BEYOND STUPAK (II): Why The Language in the Nurse Home Visitation Provision in Health Care Legislation Must be Fixed
by
Gwendolyn Mink and Dorothy Roberts
January 11, 2010
As health care legislation enters its final stages, it appears that the federal government is poised to authorize Medicaid spending for an ambitious, mostly privately-run program that enters and touches the most intimate domains of poor women – without any explicitly stipulated protections of their rights.
Six weeks ago, we circulated a commentary about a provision in the House health care bill authorizing funds for nurse home visitation programs aimed at low-income pregnant women and mothers of young children (H.R. 3962, Section 1713). We were concerned that the provision is not aimed at providing health care. Instead, it pledges to advance goals that endanger the reproductive and family freedoms of low income women, conjures stereotypes of low income women of color, and implies that using available public services is a bad thing. The Senate bill contains a similar provision.
Our commentary focused on the statutory language of the House provision. We did not comment on any existing program, but rather drew attention to the legislative wording, which includes as stated goals an increase in birth intervals, a reduction in maternal and child criminal involvement, and a reduction in dependence on public assistance. Unfortunately, our criticism of the statutory language was misread by many program advocates, who concluded that we opposed nurse home visitation services per se (or their own programs in particular).
We received numerous responses to our commentary. Those who disagreed with us generally argued that the good intentions of the people who run current nurse home visitation programs make the statutory language irrelevant. Some defended the statutory language, saying that it was instrumentally necessary to secure support from a majority in Congress. Others pointed to language in the provision promising that programs will be “outcome based,” arguing that such a requirement guarantees that only “good” programs that “work” will be funded.
To answer the first point, we would draw your attention to the long and persistent history of government programs for poor women that linked the provision of services to the supervision and regulation of poor women’s fertility and family decisions. Some examples: home visitors who used poverty as an occasion to impose Americanizing domestic practices on immigrant women during the early 20th century; eugenicist birth control clinics of the 1920s and ‘30s; sterilization abuse by government-paid doctors well into the 1970s; ongoing child exclusion or “family cap” rules in welfare policy. Some of these policies are deliberately punitive and rights abusive. But even those programs that began with good intentions – such as providing health services to poor women – often have confused poor people’s access to services with government’s access to poor people, using services as a means to regulate the poor.
The argument that outcome-based criteria assures that only programs that “work” will be funded does not dispel the danger that programs will imperil family and reproductive autonomy and liberty. The goals enumerated in the statutory provision are race-coded social, cultural, and economic goals, which measure program success in aggregate sociological terms rather than in terms of the wellbeing of individuals. A program that “works” is one that is correlated with lower welfare participation, fewer births, and the like. Given these measures, what is to prevent a program from discouraging childbearing by clients who participate in public assistance programs? What is to prevent it from impeding participation in public assistance programs altogether? What checks are in place to prevent a program from encouraging use of risky contraceptives by poor women to increase birth intervals in poor families? Ends-means rationalizations are the start of the slippery slope of rights abuse and disregard for the personhood of poor women.
All of the dangers that we note here are rendered even more acute by the extreme delegation and devolution of authority implied by both the House and Senate provisions for nurse home visitation. The details of how program goals are to be measured are delegated to the Department of Health and Human Services and the selection of funded programs is delegated to the states. States, in turn, are expected to fund private programs. Unless protections for women and families are stipulated explicitly in the statutory provision, there is no guarantee that devolved programs will honor the rights and respect the autonomy of their clients. The good intentions of existing programs may protect low income women in the short term. But who knows what the intentions will be of new programs that arise to take advantage of federal funding? Who knows what the intentions will be of the various states in choosing which programs to encourage? Who knows what the intentions will be of an executive branch controlled by a different party?
It is imperative that a government-sponsored home visitation program for low-income women amply and explicitly protects program clients. Express stipulations to assure that participation is voluntary must be part of the statutory package, along with a guarantee that a decision to participate, or not to, cannot be made a condition of receiving other government assistance. The aim of nurse home visitation programs should be to provide medical and wellness services; neither the statutory language nor administrative regulations should permit or encourage monitoring the family and reproductive decisions of individuals, and neither should denigrate low-income mothers for using public assistance. We should do everything possible to ensure that these programs support the women they are intended to serve rather than using women to advance the interests of government.
To this end, we have developed a set of principles we think should guide revisions of the provision in the final version of health care reform legislation:
1) Define the responsibilities of the federal government and the
states and assure accountability of any nongovernmental grantees
regarding all safeguards and requirements listed below.
2) Explicitly enumerate safeguards for individuals and families,
including:
a) apply HIPAA standards to all interactions with home
visitors;
b) guarantee that program participation or non-participation
cannot be used as a condition or criterion for
participation in other government programs;
c) elaborate mechanisms to ensure that participation is
voluntary.
3) Restrict program goals, purposes, definition of needs, and
benchmarks to:
a) providing medical and wellness services;
b) facilitating linkage to appropriate non-medical/wellness
services if the participating family or a family member
seeks assistance for family or sexual violence;
c) facilitating linkage to appropriate education, income
assistance, or food programs if the participating family
or family member so requests.
4) Require home visiting personnel to demonstrate language and
cultural competence in the languages and cultures of the
communities/families visited.
5) Remove statutory language that could be read to support
monitoring/influencing a woman's fertility and family life.
6) Remove statutory language that denigrates low income mothers who
seek or use public assistance.
Gwendolyn Mink, Ph.D., an independent scholar, is co-editor of the two-volume Poverty in the United States: An Encyclopedia of History, Politics and Policy and author of Welfare's End and The Wages of Motherhood: Inequality in the Welfare State. She is on the board of the Institute for Public Accuracy and is coordinator and trustee of the Patsy Takemoto Mink Education Foundation for Low Income Women and Children. She can be contacted at wendymink@gmail.com
Dorothy Roberts, J.D., the Kirkland & Ellis Professor, Northwestern University Law School, is the author of Killing the Black Body: Race, Reproduction, and the Meaning of Liberty and of Shattered Bonds: The Color of Child Welfare. She serves on the boards of directors of Black Women's Health Imperative, National Coalition for Child Protection Reform, and Generations Ahead. She can be contacted at d-roberts@law.northwestern.edu.
