NEW YORK STATE OFFICE FOR THE AGING 2 Empire State Plaza, Albany, NY 12223-1251

Andrew M. Cuomo, Governor Greg Olsen, Acting Director An Equal Opportunity Employer

PROGRAM INSTRUCTION Number: 17-PI-20 Supersedes: 16-PI-16; 17-PI-19

Expiration Date: N/A

DATE: August 3, 2017 TO: Area Agencies on Aging Directors, PeerPlace Champions, NY Connects

Local Administrative Agencies, NY Connects Coordinators, and Regional NY Connects Grantees

CC: Social Service District Commissioners SUBJECT: Informed Consent: Updated Process and Documents ........................................................................................................................................ ACTION REQUESTED: Effective Immediately PURPOSE: The purpose of this Program Instruction (PI) is to provide an update of the existing process for obtaining informed consent and to introduce revised forms, letters, and other documents to be used in relation to informed consent. These revised documents have been attached to this PI and will also be available in the Client Data System. The purposes for these revisions include simplifying the language used, providing information more concisely, and reducing the overall number of documents by consolidating where appropriate. BACKGROUND: Pursuant to federal and state requirements, the New York State Office for the Aging, Area Agencies on Aging (AAA), and all providers of services under the Older Americans Act or New York’s Elder Law must adhere to procedures protecting the confidentiality of personal information gathered in the conduct of their respective responsibilities under the Act. This includes obtaining the informed consent of an individual before his or her

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personal information is recorded in the Client Data System and before any disclosure of personal information is made, including to service providers for referral purposes. This Program Instruction provides the procedures to be followed.

NYSOFA first provided instructions to be followed and documents to be used in obtaining informed consent on August 5, 2016, through 16-PI-16: “Statewide Client Data System: Informed Consent: Written and Verbal Consent Requirements, and how to Meet Them Beginning in the Go-Dark Period.” Since then, NYSOFA has issued additional guidance through Program Instructions and Technical Assistance Memoranda to supplement this process and provide clarity. This Program Instruction supersedes 16-PI-16. All supplemental issuances relating to informed consent are unaffected.

Identification of Changes

The revisions to consent forms, letters, and other documents were made with a particular focus on: (1) consolidating multiple forms where possible; (2) simplifying the language used; and (3) more concisely providing the necessary information.

A new consolidated document entitled “Informed Consent Form (Aging Services)” will replace the following three documents first provided through 16-PI-16: “Informed Consent to Capture Form (Aging Services)”; “Informed Consent to Share Form”; and, “Informed Consent Attestation.” In addition, the consolidated form will also contain a section for those clients that consent to certain information being disclosed in the event of an emergency or disaster. This will further streamline obtaining consent for various purposes into one document. The Informed Consent Form (Aging Services) contains lines to be initialed by the client for each action being consented to, and a single signature line to be signed by the client. The Form also contains an attestation section to be completed by the worker obtaining consent.

The NY Connects counterpart to this form is a new consolidated document entitled “Informed Consent Form (NY Connects),” which replaces the following three documents first provided through 16-PI-16: “Informed Consent to Capture Form (NY Connects)”; “Informed Consent to Share Form”; and, “Informed Consent Attestation.” This form is to be completed in the same manner described above.

A new consolidated document entitled “Informed Consent Follow-Up Letter/In-Person Notice (Aging Services)” will replace the following two documents first provided through 16-PI-16: “Informed Consent Follow Up Letter (Aging Services)” and “Informed Consent In-Person Notice (Aging Services).” This document has been drafted to apply to both telephone (verbal) and in-person communications in which consent has been obtained. It should be provided to a client either personally or by mail, as the case may be, after a client first provides consent to capture.

A new consolidated document entitled “Informed Consent Follow-Up Letter/In-Person

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Notice (NY Connects)” will replace the following two documents first provided through 16-PI-16: “Informed Consent Follow-Up Letter (NY Connects)” and “Informed Consent In-Person Notice (NY Connects).” This document has been drafted to apply to both telephone and in-person communications in which consent has been obtained. It should be provided to a client either personally or by mail, as the case may be, after a client first provides consent to capture.

A new consolidated document entitled “Informed Consent Revocation Form (Aging Services and NY Connects)” will replace the following two documents first provided though 16-PI-16: “Revocation of Consent Form (Aging Services)” and “Revocation of Consent Form (NY Connects).” This document has been drafted to be appropriate for use in both Aging Services and NY Connects.

The following chart outlines the consolidation of previous documents:

Document Issued in 16-PI-16 New Documents

Informed Consent to Capture Form (Aging Services)

Informed Consent to Capture Form (NY Connects)

Informed Consent to Share Form

Informed Consent Attestation

Informed Consent Form (Aging Services)

Informed Consent Form (NY Connects)

Informed Consent Follow-Up Letter (Aging Services)

Informed Consent In-Person Notice (Aging Services)

Informed Consent Follow-Up Letter (NY Connects)

Informed Consent In-Person Notice (NY Connects)

Informed Consent Follow-Up/In-Person Notice (Aging Services)

Informed Consent Follow-Up/In-Person Notice (NY Connects)

Revocation of Consent Form (Aging Services)

Revocation of Consent Form (NY Connects)

Informed Consent Revocation Form (Aging Services and NY Connects)

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Written and Verbal Consent This PI identifies in which instances it is acceptable for a worker to obtain verbal consent (i.e., interactions taking place over the telephone), and when it is required for the worker to obtain written consent (i.e., in-person interactions). While processes to be followed in obtaining consent are similar for AAA-related functions and NY Connects-specific functions, the scripts and forms used are different in order to address differences in the programs. Written consent is required when meeting with a client in-person. Both written and verbal consent processes are broken out into consent to capture, consent to share, and consent to refer components, in order to provide the specific information to inform the client, as well as to follow the flow of the different stages of interaction with the client in the course of a phone call or in-person meeting. There are separate scripts and other related information for the consent to capture, consent to share, and consent to refer stages of the interaction with the client. The intent is to allow the process to flow, while also obtaining the necessary informed consent. PROCESSES TO BE FOLLOWED Consent to Capture For all new clients, consent to capture the client’s information must be obtained before any identifying information may be entered into the Client Data System and before a client record may be created. Verbal Consent to Capture If a new client is spoken with on the telephone, verbal consent to capture must be obtained using the appropriate scripts before a client record is created. The scripts will appear in the Client Data System as it is navigated by the worker. The worker must then indicate electronically whether consent to capture has been obtained and, if so, must electronically attest to this. Verbal consent to capture may be obtained from new callers you are speaking to on the telephone for the following programs and services if personal information is to be saved and a client record is to be created:

• AAA Information and Assistance (I&A); • NY Connects Information and Assistance; and • Health Insurance Information Counseling and Assistance Program (HIICAP).

For AAA Information and Assistance and NY Connects Information and Assistance, if a client does not provide consent for his or her information to be saved in the Client Data

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System, units of I&A service may be recorded anonymously through the agency’s “Anonymous, Anonymous” record.

For new clients being spoken with via telephone that may receive services requiring the completion of an assessment (e.g., COMPASS), verbal consent to capture must be obtained and a client record must be created before a home visit can be scheduled (or, where applicable, before services can be initiated prior to the completion of an assessment). At such time as an assessment is conducted, the client’s consent to capture must also be obtained in writing using the appropriate form.

After verbally providing informed consent to capture, the client must be mailed the appropriate “Informed Consent Follow-Up Letter/In-Person Notice.”

Written Consent to Capture

Written consent to capture must be obtained from all new clients who are being met with in person and/or having an assessment or re-assessment conducted. The appropriate forms must be used in obtaining written consent, and must be completed as described above before a client’s information is to be entered into the Client Data System. The forms must also be uploaded and saved as an attachment in the client’s record.

After providing informed consent to capture in writing, the client must be provided with the appropriate “Informed Consent Follow-Up Letter/In-Person Notice.”

Consent to Capture for Congregate Meals Clients

With very few exceptions, most services will require the creation of a client record which, in turn, requires that the client’s consent to capture be obtained. Most services may not be provided anonymously. However, in addition to AAA Information & Assistance and NY Connects Information & Assistance, Congregate Meals may be provided to clients that do not consent to their information being captured.

There are requirements regarding data collection contained in 14-PI-02 and elsewhere that apply to Congregate Meals. Under these requirements, efforts must be made to gather certain information from all Congregate Meals clients. If this information is to be entered into the Statewide Client Data System in a way that identifies the client, their informed consent must be obtained. If a client ultimately does not provide the requested information or does not consent to the entry of their information in the system, Congregate Meals need not be terminated.

If a Congregate Meals client does not provide consent to capture their information, and continues to receive congregate meals, the units of service for such a client may be tracked using the “Anonymous Anonymous” record in the Statewide Client Data System, or by creation of an “Aggregate Event.” Because no assessment is needed at any time, so long as the client qualifies for the meal, they may be served without

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recording their identifying information. If the client is to receive any other service, informed consent to capture will be necessary.

Use of anonymous entry for Congregate Meals clients should be a last resort, and reasonable efforts must be made to obtain the necessary information from each client, and to obtain each client’s informed consent to capture this information.

Consent to Share/Consent to Refer

For all new and existing clients, consent to share and consent to refer the client’s information must be obtained before any identifying information may disclosed for each referral or other purposes. Limited exceptions to this requirement are identified and discussed in 17-PI-03: “Disclosures of Personal Information Involving Health and Safety of an Individual.”

Verbal Consent to Share and Refer

“Consent to share” and “consent to refer” are separated within the Client Data System. In this context, “consent to share” means consent to the manner in which information will be shared if a referral is made via the Client Data System. “Consent to refer” means consent to the specific referral. The two are separated so that the necessary information relating to how information is shared need only be explained once. Once a client provides consent to share and this is recorded in the system, each subsequent referral will require only consent to refer, which involves a very brief script.

Before making a referral, the worker will be prompted to read the appropriate scripts and to identify the entity or entities to which a referral will be made. The worker must indicate electronically whether consent to share and consent to refer have been obtained and, if so, must electronically attest to this.

Written Consent to Share and Refer

If a new or existing client is met with in-person and potential referrals are discussed, informed consent to share and refer must be obtained before any disclosures of information may be made. The appropriate forms must be used in obtaining written consent, and must be completed as indicated. Before the form is signed or initialed by the client, the worker must complete the lines provided to identify those entities to which a referral will be made. The forms must also be uploaded and saved as an attachment in the client’s record.

If multiple referrals are discussed and consented to by a client during a visit, only a single form needs to be completed to obtain consent for these referrals. All entities that will receive the client’s information must be identified in the space provided in the form.

If a client is consenting to one or more referrals during the same visit that he or she has

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provided consent to capture, both may be indicated on a single form. The client must initial all applicable lines and sign at the end.

If Consent is Revoked by Client

All clients will be provided the option to revoke consent previously granted at any time, and will be notified of this option through an Informed Consent Follow-Up Letter/In-Person Notice. Clients wishing to revoke consent are instructed to contact the AAA to request an Informed Consent Revocation Form. This form should be provided by mail, or by email if requested by the client.

Any revocation of consent will apply prospectively only, and will have no effect on disclosures already made with the client’s consent. If a client returns a revocation form indicating revocation of consent to share and refer, no further disclosures of the client’s information may be made. If a client lists only specific entities to which disclosures may not be made, no disclosures may be made to such entities. Any revocation form received must be saved in the client’s file.

Because revocation applies only prospectively, the Informed Consent Revocation Form does not provide the option of revoking consent to capture.

Unless consent is revoked by the client, there is no need to take any actions in the Client Data System to remove consent or to set consent to “expire” within the system. Informed Consent provided by a client shall be considered valid unless and until revoked.

Additional Guidance

Except where specifically indicated in this PI, all guidance regarding informed consent provided by NYSOFA since August 5, 2015 and as of the date of issuance of this PI, through formal issuance or otherwise remains valid, and the rules and processes to be followed relating to informed consent are generally unchanged. The following is a list of formal issuances related to informed consent made by NYSOFA as of the date of issuance of this Program Instruction, along with a description of each:

• 17-PI-02 (Revised #1): Informed Consent: Questions and Responses– Provides answers and clarifications to frequently asked questionsrelated to informed consent.

• 17-PI-03: Disclosures of Personal Information Involving Health and Safety of an Individual – Identifies instances in which disclosures may be made without informed consent when an individual may be in danger.

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• 17-PI-08: Obtaining Informed Consent – Discusses the elementsrequired for informed consent and provides guidance in meeting each ofthese elements.

• 17-TAM-01: Verifying Legal Authority to Provide Consent or Enroll inServices on Another's Behalf – Provides basic guidance on what to lookfor when reviewing legal documentation authorizing an individual to act onbehalf of another.

ATTACHMENTS:

• Informed Consent Form (Aging Services)

• Informed Consent Form (NY Connects)

• Informed Consent Follow-Up Letter/In-Person Notice (Aging Services)

• Informed Consent Follow-Up Letter/In-Person Notice (NY Connects

• Informed Consent Revocation Form

PROGRAMS AFFECTED: Title III-B Title III-C-1 Title III-C-2

Title III-D Title III-E CSE WIN Energy

EISEP NSIP Title V HIICAP LTCOP

NY Connects: Choices for Long Term Care

Other

CONTACT PERSON:

Inquiries should be sent via email to Laurie Pferr and Curtis Fredericks, with Jennifer Rosenbaum cc’d.

Laurie Pferr (518) 474-2855 Email: Laurie.Pferr@aging.ny.gov

Curtis Fredericks (518) 474-0356 Email: Curtis.Fredericks@aging.ny.gov

Jennifer Rosenbaum (518) 473-4936 Email: Jennifer.Rosenbaum@aging.ny.gov

Informed Consent Form (Aging Services)

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Informed Consent to Share Certain Information in the event of a Disaster or Emergency

In the event of a disaster or emergency, I consent to the release of information about services I receive, my housing situation and who I live with, medical equipment or services needed daily, prescription medications taken daily, special dietary needs, special communication needs, blindness or other visual impairments, and information about my general condition and mobility.

I understand that this information will only be given to those who will use it to respond to an emergency, such as government agencies, law enforcement, or those acting on their behalf if there is a disaster or emergency situation.

I understand that information used or disclosed pursuant to this authorization may be re-disclosed by the recipient and in such an event may no longer be protected by federal or state law.

Client Initial _______

I consent to actions above where I have initialed. The authorizations provided shall not expire unless revoked.

_____________________________________________ _____________________ Signature of individual or legal representative Date

_____________________________________________ Individual’s name (Print)

_____________________________________________ If legal representative, provide name and relationship to individual

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ FOR OFFICE USE ONLY ~ ~ ~ ~ ~ ~ ~ ~ ~ ~~ ~ ~ ~ ~ ~ ~ ~ ~

ATTESTATION To be completed by worker

I attest that informed consent, as indicated, was obtained from the above individual, who provided his/her signature above. All appropriate processes were followed, and consent was provided voluntarily.

_____________________________ _____________________ Signature Date

_____________________________ Print

Informed Consent Form (NY Connects)

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Informed Consent to Share Certain Information in the event of a Disaster or Emergency

In the event of a disaster or emergency, I consent to the release of information about services I receive, my housing situation and who I live with, medical equipment or services needed daily, prescription medications taken daily, special dietary needs, special communication needs, blindness or other visual impairments, and information about my general condition and mobility.

I understand that this information will only be given to those who will use it to respond to an emergency, such as government agencies, law enforcement, or those acting on their behalf if there is a disaster or emergency situation.

I understand that information used or disclosed pursuant to this authorization may be re-disclosed by the recipient and in such an event may no longer be protected by federal or state law.

Client Initial _______

I consent to actions above where I have initialed. The authorizations provided shall not expire unless revoked. _____________________________________________ _____________________ Signature of individual or legal representative Date _____________________________________________ Individual’s name (Print) _____________________________________________ If legal representative, provide name and relationship to individual

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ FOR OFFICE USE ONLY ~ ~ ~ ~ ~ ~ ~ ~ ~ ~~ ~ ~ ~ ~ ~ ~ ~ ~ ATTESTATION To be completed by worker

I attest that informed consent, as indicated, was obtained from the above individual, who provided his/her signature above. All appropriate processes were followed, and consent was provided voluntarily.

_____________________________ _____________________ Signature Date _____________________________ Print

Informed Consent Follow-Up Letter/In-Person Notice (Aging Services)

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Dear Sir/Madam, You are being provided with this letter because you have given permission for your information to be stored in the Client Data System (“Data System”) maintained by the New York State Office for the Aging. The Office for the Aging and its local partners provide many services throughout New York State. Saving your information in the Data System helps to provide services and to make referrals between service providers. We will only save the information you provide to us. Any personal information saved in the Data System is confidential and is stored in accordance with all applicable federal and state laws. Unless you give us permission, we cannot share your information with others. Before making any referral, we will contact you. We will provide information about the service provider or government agency and the service. You will decide if you would like a referral to be made. If you do not, no referral will be made and no other agencies or providers will be able to see your information. If you consent to a referral being made to another provider, we will only share information with that specific provider. It is important that you understand how your information is saved, why we need the information, and that it won’t be shared with another organization without your permission. If you have questions about the Data System, you may contact the New York State Office for the Aging’s Privacy Officer. You can write to the Privacy Officer at New York State Office for the Aging, Agency Building 2, Empire State Plaza, Albany, NY 12223, or call (518) 474-0388. All other questions should be directed to the local agency as instructed on Page 2. As we discussed, you may change your mind about sharing your information. If you do cancel your consent, any action already taken with your consent cannot be

Informed Consent Follow-Up Letter/In-Person Notice (Aging Services)

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undone. Cancelling consent will only prevent future sharing of your information. If you cancel your consent to share and make referrals, we will no longer refer or share your information. However, it is important to inform you that cancelling consent may limit how we can assist you. If you only gave us permission to collect and record your information but not to share it with other agencies, we will not share it, and no action is needed. You do not need to do anything with this letter unless you have changed your mind about working with us as we have already discussed. If you agreed to sharing your information for a referral or releasing certain information if there is a disaster or emergency, and if you have changed your mind about this, you must complete a form that has been specifically designed for that purpose (it is called the Informed Consent Revocation Form) and simply discontinues our permission to share your information. The form will be sent to you upon request. If you wish to receive an Informed Consent Revocation Form, or if you have any questions, please call:

Informed Consent Follow-Up Letter/In-Person Notice (NY Connects)

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Dear Sir/Madam, You are being provided with this letter because you have given permission for your information to be stored in the Client Data System maintained by the New York State Office for the Aging and used for NY Connects. NY Connects is an Aging and Disability Resource Center which is provided by the State Office for the Aging and the Department of Health through its local partners. NY Connects identifies needs, provides information and assistance, and acts as a link to many programs and services that help people remain independent. The Client Data System allows other local partners to see your information if a referral is made, but this will only happen with your permission. We will only save the information you provide to us. Any personal information saved in the Client Data System is confidential and is stored in accordance with all applicable federal and state laws. Unless you give us permission, we will not share your information with others. Before making any referral, we will contact you. We will provide information about the service provider or governmental agency and the service. You will decide if you would like a referral to be made. If you do not, no referral will be made and no other agencies or providers will be able to see your information. If you have consented to a referral being made to another provider, we will only share information with that specific provider. It is important that you understand how your information is saved, why we need the information, and that it won’t be shared with another organization without your permission. If you have questions about the Client Data System, you may contact the New York State Office for the Aging’s Privacy Officer. You can write to the Privacy Officer at New York State Office for the Aging, Agency Building 2, Empire State Plaza, Albany, NY 12223, or call (518) 474-0388. All other questions should be directed to the local agency as instructed on Page 2.

Informed Consent Follow-Up Letter/In-Person Notice (NY Connects)

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As we discussed, you may change your mind about sharing your information. If you do cancel your consent, any action already taken with your consent cannot be undone. Cancelling consent will only prevent future sharing of your information. If you cancel your consent to share and make referrals, we will no longer refer or share your information. However, it is important to inform you that cancelling consent may limit how we can assist you. If you only gave us permission to collect and record your information but not to share it with other agencies, we will not share it, and no action is needed. You do not need to do anything with this letter unless you have changed your mind about working with us as we have already discussed. If you agreed to sharing your information for a referral or releasing certain information if there is a disaster or emergency, and if you have changed your mind about this, you must complete a form that has been specifically designed for that purpose (it is called the Informed Consent Revocation Form) and simply discontinues our permission to share your information. The form will be sent to you upon request. If you wish to receive an Informed Consent Revocation Form, or if you have any questions, please call:

Informed Consent Revocation Form (Aging Services and NY Connects)

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Informed Consent Revocation This form is being provided based upon your request. It may be used to revoke your consent to share your information and make referrals on your behalf. If you revoke this consent, no further disclosures of your information will be made following the effective date, which is the date this completed form is received by our agency. Revoking consent will have no effect on disclosures previously made with your consent.

To revoke consent to share any of your information which is contained in the Client Data System maintained by the New York State Office for the Aging check the first box on the form that follows on Page 2 and complete all items requested. If you wish only to revoke your consent to share information with certain entities, check the second box below and use the space provided to list those specific entities. To revoke your consent to release your information other than basic contact information in the event of a disaster or emergency to those responding, check the third box.

If this form is being completed on behalf of the person whose information is stored by his or her legally authorized representative, please indicate this in the space provided. All fields should be completed using the contact information on file for the individual whose information is stored. Revocation of consent by a legal representative will only be effective if legal authority has been verified by our agency. Once completed, please mail this form to our agency at the address below. If you have any questions or concerns, please feel free to contact us at the telephone number provided. Address:

Telephone:

Informed Consent Revocation Form (Aging Services and NY Connects)

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I hereby revoke my consent to share or disclose any of my personal information that is stored in the Client Data System, including for purposes of making referrals. I understand that this will have no effect on disclosures made before the effective date of this revocation. I hereby revoke my consent to share or disclose my personal information with the following entities:

I hereby revoke my consent to disclose any of my personal information regarding special risk factors for purposes of responding to a disaster or emergency.

Is this form being completed and signed on behalf of a client by his or her legally authorized representative? Please circle:

YES / NO If yes, complete the following (please print):

Name of Legal Representative

( ) Telephone Number

Address (Street, Town, State, Zip)

The remainder of this form, including the signature line, must also be completed.

CLIENT INFORMATION

Client Name (print):

Address:

Telephone Number: ( )

Signature Date Name (Print)