Testimony of Robyn Powell, NCD Attorney Advisor, before the Massachusetts Joint Committee on the Judiciary on Rights of Parents with Disabilities
Testimony of Robyn Powell
Attorney Advisor, National Council on Disability
In Support of HB 1379, “An act prohibiting discrimination against adults with disabilities in family and juvenile court proceedings”
Joint Committee on the Judiciary
Massachusetts State Legislature
Probate – Estates & Trusts
Wednesday, April 9, 2014
Massachusetts State House, Room A-2
Senate Chair Brownsberger, Senate Vice Chair Candaras, House Vice Chair Markey, and Esteemed Members of the Massachusetts Joint Committee on the Judiciary:
Thank you for the honor and opportunity to testify before you today about Massachusetts House Bill 1379, which seeks to prohibit discrimination against parents with disabilities in family and juvenile court proceedings. My name is Robyn Powell. I am an Attorney Advisor at the National Council on Disability and the principal author of NCD’s 2012 comprehensive report titled Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote1) As a disabled woman, I also look forward to the day in which I will parent my own children, and so as a resident of Massachusetts, this topic and this bill are of professional as well as personal importance to me.
The National Council on Disability (NCD) is an independent federal agency that provides advice to the Administration, Congress, and other diverse stakeholders, including state policymakers, and thoughtful and timely analysis and recommendations to inform policy development, revision, and enforcement efforts. As a federal voice for 56 million Americans with disabilities, including parents with disabilities and their families, NCD is committed to advancing policy solutions that create a more inclusive country in which all Americans have equal opportunities to contribute to society.
The topic of the rights of parents with disabilities and their children came to the attention of NCD in early 2010 during a public comment period at one of NCD’s quarterly board meetings. The topic was raised by Kelly Buckland, Executive Director of the National Council on Independent Living, who is also a parent with a disability and was closely involved in securing passage of legislation protecting the rights of parents with disabilities in Idaho. The topic was again explored as a panel discussion at an NCD regional forum in Portland, Oregon, in 2011. Following that deeper investigation of the topic, NCD determined it was in the interests of the disability community to devote resources toward the exploration of the topic more fulsomely in the form of a comprehensive policy project. The fruits of those efforts culminated in the release of theRocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children report in September 2012, a groundbreaking policy study that provides an overview of the experiences of parents and prospective parents with disabilities in family law and dependency proceedings, adoption, and access to assistive reproductive technology.
NCD views HB 1379 as consistent with recommendations in its Rocking the Cradle report and therefore recommends the bill’s passage. In the pages that follow, I will provide a brief overview of relevant findings from our report that substantiate the need for legislation like HB 1379.
Prevalence of Parents with Disabilities in the United States and Their Children
There is an overwhelming lack of data collected on parents with disabilities in the U.S., including their prevalence. However from data that does exist, which likely sorely underestimates prevalence, we know that roughly 4.1 million parents with disabilities live in the U.S. today, or roughly 6.2 percent of all American parents with children under the age of 18.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote2) Within certain subgroups of the population, the prevalence rates are higher. 13.9 percent of American Indian / Alaska Native parents; 8.8 percent of African American parents; 6 percent of Caucasian parents; 5.5 percent of Latino / Hispanic parents; and 3.3 percent of Asian / Pacific Islander parents have a disability. When considering prevalence through the lens of children, existing data estimates at least 6.1 million children in the U.S. who have parents with disabilities, or approximately 9.1 percent of all children in the country.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote3) Additionally, it’s also important to remember that when discussing “parents with disabilities,” the term also includes those who may not readily identify themselves as having a disability, such as a deaf parent, a parent of short stature, or a parent with diabetes.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote4)
Millions of parents throughout the U.S. have disabilities, and this number is likely to grow as people with disabilities become increasingly independent and integrated into their communities. Notably, there has been a dramatic increase in the number of veterans who are returning from war with service-connected disabilities, some of whom may already be parents and others who will become parents after acquiring their disability. Likewise, this group includes many of the Boston Marathon survivors who acquired disabilities, such as Jeff Bauman who will soon become a father.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote5)
History of Discrimination
A history of discrimination justifies civil rights protections of discrete minority groups, and societal and legislative actions regarding parenting aimed toward people with disabilities is rife with historical justification for a bill such as HB 1379.
At the start of the 20th century, a proto-scientific movement known as “eugenics” created a sociopolitical climate in which people with disabilities were viewed with disdain as compromising the integrity of the human gene pool. It was during this sociopolitical climate that more than 30 states passed legislation that authorized the involuntary sterilization of tens of thousands of people with disabilities, premised on the notion that people with disabilities were “socially inadequate” and burdensome to society. Unlike many other states across the country, efforts to legislate involuntary sterilization in Massachusetts never did pass into law; however, many of the nation’s lead eugenicists who shaped nationwide eugenical policies were tied to Harvard University.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote6)
In 1927, the U.S. Supreme Court ratified the bigotry. In his infamous decision, upholding the constitutionality of Virginia’s law requiring the involuntary sterilization of people with disabilities, Justice Oliver Wendell Holmes, Jr. wrote, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind… Three generations of imbeciles are enough.”[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote7) Shamefully, this Supreme Court decision to this day has yet to be overruled, and by 1970, more than 65,000 Americans had been involuntarily sterilized. Even today, as we near the 25th anniversary of the Americans with Disabilities Act (ADA), several states still retain a form of involuntary sterilization law in their state codes; and others are considering legislative remedies for their states’ surviving victims.
Although the American eugenics movement is little-taught history, many of the same fears, myths, and stereotypes about disability continue to color the experiences of parents with disabilities in the U.S. even today.
Parents with Disabilities and the Child Welfare System
NCD’s research reveals that bias pervades the child welfare system in the state courts, child welfare agencies, and state legislatures against parents with disabilities and their families. In fact, parents with disabilities are the only community of Americans who must struggle to retain custody of their children based solely on an immutable characteristic.
Much of the bias is sourced in many of the persistent fears, myths, and stereotypes that continue to confront people with disabilities as attitudinal barriers to equality much as they did in decades past. The disparities may begin with an initial anonymous report of suspected abuse or neglect, usually made to the police or Child Protective Services (CPS). Often these reports are unsubstantiated or are based on little more than one’s own misunderstanding or underestimation of a parent with a disability. However well-intended, such calls can lead to calamitous results and lengthy separations of children from their parents for unjustifiable reasons, based solely because of a parent’s disability status and how that status is perceived by the child welfare system.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote8)
In addition to attitudinal barriers, parents with disabilities often face an array of unadapted services and a lack of accommodations throughout interactions with the child welfare system, which can stymie or outright prevent timely response to deadline-driven, high-stakes parental right termination proceedings. Pursuant to the Adoption and Safe Families Act (ASFA), states must make “reasonable efforts” to preserve a family before they remove a child and place him or her in an out-of-home placement and to reunify a family if a child has already been removed. However, “reasonable efforts” are not defined in either law or in regulation and have been interpreted in a variety of ways by states and courts. Oftentimes, it is parents with disabilities who bear the disproportionate brunt of the vagueness of this term, particularly because ASFA also gives states flexibility in determining circumstances in which undefined “reasonable efforts” are not required.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote9) Research shows that states often include disability as a key reason to deny families the state’s “reasonable efforts.” And according to law professor Kathleen S. Bean of Brandeis School of Law, University of Louisville, “The impact on the health and safety of children when reunification efforts are not required can be tremendous. It ends the state’s responsibility to provide services; it ends the duty to facilitate and encourage visitation; and it almost inevitably places the parent just steps away from termination of parental rights. Without reasonable efforts, the opportunity to address the problems that contributed to the child’s removal and to work toward reunification to avoid the damage from disrupting the parent-child relationship is remote.”[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote10) It is not surprising, then, that parents with disabilities experience dismal outcomes when interfacing with the child welfare system.
In one recent study, data found that parents with disabilities were more than twice as likely to have child welfare involvement than those without disabilities and more than three times more likely to experience a termination of parental rights than those without disabilities.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote11) Studies regarding removal rates of children from parents with disabilities have long suggested a significant over-involvement of these families within the child welfare system:
- Removal rates where parents have a psychiatric disability have been recorded as high as 70 to 80 percent;[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote12)
- Removal rates where parents have an intellectual disability have been recorded between 40 and 80 percent;[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote13)
- Removal rates and loss of parental rights are also recorded as extremely high in instances in which parents have sensory disabilities (deafness, blindness);[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote14)
Making matters worse, as recently as 2010, a study revealed that 37 states still include disability as grounds for terminating parental rights, often relying upon antiquated and offensive terminology, nebulous definitions of disability, and placing emphasis on a parent’s diagnosis or condition rather than on their actions and behaviors as parents[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote15) – entirely at odds with “equality of opportunity,” one of the core policy aims of the Americans with Disabilities Act.
Parents with Disabilities and the Family Law System
More than half of American families will experience legal separation or divorce.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote16) However, in addition to the unpleasantness of these proceedings generally, which include child custody disputes, parents with disabilities often encounter myriad forms of discrimination that typically color the outcome in favor of the non-disabled parent – without a preponderance of evidence (sometimes without any evidence) that there is a link between the parent’s disability and purported harm to the child, or that the purported harm cannot be mitigated by adaptive equipment, support services, or disability accommodations.
Although there is a dearth of statistical data in the area of family law proceedings, in NCD’s Rocking the Cradle report, we chronicled numerous stories of families’ experiences within the family court system, powerfully capturing the pervasive social stereotypes and prejudicial assumptions that frequently bias outcomes against parents with disabilities.
Family courts utilize the “best interest of the child” standard to determine custody and visitation matters. Most states have developed their own list of factors to determine this standard, but the best interest analysis always allows for a parent’s own “health” to be considered.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote17) Despite the seeming sense of such a consideration, too often, a parent’s disability is indiscriminately classed a “health concern” as a discredit to the parent’s ability to provide for the best interests of a child. Therefore, because of considerable attitudinal prejudice regarding disability, the mere presence of disability is often assigned as a mark against that parent’s provision for the child – this despite the social model of disability underpinning civil rights laws, which states that “disability is a natural part of the human experience that does not diminish the right of individuals with …disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote18) The prevalence of this type of bias and lack of cultural competence is seen throughout unpublished court documents and evaluations through use of phrases such as ‘afflicted,’ ‘wheelchair bound,’ ‘suffering’ from a particular disability, and the like.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote19) Such cases frequently reflect underlying presumptions that it is not in a child’s best interest to live with – or in some cases even visit – a parent with a disability.[](https://www.ncd.gov/newsroom/Testimony/04092014#endnote20)
NCD supports the intent of HB 1379 and urges the Massachusetts legislature to swiftly pass this bill and Governor Patrick to sign it into law. Moreover, NCD encourages the legislature to pass legislation ensuring the rights of prospective parents with disabilities to access adoption and assistive reproductive technologies, as well, in accordance with the model legislation in the Rocking the Cradle report.
Given the substantial research that demonstrates the disparate treatment parents with disabilities experience in both the child welfare and family law systems, we likewise urge the Massachusetts legislature to provide ongoing oversight of these policy areas to ensure the rights of parents with disabilities and their families. We respectfully suggest the Massachusetts legislature do this by seeking out parents’ first-hand experiences to inform oversight and ongoing policy development, and we recommend committing to meaningful enforcement of existing laws and safeguards, as well.
The National Council on Disability stands ready to be of additional service to the Committee or the state legislature as needed on this or any other topic implicating the rights of people with disabilities.
Thank you for the opportunity to provide this written testimony.
 National Council on Disability, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,September 2012, /publications/2012/Sep272012/.
 Stephen H. Kaye, Population Estimates and Demographics of Parents with Disabilities in the United States (Berkeley, CA: Through the Looking Glass, 2011).
 Stephen H. Kaye, Unpublished Tabulations from the 2008 and 2009 American Community Survey (Berkeley, CA: Through the Looking Glass, 2012).
 Paul Preston, “Parents with Disabilities,” International Encyclopedia of Rehabilitation, edited by J.H. Stone and M. Blouin (2011), http://cirrie.buffalo.edu/encyclopedia/en/article/36/
 Michelle R. Smith, Associated Press, “Man who Lost his Legs in Boston Bombing is Engaged,” March 23, 2014,http://www.boston.com/news/local/massachusetts/2014/03/23/man-who-lost-his-legs-boston-bombing-engaged/dg6ZZVwQp6AyqY5OiiICLK/story.html.
 Reid Grinspoon, “’The Burden of Feeble-Mindedness:’The History of Eugenics and Sterilization in Massachusetts,” New England Journal of History 70(1) (2013).
 Buck v. Bell, 274 U.S. 200 (1927), at 208.
 Ella Callow, “Maintaining Families When Parents have Disabilities,” ABA Child Law Practice 28(9) (2009): 134.
 42 U.S.C. § 671(a)(15)(A), 42 U.S.C. § 671(a)(15)(D)(i), 65 Fed. Reg. 4060 (Jan. 25, 2000).
 Kathleen S. Bean, “Aggravated Circumstances, Reasonable Efforts, and ASFA,” Boston College Third World Law Journal 29 (2009): 226 (internal citations omitted).
 S. Singh, et al., “Parental Disability and Termination of Parental Rights in Child Welfare, Minn-LInK Brief No. 12,” (Center for Advance Studies in Child Welfare, 2012), accessed March 8, 2012,http://www.cehd.umn.edu/ssw/cascw/research/minnlink/minnlinkpublications.asp.
 Loran B. Kundra and Leslie B. Alexander, “Termination of Parental Rights Proceedings: Legal Considerations and Practical Strategies for Parents with Psychiatric Disabilities and the Practitioners Who Serve Them,” Psychiatric Rehabilitation Journal 33(2) (2009): note 249, 143.
 Elizabeth Lightfoot, Katharine Hill, and Traci LaLiberte, “The Inclusion of Disability as a Condition for Termination of Parental Rights,” Child Abuse and Neglect 34 (2010): 928; Maurice Feldman, “Parents with Intellectual Disabilities: Implications and Interventions,” in J. Lutzker (Ed.), Handbook on Child Abuse Research and Treatment (pp. 401–420) (New York, Plenum Press: 1998).
 Elizabeth Lightfoot, Katharine Hill, and Traci LaLiberte, “The Inclusion of Disability as a Condition for Termination of Parental Rights,” Child Abuse and Neglect 34 (2010):, 930 (citing Phillip Swain and Nadine Cameron, “‘Good Enough Parenting:’ Parental Disability and Child Protection,” Disability and Society 18(2) (2003): 165–177).
 Chris Heide, University of Washington Daily, “More to Marriage than It Seems,” accessed March 2, 2012,http://dailyuw.com/archive/2007/02/09/imported/more-marriage-it-seems#.U0X4xlcvmJs.
 Ella Callow, Kelly Buckland, and Shannon Jones, “Parents with Disabilities in the United States: Prevalence, Perspectives, and a Proposal for Legislative Change to Protect the Right to Family in the Disability Community,” Texas Journal of Civil Liberties and Civil Rights 17 (2011): 9–42.
 U.S. Developmental Disabilities Act, 42 U.S.C.A. §15001 (2000).
 Megan Kirshbaum, Daniel Taube, and Rosalind Lasian Baer, “Parents with Disabilities: Problems in Family Court Practice,” Journal of the Center for Families, Children and the Courts 4 (2003): 37-38.