Caregiver - Other

Caregiver—Other

Attachment B: System of Care Assessment

Family Stipend Receipt 
Date:

__________________________________

Project:

CMHS, #633430.0.008.0x.005

Location:

__________________________________

I, _____________________________________, received $25.00 for my participation in an
(print name)

interview for the national evaluation of the Comprehensive Community Mental Health
Services for Children and Their Families Program.

_____________________________________
(signature)

System/Program__________________________

Interviewer___________________

Interviewed______________________________

Assessment #_________________

INFORMED CONSENT
System of Care Assessment
Caregiver
The Center for Mental Health Services in the United States Department of Health and Human Services is
sponsoring a national evaluation of children’s mental health services and systems of care. You are invited to
participate in this evaluation because your community has received funding to improve community-based mental
health services for children and families. Your input is important to helping us understand how systems of care
serve children and what works best. We are asking you to participate in a 90-minute interview with a trained
interviewer who will ask you to respond to a set of questions about the children’s mental health system of care in
your community. These same questions are asked of all caregivers who have agreed to participate in this
evaluation. Here are some things we want you to know about participating in the interview:
•

Participation in the interview is completely voluntary.

•

You may choose to discontinue the interview at any time, for any reason.

•

Your name will not be used in any reports about this interview and no quotes will be attributed to you.

•

There will be no direct benefit to you from this participating in the evaluation. The risk may be the discomfort
some people feel when expressing their opinions or talking about their experiences. The services your child
and family receive will not be impacted in any way by anything said during the interview.

•

You will be given $25 in appreciation for your participation in the evaluation.

•

A report that combines what we learn from all of the interviews conducted in your community will be sent to
the children’s mental health services program director and other program partners. They may share that report
with others at their discretion.

•

To help keep information about you confidential, we have obtained a Certificate of Confidentiality from the
U.S. Department of Health and Human Services (DHHS). This Certificate adds special protection for the
research information about you. This Certificate does not imply that the Secretary, DHHS, approves or
disapproves of the project. The Certificate of Confidentiality will protect the investigators from being forced,
even under a court order or subpoena, to release information that could identify you. We may release
identifying information in some circumstances, however. For example, we may disclose medical information
in cases of medical necessity, or take steps (including notifying authorities) to protect you or someone else
from serious harm, including child abuse/neglect. Also, because this research is sponsored by DHHS, staff
from DHHS may review records that identify you during an audit.

•

Any questions you have about this interview will be answered before the interview begins.

•

Any questions you may have after interview is concluded may be directed to Mary Spooner at ICF, Atlanta,
GA. Her toll-free telephone number is 1-866-368-5657.

•

Your signature below indicates that you understand the above and agree to participate.

Participant Printed Name ___________________________________________________________________
Participant Signature ______________________________________________________________________
Witness___________________________________________________________ Date ___________________
CMHI National Evaluation

2 signed forms: 1 for the interview participant and 1 for the interviewer

System/Program__________________________

Interviewer___________________

Interviewed______________________________

Assessment #_________________

INFORMED CONSENT
System of Care Assessment
Parent/Guardian Approval for Youth Participant Aged 14–17
The Center for Mental Health Services in the United States Department of Health and Human Services is sponsoring
a national evaluation of children’s mental health services and systems of care. We are asking your permission to
invite your child to participate in a 45-minute interview with a trained interviewer who will ask a set of questions
about youth involvement in systems of care. Specifically, the purpose of the interview is to find out the different
ways in which youth are involved in their system of care. For example, youth may be involved in planning their own
services or making decisions about things that may affect other youth. Your child was identified as a potential
participant because he/she currently receives services in a system of care community. If you allow us to invite your
child to participate, here are some things you should know:
•

Your child’s participation is completely his/her choice. Even if you grant us consent, s/he may choose to not
participate.

•

Your child’s name will not be used in any reports from this interview and no quotes will be attributed to your
child. The information provided will be carefully protected and will not be shared with anyone, including parents
or guardians.

• To help keep information about your child confidential, we have obtained a Certificate of Confidentiality from
the U.S. Department of Health and Human Services (DHHS). This Certificate adds special protection for the
research information about your child. This Certificate does not imply that the Secretary, DHHS, approves or
disapproves of the project. The Certificate of Confidentiality will protect the investigators from being forced,
even under a court order or subpoena, to release information that could identify your child. We may release
identifying information in some circumstances, however. For example, we may disclose medical information in
cases of medical necessity, or take steps (including notifying authorities) to protect your child or someone else
from serious harm, including child abuse/neglect. Also, because this research is sponsored by DHHS, staff from
DHHS may review records that identify your child during an audit.
•

Your child may stop the interview at any time and for any reason or choose to not answer a question, without
penalty or loss of benefits.

•

Your child will receive $15 in appreciation for his/her participation.

•

Other than the payment, there will be no direct benefit to your child from participating in this interview. Some
youth may feel uncomfortable when expressing their opinions or talking about their experiences. Your child’s
participation and anything said in the interview will not affect the services your child and family receive any
way.

•

Any questions you or your child may have about this interview will be answered before the interview begins. If
you have questions after the interview, you may contact Mary Spooner at ICF, Atlanta, GA. Her toll-free
telephone number is 1-866-368-5657.

Voluntary Consent
I have read the above, or it has been read to me. My child may participate.
Parent/Guardian Printed Name ___________________________________________________________
Parent/Guardian Signature _________________________________________________________________
Witness___________________________________________________________ Date_______________

CMHI National Evaluation

2 signed forms: 1 for the interview participant and 1 for the interviewer

System/Program__________________________

Assessment Date_________________

INFORMED CONSENT for RECORD REVIEW
System of Care Assessment
The Center for Mental Health Services in the United States Department of Health and Human Services is
sponsoring a national evaluation of children’s mental health services and systems of care. You are invited
to participate in this evaluation because your community has received funding to improve communitybased mental health services for children and families. Your input is important to helping us understand
how systems of care serve children and what works best. We are asking for your permission to review the
case record of services provided to you and your child through this program. We review the case records
for the purpose of learning about how the program is developing and in determining the program’s
adherence to system of care principles. We review case records in all programs across the nation for the
same purpose. Here are some things we want you to know about participating in the national evaluation:
•

Participation is completely voluntary.

•

No identifying information about your child or family is obtained from or recorded in notes taken on
the case record review.

•

Your name will not be used in any reports resulting from the national evaluation

•

There will be no direct benefit to you from this participating in the record review or national
evaluation. The services your child and family receive will not be impacted in any way.

•

A report that combines what we learn from all of the information gathered from the system of care
program in which you and your child participate will be sent to the children’s mental health services
program director and other program partners. They may share that report with others at their
discretion.

•

To help keep information about you confidential, we have obtained a Certificate of Confidentiality
from the U.S. Department of Health and Human Services (DHHS). This Certificate adds special
protection for the research information about you. This Certificate does not imply that the Secretary,
DHHS, approves or disapproves of the project. The Certificate of Confidentiality will protect the
investigators from being forced, even under a court order or subpoena, to release information that
could identify you. We may release identifying information in some circumstances, however. For
example, we may disclose medical information in cases of medical necessity, or take steps (including
notifying authorities) to protect you or someone else from serious harm, including child
abuse/neglect. Also, because this research is sponsored by DHHS, staff from DHHS may review
records that identify you during an audit.

•

Any questions you have about the record review or evaluation will be answered before the case
record is reviewed.

•

Any questions you have about the record review or national evaluation may be directed to Mary
Spooner at ICF, Atlanta, GA. Her toll-free telephone number is 1-866-368-5657.

•

Your signature below indicates that you understand the above and agree to participate in the national
evaluation.

Participant Printed Name _____________________________________________________________
Participant Signature _________________________________________________________________
Witness_____________________________________________________Date_____________________
CMHI National Evaluation

2 signed forms: 1 for the interview participant and 1 for the interviewer

Attachment F: Consent Letters for Longitudinal Child and Family Outcome Study
and Service Experience Study

SAMPLE INFORMED CONSENT—CAREGIVER
(Suggested Content and Wording)

Key Components of a Consent Form
Elements to Include:
Purpose of the Study
• Funding source
• Local system of care name
• Description of why the study will
be conducted

Description of Participation
• Participant responsibilities
• Description of data collection
methods: interviews--frequency,
duration; record review;
observation, etc.
• Description of youth
involvement
• Other guidelines (e.g., possible
data sources, age, changes in
participation over time, etc.

Risks and Benefits
• Potential risk factors associated
with participation
• Potential benefits that may be
gained through participation

Compensation for Participation
• Type and amount of
compensation participant will
receive for participation
• Process or schedule for
payment

Contact Information
• Contact information for
someone working on the study
who will be available to answer
participant questions

Purpose
The Center for Mental Health Services in the United States
Department of Health and Human Services is studying systems of
care. These systems of care are funded to improve services for
children and families. The (system of care name) where your child
has received services is a part of this project. This project will be
used to help make services for children and families better.

Description of Participation
As a part of this project, you will be interviewed up to five times. We
will talk with you as services begin. Then you will be contacted
every 6 months for up to 24 months after services began. You will
be interviewed even if you and your child no longer receive services
from (system of care name). We will talk with you at home, or at
any other place that is best for you. In the interviews, you will be
asked about your child, your family, and the services you have
received. This will take about 2 hours.
As part of the project, we would also like to make use of your child’s
school and other records. These would include disciplinary,
attendance, and transfer records. They may also include juvenile
court records, records from the department of human services and
child protection, and mental health services records related to your
child’s care. We may also want to ask questions of agency
representatives from juvenile court, the department of human
services and child protection, and/or your child’s school.
If your child reaches age 11 at any time during this project, we will
ask your child if we can interview him or her. At that time, we will
ask for your permission to talk to your child. We will also describe
the interview process to your child.

Risks and Benefits
There are no direct benefits to you being a part of this project. You
may benefit from the services you receive. You may also learn new
things about yourself. As a result of this project, services for
children with mental health needs may get better. You may feel
uncomfortable when talking about personal matters. We have taken
steps to protect your privacy.

Compensation
If you agree to take part in this project, you will receive $XX for your
first interview. You will be paid $XX for each interview at 6, 12, 18,
and 24 months. Payment is made for the time you give to be
interviewed.

Contact Information
If you have any questions about this evaluation project, you can call
(evaluator) to have your questions answered. You can call him/her
collect at (555) 555-5555. To contact the Institutional Review Board
that reviewed this project, call (555) 555-5555.

Continued on next page
Sample Informed Consent—Caregiver

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Key Components of a Consent Form
Protection of Information
• Protocol for maintaining participant
privacy
• Description and purpose of the
Federal Certificate of Confidentiality
• Mandated reporting requirements
Rights Regarding Decision to Participate
• Statement of participant rights to
terminate participation at will
• Statement that the termination of
participation will not lead to adverse
consequences
Voluntary Consent
• Statement of participant
understanding of the consent form
• Statement that participant has had all
of his or her questions answered
• Permission to be interviewed
• Permission to access service provider
records for 12 months previous to
service and 24 months after the first
service
• Signature line for participant to sign,
thus granting consent to participate
• Date

Protection of Information
All information we learn about you will be protected. We have
taken steps to protect your privacy. None of the information for
this study will include your name or other information that
identifies you. It only will include special codes. Any papers
with your name on them will be kept in a locked filing cabinet.
In reports, your information will be grouped together with
information from others. We will never mention your name.
Only approved people will be able to see your information. The
information will be shared with the agency that pays for this
study, companies that work for them, and other places that
provide services to you.
Also, we have applied for a Certificate of Confidentiality from
the Federal government to protect the people who interview
you from being forced, even under a court order or subpoena,
to identify you. An exception to privacy is if we learn about
child abuse or neglect or if you tell the person who interviews
you that you plan to harm yourself or someone else, then
he/she will tell a doctor or some other authority so that you can
get help. In addition, the Federal agency funding this research
may see your information if it audits us. The Certificate of
Confidentiality does not imply that the government has
approved or disapproved of this project.

Rights Regarding Decision to Participate

I understand that if I agree to take part in this project, I can
change my mind and quit at any time. If I change my mind and
quit, any information I gave to the project will be destroyed, if this is what I want. If I decide not to be in
this project, it will not affect services for my child and family. It also will not affect services that we might
want in the future.

Voluntary Consent
I have read this form or, it has been read to me, and I understand what it says. My questions have been
answered. A copy of this form will be given to me. By signing my name below, I freely agree:
ƒ to be interviewed every 6 months, for up to 24 months

____

ƒ to have the project access my child’s mental health records,
Past 12 Months Next 24 Months
education records, juvenile justice records, department of
social services and child protection records, or service records
____
____
from other services coordinated through (system of care name)
Caregiver/Guardian (Type or Print Full Name): ______________________________________
Signature of Caregiver/Guardian:
________________________________________
Date: ___/___/____
Name of Child/Youth (Print) ___________________________________
Date: ___/___/____

Sample Informed Consent—Caregiver

| Page 2 of 2 | April 2011