Home Visit Hearing Testimony 2.21.2019: Parent Consent on Data Input; Physician Predictive Diagnosis

social-worker-visiting-family-with-young-baby-1

Good morning, Chair Pinto and Committee Members,

My name is Linda Bell and I represent Minnesota Advocates & Champions for Children.

Home visiting in Minnesota has played a supportive role in helping women after the birth of their child. We are thankful to the visiting nurses for their good work in this area.

First, I’d like to thank the author for removing the 3 year requirement for home visits in the case of a new mother.  The length of visits should be a parental decision and not a government-forced mandate.

Though it is evident the bill is well-intentioned, we do have some concerns.

First, our organization has been working on data bills over the last 5 years and this has become an area of expertise.  So, in this case, expectant mothers, babies and toddlers and early childhood data is also an important issue to us!

Speaking of data collection, Help Me Grow, an interagency organization, working on behalf of the Department of Health and Education is a referral service for home visits working in tandem with the public schools.  Referrals are made directly to the Dept of Education website via the Help Me Grow data portal.  Following data input, the school district picks up the information making family contact.

Here’s the catch and our concern!  Parents may have no idea that their babies, toddlers or children have been referred.  Actually, parents may not even know or ever know that a data profile was created! Help Me Grow, openly encourages professionals to refer a child to the child’s local school district if they OR the CHILD’s PARENTS are concerned about any aspect of a child’s development, based on development milestones.   The following statement does not demonstrate mutual consultation.

Help Me Grow Professionals statement

*Help Me Grow website

In the end, data may have been entered into the system on the infant or toddler without ever offering parental notification and consent.   MACC would encourage transparency at all levels of the referral system and add a short opt-in statement for consent before personal information is collected and share This catch 22 of data collection is invasive, especially when we know data creates a profile which may be used against an individual, in this case profiling an infant or toddler.

Additionally, we know that the Minnesota K-12 SLEDS (State Longitudinals) has not been audited for over 14 or 15 years.  Here, I’m speaking of the 40+ 3rd party contracts that the Dept of Education, Office of High Learning and DEED (Dept of Labor) maintains on the SLEDS.

Although this data is “sanitized” data experts will tell us that this data can be easily reconstituted.  Since the SSID#s (State Student ID#) is also used for a student’s lunch code and other log-in procedures, it wouldn’t take a “rocket scientist” to hack into a school data warehouse or even our SLEDS.  Privacy is one thing and Data Security is another.   We need both!

Another organization, the Build Initiative, which helped implement the Race to the Top-Early Learning Challenge. Using it’s bully pulpit ideology, BUILD, also pushes home visits as part of a wrap around system for the family.  Essentially, part of the ideology at Build is to push doctors into predictive diagnosing.

Reading this statement, one must ask if this is equity?  Or is this exploitation?

BUILD Institute 2014 Report

*Young Children and Their Families: Social Determinants/Protective Factors and Early Childhood Mental Health (ECMH).  Charles Brunner.  BUILD Initiative and Child and Family Policy Center.  August 2014.

In the end, this bill is missing vital protections considering the home visitation landscape.  Although some organizations may be asking for consent (as the Visiting Nurse organization did state) others, are not giving consent or notification.  While on the other end, doctors are being highly encouraged to predictively diagnose babies 2, 3 years from the office visit.  MACC encourages the author to include a data opt-in and other protections stemming from the referral system which kicks off home visits.  Thank you.