIRGAS score of 40 or below indicating a Relationship Disorder in the “Disturbed” category. [GO TO QUESTION #14] 3 = Child (aged birth through 5 years) was assessed using a standardized instrument such as the BABES, Strengths and Difficulties Questionnaire, or Vineland Screener, and was judged by a licensed professional to be at “imminent risk” for developing a mental health or serious emotional disorder. [GO TO QUESTION #13d] 4 = Not applicable, as the child is aged 6 or older. [GO TO QUESTION #14]
	13g. Which standardized instrument(s) were used to assess system of care eligibility? [Select all that apply] 1 = Behavioral Assessment of Baby’s Emotional and Social Style (BABES) 2 = Strengths and Difficulties Questionnaire 3 = Family Resource Scale 4 = Vineland Screener 5 = Other—please specify ____________________________________
14.	Who participated in the development of the service plan? (Evidence of participation includes signatures of attendees on the plan, or attendees mentioned as being present for the meeting.) a. Child’s caregiver or guardian 1 = No 2 = Yes b. Child 1 = No 2 = Yes c. Other family member 1 = No 2 = Yes d. Case manager/service coordinator/ system of care/wrap specialist 1 = No 2 = Yes e. Therapist 1 = No 2 = Yes f. Other mental health staff 1 = No 2 = Yes—specify _____________________ (e.g., behavioral aide, respite worker) g. Education staff (e.g., teacher, counselor) 1 = No 2 = Yes—specify _____________________ h. Child welfare staff (e.g., case worker) 1 = No 2 = Yes—specify _____________________ i. Juvenile justice (e.g., probation officer) 1 = No 2 = Yes—specify _____________________ j. Health staff (e.g., pediatrician, nurse) 1 = No 2 = Yes—specify _____________________ k. Family advocate 1 = No 2 = Yes—specify _____________________ l. Other 1 = No 2 = Yes—specify _____________________ m. Other 1 = No 2 = Yes—specify _____________________

[Questions #15 and #16 are to be completed by site evaluation staff.]

15.	Is (child’s name) enrolled in the Longitudinal Outcome Study? 1 = No [GO TO QUESTION #16] 2 = Yes [GO TO QUESTION #17]
16.	Reason the child is not enrolled in the Longitudinal Outcome Study: 1 = Ineligible—sibling participating in the study 2 = Ineligible—child not selected through the site’s sampling scheme 3 = Ineligible—missed 30-day baseline data collection window 4 = Ineligible—enrolled in the Longitudinal Outcome Study at another site 5 = Caregiver or independent youth refused to consent 6 = Caregiver or independent youth not able to provide consent (e.g., mental health conditions, substance abuser) 7 = Language (interviews cannot be conducted in the preferred language of caregiver or youth) 8 = Never received services (e.g., inappropriate referral, no further involvement with service system, moved prior to enrollment) 9 = Family in crisis 10 = Delay in local evaluation procedures (e.g., due to delays in national start-up, local IRB delays, staffing issues) 11 = Other—please specify __________________________

SECTION IV. Additional Child Diagnostic Information: Revised DC:0–3 (DC:0–3R)

17.	Does (child’s name) have diagnostic information for the Revised DC:0–3 (DC:0–3R)? [Note: The DC:0–3R codes are intended for use with children up to age 4.] [Enter 666 if the child is aged 4 or older.] 1 = No [END OF QUESTIONNAIRE] 2 = Yes 666 = Not applicable [END OF QUESTIONNAIRE] 777 = Refused to answer [END OF QUESTIONNAIRE] 888 = Don’t know [END OF QUESTIONNAIRE] 999 = Missing [END OF QUESTIONNAIRE]
18.	Has diagnostic evaluation been done as part of the intake into the system of care program? 1 = No 2 = Yes 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
19.	Date of the most recent DC:0–3R diagnostic evaluation ________________________________ (mm/dd/yyyy)
20.	Who provided the diagnosis? 1 = Child psychiatrist 2 = General psychiatrist 3 = Child psychologist 4 = General psychologist 5 = Licensed mental health staff (clinical social worker/professional counselor/ therapist) 6 = Primary care physician 7 = Nurse practitioner psychiatric nurse practitioner/physician’s assistant) 8 = Other licensed physical health staff 9 = Unlicensed staff (mental health assessment specialist) 10 = Other—please specify ____________________________________ 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
21.	AXIS I: Clinical Disorders [Select from the attached list of DC:0–3R Axis I codes]
	21a. First/primary diagnosis ____________________________________________________ [If “800 = other disorders” selected, please specify the code with the appropriate prefix, e.g., DSM, ICD9, ICD10]
	21b. Second diagnosis ____________________________________________________ [If “800 = other disorders” selected, please specify the code with the appropriate prefix, e.g., DSM, ICD9, ICD10]
	21c. Third diagnosis ____________________________________________________ [If “800 = other disorders” selected, please specify the code with the appropriate prefix, e.g., DSM, ICD9, ICD10]

DC:0–3R Axis I codes:

100 = Posttraumatic Stress Disorder

150 = Deprivation/Maltreatment Disorder

200 = Disorders of Affect

210 = Prolonged Bereavement/Grief Reaction

220 = Anxiety Disorders of Infancy and Early Childhood

221 = Separation Anxiety Disorder

222 = Specific Phobia

223 = Social Anxiety Disorder (Social Phobia)

224 = Generalized Anxiety Disorder

225 = Anxiety Disorder NOS (Not Otherwise Specified)

230 = Depression of Infancy and Early Childhood

231 = Type 1 (type I) Major Depression

232 = Type 2 (type II) Major Depression

240 = Mixed Disorders of Emotional Expressiveness

300 = Adjustment Disorder

400 = Regulation Disorders of Sensory Processing

410 = Hypersensitive

411 = Hypersensitive—Type A: Fearful/Cautious

412 = Hypersensitive—Type B: Negative/Defiant

420 = Hyposensitive/Underresponsive

430 = Sensory Stimulation-Seeking/Impulsive

500 = Sleep Behavior Disorder

510 = Sleep-Onset Disorder (Sleep-Onset Protodyssomnia)

520 = Night-Waking Disorder (Night-Waking Protodyssomnia)

600 = Feeding Behavior Disorder

601 = Feeding Disorder of State Regulation

602 = Feeding Disorder of Caregiver–Infant Reciprocity

603 = Infantile Anorexia

604 = Sensory Food Aversions

605 = Feeding Disorder Associated With Concurrent Medical Condition

606 = Feeding Disorder Associated With Insults to the Gastrointestinal Tract

700 = Disorders of Relating and Communicating

710 = Multi-System Developmental Disorder (MSDD)

800 = Other Disorders (DSM–IV–TR or ICD10)

666 = Not applicable

777 = Refused to answer

888 = Don’t know

999 = Missing

22.	AXIS II: Relationship Classification: Parent–Infant Relationship Global Assessment Scale (PIR–GAS)
	22a. Parent–Infant Relationship Global Assessment Scale (PIR–GAS) Score [Enter PIR–GAS score—valid scores range from 1 to 100] _________________ [IF 1–100, GO TO QUESTION #23] 666 = Not applicable [GO TO QUESTION #22b] 777 = Refused to answer [GO TO QUESTION #22b] 888 = Don’t know [GO TO QUESTION #22b] 999 = Missing [GO TO QUESTION #22b]
	22b. Parent–Infant Relationship Global Assessment Scale (PIR–GAS) Categories [Choose one, only if numeric PIR–GAS score is not entered above] 91–100 = Well adapted 81–90 = Adapted 71–80 = Perturbed 61–70 = Significantly perturbed 51–60 = Distressed 41–50 = Disturbed 31–40 = Disordered 21–30 = Severely disordered 11–20 = Grossly impaired 1–10 = Documented maltreatment 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
23.	AXIS II: Relationship Classification: Relationship Problems Checklist (RPCL) [Choose one for each relationship feature]
	23a. Overinvolved 1 = No evidence 2 = Some evidence, needs further investigation 3 = Substantive evidence 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	23b. Underinvolved 1 = No evidence 2 = Some evidence, needs further investigation 3 = Substantive evidence 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	23c. Anxious/tense 1 = No evidence 2 = Some evidence, needs further investigation 3 = Substantive evidence 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	23d. Angry/hostile 1 = No evidence 2 = Some evidence, needs further investigation 3 = Substantive evidence 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	23e. Verbally abusive 1 = No evidence 2 = Some evidence, needs further investigation 3 = Substantive evidence 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	23f. Physically abusive 1 = No evidence 2 = Some evidence, needs further investigation 3 = Substantive evidence 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	23g. Sexually abusive 1 = No evidence 2 = Some evidence, needs further investigation 3 = Substantive evidence 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
24.	AXIS III: General Medical Condition (ICD–9–CM/ICD–10 numeric code) [Separate multiple codes with commas] ICD–9–CM/ICD–10 numeric code ___________________________________________________________________________
25.	AXIS IV: Psychosocial and Environmental Problems [Select all that apply] 1 = Problems with primary support group 2 = Problems related to the social environment 3 = Educational/childcare problems 4 = Occupational problems 5 = Housing problems 6 = Economic problems 7 = Problems with access to health care services 8 = Problems related to interaction with the legal system/crime 9 = Other psychosocial and environmental problems 10 = Problems related to health of the child 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
26.	AXIS V: Emotional and Social Functioning: Capacities for Emotional and Social Functioning Rating Scale [Choose one functional rating for each emotional/functioning capacity]
	26a. Attention and regulation 1 = Age-appropriate functioning, all conditions and full affect 2 = Age-appropriate functioning, vulnerable to stress or limited range of affect 3 = Functions immaturely (has the capacity but not at age-appropriate level) 4 = Functions inconsistently without special sensorimotor support 5 = Barely evidences the capacity, even with support 6 = Has not achieved this capacity 7 = N/A, child below age level 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	26b. Forming relationships/mutual engagement 1 = Age-appropriate functioning, all conditions and full affect 2 = Age-appropriate functioning, vulnerable to stress or limited range of affect 3 = Functions immaturely (has the capacity but not at age-appropriate level) 4 = Functions inconsistently without special sensorimotor support 5 = Barely evidences the capacity, even with support 6 = Has not achieved this capacity 7 = N/A, child below age level 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	26c. Intentional two-way communication 1 = Age-appropriate functioning, all conditions and full affect 2 = Age-appropriate functioning, vulnerable to stress or limited range of affect 3 = Functions immaturely (has the capacity but not at age-appropriate level) 4 = Functions inconsistently without special sensorimotor support 5 = Barely evidences the capacity, even with support 6 = Has not achieved this capacity 7 = N/A, child below age level 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	26d. Complex gestures and problem-solving 1 = Age-appropriate functioning, all conditions and full affect 2 = Age-appropriate functioning, vulnerable to stress or limited range of affect 3 = Functions immaturely (has the capacity but not at age-appropriate level) 4 = Functions inconsistently without special sensorimotor support 5 = Barely evidences the capacity, even with support 6 = Has not achieved this capacity 7 = N/A, child below age level 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	26e. Use of symbols to express thoughts/feeling 1 = Age-appropriate functioning, all conditions and full affect 2 = Age-appropriate functioning, vulnerable to stress or limited range of affect 3 = Functions immaturely (has the capacity but not at age-appropriate level) 4 = Functions inconsistently without special sensorimotor support 5 = Barely evidences the capacity, even with support 6 = Has not achieved this capacity 7 = N/A, child below age level 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing
	26f. Connecting symbols logically/abstract thinking 1 = Age-appropriate functioning, all conditions and full affect 2 = Age-appropriate functioning, vulnerable to stress or limited range of affect 3 = Functions immaturely (has the capacity but not at age-appropriate level) 4 = Functions inconsistently without special sensorimotor support 5 = Barely evidences the capacity, even with support 6 = Has not achieved this capacity 7 = N/A, child below age level 666 = Not applicable 777 = Refused to answer 888 = Don’t know 999 = Missing