Privacy Policy

At the Down Syndrome Resource Foundation (DSRF), we are committed to providing our clients, participants, volunteers, and donors with exceptional service.  As providing this service involves the collection, use and disclosure of some personal information about our clients, participants, volunteers, and donors, protecting their personal information is one of our highest priorities.

While we have always respected privacy and safeguarded personal information, we strengthened our commitment to protecting personal information as a result of British Columbia’s Personal Information Protection Act (PIPA).  PIPA, which came into effect on January 1, 2004, sets out the ground rules for how B.C. businesses and not-for-profit organizations may collect, use, and disclose personal information.

We will inform our clients, participants, volunteers, and donors of why and how we collect, use, and disclose their personal information, obtain their consent where required, and only handle their personal information in a manner that a reasonable person would consider appropriate in the circumstances.

This Personal Information Protection Policy, in compliance with PIPA, outlines the principles and practices we will follow in protecting client, participant, volunteer, donor and employee personal information.  Our privacy commitment includes ensuring the accuracy, confidentiality, and security of our client’s, participant’s, volunteer’s, and donor’s personal information and allowing them to request access to, and correction of, their personal information.

Scope of this Policy 

This Personal Information Protection Policy applies to DSRF. This policy also applies to any service providers collecting, using, or disclosing personal information on behalf of DSRF.

Definitions

Personal Information –means information about an identifiable individual

Personal information includes information that relates to their personal characteristics (e.g., gender, age, income, home address or phone number, ethnic background, family status), their health (e.g., health history, health conditions, health services received by them) or their activities and views (e.g., religion, politics, opinions expressed by an individual, an opinion or evaluation of an individual). Personal information, however, does not include contact information.

Contact information – means information that would enable an individual to be contacted at a place of business and includes name, position name or title, business telephone number, business address, business email or business fax number.  Contact information is not covered by this policy or PIPA.

Privacy Officer – means the individual designated responsibility for ensuring that DSRF complies with this policy and PIPA.

Policy 1 – Collecting Personal Information

1.1 Unless the purposes for collecting personal information are obvious and the client, participant, volunteer, and donor voluntarily provides his or her personal information for those purposes, we will communicate the purposes for which personal information is being collected, either orally or in writing, before or at the time of collection.

1.2 We will only collect client, participant, volunteer, and donor information that is necessary to fulfill the following purposes:

• To enrol in and provide requested programs and services.
• To open and manage a client account.
• To collect and process payments.
• To communicate and report about enrolment, membership, programs, events, and activities.
• To determine eligibility, age group and appropriate level of participation.
• To implement criminal record screening program.
• To use case of medical emergency.
• To determine demographic structure, and program wants and needs.
• To contact individuals for fundraising purposes.
• To send out Society membership information.
• To provide insurance coverage, manage insurance claims and conduct insurance investigations.
• To meet regulatory requirements.
• To ensure a high standard of service to our clients, participants, donors, and employees.  

Policy 2 – Consent

2.1 We will obtain client, participant, volunteer, and donor consent to collect, use or disclose personal information (except where, as noted below, we are authorized to do so without consent).

2.2 Consent can be provided orally, in writing, electronically, through an authorized representative] or it can be implied where the purpose for collecting using or disclosing the personal information would be considered obvious and the client, participant, volunteer and donor voluntarily provides personal information for that purpose.

2.3 Consent may also be implied where a client, participant, volunteer, and donor are given notice and a reasonable opportunity to opt-out of his or her personal information being used for mail-outs, marketing and fundraising, and the client, participant, volunteer, and donor, does not opt-out.

2.4 Subject to certain exceptions (e.g., the personal information is necessary to provide the service or product, or the withdrawal of consent would frustrate the performance of a legal obligation), a client, participant, volunteer, and donor can withhold or withdraw their consent to use their personal information in certain ways.  A client, participant, volunteer, and donor decision to withhold or withdraw their consent to certain uses of personal information may restrict our ability to provide a particular service, product, or employment.  If so, we will explain the situation to assist the client, participant, volunteer, and donor in making the decision.

2.5 We may collect, use, or disclose personal information without client, participant, volunteer and donor knowledge or consent in the following limited circumstances:

• When the collection, use or disclosure of personal information is permitted or required by law.
• In an emergency that threatens an individual’s life, health, or personal security.
• When the personal information is available from a public source (e.g., a telephone directory).
• When we require legal advice from a lawyer.
• For the purposes of collecting a debt.
• To protect ourselves from fraud.
• To investigate an anticipated breach of an agreement or a contravention of law

Policy 3 – Using and Disclosing Personal Information

3.1 We will only use or disclose client, participant, volunteer, and donor personal information where necessary to fulfill the purposes identified at the time of collection or for a purpose reasonably related to those purposes such as:

• Fulfillment of client, participant, volunteer, and donor reporting requirements for provincial and/or federal governments.
• To conduct member, client, participant, volunteer, and donor surveys in order to enhance the provision of our services.
• To contact a client, participant, volunteer, and donor directly about services or products that may be of interest.

3.2 We will not use or disclose client, participant, volunteer, and donor personal information for any additional purpose unless we obtain consent to do so.

3.3 We will not sell client, participant, volunteer and donor lists or personal information to other parties.

Policy 4 – Retaining Personal Information

4.1 If we use client, participant, volunteer, and donor personal information to make a decision that directly affects the client, participant, volunteer, donor, and employee, we will retain that personal information for at least one year so that the client, participant, volunteer, and donor has a reasonable opportunity to request access to it.

4.2 Subject to policy 4.1, we will retain client, participant, volunteer, and donor personal information only as long as necessary to fulfill the identified purposes or a legal or business purpose.

Policy 5 – Ensuring Accuracy of Personal Information

5.1 We will make reasonable efforts to ensure that client, participant, volunteer, and donor personal information is accurate and complete where it may be used to make a decision about the client, participant, volunteer, donor, and employee or disclosed to another organization.

5.2 Clients, participants, volunteers, and donors may request correction to their personal information in order to ensure its accuracy and completeness.  A request to correct personal information must be made in writing and provide sufficient detail to identify the personal information and the correction being sought. A request to correct personal information should be forwarded to the DSRF Privacy Officer

5.3 If the personal information is demonstrated to be inaccurate or incomplete, we will correct the information as required and send the corrected information to any organization to which we disclosed the personal information in the previous year.  If the correction is not made, we will note the Clients, participants, volunteers and donors correction request in the file.

Policy 6 – Securing Personal Information

6.1 We are committed to ensuring the security of client, participant, volunteer, and donor personal information in order to protect it from unauthorized access, collection, use, disclosure, copying, modification or disposal or similar risks.

6.2 The following security measures will be followed to ensure that client, participant, volunteer, and donor personal information is appropriately protected:

Methods of protection and safeguards include, but are not limited to, locked filing cabinets, restricted access to offices, need-to-know access and technological measures including the use of passwords, encryption, and firewalls.

The following steps will be taken to ensure security:

a) Paper information is either under supervision or secured in a locked or restricted area.

b) Electronic hardware is either under supervision or secured in a locked or restricted area at all times. In addition, passwords are used on computers.

c) Paper information is transmitted through sealed, addressed envelopes or in boxes by reputable courier/delivery companies.

d) Electronic information is transmitted either through a direct line or is encrypted.

e) Staff is trained to collect, use, and disclose personal information only as necessary to fulfill their duties and in accordance with this policy.

f) External consultants and agencies with access to personal information will provide Down Syndrome Resource Foundation with appropriate privacy assurances

6.3 We will use appropriate security measures when destroying client, participant, volunteer, and donor personal information such asshredding documents, deleting electronically stored information.

6.4 We will continually review and update our security policies and controls as technology changes to ensure ongoing personal information security.

Policy 7 – Providing Client, Participant, Volunteer and Donor Access to Personal Information

7.1 Clients, participants, volunteers, and donors have a right to access their personal information, subject to limited exceptions.

A full listing of the exceptions to access can be found in section 23 of PIPA.  Some examples include solicitor-client privilege, disclosure would reveal personal information about another individual, health and safety concerns.

7.2 A request to access personal information must be made in writing and provide sufficient detail to identify the personal information being sought.  A request to access personal information should be forwarded to the Privacy Officer

7.3 Upon request, we will also tell clients, participants, volunteers, and donors how we use their personal information and to whom it has been disclosed if applicable.

7.4 We will make the requested information available within 30 business days or provide written notice of an extension where additional time is required to fulfill the request.

7.5 A minimal fee may be charged for providing access to personal information.  Where a fee may apply, we will inform the member, client or customer of the cost and request further direction from the client, participants volunteer and donor on whether or not we should proceed with the request.

7.6 If a request is refused in full or in part, we will notify the member in writing, providing the reasons for refusal and the recourse available to the member.

Policy 8 – Questions and Complaints:  The Role of the Privacy Officer or designated individual

8.1 The Privacy Officer is responsible for ensuring DSRF compliance with this policy and the Personal Information Protection Act. The DSRF Privacy Officer is the organization’s Chief Executive Officer.

8.2 Members, clients and customers should direct any complaints, concerns or questions regarding DSRF compliance in writing to the Privacy Officer. If the Privacy Officer is unable to resolve the concern, the member, client, or customer may also write to the Information and Privacy Commissioner of British Columbia.

Contact information for the DSRF Privacy Officer is:

Chief Executive Officer
Down Syndrome Resource Foundation
1409 Sperling Avenue
Burnaby, B.C. V5B 4J8