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[p.279]

A
Begin interview by asking: When we conducted the interview several months ago, we recorded (sample child's) age as (age from label). Is this still correct?
1[] Yes (Go to Section A on page 5)
2[] No (Correct age on label, then go to Section A on page 5)

[p.281]

Section A - Home Care Services

Read to respondent: Because of earlier participation by your family in the
National Health Interview Survey, (child) has been selected for a special followup study on children's health. In order to get a complete picture of the health needs of U.S. children, we have included a wide range of children in this survey. For this reason, some of the questions may not seem relevant to (child), but your honest responses will help us get an accurate description of the health status and health care needs of U.S. children.

Now I am going to ask you about any SPECIAL HELP AND SUPERVISION that (child) NOW receives at home. By this I mean help BEYOND what is needed by most children [his/her] age.

ITEM A1
Refer to child's age

1[] 5+ years old (Go to 1a)
2[] Other (Skip to 2)
1a. Does (child) NEED special help at home with personal care, that is, help with bathing, dressing, eating, toileting, getting in or out of bed or chairs, or getting around inside the home BEYOND WHAT IS NEEDED BY MOST CHILDREN [HIS/HER] AGE?

1[] Yes (Go to 1b)
2[] No (Skip to 3)
9[] DK (Skip to 3)

b. During the past 12 months, did (child) receive, as part of [his/her] care, training to increase [his/her] independence in daily living skills, such as bathing, dressing, eating, and toileting?

1[] Yes (Skip to 3)
2[] No (Skip to 3)
9[] DK (Skip to 3)

2. Because of any significant delays in development, does (child) need special help at home?

1[] Yes
2[] No
9[] DK

3. Because of a physical, mental, or emotional problem, does (child) need constant supervision or need to be watched more closely than other children [his/her] age?

1[] Yes
2[] No
9[] DK

ITEM A2
Refer to questions 1a, 2, and 3. (Special help or supervision)

1[] "Yes" in 1a, 2, and/or 3 (Go to 4a)
2[] All other (Skip to 10 on page 10)
4a. You said (child) needs [special help/(and) supervision] at home. What are the names of all of the people who helped with (child's) [personal care/(and) supervision] in the PAST TWO WEEKS? This includes [special help/(and) supervision] provided by you, other family members, friends, volunteers, or paid professionals. DO NOT INCLUDE PHYSICAL OR OCCUPATIONAL THERAPISTS.
Anyone else?

(Record up to 4 names in Table H on pages 6, and 7. Return to 4b)
or
0[] None in past 2 weeks (Skip to 9 on page 8)
9[] DK (Skip to 9 on page 8)

Ask 4b only if 4 names in Table H; otherwise
b. Besides helpers you just mentioned, has anyone else helped (child) AT HOME with personal care or supervision in the past two weeks?

1[] Yes (Go to 4c)
2[] No (Skip to 5a on page 6)
9[] DK (Skip to 5a on page 6)

c. How many other people have helped?

________ Helper(s)
(Number)

00[] None
99[] DK

d. How many of these additional helpers were paid?

________ Paid Helper(s)
(Number)

00[] None
99[] DK

[p.282]

Section A - Home Care Services - Continued

Table H
Ask 5-8 separately for each helper listed.

Helper 01
Helper name

_______

5a. Does (helper) help with (child's) personal care, supervision or both?
Mark (X) only one.

1[] Personal care
2[] Supervision
3[] Both
9[] DK

Verify and mark (X) if known or hand card C1 and ask. Read categories if telephone interview.

(Emily's note: Although the survey says card C1, it appears to actually require card DG1. Card C1 lists activities SC might have difficulty with.)

CARD DG1

0. Parent
1. Other relative who lives here
2. Other relative who does not live
3. Non-relative who lives here
4. Friend/Neighbor
5. Unpaid volunteer from an organization or business
6. Paid employee if an organization or business
7. Paid employee of yours
8. Other

b. What is (helper's) relationship to (child)?
Mark (X) only one.

0[] Parent (Skip to 6g)
1[] Other relative in HH (Go to 6a)
2[] Other relative not in HH (Go to 6a)
3[] Non-relative in HH (Go to 6a)
4[] Friend/Neighbor (Go to 6a)
5[] Unpaid volunteer from an organization or business (Skip to 6f)
6[] Paid employee if an organization or business (Skip to 6b)
7[] Paid employee of yours (Skip to 6b)
8[] Other (Go to 6a)
9[] DK (Go to 6a)

6a. Is this help paid for?

1[] Yes (Go to 6b)
2[] No (Skip to 6f)
9[] DK (Skip to 6f)

Hand card C2. Read categories if telephone interview.

card C2 does not list these categories. Card G2 seems to be the correct one.

CARD DG2

0. Parent
1. Other relative who lives here
2. Other relative who does not live here
3. Private insurance
4. Rehabilitation program
5. Medicaid
6. Public school system
7. Other public source
8. Other private source
9. Other

b. Who pays for this help?
(Anyone else?)
Mark (X) all that apply.

00[] Parents
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free
99[] DK

Ask if more than one box marked in 6b; if only one, transcribe the number of the box without asking.
c. Who pays for most of this help? Record box number from 6b.

__ __ Paid most
(Number)

99[] DK

Ask 6d and e only if box 00 or 01 marked in 6b; otherwise, skip to 6f.
d. DURING THE PAST 12 MONTHS, about how much did the family pay for this help? Do not count any money that will be reimbursed by insurance or any other source.

00000[] None

$_____ . [ 00 ]

99999[] DK

e. DURING THE PAST 2 WEEKS, about how much did the family pay for this help? Do not count any money that will be reimbursed by insurance or any other source.

00000[] None

$_____ . [ 00 ]

99999[] DK

f. How satisfied or dissatisfied are you with this help? Are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied?
Mark (X) only one.

1[] Very satisfied
2[] Somewhat satisfied
3[] Somewhat dissatisfied
4[] Very dissatisfied
9[] DK

Ask or verify:
g. Is (helper) male or female?

1[] Male
2[] Female
3[] DK

7. How many days in the past 2 weeks did (helper) help?

00[] None (Go to 5a for next helper, or A3 on page 8)

______ Days

14[] All
99[] DK

8. How many hours per day did (helper) help in the past 2 weeks?

00[] None (Go to 5a for next helper, or A3 on page 8)

________ Hours (Go to 5a for next helper, or A3 on page 8)

96[] Less than one hour (Go to 5a for next helper, or A3 on page 8)
99[] DK (Go to 5a for next helper, or A3 on page 8)

[p.283]

Section A - Home Care Services - Continued

ITEM A3
Refer to question 5b for ALL HELPERS in Table H.
(Any related household members)

1[] Box "0" or "1" marked (Go to 9)
2[] Other (Skip to 10 on page 10)

Respite care for children with special needs is care provided by a person or organization to relieve the parent or family caregivers. It can be provided at your home, someone else's home, a home run by an organization, a facility, or an institution.
9a. During the past 12 months, have you used any respite care for (child) so that you or your family could go out for awhile, take a break, or go on vacation?

1[] Yes
2[] No
9[] DK

b. During the past 12 months, have you NEEDED any (additional) respite care for (child)?

1[] Yes
2[] No
9[] DK

ITEM A4
Refer to question 9a.
(Respite care in past 12 months)

1[] "Yes" in 9a (Go to 9c)
2[] Other (Skip to 10 on page 10)

Ask 9c(1)-(5) before going to 9d-f.
9c. Was any of this respite care in the past 12 months provided by --

(1) A relative, friend or neighbor?
1[] Yes
2[] No
9[] DK


(2) An unpaid volunteer from an organization or business?
1[] Yes
2[] No
9[] DK


(3) A paid employee of an organization or business?
1[] Yes
2[] No
9[] DK


(4) A paid employee of yours?
1[] Yes
2[] No
9[] DK


(5) Any other source?
1[] Yes
2[] No
9[] DK

Ask 9d-f for each provider marked "Yes" in 9c.
9d. Altogether, how many days in the past 12 months did you use care provided by ("Yes" in 9c)?

(1) A relative, friend or neighbor
________ Days
(Number)

99[]DK


(2) An unpaid volunteer from an organization or business
________ Days
(Number)

99[]DK


(3) A paid employee of an organization or business
________ Days
(Number)

99[]DK


(4) A paid employee of yours
________ Days
(Number)

99[]DK


(5) Any other source
________ Days
(Number)

99[]DK

[p.284]

Section A - Home Care Services - Continued

Read categories if necessary.

9e. On the day(s) that you used this care, on the average how many hours did you use it?
Round fractions to the nearest whole hour.

(1) A relative, friend or neighbor
1[] Less than 1 hour
2[] 1-2 hours
3[] 3-11 hours
4[] 12-24 hours
9[] DK


(2) An unpaid volunteer from an organization or business
1[] Less than 1 hour
2[] 1-2 hours
3[] 3-11 hours
4[] 12-24 hours
9[] DK


(3) A paid employee of an organization or business
1[] Less than 1 hour
2[] 1-2 hours
3[] 3-11 hours
4[] 12-24 hours
9[] DK


(4) A paid employee of yours
1[] Less than 1 hour
2[] 1-2 hours
3[] 3-11 hours
4[] 12-24 hours
9[] DK


(5) Any other source
1[] Less than 1 hour
2[] 1-2 hours
3[] 3-11 hours
4[] 12-24 hours
9[] DK

9f. Where was this care provided?
Anywhere else?
Mark (X) all that apply.

(1) A relative, friend or neighbor
1[] Child's home
2[] Home run by organization
3[] Other private home
4[] Facility or institution
5[] Other
9[] DK


(2) An unpaid volunteer from an organization or business
1[] Child's home
2[] Home run by organization
3[] Other private home
4[] Facility or institution
5[] Other
9[] DK


(3) A paid employee of an organization or business
1[] Child's home
2[] Home run by organization
3[] Other private home
4[] Facility or institution
5[] Other
9[] DK


(4) A paid employee of yours
1[] Child's home
2[] Home run by organization
3[] Other private home
4[] Facility or institution
5[] Other
9[] DK


(5) Any other source
1[] Child's home
2[] Home run by organization
3[] Other private home
4[] Facility or institution
5[] Other
9[] DK

[p.285]

Section A - Home Care Services - Continued

10. Does (child's) health require that [he/she] be left only with a person trained to handle MEDICAL EMERGENCIES or perform special procedures?

1[] Yes
2[] No
9[] DK

11a. Does (child) regularly receive any shots or injections at home?

1[] Yes (Go to 11b)
2[] No (Skip to 12)
9[] DK (Skip to 12)

b. Who gives the shots?
Anyone else?
Mark (X) all that apply.

1[] Parent
2[] Child (him/herself)
3[] Doctor/Nurse
4[] Other
9[] DK

Hand card C4. Read categories if telephone interview.

(Emily's note: CARD C4 in the survey refers to ranges of money. The correct card the question used was not found.)

12. Did you have any of these problems trying to get help at home for (child) during the past 12 months?
(Anything else?)
Mark (X) all that apply.

00[] Did not try to get home care service

01[] Service not available
02[] Had trouble finding the right kind of service
03[] Medicaid not accepted
04[] Insurance did not cover
05[] Too expensive/can't afford
06[] Difficulty arranging it
07[] Helpers not reliable
08[] Helpers not properly trained or equipped
09[] Helpers hours not convenient
10[] Could not take off from work to arrange it
11[] Other problem

12[] No problem getting help
99[] DK

[p.286]

Section B - Work/Child Care

1a. Have you worked at a job or business for pay in the past month?

1[] Yes (Go to 1b)
2[] No (Skip to 2)

b. How many hours do you usually work each week?

______ Number of hours worked each week

99[] DK

2a. Did you attend school in the past month?

1[] Yes (Go to 2b)
2[] No (Skip to item B1)

b. How many hours do you usually attend school each week?

_____ Number of hours in school each week

99[] DK

ITEM B1
Refer to questions 1a and 2a above.
(Work and/or attend school)

1[] "Yes" in 1a or 2a (Go to Item B2)
2[] All other (Skip to Section C on page 12)
ITEM B2
Refer to child's age on label.

1[] 3+ years old (Go to 3)
2[] Other (skip to 4)
3. Did (child) attend school during the past month? (Include preschool, nursery school, and kindergarten, as well as regular schools.)

1[] Yes
2[] No
9[] DK

4a. (Not counting (child's) regular school hours) who took care of (child) MOST OFTEN when you were at [work/(or) school] during the past month?
Mark (X) only one.

01[] Mother/father only works during school hours (Skip to Section C on page 12)
02[] Mother cares for child (Skip to Section C on page 12)
03[] Father cares for child (Skip to Section C on page 12)
04[] Child cares for self (Go to 4b)
05[] Other relatives care for child (Skip to 4c)
06[] Unrelated babysitter (Skip to 4d)
07[] Care provided at school (Skip to 4e)
08[] Day care center (Skip to 4e)
09[] Day camp (Skip to 4e)
10[] Other (Skip to 4d)
99[] DK (Skip to Section C on page 12)

b. Approximately how many hours did (child) take care of [himself/herself] LAST WEEK?

00 [] None (Skip to Section C on page 12)

______ Number of hours (Skip to Section C on page 12)

99[] DK (Skip to Section C on page 12)

c. how is this person related to (child)?

1[] Brother/sister
2[] Grandparent
3[] Other
9[] DK

d. Where was (child) cared for most often, at home or somewhere else?

1[] Child's home
2[] Somewhere else
9[] DK

e. Approximately how many hours was (child) cared for by (answer in 4a) while you [worked/(or) went to school] LAST WEEK?

00[] None

_______ Number of hours

99[] DK

f. Do you pay for this child care?

1[] Yes
2[] No
9[] DK

g. How satisfied are you with this child care? Are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied?

1[] Very satisfied
2[] Somewhat satisfied
3[] Somewhat dissatisfied
4[] Very dissatisfied
9[] DK

[p.287]

Section C - Medical Services

The following questions concern medical care for (child). Do not count visits for counseling or mental health therapy.

1. During the past 12 months has (child) had any visits to a doctor's office, clinic, hospital, or some other place for health care?

1[] Yes (Go to 2)
2[] No (Skip to Section D on page 13)
9[] DK (Skip to Section D on page 13)

Hand card C5. Read categories if telephone interview.

(Emily's note: Card C5 or a card relating to the reasons why a child last went to medical appointment was not found)

2. Why did (child) LAST go to a clinic, health center, hospital, doctor's office, or other medical facility?
(Anything else?)
Mark (X) all that apply.

1[] Well child care such as a physical or immunization
2[] Care for an illness, injury or special condition
3[] Consultation
4[] Other
9[] DK

3. During the past 12 months, how many times has (child) been to a hospital emergency room?

00[] None
_______ Times
(Number)

99[] DK

4. During the past 12 months, has (child) received any treatments AT A HOSPITAL ON A REGULAR BASIS?
Read if necessary: For example, dialysis, IV treatments, radiation treatments, chemotherapy, transfusions, or physical therapy.

1[] Yes
2[] No
9[] DK

[p.288]

Section D - Assistive Devices and Technologies

The next questions are about medical devices and implants.
Ask 1a-o before going to 2.
1. In the past 12 months, did (child) use any of the following medical devices or supplies?

a. A tracheotomy tube?
1[] Yes
2[] No
9[] DK


b. A respirator?
1[] Yes
2[] No
9[] DK


c. An ostomy bag?
1[] Yes
2[] No
9[] DK


d. Catheterization equipment?
1[] Yes
2[] No
9[] DK


e. A glucose monitor?
1[] Yes
2[] No
9[] DK


f. Diabetic equipment or supplies?
1[] Yes
2[] No
9[] DK


g. An inhaler?
1[] Yes
2[] No
9[] DK


h. A nebulizer?
1[] Yes
2[] No
9[] DK


i. A hearing aid?
1[] Yes
2[] No
9[] DK


j. A feeding tube?
1[] Yes
2[] No
9[] DK


k. A wheelchair?
1[] Yes
2[] No
9[] DK


l. A scooter?
1[] Yes
2[] No
9[] DK


m. Crutches?
1[] Yes
2[] No
9[] DK


n. A cane?
1[] Yes
2[] No
9[] DK


o. A walker?
1[] Yes
2[] No
9[] DK

Ask for each "Yes" in 1.
2. Did (child) use (device) in the past two weeks?

a. A tracheotomy tube
1[] Yes
2[] No
9[] DK


b. A respirator
1[] Yes
2[] No
9[] DK


c. An ostomy bag
1[] Yes
2[] No
9[] DK


d. Catheterization equipment
1[] Yes
2[] No
9[] DK


e. A glucose monitor
1[] Yes
2[] No
9[] DK


f. Diabetic equipment or supplies
1[] Yes
2[] No
9[] DK


g. An inhaler
1[] Yes
2[] No
9[] DK


h. A nebulizer
1[] Yes
2[] No
9[] DK


i. A hearing aid
1[] Yes
2[] No
9[] DK


j. A feeding tube
1[] Yes
2[] No
9[] DK


k. A wheelchair
1[] Yes
2[] No
9[] DK


l. A scooter
1[] Yes
2[] No
9[] DK


m. Crutches
1[] Yes
2[] No
9[] DK


n. A cane
1[] Yes
2[] No
9[] DK


o. A walker
1[] Yes
2[] No
9[] DK

ITEM D1
Refer to question 1 above
(Devices used in the past 12 months)

1[] Yes, one or more used (Go to 3)
2[] Other (Skip to 4)
3. During the past 12 months, about how much did the family pay for [this device/these devices]? Do not include money reimbursed by insurance or any other source.

00000[] None

$_____ . [ 00 ]

99999[] DK

4. Does (child) now have any of the following implants?

a. An ear vent tube?
1[] Yes
2[] No
9[] DK


b. Any shunt that drains away fluid?
1[] Yes
2[] No
9[] DK


c. An artificial joint?
1[] Yes
2[] No
9[] DK


d. Implanted lens?
1[] Yes
2[] No
9[] DK


e. Implanted pin, screw, nail, wire, rod, or plate?
1[] Yes
2[] No
9[] DK


f. An artificial heart valve?
1[] Yes
2[] No
9[] DK


g. A pacemaker?
1[] Yes
2[] No
9[] DK


h. Silicone implant?
1[] Yes
2[] No
9[] DK


i. Infusion pump?
1[] Yes
2[] No
9[] DK


j. A cochlear (kok'le-?r) implant?
1[] Yes
2[] No
9[] DK


k. Any other organ implant?
1[] Yes
2[] No
9[] DK

[p.289-294]

Section E - Other Services

The next questions are about other services (child) may have received.
1a. During the past 12 months, did (child) receive any services from ______ ?

(A) A Physical therapist
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(B) An occupational therapist
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(C) An audiologist
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(D) A speech therapist or pathologist
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(E) A recreational therapist
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(F) A visiting nurse
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)

1a. During the past 12 months, did (child) receive any services from ______ ?

(G) A personal care attendant (other than a family or a friend)
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(H) A reader or interpreter
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(I) Home visits from a doctor
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)

1a. During the past 12 months, did (child) receive any services from ______ ?

(J) Services from a center for independent living
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(K) Respiratory therapy services
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(L) Social work services
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)


(M) Transportation services
1[] Yes (Skip to 2a)
2[] No (Go to 1b)
9[] DK (Go to 1b)

b. Did (child) need the services of ________ in the past 12 months?

(A) A Physical therapist
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(B) An occupational therapist
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(C) An audiologist
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(D) A speech therapist or pathologist
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(E) A recreational therapist
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(F)
A visiting nurse
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service on page 16)
9[] DK (Go to 1 for next service on page 16)

b. Did (child) need the services of ________ in the past 12 months?

(G) A personal care attendant (other than a family or a friend)
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(H) A reader or interpreter
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(I) Home visits from a doctor
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service on page 18)

b. Did (child) need the services of ________ in the past 12 months?

(J) Services from a center for independent living
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(K) Respiratory therapy services
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(L) Social work services
1[] Yes (Skip to 5)
2[] No (Go to 1 for next service)
9[] DK (Go to 1 for next service)


(M) Transportation services
1[] Yes (Skip to 5)
2[] No (Skip to 6 on page 20)
9[] DK (Skip to 6 on page 20)

2a. During the past 12 months, in how many months did (child) receive services from _______ ?

(A) A Physical therapist
______ Months
(Number)

99[]DK


(B) An occupational therapist
______ Months
(Number)

99[]DK


(C) An audiologist
______ Months
(Number)

99[]DK


(D) A speech therapist or pathologist
______ Months
(Number)

99[]DK


(E) A recreational therapist
______ Months
(Number)

99[]DK


(F) A visiting nurse
______ Months
(Number)

99[]DK

2a. During the past 12 months, in how many months did (child) receive services from _______ ?

(G) A personal care attendant (other than a family or a friend)
______ Months
(Number)

99[]DK


(H) A reader or interpreter
______ Months
(Number)

99[]DK


(I) Home visits from a doctor
______ Months
(Number)

99[]DK

2a. During the past 12 months, in how many months did (child) receive services from _______ ?

(J) Services from a center for independent living
______ Months
(Number)

99[]DK


(K) Respiratory therapy services
______ Months
(Number)

99[]DK


(L) Social work services
______ Months
(Number)

99[]DK


(M) Transportation services
______ Months
(Number)

99[]DK

b. What was the total number of times (child) received services from ________ during [that/those] month(s)?

(A) A Physical therapist
______ Times
(Number)

99[]DK


(B) An occupational therapist
______ Times
(Number)

99[]DK


(C) An audiologist
______ Times
(Number)

99[]DK


(D) A speech therapist or pathologist
______ Times
(Number)

99[]DK


(E) A recreational therapist
______ Times
(Number)

99[]DK


(F) A visiting nurse
______ Times
(Number)

99[]DK

b. What was the total number of times (child) received services from ________ during [that/those] month(s)?

(G) A personal care attendant (other than a family or a friend)
______ Times
(Number)

99[]DK


(H) A reader or interpreter
______ Times
(Number)

99[]DK


(I) Home visits from a doctor
______ Times
(Number)

99[]DK

b. What was the total number of times (child) received services from ________ during [that/those] month(s)?

(J) Services from a center for independent living
______ Times
(Number)

99[]DK


(K) Respiratory therapy services
______ Times
(Number)

99[]DK


(L) Social work services
______ Times
(Number)

99[]DK


(M) Transportation services
______ Times
(Number)

99[]DK

Hand card C2. Read categories if telephone interview.

card C2 does not list these categories

3a. Who paid or will pay or the services (child) received from ______ in the past 12 months?
(Anyone else?)
Mark (X) all that apply.

(A) A Physical therapist
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(B) An occupational therapist
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(C) An audiologist
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(D) A speech therapist or pathologist
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(E) A recreational therapist
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(F) A visiting nurse
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)

Hand card C2. Read categories if telephone interview.

card C2 does not list these categories

3a. Who paid or will pay or the services (child) received from ______ in the past 12 months?
(Anyone else?)
Mark (X) all that apply.

(G) A personal care attendant (other than a family or a friend)
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(H) A reader or interpreter
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(I) Home visits from a doctor
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)

Hand card C2. Read categories if telephone interview.

card C2 does not list these categories

3a. Who paid or will pay or the services (child) received from ______ in the past 12 months?
(Anyone else?)
Mark (X) all that apply.

(J) Services from a center for independent living
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(K) Respiratory therapy services
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(L) Social work services
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)


(M) Transportation services
00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/ Free (Skip to 4)
99[] DK (Skip to 4)

Ask if more than one box marked in 3a. If only one, transcribe number of box marked without asking.
b. Who paid most of the cost for the services received from _______ in the past 12 months? Record number of main source.

(A) A Physical therapist
___ ___ Paid Most
(Number)

99[] DK


(B) An occupational therapist
___ ___ Paid Most
(Number)

99[] DK


(C) An audiologist
___ ___ Paid Most
(Number)

99[] DK


(D) A speech therapist or pathologist
___ ___ Paid Most
(Number)

99[] DK


(E) A recreational therapist
___ ___ Paid Most
(Number)

99[] DK


(F) A visiting nurse
___ ___ Paid Most
(Number)

99[] DK

Ask if more than one box marked in 3a. If only one, transcribe number of box marked without asking.
b. Who paid most of the cost for the services received from _______ in the past 12 months? Record number of main source.

(G) A personal care attendant (other than a family or a friend)
___ ___ Paid Most
(Number)

99[] DK


(H) A reader or interpreter
___ ___ Paid Most
(Number)

99[] DK


(I) Home visits from a doctor
___ ___ Paid Most
(Number)

99[] DK

Ask if more than one box marked in 3a. If only one, transcribe number of box marked without asking.
b. Who paid most of the cost for the services received from _______ in the past 12 months? Record number of main source.

(J) Services from a center for independent living
___ ___ Paid Most
(Number)

99[] DK


(K) Respiratory therapy services
___ ___ Paid Most
(Number)

99[] DK


(L) Social work services
___ ___ Paid Most
(Number)

99[] DK


(M) Transportation services
___ ___ Paid Most
(Number)

99[] DK

Ask only if box 00 or 01 marked in 3a; otherwise, skip to 4.
c. DURING THE PAST 12 MONTHS, about how much did (child's) family pay for the services received from _______ ? Do not count any money that has been or will be reimbursed by insurance or any other source.

(A) A Physical therapist
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(B) An occupational therapist
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(C) An audiologist
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(D) A speech therapist or pathologist
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(E) A recreational therapist
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(F) A visiting nurse
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK

Ask only if box 00 or 01 marked in 3a; otherwise, skip to 4.
c. DURING THE PAST 12 MONTHS, about how much did (child's) family pay for the services received from _______ ? Do not count any money that has been or will be reimbursed by insurance or any other source.

(G) A personal care attendant (other than a family or a friend)
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(H) A reader or interpreter
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(I) Home visits from a doctor
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK

Ask only if box 00 or 01 marked in 3a; otherwise, skip to 4.
c. DURING THE PAST 12 MONTHS, about how much did (child's) family pay for the services received from _______ ? Do not count any money that has been or will be reimbursed by insurance or any other source.

(J) Services from a center for independent living
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(K) Respiratory therapy services
00000[] None

$_____ . [00]

99999[] DK


(L) Social work services
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK


(M) Transportation services
00000[] None (Skip to 4)

$_____ . [00]

99999[] DK

d. DURING THE PAST 2 WEEKS, about how much did the family pay or services from ____?

(A) A Physical therapist
00000[] None

$_____ . [00]

99999[] DK


(B) An occupational therapist
00000[] None

$_____ . [00]

99999[] DK


(C) An audiologist
00000[] None

$_____ . [00]

99999[] DK


(D) A speech therapist or pathologist
00000[] None

$_____ . [00]

99999[] DK


(E) A recreational therapist
00000[] None

$_____ . [00]

99999[] DK


(F) A visiting nurse
00000[] None

$_____ . [00]

99999[] DK

Ask only if box 00 or 01 marked in 3a; otherwise, skip to 4.
c. DURING THE PAST 12 MONTHS, about how much did (child's) family pay for the services received from _______ ? Do not count any money that has been or will be reimbursed by insurance or any other source.

(G) A personal care attendant (other than a family or a friend)
00000[] None

$_____ . [00]

99999[] DK


(H) A reader or interpreter
00000[] None

$_____ . [00]

99999[] DK


(I) Home visits from a doctor
00000[] None

$_____ . [00]

99999[] DK

Ask only if box 00 or 01 marked in 3a; otherwise, skip to 4.
c. DURING THE PAST 12 MONTHS, about how much did (child's) family pay for the services received from _______ ? Do not count any money that has been or will be reimbursed by insurance or any other source.

(J) Services from a center for independent living
00000[] None

$_____ . [00]

99999[] DK


(K) Respiratory therapy services
00000[] None

$_____ . [00]

99999[] DK


(L) Social work services
00000[] None

$_____ . [00]

99999[] DK


(M) Transportation services
00000[] None

$_____ . [00]

99999[] DK

4. During (month) did (child) receive services from ______ ?

(A) A Physical therapist
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(B) An occupational therapist
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(C) An audiologist
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(D) A speech therapist or pathologist
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(E) A recreational therapist
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(F) A visiting nurse
1[] Yes (Skip to 1 for next service on page 16)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service on page 16)

4. During (month) did (child) receive services from ______ ?

(G) A personal care attendant (other than a family or a friend)
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(H) A reader or interpreter
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(I) Home visits from a doctor
1[] Yes (Skip to 1 for next service on page 18)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service on page 18)

4. During (month) did (child) receive services from ______ ?

(J) Services from a center for independent living
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(K) Respiratory therapy services
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(L) Social work services
1[] Yes (Skip to 1 for next service)
2[] No (Go to 5)
9[] DK (Skip to 1 for next service)


(M) Transportation services
1[] Yes (Skip to 6 on page 20)
2[] No (Go to 5)
9[] DK (Skip to 6 on page 20)

Hand card A7. Read categories if telephone interview.

(Emily's note: The actual card referenced in the following questions could not be found. Card A7 lists possible methods of contracting TB.)

5. Why didn't (child) receive services from _______ [in (month) in the past 12 months]?
(Anything else?)
Mark (X) all that apply.

(A) A Physical therapist
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(B) An occupational therapist
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(C) An audiologist
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(D) A speech therapist or pathologist
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(E) A recreational therapist
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(F) A visiting nurse
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK

Hand card A7. Read categories if telephone interview.

(Emily's note: The actual card referenced in the following questions could not be found. Card A7 lists possible methods of contracting TB.)

5. Why didn't (child) receive services from _______ [in (month) in the past 12 months]?
(Anything else?)
Mark (X) all that apply.

(G) A personal care attendant (other than a family or a friend)
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(H) A reader or interpreter
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(I) Home visits from a doctor
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK

Hand card A7. Read categories if telephone interview.

(Emily's note: The actual card referenced in the following questions could not be found. Card A7 lists possible methods of contracting TB.)

5. Why didn't (child) receive services from _______ [in (month) in the past 12 months]?
(Anything else?)
Mark (X) all that apply.

(J) Services from a center for independent living
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(K) Respiratory therapy services
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(L) Social work services
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK


(M) Transportation services
00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/can't afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK

[p.295]

Section E - Other Services - Continued

Hand card C6. Read categories in 6b if telephone interview.

Card C6 not found

6a. Is (child) currently on a waiting list for any of these services?

1[] Yes (Go to 6b)
2[] No (Skip to Section F on page 21)
9[] DK (Skip to Section F on page 21)

b. For which ones is (child) on a waiting list?
Anything else?
Mark (X) all that apply.

01[] A physical therapist
02[] An occupational therapist
03[] An audiologist
04[] A speech therapist or pathologist
05[] A recreational therapist
06[] A visiting nurse
07[] A personal care attendant, other than family or a friend
08[] A reader or interpreter
09[] Home visits from a doctor
10[] Services from a center for independent living
11[] Respiratory therapy services
12[] Social work services
13[] Transportation services
99[] DK

[p.296]

Section F - Educational Services

ITEM F1
Refer to child's age on label.

1[] 3+ years old (go to 1)
2[] Other (Skip to 5 on page 23)

Special education is a program designed to meet the individual needs of children with special needs. It is paid for by the public school system and may take place at a regular school, a special school, a private school, at home, or at a hospital.
1a. DURING THE PAST 12 MONTHS, has (child) received any type of special education services or benefits? Do not include gifted and talented programs.

1[] Yes (Go to 1b)
2[] No (Skip to 3 on page 22)
9[] DK (Skip to 3 on page 22)

Hand card A15. Read categories if telephone interview.

Card A15 not found

b. During the past 12 months, which of these services or benefits did (child) receive through special education programs?
(Anything else?)
Mark (X) all that apply.

01[] Transportation services
02[] Speech/Language therapy
03[] Audiology services for hearing problems (such as testing, evaluation, and training)
04[] Mental health or counseling services
05[] Developmental testing
06[] Physical therapy
07[] Occupational therapy
08[] Recreational therapy
09[] Respiratory therapy
10[] Social work services
11[] Eyeglasses
12[] Hearing aids
13[] Wheelchair
14[] Other assistive devices and training in their use
15[] Medical services for diagnostic and evaluation purposes
16[] Communication services (such as reader, interpreter, or writer)
17[] Nursing services
18[] Other
99[] DK

Hand card A16. Read categories if telephone interview.

Card A16 not found

c. During the past 12 months, has (child) received special education for any of these conditions?
(Anything else?)
Mark (X) all that apply.

01[] Learning disabilities
02[] Speech or language problems
03[] Mental retardation
04[] Emotional disturbances
05[] Deaf and blind
06[] Hearing, including deafness or hard of hearing
07[] Visual, including blindness and other problems
08[] Orthopedic problems
09[] Autism
10[] Traumatic brain injury
11[] Developmental delay
12[] Multiple disabilities
13[] Other health problem
14[] Not a specific condition
99[] DK

Hand card A17. Read categories if telephone interview.

Card A17 not found

d. During the past 12 months, where did (child) receive these special education services? (Anywhere else?)
Mark (X) all that apply.

01[] Regular classroom setting
02[] Resource room in regular school
03[] Separate class all day or part of a day in regular school
04[] Special school - day school
05[] Special school - residential school
06[] Home
07[] Hospital or institution
08[] Provider's office
09[] Other
99[] DK

e. Has (child) received any special education services during the past month?

1[] Yes (Skip to Item F2 on page 22)
2[] No (Go to 1)
9[] DK (Skip to Item F2 on page 22)

f. Why hasn't (child) received any special education services in the past month?
Anything else?
Mark (X) all that apply.

0[] Child did not need the service during the past month
1[] Provider/school thinks services no longer necessary
2[] Child on vacation from school
3[] Provider/service no longer available
4[] Didn't like provider/service
5[] Transportation problems
6[] Could not take time off from work to arrange it
7[] Other reason
9[] DK

[p.297]

Section F - Educational Services - Continued

ITEM F2
Refer to child's age on label.

1[] 16+ years old (Go to 2)
2[] Other (Skip to 3)
2. During the past 12 months, did (child) receive any instruction through special education about how to get and keep a job?

1[] Yes
2[] No
9[] DK

3a. During the past 12 months, have you tried to get any (additional) special education services for (child) ?

1[] Yes (Go to 3b)
2[] No (Skip to 4)
9[] DK (Skip to 4)

Hand card A15. Read categories if telephone interview.

Card A15 not found

b. What (additional) special education services did you try to get for (child)?
(Anything else?)
Mark (X) all that apply.

01[] Transportation services
02[] Speech/Language therapy
03[] Audiology services for hearing problems (such as testing, evaluation, and training)
04[] Mental health or counseling services
05[] Developmental testing
06[] Physical therapy
07[] Occupational therapy
08[] Recreational therapy
09[] Respiratory therapy
10[] Social work services
11[] Eyeglasses
12[] Hearing aids
13[] Wheelchair
14[] Other assistive devices and training in their use
15[] Medical services for diagnostic and evaluation purposes
16[] Communication services (such as reader, interpreter, or writer)
17[] Nursing services
18[] Other
99[] DK

c. During the past 12 months, was (child) on a waiting list for any special education services?

1[] Yes
2[] No
9[] DK

Hand card C7. Read categories if telephone interview.

Card C7 not found

d. What problems did you have trying to get (additional) special education services for (child) during the past 12 months?
(Anything else?)
Mark (X) all that apply.

00[] Had no problem getting service
01[] Service is not available
02[] Had trouble finding the right kind of service
03[] Services available are inadequate
04[] School did not think child needed the service
05[] School would not test child for disabilities
06[] School would not help in finding services
07[] Could not take time off from work to arrange it
08[] Other problems
99[] DK

4. Overall, how satisfied are you with the educational services that (child) receives? Are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied?

0[] Does not receive educational services
1[] Very satisfied (Skip to Section G on page 25)
2[] Somewhat satisfied (Skip to Section G on page 25)
3[] Somewhat dissatisfied (Skip to Section G on page 25)
4[] Very dissatisfied (Skip to Section G on page 25)
9[] DK (Skip to Section G on page 25)

[p.298]

Section F - Educational Services - Continued

Special education is a program designed to meet the individual needs of infants and very young children who have special needs. It is provided free and may include services at home, at a hospital, or somewhere else.
5a. During the past 12 months, has (child) received any type of special education services?

1[] Yes (Go to 5b)
2[] No (Skip to 6 on page 24)
9[] DK (Skip to 6 on page 24)

Hand card C8. Read categories if telephone interview.

(Emily's note: Card C8 not found)

b. During the past 12 months, which of these special education services did (child) receive?
(Anything else?)
Mark (X) all that apply.

01[] Transportation services
02[] Speech/Language therapy
03[] Audiology services for hearing problems (such as testing, evaluation , and training)
04[] Family training, counseling and home visits
05[] Nursing or health services
06[] Physical therapy
07[] Occupational therapy
08[] Nutritional services
09[] Social work services
10[] Psychological services
11[] Service coordination/case management
12[] Special instruction
13[] Vision services, including eye testing and obtaining glasses
14[] Other assistive devices and training in their use
15[] Medical services for diagnostic and evaluation purposes
16[] Other early intervention services
99[] DK

c. During the past 12 months, has (child) received special education for a developmental delay, other health condition, or some other problem?
Mark (X) all that apply.

1[] Developmental delay
2[] Other health condition
3[] Other problem
4[] DK

d. During the past 12 months, where did (child) receive these special education services?
Anywhere else?
Mark (X) all that apply.

01[] Home
02[] Family daycare
03[] Regular nursery school/daycare center
04[] Outpatient services facility
05[] Early intervention classroom/center
06[] Hospital as inpatient
07[] Provider's office
08[] Residential facility
09[] Other place
99[] DK

e. Has (child) received any special education services during the past MONTH?

1[] Yes (Skip to 6 on page 24)
2[] No (Skip to 5f)
9[] DK (Skip to 6 on page 24)

f. Why didn't (child) receive special education services during the past MONTH?
Anything else?
Mark (X) all that apply.

0[] Child did not need the service during the past month
1[] Provider/school thinks service no longer necessary
2[] Child on vacation from school
3[] Provider/service no longer available
4[] Didn't like providers/service
5[] Transportation problems
6[] Could not take time off from work to arrange it
7[] Other reason
9[] DK

[p.299]

Section F - Educational Services - Continued

6a. During the past 12 months, have you tried to get any (additional) special education services for (child)?

1[] Yes (Go to 6b)
2[] No (Skip to 7)
9[] DK (Skip to 7)

Hand card C8. Read categories if telephone interview.

(Emily's note: Card C8 not found)

b. What (additional) special education services did you try to get for (child)?
Anything else?
Mark (X) all that apply.

01[] Transportation services
02[] Speech/Language therapy
03[] Audiology services for hearing problems (such as testing, evaluation , and training)
04[] Family training, counseling and home visits
05[] Nursing or health services
06[] Physical therapy
07[] Occupational therapy
08[] Nutritional services
09[] Social work services
10[] Psychological services
11[] Service coordination/case management
12[] Special instruction
13[] Vision services, including eye testing and obtaining glasses
14[] Other assistive devices and training in their use
15[] Medical services for diagnostic and evaluation purposes
16[] Other early intervention services
99[] DK

c. During the past 12 months, was (child) on a waiting list for any special education services?

1[] Yes
2[] No
9[] DK

7. Overall, how satisfied are you with the education services that (child) receives? Are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied?

0[] Did not receive any educational services
1[] Very satisfied
2[] Somewhat satisfied
3[] Somewhat dissatisfied
4[] Very dissatisfied
9[] DK

[p.300]

Section G - Coordination of Services

1a. Is there any one doctor who you think of as the one who coordinates (child's) overall medical care? By coordinating, I mean one who keeps in touch with the different doctors or therapists who (child) sees, who knows the results of all tests and treatments that (child) has, and who is aware of (child's) different prescription medicines.

1[] Yes
2[] No
9[] DK

b. Do (child's) doctors talk to each other about [his/her] health and the care [he/she] gets, including any tests or medications?

1[] Yes
2[] No
3[] Only one doctor
9[] DK

2a. Is there anyone who is not a doctor who coordinates (child's) medical care?

1[] Yes (Go to 2b)
2[] No (Skip to 3)
9[] DK (Skip to 3)

b. Who does this for (child)?
Anyone else?
Mark (X) all that apply.

0[] Parent/Guardian
1[] Friend/Family member
2[] Nurse
3[] Therapist
4[] Social worker
5[] Hospital discharge planner
6[] Case manager
7[] Other
9[] DK

3a. Does any physician or someone in a physician's office help with arranging (child's) non-medical care, like social services and personal care services?

1[] Yes (Go to 3b)
2[] No (Skip to 4)
9[] DK (Skip to 4)

b. Is this person, or does this person work for a general care physician or a specialist?

1[] General care physician
2[] Specialist
3[] Someone else
9[] DK

c. Is this a person a --
Mark (X) all that apply.

1[] Physician?
2[] Therapist?
3[] Nurse?
4[] Social worker?
5[] Hospital discharge planner?
6[] Case manager?
7[] Something else?
9[] DK

4a. Does anyone NOT in a physician's office help with arranging (child's) non-medical services?

1[] Yes (Go to 4b)
2[] No (Skip to G1)
9[] DK (Skip to G1)

b. Who does this for (child)?

0[] Parent/Guardian
1[] Friend/Family member
2[] Nurse
3[] Therapist
4[] Social worker
5[] Hospital discharge planner
6[] Case manager
7[] Other
9[] DK

ITEM G1
Refer to 1a, 2a, 3a and 4a.
(Coordinates/arranges)

1[] "Yes" in any (Go to 5 on page 26)
2[] All other (Skip to 9 on page 26)
[p.301]

Section G - Coordination of Services - Continued

Hand card C9. Read categories if telephone interview.

(Emily's note CARD C9 not found)

5. What kinds of medical or non-medical services [does this person/do these persons] provide for (child)?
(Anything else?)
Mark (X) all that apply.

01[] Helps make medical appointments with (other) doctors
02[] Makes appointments with nurses/therapists/dieticians
03[] Follows up to be sure appointments are kept
04[] Arranges transportation to appointments
05[] Makes referrals to doctors
06[] Makes referrals to nurses/therapists/dieticians
07[] Checks to see if child's needs or conditions have changed
08[] Makes sure that child is doing exercises or following diet
09[] Reviews medications
10[] Explains medical procedures and terms to child and family
11[] Helps with insurance or other benefits
12[] Tries to find volunteers to help child
13[] Tries to find workers or agencies to help child
14[] Arranges home delivered meals for child
15[] Makes sure that friends/family are able to help child
16[] Arranges for care at home
17[] Helps develop a personal care plan
18[] Evaluates need for services
19[] Arranges special education services
20[] Arranges vocational rehabilitation services
21[] Other
99[] DK

ITEM G2
Refer to 4b on page 25.
(Arranges non-medical services)

1[] Only box "0" and/or box "1" marked (Skip to 9)
2[] Other (Go to 6)
6a. Was the help coordinating (child's) non-medical services paid for?

1[] Yes (Go to 6b)
2[] No (Skip to 7)
9[] DK (Skip to 7)

Hand card C2. Read categories if telephone interview.

(Emily's note: CARD C2 does not list these categories)

b. Who paid or will pay for this help?
(Anyone else?)
Mark (X) all that apply.

00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/free
99[] DK

Ask if more than one box marked in 6b; if only one, transcribe the number of the box without asking.
c. Who paid for the most of the cost of this help?
Record number of main source.

___ ___ Paid most
(Number)

99 [] DK

7. In the past 6 months, about how many times did you see or talk to the person(s) who help(s) arrange (child's) non-medical services?

000[] None

________
(Number)
1[] Per week
2[] Per month
3[] Per six months


999[] DK

8. Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with the job [the person has/these people have] done to help in coordinating (child's) non-medical services?
Mark (X) only one.

1[] Very satisfied (Skip to 10a on page 27)
2[] Somewhat satisfied (Skip to 10a on page 27)
3[] Somewhat dissatisfied (Skip to 10a on page 27)
4[] Very dissatisfied (Skip to 10a on page 27)
9[] DK (Skip to 10a on page 27)

9. During the past 12 months have you felt that you NEEDED someone to help arrange or coordinate (child's) personal care or social services?

1[] Yes
2[] No
3[] Never thought about it
9[] DK

[p.302]

Section G - Coordination of Services - Continued

10a. Do you need help filling out (child's) insurance forms or benefit applications?

1[] Yes (Go to 10b)
2[] No (Skip to Section H on page 28)
3[] Never filled out forms/applications (Skip to Section H on page 28)

b. Who helps you fill out (child's) insurance forms or applications for public programs or benefits?
Mark (X) all that apply.

0[] No one
1[] Household member
2[] Friend/other relative not in household
3[] Paid caregiver
4[] Volunteer from an organization
5[] Other
9[] DK

[p.303]

Section H - Physical Activity

1. During the past 12 months, has (child) been limited in the kind or amount of physical activity [he/she] can do during play because of a physical, mental, or emotional problem?

1[] Yes (Go to 2)
2[] No (Skip to 4)
9[] DK (Skip to 4)

Hand card C10. Read categories if telephone interview.

(Emily's note: CARD C10 not found)

Sometimes things other than a person's health limit or prevent participation in physical education or recreational programs.
2. During the past 12 months, was (child's) participation in physical education or recreational programs limited or prevented for any of these reasons?
(Anything else)?
Mark (X) all that apply.

0[] Did not try to find programs
1[] Lack of nearby facilities or programs
2[] Facilities not adapted to child's needs
3[] Inadequate transportation
4[] Cost is too high
5[] Not prevented or limited for any of these reasons
9[] DK

3. During the past 12 months, has (child) participated in any physical education or recreation adapted for children with special needs?

1[] Yes
2[] No
9[] DK

4. During the past 12 months, has (child) participated in any ORGANIZED GROUP activities (outside of school) that have adult supervision? Please include any group recreational activities or educational activities such as group lessons, sports teams, scout troops, and clubs.

1[] Yes
2[] No
9[] DK

5. During the past 12 months, did (child) go to any kind of summer camp?

1[] Yes
2[] No
9[] DK

[p.304]

Section I - Personal Adjustment and Role Skills (PARS)

ITEM I1
Refer to child's age on label.

1[] 6+ year old (Go to 1)
2[] Other (Skip to Section J on page 31)

In the next questions, I'll ask you about (child's) social behaviors and activities.
Hand card C11.

(Emily's note: CARD C11 not found)

1. During the past 30 days, has (child) --

a. Spent time with friends? Would you say -- (Read all categories)?
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


b. Made friends without difficulty? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


c. Joined others of [his/her] own accord? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


d. Had many different friends? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


e. Wanted help in things [he/she] could have done on own? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


f. Been unable to decide things for [his/her] self? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


g. Asked for help when [he/she] could have figured things out? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always

During the past 30 days, has (child) --

h. Asked unnecessary questions instead of working on own? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


i. Does things for attention even though punished for it? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


j. Flared up when [he/she] couldn't have [his/her] own way? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


k. Become upset if others did not agree with [him/her] (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


l. Ignored warnings to stop unacceptable behavior? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


m. Told lies? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


n. Not responded to discipline? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always

During the past 30 days, has (child) --

o. Stayed with tasks or assignments until finished? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


p. Made full use of abilities? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


q. Done work without being pushed or punished? (Would you say -- (Read all categories)?
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


r. Kept on with tasks even when difficult? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


s. Complained about problems? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


t. Seemed restless, tense? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


u. Said people didn't care about [him/her]? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always

[p.305]

Section I - Personal Adjustment and Role Skills (PARS) - Continued

During the past 30 days, has (child)--

v. Seemed sad? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


w. Said [he/she] couldn't do things right? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


x. Acted afraid or apprehensive? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


y. Sat and stared without doing anything? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


z. Appeared listless and apathetic? (Would you say -- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


aa. Seemed unaware of things going on around [him/her]? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always


bb. Shown little interest in things, had to be pushed into activity? (Would you say-- (Read all categories)?)
1[] Never or rarely
2[] Sometimes
3[] Often
4[] Always

[p.306]

Section J - Impact on the Family

1a. For reasons related to (child's) health, has anyone in
the family EVER:

(0) Not taken a job in order to care for (child)?
1[] Yes
2[] No
9[] DK


(1) Quit working other than normal maternity leave?
1[] Yes
2[] No
9[] DK


(2) Changed jobs?
1[] Yes
2[] No
9[] DK


(3) Changed work hours to a different time of day?
1[] Yes
2[] No
9[] DK


(4) Turned down a better job or promotion?
1[] Yes
2[] No
9[] DK


(5) Worked fewer hours?
1[] Yes (Go to 1b)
2[] No (Skip to 2)
9[] DK (Skip to 2)

b. Right BEFORE the family member changed hours the last time, how many hours a week did he or she work?

_______ Hours
(Number)

99[] DK

c. AFTER the family member changed hours, how many hours a week did he or she work?

_______ Hours
(Number)

99[] DK

2. During the past 12 months, because of (child's) health, has anyone in the family had to change sleeping patterns for more than a few nights at a time?

1[] Yes
2[] No
9[] DK

3. During the past 12 months, has the family had severe financial problems because of (child's) health?

1[] Yes
2[] No
9[] DK

[p.307]

Section K - Mental Health

ITEM K1
Refer to child's age on label.

1[] 3+ years old (Go to 1)
2[] Other (Skip to Section L on page 36)
1a. During the past 12 months, did (child) stay OVERNIGHT in a hospital or other place to receive services for mental health or substance abuse?

1[] Yes (Go to 1b)
2[] No (Skip to 3 on page 33)
9[] DK (Skip to 3 on page 33)

b. Was this for mental health, substance abuse, or both?
Mark (X) only one.

1[] Mental Health
2[] Substance abuse
3[] Both
9[] DK

Hand card A9. Read categories if telephone interview.

(Emily's note: CARD A9 not found)

c. Where did (child) receive inpatient [mental health/(and) substance abuse] services during the past 12 months?
(Anywhere else?)
Mark (X) all that apply.

1[] Private or public psychiatric hospital
2[] Psychiatric service in a general hospital
3[] Other hospital
4[] Residential treatment center
5[] Other place
9[] DK

d. During the past 12 months, altogether how many times was (child) admitted to (place(s) in 1c) for [mental health/(and) substance abuse] services?

_______ Times admitted
(Number)

99[] DK

e. Altogether how many nights did (child) spend in the (place(s) in 1c) during the past 12 months?

_______ Nights
(Number)

99[] DK

ITEM K2
Refer to 1d.
(Number of admissions)

1[] 1 admission (Go to 2a)
2[] 2 or more admissions (Skip to 2b)
0[] DK (Skip to 2c)
2a. Was that admission on an emergency basis?

1[] Yes (Skip to 2e)
2[] No (Skip to 2e)
9[] DK (Skip to 2e)

b. How many of the (number in 1d) admissions were on an emergency basis?

00[] None (Skip to 2e)

_______ Emergency admissions (Skip to 2e)
(Number)

99[] DK (Skip to 2e)

c. Were any of the admissions in the past 12 months on an emergency basis?

1[] Yes (Go to 2d)
2[] No (Skip to 2e)
9[] DK (Skip to 2e)

d. How many of the admissions were on an emergency basis?

00[] None

_______ Emergency admissions
(Number)

99[] DK

Hand card C2. Read categories if telephone interview.

(Emily's note: CARD C2 does not list these categories)

e. Who paid, or will pay, for the inpatient [mental health/(and) substance abuse] services (child) received during the past 12 months?
(Anyone else)?
Mark (X) all that apply.

00[] Parents
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/Free (Skip to 3 on page 33)
99[] DK (Skip to 3 on page 33

Ask if more than one box marked in 2e; if only one, transcribe the number of the box marked without asking.
f. Who paid for MOST of the cost of the inpatient [mental health/(and) substance abuse] services?
Record number of main source.

_______ Paid most
(Number)

99[] DK

Ask if box 00 or 01 marked in 2e; otherwise, skip to 3.
g. During the past 12 months about how much did the family pay for (child's) inpatient [mental health/(and) substance abuse] services? Do not include costs that were or will be reimbursed by insurance or another source.

00000 [] None

$________.[ 00 ]

99999 [] DK

[p.308]

Section K - Mental Health - Continued

3a. During the past 12 months, did (child) receive any OUTPATIENT mental health or substance abuse services, including mental health or substance abuse services received from a general practitioner or any other health professional? Do not include treatment for smoking cessation.

1[] Yes (Go to 3b)
2[] No (Skip to 5 on page 34)
9[] DK (Skip to 5 on page 34)

b. Was this for mental health, substance abuse, or both?
Mark (X) only one.

1[] Mental health
2[] Substance abuse
3[] Both
9[] DK

Hand card A10. Read categories if telephone interview.

(Emily's note: CARD A10 not found.)

c. From whom did (child) receive outpatient [mental/substance abuse] services during the past 12 months?
(Anywhere else?)
Mark (X) all that apply.

1[] Psychiatrist
2[] Psychologist
3[] Nurse
4[] Social worker
5[] Other mental health counselor or therapist
6[] General practitioner or other medical doctor
7[] Other health professional
9[] DK

Hand card A11. Read categories if telephone interview.

(Emily's note: CARD A11 not found.)

d. Where did (child) receive outpatient [mental health/(and) substance abuse] services during the past 12 months?
(Anywhere else?)
Mark (X) all that apply.

1[] Doctor's/Other health professional's office, NOT a clinic
2[] Outpatient mental health clinic, such as a community mental health center
3[] Outpatient medical clinic
4[] HMO
5[] Other place
9[] DK

e. During the past 12 months, in how many months did (child) receive outpatient [mental health/(and) substance abuse] services?

_______ Months
(Number)

99[] DK

f. What was the total number of times (child) received [mental health/(and) substance abuse] services during those months?

_______ Months
(Number)

99[] DK

ITEM K3
Refer to 3f.
(Number of times)

1[] 1 time (Go to 4a)
2[] 2 or more times (Skip to 4b)
9[] DK (Skip to 4c)
4a. Was that visit on an emergency basis?

1[] Yes (Skip to 4e on page 34)
2[] No (Skip to 4e on page 34)
9[] DK (Skip to 4e on page 34)

b. How many of the (number in 3f) visits were on an emergency basis?

00[] None (Skip to 4e on page 34)

_______ Emergency (Skip to 4e on page 34)
(Number)

99[] DK (Skip to 4e on page 34

)

c. Were any of the visits in the past 12 months on an emergency basis?

1[] Yes (Go to 4d)
2[] No (Skip to 4e on page 34)
9[] DK (Skip to 4e on page 34)

d. How many visits were on an emergency basis?

________ Emergency (Go to 4e on page 34)
(Number)

99[] DK (Go to 4e on page 34)

[p.309]

Section K - Mental Health - Continued

Hand card C2. Read categories if telephone interview.

(Emily's note: CARD C2 does not list these categories)

4e. Who paid, or will pay for the outpatient [mental health/(and) substance abuse] services (child) received during the past 12 months?
(Anyone else?)
Mark (X) all that apply.

00[] Parent(s)
01[] Family in household
02[] Family NOT in household
03[] Private health insurance
04[] Medicaid
05[] Rehabilitation program
06[] Parent's employer
07[] School system
08[] VA program
09[] Other military
10[] Other private source
11[] Other public source
12[] No one/Free (Skip to 5)
99[] DK (Skip to 5)

Ask if more than one box marked in 4e; if only one, transcribe the number of the box marked without asking.
f. Who paid for MOST of the cost of the inpatient [mental health/(and) substance abuse] services?
Record number of main source.

___ ___ Paid most
(Number)

99[] DK

Ask if box 00 or 01 marked in 4e; otherwise, skip to 5.
g. During the past 12 months about how much did the family pay for (child's) inpatient [mental health/(and) substance abuse] services? Do not include costs that were or will be reimbursed by insurance or another source.

00000[] None

$________.[ 00 ]

99999[] DK

5. During the past 12 months, did (child) receive any services from a mental health community support program?
Read if necessary: A community support program for clients with mental or emotional problems is a program that makes available mental health, health, social and support services base on individual need.

1[] Yes
2[] No
9[] DK

6. During the past 12 months, was (child) on a waiting list for outpatient mental health or substance abuse services?

1[] Yes, mental health services
2[] Yes, substance abuse services
3[] Both
4[] No
9[] DK

ITEM K4
Refer to questions 1a,3a,and 5.
(Received mental health/substance abuse services)

1[] Yes in 1a,3a, or 5 (Go to 7)
2[] Other (Skip to 8 on page 35)
7a. Did (child) receive any inpatient or outpatient mental health or substance abuse services during the past month? Again, do not include treatment for smoking cessation.

1[] Yes (Skip to 8 on page 35)
2[] No (Go to 7b)
9[] DK (Go to 7b)

Hand card A7. Read categories if telephone interview.

Emily's note: CARD A7 not found

b. Why didn't (child) get mental health or substance abuse services during the past month?
Any other reason?
Mark (X) all that apply.

00[] Didn't need services
01[] Provider thinks no longer needed
02[] Too expensive/cannot afford
03[] Insurance doesn't cover
04[] Insurance no longer covers
05[] No longer on Medicaid
06[] Provider not available
07[] Didn't like provider
08[] Transportation problems
09[] Could not take time off from work
10[] Other
99[] DK

[p.310]

Section K - Mental Health - Continued

8a. During the past 12 months, has (child) needed any mental health or substance abuse services or counseling that [he/she] HAS NOT RECEIVED?

1[] Yes (Go to 8b)
2[] No (Skip to 9)
9[] DK (Skip to 9)

Hand card A12. Read categories if telephone interview.

(Emily's note: CARD A12 not found)

b. Which of these statements explains why (child) did not receive the mental health or substance abuse services [he/she] needed?
(Anything else?)
Mark (X) all that apply.

00[] Did not try to get mental health services during the past 12 months
01[] Too expensive/can't afford
02[] Didn't know where to go to get services
03[] No mental health services nearby
04[] No nearby provider accepts Medicaid
05[] Private insurance does not cover the services
06[] Did not have insurance
07[] Transportation problems
08[] Trouble finding the right kind of mental health professional
09[] Language barrier
10[] Could not take time off from work
11[] Other reasons
99[] DK

9. Because of a physical, mental or emotional problem, during the past 12 months, did (child) receive any TRAINING in social skills, such as making and keeping friends or how to interact with other people?

1[] Yes
2[] No
9[] DK

[p.311]

Section L - Housing and Transportation

Read: These next questions are about the place (child) lives.
1a. Is it NECESSARY to use any stairs to get into this home from outside?

1[] Yes
2[] No
9[] DK

Ask or verify:
b. Counting basements and stepdown living areas as separate levels, does this home have more than one floor or level?

1[] Yes (Go to 1c)
2[] No (Go to 2)
9[] DK (Go to 1c)

c. Does this home have a bathroom, bedroom and kitchen ALL on the SAME floor or level?

1[] Yes
2[] No
9[] DK

2. Because of a physical impairment or health problem, does (child) have any difficulty:

a. Entering or leaving your home?
1[] Yes
2[] No
9[] DK


b. Opening or closing any of the doors in your home?
1[] Yes
2[] No
9[] DK


c. Reaching or opening cabinets in your home?
1[] Yes
2[] No
9[] DK


d. Using the bathroom in your home?
1[] Yes
2[] No
9[] DK

3. Does this home have any of these special features:

a. Widened doorways or hallways?
1[] Yes
2[] No
9[] DK


b. Ramps or street level entrances?
1[] Yes
2[] No
9[] DK


c. Railings?
1[] Yes
2[] No
9[] DK


d. Automatic or easy to open doors?
1[] Yes
2[] No
9[] DK


e. Accessible parking or drop off site?
1[] Yes
2[] No
9[] DK


f. Bathroom modifications?
1[] Yes
2[] No
9[] DK


g. Kitchen modifications?
1[] Yes
2[] No
9[] DK


h. Elevator, chair lift, or stair glider?
1[] Yes
2[] No
9[] DK


i. Altering devices?
1[] Yes
2[] No
9[] DK


j. Any other special features?
1[] Yes
2[] No
9[] DK

4. Does (child) NEED any of these special features to get around the home?

a. Widened doorways or hallways?
1[] Yes
2[] No
9[] DK


b. Ramps or street level entrances?
1[] Yes
2[] No
9[] DK


c. Railings?
1[] Yes
2[] No
9[] DK


d. Automatic or easy to open doors?
1[] Yes
2[] No
9[] DK


e. Accessible parking or drop off site?
1[] Yes
2[] No
9[] DK


f. Bathroom modifications?
1[] Yes
2[] No
9[] DK


g. Kitchen modifications?
1[] Yes
2[] No
9[] DK


h. Elevator, chair lift, or stair glider?
1[] Yes
2[] No
9[] DK


i. Altering devices?
1[] Yes
2[] No
9[] DK


j. Any other special features?
1[] Yes
2[] No
9[] DK

5. DURING THE PAST 12 MONTHS, were you ever refused housing or rental accommodations because of any impairment or health problem that (child) has or did you not look for housing in the past 12 months?

0[] Did not look
1[] Yes
2[] No
9[] DK

[p.312]

Section L - Housing and Transportation

6a. Do you have any special equipment on your car or other motor vehicle because of an impairment or health problem that (child) has?

1[] Yes (Go to 6b)
2[] No (Skip to 6c)
3[] Don't have a car (Skip to 6c)

b. What special equipment do you have because of (child's) impairment or health problem?
Anything else?
Mark (X) all that apply.

1[] Hand controls
2[] Hand rails, straps, specialized handles, ramps, or lifts
3[] Power controls for windows, mirrors, seat, or steering
4[] Automatic transmission
5[] Air conditioning
6[] A button that opens the door
7[] A large trunk or storage area
8[] Other special features
9[] DK

c. Did you NEED any (other) special equipment or feature on a car or other motor vehicle because of any impairment or health problem that (child) has?

1[] Yes (Go to 6d)
2[] No (Skip to Section M on page 38)

d. What (other) equipment or feature do you need?
Anything else?
Mark (X) all that apply.

1[] Hand controls
2[] Hand rails, straps, specialized handles, ramps, or lifts
3[] Power controls for windows, mirrors, seat, or steering
4[] Automatic transmission
5[] Air conditioning
6[] A button that opens the door
7[] A large trunk or storage area
8[] Other special features
9[] DK

[p.313]

Section M - Health Insurance

The next questions are about health insurance coverage.
There is a program called Medicaid that pays for health care for persons in need. In this state, it is also called (state name).
1a. In (month), (child) covered by Medicaid or (state name)?

1[] Yes (Go to 1b)
2[] No (Skip to 2)
9[] DK (Skip to 2)

b. How long has (child) been covered by Medicaid or (state name)?
Read categories if necessary.
Mark (X) only one.

1[] Less than 6 months
2[] 6 months, but less than 1 year
3[] 1 year, but less than 2 years
4[] 2 years, but less than 5 years
5[] 5 years or more
6[] On an off for less than 2 years
7[] On and off for 2 years, but less than 5 years
8[] On and off for 5 years or more
9[] DK

2. In (month), was (child) covered by any OTHER public assistance program (other than Medicaid) that pays for health care? Do not include use of public or free clinics of that is (child's) only source of care.

1[] Yes
2[] No
9[] DK

3a. In (month), was (child) covered by military care, including armed forces retirement benefits, or the VA (Department of Veterans' Affairs)?

1[] Yes
2[] No
9[] DK

b. Was this CHAMPUS or CHAMP-VA?
Read if necessary: CHAMPUS is a program of medical care for dependents of active
duty or retired military personnel. CHAMP-VA is medical insurance for dependents or survivors of disabled veterans.

1[] Yes
2[] No
9[] DK

c. In (month), was (child) covered by any other military health care, including armed forces retirement benefits, or the VA (Department of Veterans' Affairs)?

1[] Yes
2[] No
9[] DK

4. In (month), was (child) covered by the Indian Health Service?

1[] Yes
2[] No
9[] DK

5a. (Not counting the Government health programs we just mentioned), in (month), was (child) covered by a private health insurance plan?
Read if necessary: Besides government programs. people also get health insurance
through their jobs or union, through other private groups, or directly from an insurance company. A variety of types of plans are available, including Health Maintenance Organizations or HMOs.
1[] Yes (Go to 5b)
2[] No (Skip to Section N on page 39)
9[] DK (Skip to Section N on page 39)

b. Was any of this private insurance obtained originally through a workplace, that is through a parent's employer or union?

1[] Employer
2[] Union
3[] Through workplace, DK which
4[] No
9[] DK

[p.314]

Section N - Respondent Information

READ TO RESPONDENT: These next questions are about your relationship to (sample child).

Mark if known or ask:
1a. How are you related to (child)?

0[] Mother (Go to 1b)
1[] Father (Go to 1b)
2[] Brother/sister (Skip to 1d)
3[] Grandparent (Skip to Contact Information Intro)
4[] Other relative (Skip to Contact Information Intro)
5[] Nonrelative (Skip to Contact Information Intro)
9[] DK (Skip to Contact Information Intro)

b. Are you the biological (natural), adoptive, step, or foster parent of (child)?

1[] Biological (Skip to Contact Information Intro)
2[] Adoptive (Go to 1c)
3[] Step (Go to 1c)
4[] Foster (Go to 1c)

c. How old was (child) when [he/she] first started living with you?

_____ (Skip to Contact Information Intro)
(Age)
1[] Months
2[] Years


000[] Since birth (Skip to Contact Information Intro)
999[] DK (Skip to Contact Information Intro)

d. Is (child) a full, half, step, adoptive, or foster [brother/sister] to you?

1[] Full (Go to Contact Information Intro)
2[] Half (Go to Contact Information Intro)
3[] Step (Go to Contact Information Intro)
4[] Adoptive (Go to Contact Information Intro)
5[] Foster (Go to Contact Information Intro)

Contact Person Information

Intro: The national Center for Health Statistics may wish to contact you again to obtain additional health related information.

ITEM N1
Refer to CP on label.

1[] CP on label (Ask 2a)
2[] No CP on label (Ask 2b)
2a. The last time a Census Bureau interviewer talked to you or your family, we were told that (CP on label) will always know how to get in touch with you if we want to contact you again. Is (CP on label) still the best person to contact if we are unable to reach you?

1[] Yes (Verify CP's address and phone number. If incorrect, enter correct information in 3 below.)
2[] No (Go to 2b)

b. The National Center for Health Statistics would like the name, address, and telephone number of a relative or friend who would know where you could be reached in case we need additional health information in the future but cannot reach you. Please give me the name of someone who is not currently living in the household.

(Record information in 3)

3. Contact Person current information

Last name
_____

First name
_____

MI
_____


Number and street
_____

City
_____

State
_____

ZIP Code
_____

Telephone

Area code
_____

Number
_____


1[] None
7[] Refused
9[] DK

[p.315]

U.S. Department of Commerce
Bureau of the Census
Acting as Collecting Agent for the
U.S. Department of Health and Human Services
Public Health Service
Disability Followback Survey
(NHIS Phase II)
Adult Questionnaire)
Part I - Call Record

Mode

T
P

Date

Month
____

Day
____

Beginning time

____
[] a.m.
[] p.m.

Results

_______

Ending time

____
[] a.m.
[] p.m.

Comments

_______

Part II - Status

A. Final Status

Interview
01[] Complete
02[] Partial (Explain in Notes)


Noninterview
03[] SP Refused (Explain in Notes)
04[] Proxy Refused (Explain in Notes)
05[] Unable to contact (Explain in Notes)
06[] Unable to locate (Explain in Notes)
07[] Deceased (Explain in Notes)
10[] Moved o/s PSU, unable to phone (Explain in Notes)
11[] Other noninterview (Explain in Notes)

B. Mode

1[] Telephone
2[] Personal visit

C. Respondent

1[] Self
2[] Proxy

Reason for proxy
1[] SP incapable (Fill II.D)
2[] SP institutionalized
3[] SP unavailable (Fill II.D)
4[] Other - Specify (Fill II.D)
_________
_________

D. Proxy

Name _____

E. Field representative's name ______ Code ____

Part III- New Address

A. Address (Different from label)

Number and street
_______

City
_______

State
_______

ZIP Code
_______

B. Telephone (Different from label)

Area code
______

Number
______

1[] None
7[] Refused
9[] DK number

[p.316]

Initial Screening

1. May I speak with (sample person)?

1[] Yes (Go to A below)
2[] Not available (Go to 2)

2. Why is (sample person) not available to be interviewed?

1[] SP deceased (Skip to 6)
2[] SP moved (Skip to 4)
3[] SP temporarily absent/unavailable (Go to 3)
4[] SP incapable (Skip to 5)
5[] Other (Skip to 5)

3. Will (sample person) [return/be available] before (closeout date)?

1[] Yes (Schedule appointment)
2[] No (Go to 4)

4a. Has (sample person) moved to a new residence or is [he/she] in a health facility, group home, or some other place?

1[] SP moved (Record new address and telephone no.)
2[] SP in health facility/group home (Go to 4b)
3[] SP in jail (Skip to 5)
4[] SP in prison (End interview-noninterview)
5[] SP on vacation/visiting/temporarily absent (Skip to 4d)

b. What type of facility or group home is this?
Mark (X) first appropriate box.

01[] Hospital (Go to 4c)
02[] Nursing/convalescent home (Go to 4c)
03[] Retirement home (Record new address and telephone no.)
04[] Group home (Record new address and telephone no.)
05[] Supervised apartment
06[] Halfway house (Record new address and telephone no.)
07[] Board and Care home
08[] Developmental Center
09[] Other supervised group residence or facility
10[] Other

c. Refer to age on label.

1[] Under 69 (Skip to 5)
2[] 69+ (Go to 4d

d. Is it possible to interview (sample person) at the [facility/present location]?

1[] Yes (Record address and telephone no.)
2[] No (Go to 5)

5. Since I won't be able to interview (sample person), I need to talk to the person who knows the most about (sample person's) health. Who would that be?

1[] Respondent (Go to A below)
2[] Other person (Record person's name, address, and telephone no.)
3[] No one (End interview - non interview)
9[] DK/Ref (End interview - non interview)

6. On what date did (sample person) die?

__ __Month/__ __Day/__ __Year (Go to 7)

999999[] DK (Go to 7)

7. Did (sample person) die at home, in a hospital, in a nursing or convalescent home, or some other place?

1[] At home (End interview- noninterview)
2[] In a hospital (End interview- noninterview)
3[] In nursing/convalescent home (End interview- noninterview)
4[] Other place (End interview- noninterview)
9[] DK(End interview- noninterview)

[p.317]

Initial Screening - Continued

New Address (First or only)

Name of Place (If appropriate)
_____

Number and street
_______

City
_______

State
_______

ZIP Code
_______

Telephone

Area code
______

Number
______

1[] None
7[] Refused
9[] DK number
Second (If appropriate)
Name of Place (If appropriate)
_____

Number and street
_______

City
_______

State
_______

ZIP Code
_______

Telephone

Area code
______

Number
______

1[] None
7[] Refused
9[] DK number

Proxy Respondent

Name

______

1[] Mark box if same address/phone as SP (Skip to A1 on page 4)
Number and street

City
_______

State
_______

ZIP Code
_______

Telephone

Area code
______

Number
______

1[] None
7[] Refused
9[] DK number

GENERAL INSTRUCTIONS

1. Conduct all interviews by personal visit unless the only way to get an interview is by telephone.

2. After appropriate introductions, begin all interviews with A on page 2.

3. If the sample person (or proxy) is not within your normal assignment area, call your office for instructions.

4. Make minor corrections to the sample person's address or phone number on the label. Record new addresses and/or phone numbers above.

5. If a question is refused, enter "REF" in the answer space. If the respondent does not know the answer to a question, mark the "DK" box if there is one, or enter "DK" in the answer space.

6. The following symbols and print types are used throughout the questionnaire to standardize the asking of the questions:

* Long dash (--) - Insert the appropriate words or names from the list

* Underlined italics in parentheses - Insert the specified words, name, date, etc.

* Regular type in parentheses - Either read or do not read the parenthetical, depending
on the situation and the context of the question.

*Brackets with a slash ( [ / ] ) - Choose the appropriate words or phrase for the
particular interview.

* Bold capitals - Emphasize the word(s) when reading the question

7. If interviewing a proxy, substitute the sample person's name (or appropriate pronoun) for the word "You" in the questions.