HMIS Consent for Unaccompanied Youth (Minors)
In today's A Way Home webinar on Data Management & Measuring Progress, a question was raised re: the ability of an agency to collect and input data into HMIS, and then share this information with other agencies as appropriate from unaccompanied minors. The key issue raised being that without parental/guardian consent, such collection and disclosure would not be possible.
I promised to look into this further and here is some guidance from other communities:
1. When in doubt, apply existing agency policy on consent for information sharing. Your agency has (or should have) a policy in place already. You likely have practices on how to handle this issue through your ROI (Release of Information forms) as required of you by funders.
2. Age is important, but so is capacity to consent. Note that for instance medical treatment (including mental health) has no set legal age in place in most of Canada (exceptions being Quebec (age 14) and New Brunswick (16)). This is the result of lawmakers recognizing the diversity in youth's capacity to understand what they're providing consent for and the implications thereof. Here is an overview of this issue: https://www.theglobeandmail.com/life/the-tricky-issue-of-consent-in-adolescent-mental-health-care/article24569021/
3. Age requirements vary per context. Importantly, various jurisdictions apply ages for consent differently depending on context. From a great article on ethics and youth: "In Ontario statutes, ages for consent are associated with specific activities that may pose serious risks and benefits to youth when they consent and throughout their lives. For example, youth can legally give consent at 16 years for health-related services (e.g., counselling) but at 12 to 15 years if the service provider discusses involving the parent as soon as possible after service commences (Child and Family Services Act, 1990); 18 years for marriage without parental consent or 16 years with parental consent (Marriage Act, 1990); 19 years for consumption of alcohol (Liquor License Act, 1990); and 16 years for driving a vehicle (Highway Traffic Act, 1990)". This is why it's so important to examine a youth’s capacity to rationally consider information, including risks and benefits, and provide consent.https://evaluationcanada.ca/system/files/cjpe-entries/28-2-065.pdf
5. Privacy goes both ways. We often look at this privacy issues from a risk management perspective vis-à-vis parents/guardians and the agency collecting data. Note however, that in some instances requiring parental consent may actually violate a youth’s privacy rights - and may impact their access to essential supports (i.e. in cases of abuse, neglect, etc.) .
Having said all that: what do we do when we can't get consent from a Guardian (including child services) or the parent of the youth we are trying to serve using HMIS?
Agency staff defer to agency’s policy with regards to the collection of client information for under 18: how do you currently collect information on paper and fax it as appropriate to other agencies? The same rules apply using HMIS electronically. You should always seek out guardian consent for under 18s (or 19s in BC etc.).Though there may be difficulty getting consent and some parents initially refuse, agencies usually manage to work it out. Parental consent should be documented if given verbally over the phone, and followed up to confirm via email until papers are signed.
As long as youth are informed and agree , their case manager could provide consent. This can be noted in the ROI form and in the HMIS' ROI module (it would show the 'assent' of the youth, and the case manager's consent with rationale). Legal advice should be sought in cases where you defer from agency policy however.
You don't ask youth to provide personally identifiable information from the youth in HMIS - see below:
"I do NOT consent to the inclusion of personally identifying information about me and my dependents(listed below) for use in HMIS. Personally identifying information includes name, SIN number, date of birth, demographics, and last and future permanent addresses. Non-identifying information will still be collected and shared only as needed and required by funders." See this consent form as an example: https://www.co.pierce.wa.us/DocumentCenter/View/44974
Of course this limits your capacity to leverage HMIS fully, but is a an option to still track some data.
Would love to hear how others are dealing with this!
Dr. Alina Turner - Turner Strategies, firstname.lastname@example.org
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- July 12, 2017
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