Informed Consent (Paper)

ICAP 2021 Consent Form

Criminal Justice Coordinating Council

CONSENT FOR PARTICIPATION IN RESEARCH

Project Title: Intervention Cooperative Agreement Program (ICAP), funded by the Social Security Administration (SSA), Office of Acquisition, Grant Award Number ICAP21000002-01-00.

Principal Investigator(s):

Stefanie Lopez-Howard

Statistical Analysis Center Director

Criminal Justice Coordinating Council

104 Marietta St NW #440, Atlanta, GA 30303

(404) 657-1960

Dr. John Speir

Co-Principal Investigator

Applied Research Services

1050 Crown Pointe Pkwy Suite 500, Atlanta, GA 30338

NaShandra Howard

Statistical Analysis Center Research Analyst

Criminal Justice Coordinating Council

(404) 654-1825

Introduction:

• Please read this form. You may also ask someone to read the form to you. This form has information about this research study. Please sign the bottom if you want to participate.

• You can ask questions about this study at any time. Take all the time you need to decide if you want to participate. Participation is voluntary.

• The Georgia Criminal Justice Coordinating Council’s (CJCC) Statistical Analysis Center (SAC) and Applied Research Services (ARS) are doing this study. They will be referred to below as “the researchers.”

• CJCC has partnered with the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD), SSA, and the Department of Community Health (DCH). DBHDD, SSA, and DCH will be referred to below as “research partners.”

Why is this study being done?

• This is a study about a program for Medicaid Eligibility Specialists (MES) to help people with mental illness who are booked into county jails. MESs help people apply for Supplemental Social Security (SSI) and/or Social Security Disability Insurance (SSDI).

• The MESs are trained to help people fill out SSI/SSDI applications. Their help increases the chances that an application will be approved.

• The researchers will find out if the MES’s help with applying for benefits helps people stay out of jail.

Who will be in this study?

• People with serious or persistent mental illness will be in the study.

• Participants must be at least 18 years of age.

• Participants must be able to consent and sign their name.

• Our goal is to have 300 or more people in the study.

What will I be asked to do?

• You can get help from the MES to apply for SSI/SSDI benefits even if you choose not to be in the study.

• The MES will meet with you. They will get information about your mental health history, work history, housing, and other information for your application.

• You may also get help from a Forensic Peer Mentor (FPM). They will help you find services in your community. Access to an FPM depends on location.

• You will be asked to allow state and federal programs to share information about your earnings, benefits, and services received. Your Social Security number and any other information that identifies you will be used to ensure the correct information is collected.

• You will be asked to complete a minimum of three surveys. The surveys can be done online or over the phone. You can stop answering questions at any time during the survey.

  • You will receive the first survey from the MES soon after your application is submitted. The survey will ask about how the SSI/SSDI application went.

  • CJCC will ask you to complete another survey six months later. The survey will ask you whether you have benefits and if are using them. If you did not receive benefits, the survey will ask about other services you may be using.

  • CJCC will ask you to complete similar surveys each year until the end of the study in 2028.

What are the possible risks of taking part in this study?

• There is very little health, physical, or mental risk in this study.

• Some survey questions will ask how you rate your quality of life and the services you receive. If these questions upset you, you can skip them.

• You can decide at any time not to be in this study anymore.

What are the possible benefits of taking part in this study?

• You will not directly benefit from this study.

• You may benefit from working with the MES to apply for SSI/SSDI benefits. You do not have to be part of this study to get that help.

• Receiving SSI/SSDI benefits could improve your quality of life and help you stay out of jail.

• If the study shows that an MES helps people in jail get SSI/SSDI benefits, we can get more help for people in jail who have mental illness.

What will it cost me?

• You will not have to pay anything to use these services.

How will my privacy be protected?

• Your conversations with the MES will be in the visitation section of the jail.

• You choose how much information to give the MES and FPM.

• The MES and SSA are the only ones with access to all the information on your application. ARS will have access to some information on your application.
  
  

How will my information be protected?

• If the results from the study are published, you will not be identified by name. Your identity will remain private.

• ARS will keep all data collected as a part of this research study on a secured server.

• Your information will only be given to those within SSA, ARS, and CJCC.

• Your information will only be given to those who need it or those that are allowed to receive it under Federal law and regulations.

• Information collected as a part of your SSI/SSDI application will not be used for this research study. Your mental health history will be documented for the application. This information will not be used for the research study. It will be submitted to SSA as a part of the application. It will only be used for the application.

• ARS will only use your first name, last name, date of birth, race, sex, and your Social Security number to request information about you from our partners.

• ARS will ask SSA whether your application for SSI/SSDI is approved. They will also ask how long your application took to review, and your monthly benefit, if you are approved.

• ARS will receive information from DCH about whether you use Medicaid benefits. ARS will request to know whether you went to a doctor and the date of the visit. This will help the researchers know if getting medical care helps you stay out of jail.

• Any information that ARS asks SSA, DCH, and DBHDD for will be shared using a Secure File Transfer Protocol (SFTP). That means that only ARS can get to the folder on the Internet where your information will be shared.

• ARS and SSA will follow all Federal laws, regulations, and directives to protect your information. The researchers need both a password and another security code to get to the folder with your data.

• The researchers will keep a copy of your signed consent form. The consent forms will be kept in a secure folder on CJCC’s servers. CJCC will allow SSA staff with a need for the consent forms access to the forms.

• ARS will take out your name, Social Security number, and date of birth from the final study dataset after they have the data from DBHDD, DCH, and SSA. Your record in the final study dataset will only have a random identification number on it.

• CJCC will use the final study dataset without your identifying information to understand how SSI/SSDI application process went for you.

What are my rights as a research participant?

• There is no penalty if you choose to not participate. You will not lose any of your approved benefits. You can still get help from the MES and the FPM.

• You can stop being in this research study at any time and for any reason. There is no penalty. You will not lose any of your approved benefits.

• You may skip or refuse to answer any survey question for any reason.

• The SSI/SSDI application information you give to the MES during this study will only be used to decide if you can receive SSI/SSDI benefits. SSA will not use any other information collected for this study to make decisions about your current or future SSI/SSDI benefit applications.

• If the results from the study are published, you will not be identified by name. Your identity will remain private.

• You will be alerted about any findings during the research that may change your mind about participating. 

• This consent is good from the day you sign it until December 31, 2028. You can still change your mind and take away your consent at any time.

What other options do I have?

• You do not have to be part of this study to get help from the MES or the FPM assisting with your SSI/SSDI application.

• You can also apply on your own. The SSI/SSDI application is free online.

Whom may I contact with questions?

• If you have any questions about the study or how CJCC and ARS are using your data, please call either Stefanie Lopez-Howard at (404) 657-1960 or NaShandra Howard (404) 654-1825. You can also contact Stefanie or NaShandra if believe you may have suffered a research-related injury.

• If you wish to discuss your rights as study participant or the permission for this study from the Institutional Review Board, call the University of Southern Maine at 207-780-4517.

Will I receive a copy of this consent form?

• Yes, you will be given a copy of this consent form.

______________________________________________________________________________

Participant’s Statement

I understand what this study is about and what I am being asked to do. I understand the risks and benefits of being part of this study. I volunteer to take part in the research.  I make this choice freely.

I agree to allow SSA to send the following information to the ARS for this research study:

• The outcome of my application for benefits,

• The date of my application for benefits,

• Whether I am approved for benefits,

• Benefit amount I received,

• Whether I am denied for benefits, and if so why,

• The dates of decisions and appeals,

• Whether and when I may have applied for benefits from SSA before this study, and

• The outcome of any prior application(s).

Information released by SSA under this consent will be sent electronically to ARS. ARS is located at the following address:

Applied Research Services

1050 Crown Pointe Pkwy

Suite 500

Atlanta, GA 30338

This consent allows SSA to release information to ARS for this research study until December 31, 2028. That is the end date for this consent.

I agree to allow DCH to share information with the researchers for this study. I understand that DCH will share very limited information about claims they pay for my medical treatment. This information will only include the amount of money DCH paid, the date I received treatment, and the type of doctor I saw.

I hereby authorize and understand that Applied Research Services will access my computerized criminal history that is stored and maintained by the Georgia Bureau of Investigation.

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_______________________________________ _______________________________

Phone Number Participant’s DOB

_______________________________________ ­­­_______________________________

­­­­­­­­­­­­­­­­­­Email Address Participant’s SSN

_______________________________________ ­­­­­_______________________________

­­­­­­­­­­­­­­­­­­Participant’s Signature Date

_______________________________________

Print Name

Signature of Witness

I was present when the researcher(s) described the study to the participant, and I am a witness to the fact that the participant consented to participation in this study.

_______________________________________ _______________________________

Witness’ Signature Date

_______________________________________

Print Name

Researcher’s Statement

The participant named above had enough time to consider the information, had an opportunity to ask questions, and voluntarily agreed to be in this study.

Researcher’s Signature Date

Print Name

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