0920 First Follow-up Survey Supplement for Caregivers of Adol

Form Approved
OMB No. 0920-xxxx
Exp. Date: xx/xx/xxxx

Attachments 4a-4b: First Follow-up Survey Supplement for Caregivers of Adolescents

Public reporting burden of this collection of information is estimated to average 20 minutes per response, including the time for
reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and
reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a
collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden
estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR
Reports Clearance Officer, 1600 Clifton Road NE, MS D-74, Atlanta, GA 30333: ATTN: PRA (0920-xxxx).

SEED Follow-Up Study: Adolescent Survey Supplement
(for SEED 2 Caregivers)

Contents
A. Transitioning from High School ....................................................................................................................... 2

B.

Financial Planning ............................................................................................................................................ 4

C.

Transitioning to Adult Health Care .................................................................................................................. 5

D. Sexual Health and Education ........................................................................................................................... 7
E.

Your Expectations for This Child ...................................................................................................................... 9

F.

Special Skills ................................................................................................................................................... 11

G. Social Responsiveness ................................................................................................................................... 12

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A. Transitioning from High School

1. DURING THE PAST 12 MONTHS, has your child been enrolled in school? If your child graduated or
exited high school more than 12 months ago or participates in homeschool then check “no.”
Yes
No (Skip to question 10)
2. During either this year or the last school year your child was enrolled, did you or another adult in your
household meet with teachers or school counselors to set goals for what your child will do after high
school and create a plan for how to achieve them? Sometimes this is called a transition plan.
Yes
No
Don’t know
3. During either this school year or the last school year your child was enrolled, did your child meet with
teachers or school counselors to set goals for what he/she will do after high school and create a plan
for how to achieve them? Sometimes this is called a transition plan.
Yes
No
Don’t know
4. Does your child currently have a transition plan?
Yes
No (Skip to question 10)
Don’t know (Skip to question 10)
5. Did the school mostly come up with the goals for your child’s transition plan or was it mostly you
and/or your child who came up with the goals?
Mostly the school
Mostly myself and the school
Mostly myself and my child
A combination of all together
Other, specify ___________________
I don’t know about any goals
6. Which of the following best describes your child’s role in their own transition planning?
My child was present in discussions but participated very little or not at all
My child provided some input
My child took a leadership role, helping set the direction of the discussions, goals and plans
My child was not involved in the transition planning
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I don’t know about any goals
7. How do you feel about your family’s involvement in the decisions about your child’s transition plan? Do
you feel you…
Wanted to be more involved
Were involved about the right amount
Wanted to be less involved
No opinion
8. How useful has this planning been in helping your child prepare for life after high school? Would you
say it has been...
Very useful
Somewhat useful
Not very useful
Not useful at all
Don’t know
9. To what extent do you agree or disagree with the following statement: “My child’s transition plan goals
are challenging and appropriate”
Strongly agree
Agree
Disagree
Strongly disagree
No opinion
10. How often do you talk with your child about what they plan to be doing after high school?
Not at all
Rarely
Occasionally
Regularly
Don’t know

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B. Financial Planning
1. After graduation/high school completion, how do you want your child to be supported? (Check all that
apply):
Social Security/ SSI/ SSDI
My child’s own wages
Government Benefits (food stamps, subsidized housing, etc.)
Your financial support
Other, specify: __________________________________
2. Do you think that when your child turns 18 years old, your child will… (Check all that apply)
Be their own legal guardian
Need a guardian/conservator for financial decisions
Need a guardian/conservator for medical decisions
Need an advocate or personal representative
Need a medical proxy
Need Power of Attorney
Need a legal guardian appointed
Not sure/don’t know
3. Have you prepared for the future support for your child (e.g., trust fund/special needs trust)?
Yes
No
4. Have you prepared a will that includes plans for your child?
Yes
No

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C. Transitioning to Adult Health Care
1. At his or her LAST preventive check-up, did your child have a chance to speak with a doctor or other
health care provider privately, without you or another adult in the room?
Yes
No
2. Has your child’s doctor or other health care provider actively worked with your child to:
Yes
No
Don’t
Know
a. Think about and plan for their future? For example, by taking
time to discuss future plans about education, work,
relationships, and development of independent living skills.

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b. Make positive choices about their health? For example, by
eating healthy, getting regular exercise, not using tobacco,
alcohol or other drugs, or delaying sexual activity.

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c. Gain skills to manage their health and health care? For
example, by understanding current health needs, knowing
what to do in a medical emergency, or taking medications
he/she may need.
d. Understand the changes in health care that happen at 18? For
example, by understanding changes in privacy, consent, access
to information, or decision-making.

3. Eligibility for health insurance often changes in young adulthood. Do you know how your child will be
insured as they become an adult?
Yes
No
4. Do any of your child’s doctors or other health care provides treat only children?
Yes
No (Skip to question 6)
5. If yes, have they talked with you about when your child will need to see doctors or other health care
providers who treat adults?
Yes
No
6. DURING THE PAST 12 MONTHS, how often has someone on your child’s care team explained to you
who was responsible for different parts of your child’s care? (Check ONE)
Never

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Rarely
Sometimes
Usually
Almost always
Always
7. DURING THE PAST 12 MONTHS, how often have you felt that your child’s care team members thought
about the “big picture” when caring for your child, meaning dealing with all of your child’s needs?
(Check ONE)
Never
Rarely
Sometimes
Usually
Almost always
Always

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D. Sexual Health and Education
1. Have you received guidance from a doctor, teacher, or other professional on how to talk about
sexuality with your child?
Yes
No
2. Has your child received any form of sexual education, through informal conversation or in structured
groups or classes?
Yes
No
3. Who do you feel should be the primary sexual educator for your child (Choose ONE)?
Parent or caregiver
Doctor
Teacher
Other professional, such as a psychologist
Sexual education should be a shared responsibility
4. Please answer the following:

a.

I feel comfortable talking about sexuality with my child.

I know the topics related to sexuality that I need to educate my
child.
I feel competent teaching my child about the reproductive
c.
system.
I feel competent teaching my child about contraception and
d.
pregnancy.
I feel competent teaching my child about sexually transmitted
e.
infections.
I feel competent teaching my child about romantic
f.
relationships.
b.

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Yes

No

Don’t
Know

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5. Has your child ever ….
Yes

No

Expressed the desire for a relationship (dating, marriage,
family)?

Don’t
Know

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Shown or expressed attraction to anyone of the other sex?

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Shown or expressed attraction to anyone of the same sex?

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Had a sexual/romantic relationship with anyone of the other
sex?
Had a sexual/romantic relationship with anyone of the same
sex?

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E. Your Expectations for This Child

1. How likely do you think it is that your child will…
a. Get a regular high school diploma? This
includes the standard high school diploma
awarded to students after completing standard
high school curriculum & exit exams OR
students who received a “GED” but does not
include a certificate of completion or a special
diploma for students in special education.
b. Get an IEP modified high school diploma OR
certificate of completion?
c. Attend school after high school? Including
college, technical, or trade school.
d. Attend a special training program after high
school for persons with intellectual disabilities?
e. Complete a technical or trade school
program?
f. Immediately start working at a job (part or
full-time) or volunteering right after high
school?
g. Graduate from a 2-year or community
college? This does not include a certificate of
completion or a special diploma for students in
special education.
h. Graduate from a 4-year college? This does not
include a certificate of completion or a special
diploma for students in special education.
i. Get a driver’s license?
j. Eventually live away from home on their own
without supervision?
k. Eventually live away from home on their own
with supervision?
l. Eventually get a paid job? This includes any
paid job – child does not need to make enough
to support self. This can include supported
employment.
m. Earn enough to support him/herself without
financial help from his/her family or
government benefit programs?
n. Get married or have a life partner?
o. Have children?

DEFINITELY
WILL

PROBABLY
WILL

PROBABLY
WON’T

DEFINITELY
WON’T

DON’T
KNOW

ALREADY
HAS

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F. Special Skills
1. Does your child have any marked special skills that are above the skills of other children the same age?
(Check all that apply)
Skills

Yes

No

Don’t
Know

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Art or drawing skills

Calendar calculating abilities

Mathematical skills

Mechanics or spatial skills

Memory skills

Musical abilities
Other, specify:
__________________

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If YES, does your child use this
skill in a meaningful way?
☐Yes
☐No
☐Don’t know
☐Yes
☐No
☐Don’t know
☐Yes
☐No
☐Don’t know
☐Yes
☐No
☐Don’t know
☐Yes
☐No
☐Don’t know
☐Yes
☐No
☐Don’t know
☐Yes
☐No
☐Don’t know

G. Social Responsiveness

[This is a place holder for the SRS-2]

You have reached the end of the survey.
Thank you for participating!
You and your child may also be eligible to take part in an in-person evaluation of learning abilities, at no cost
to you. You might remember that your child received an in-person evaluation in the original SEED study. This
second evaluation will help us learn how abilities change over time. Like the first evaluation, we will measure
verbal and nonverbal abilities compared to other people the same age.
You and your child are under no obligation to take part in the in-person evaluation, but if you are interested
and would like to learn more, please indicate your interest below.
☐ Yes, please contact me. I would like to learn more about this follow-up in-person evaluation.
☐ No, I am not interested in learning more about this follow-up in-person evaluation.
Note to CNI: This final question is also included at the end of the Survey Supplement for SEED 1 Caregivers (i.e.,
Young Adult Supplement) and is only intended for SEED 1 & 2 families from the CO, GA, & MD SEED sites.

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