“The Department of Health and Human Services? Or the Department of Illness and Death?”

Graph PaperSeveral LGBTQ organizations are condemning the U.S. Department of Health and Human Services’ (HHS’) plan to delay the collection of foster care and adoption data that was required by a 2016 rule, including data related to sexual orientation and gender identity.

The two-year delay, which is expected to be published in the Federal Register today, relates to the collection of voluntary data on the sexual orientation of foster children and foster and adoptive parents/guardians, as well as to required documentation on whether the removal of a child from a home is due to a “family conflict related to the child’s sexual orientation, gender identity or gender expression.” It would also delay the collection of other health and educational information, information on guardians and guardian subsidies, and data related to the Indian Child Welfare Act, according to a statement released yesterday by Family Equality Council, PFLAG National, and Voice for Adoption.

States have already spent 14 months preparing to update their foster care and adoption data-collection systems in time for the 2019 deadline, the organizations note. They add that HHS has not updated the Adoption and Foster Care Analysis and Reporting System (AFCARS) since 1993, despite two statutes requiring additional data elements, and a lack of data to measure progress on implementing the Indian Child Welfare Act. HHS collected comments from states, tribes, and the public on improvements to AFCARS in 2008, 2010, 2015, and 2016.

More worrying, perhaps, is that in addition to the delay, HHS says it will reopen the 2016 rule to further comments. HHS tried last year to remove questions on sexual orientation and gender identity from key federal surveys on elders and people with disabilities. It has removed mention of marginalized groups, including LGBTQ people, from its strategic plan. And its new “Conscience and Religious Freedom Division” has been widely seen as a platform for discriminating against LGBTQ people and others.

Much as we have deep reasons to believe that the current administration is delaying because of anti-LGBTQ intent, it seems there are other, long-standing problems at work here, too, which have delayed improvements to adoption and foster care data collection overall. The new delay exacerbates the problem, while also highlighting the anti-LGBTQ bent of the current HHS administration. And while “data collection” may seem clinical and impersonal, it can have a very real-life affect on children. As Schylar Baber, executive director of Voice for Adoption, explained in a press statement:

We believe that states and the federal government can benefit from collecting and analyzing data on health, behavioral or mental health conditions; prior adoptions; sibling placements; environment at removal and child and family circumstances at removal; foster family home type and other living arrangements; and location of living arrangements. By collecting data on these key areas, we can determine if certain states are succeeding in ensuring safety, permanency, and well-being for children and how their successes can be replicated in other communities. Although we know that data collection has significant costs, the costs of not knowing what is happening in our child welfare systems is far greater.

The Rev. Stan J. Sloan, CEO of Family Equality Council, added:

HHS-funded research has shown that lesbian, gay, bisexual, transgender, and queer (LGBTQ) youth, who comprise 19 percent of foster youth over 12, suffer unacceptably high rates of mistreatment, hospitalizations, placements in group homes (instead of with loving families), serial placements, and homelessness. Providing LGBTQ competent, supportive care will save the lives of youth that current systems fail to protect, and will reduce the costs of multiple placements, hospitalizations, and group home assignments that result from a shortage of placement opportunities with stable, supportive families. Years of public comment periods by HHS have shown that new data collection is needed to drive and measure the improved outcomes needed for youth, including LGBTQ and tribal youth, that have too often been poorly served by our foster care system.”

 Is this the Department of Health and Human Services? Or the Department of Illness and Death? It’s hard to tell these days.

“So much life-saving data about people affected by adoption and foster care is gathered only in AFCARS, year after year,” notes Dr. Jaime M. Grant, executive director of PFLAG National. She pulls no punches in asking, “What could possibly be the motivation for DELAYING for years the simple act of collecting data that can deliver improved family well-being outcomes for our LGBTQ children and prospective parents? Is this the Department of Health and Human Services? Or the Department of Illness and Death? It’s hard to tell these days.”

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