Preserving the Right to Parent: 
Custody Issues for Survivors with 
Disabilities 

Robyn M. Powell, MA, JD 
April 16, 2019 



In Memorial 


Carrie 
Ann 
Lucas 
1971-2019 




Parents Empowering Parents 

-Parents Empowering Parents (PEP): National 
Research Center on Parents with Disabilities and 
their Families is a cross-disability initiative guided by 
the ethos of the disability community, “nothing 
about us without us.” 

-Through services, research, and advocacy, the 
Center provides instruction and information about 
health and parenting services for parents with 
disabilities and their families. 



Acknowledgements 

-Support was provided by the grant #90DP6E000101-
00, from the National Institute for Disability, 
Independent Living, and Rehabilitation Research 
(NIDILRR), US Department of Health and Human 
Services, and the Lurie Institute for Disability Policy. 
The opinions and conclusions are solely mine and 
should not be construed as representing the 
sponsor. 



Overview of Presentation 

-Parenting with a disability: Past and present 
-Violence against people with disabilities 
-Rights of parents with disabilities 
-Strategies for working with parents with disabilities 
-Resources 
-Questions and answers 



Parenting with a disability: Historical 
perspective 

-Involuntary sterilization 
-30 states legalized compulsory sterilization of those 

perceived “socially inadequate” 
-Buck v. Bell, 274 U.S. 270 (1927) 
-By 1970, more than 65,000 Americans were sterilized 

-Restrictions on marriage 
-In 1974, ~40 states had laws forbidding people with 
disabilities, mostly intellectual or psychiatric disabilities, 
from marrying 
-As of 1997, 33 states still had statutes limiting or 
restricting people with intellectual or psychiatric 
disabilities from marrying 



Historical perspective (cont’d) 

Three rationalizations, all which are akin to those 
raised during the eugenics era, have been traditionally 
advanced to justify this restriction: 

• 
Children must be protected; 
• 
People with disabilities must be protected; and 
• 
Society-at-large must be protected 

Parenting with a disability today 

28 years after the passage of the ADA… 

-Buck v. Bell has never been overturned 

-Several states still have some form of involuntary 
sterilization laws on their books 

-Today, women with disabilities contend with 
coercive tactics designed to encourage sterilization 
or abortions because they are deemed not fit for 
motherhood 

-Pervasive myth that people with disabilities are 
either sexually unwilling or unable 



Parenting with a disability today 
(cont’d) 

-Removal rates of parents with psychiatric disabilities 
are as high as 70-80% 

-Removal rates of parents with intellectual disabilities 
are as high as 80% 

-Extremely high removal rates and loss of parental 
rights for parents with sensory or physical disabilities 

-More than two-thirds of dependency statutes include 
disability as grounds for termination of parental rights 
(TPR) 

-In every state, disability may be considered when 
determining the best interest of a child for purposes of 
a custody determination in family or dependency court 



Who are parents with disabilities 
and their children? 

-Estimates vary: 

-4.1 million parents (6.2%) with reported disabilities 
in the United States have children under age 18 
(Kaye, 2012) 

-Estimates indicate 6.1 million (10%) children in the 

U.S. have parents with disabilities (Kaye, 2012) 

Who are parents (cont’d) 

-2.9 million parents in the United States have a 
disability (Li, et al., 2016) 

-10.3% of parents in the United States have a 
disability (Sonik, et al., 2018) 

-2.7 million parents (3.8%) have a serious mental 
illness, 12.8 million (18.2%) have some type of 
mental illness (Stambaugh et al., 2016) 



Violence against people with 
disabilities 

-Disabled people have a higher lifetime prevalence 
of experiencing abuse than nondisabled people 
(Breiding & Armour, 2015) 

-In 2015, disabled people were 2.5 times more likely 
to experience violent victimization, and 3 times 
more likely to experience serious violent crimes (i.e., 
sexual assault, aggravated assault, and robbery) 

-Women with ID are 7 times more likely to 
experience sexual assault, people with ID are 12 
times more likely (Shapiro, 2018) 



Violence against people with 
disabilities (cont’d) 

-Disabled women have 40% greater chance of 
intimate partner violence (IPV) (APA, n.d.) 

-Police are less likely to respond to reported violence 
against victims with disabled people (DOJ, 2008) 

-Disabled people encounter difficulties accessing 
appropriate, accessible services for IPV (Lightfoot & 
Williams, 2009) 



Ways that people with disabilities 
experience domestic violence 

-Verbal and psychological 
abuse 
-Physical violence 
-Unwanted sexual contact 
-Threats and intimidation 
-Neglect 
-Withholding medications 
-Physically harming service 
animals 

-Isolation 

-Deprivation of necessary 
physical accommodations 

-Withholding or destroying 
assistive devices such as 
wheelchairs 

-Financial exploitation and 
misuse of money 

Source: https://ncadv.org/blog/posts/domestic-violence-and-people-with-disabilities 



Parents with disabilities 
experiencing domestic violence 

-Parents with disabilities involved with child welfare 
system were 1.5 times more likely to have witnessed 
violence between their parents as a child and 1.6 times 
more likely to have experienced abuse themselves as a 
child (Lightfoot & Slayter, 2014) 

-Parents with ID involved with child welfare system were 
less likely to be referred to domestic violence services 
despite and risk factor of child maltreatment (Slayter & 
Jensen, 2019) 

-Women with disabilities were significantly more likely 
than those without disabilities to stay in a bad 
marriage out of fear of losing their children (NCD, 
2012; Nosek et al., 2001; Olkin, 2003) 



Disability can be used against a 
parent 

• 
“She is incapable of taking care of our children, 
because…” 
• 
“She’s crazy, she can’t be trusted to take care of the 
kids.” 
• 
“She allowed her children to be exposed to 
violence.” 

Rights of parents with disabilities 

-Both the ADA and Section 504 of the Rehabilitation 
Act (for agencies receiving federal funding) apply to 
the rights of disabled parents 

-The ADA was passed with the intent of ensuring 
“full and equal opportunity” for Americans with 
disabilities 

-Almost every case has found that the ADA is not a 
defense to termination of parental rights 

-There seems to be a misconception that Title II does 
not therefore apply to child welfare practice 



Strategies for working with parents 
with disabilities 

-Train staff to work with survivors with disabilities 
-Screen everyone for disability 
-Connect with disability organizations 
-Ensure disabled people are being screened for 

domestic violence 
-Recognize signs of domestic violence among disabled 
people and respond appropriately 



Strategies (cont’d) 

-Ensure accessibility (physical, programmatic, 
communication) 

-Understand experiences of disabled parents, 
including discrimination and custody matters 

-Ensure the rights of disabled parents are not being 
violated 

-Ensure disabled parents are being appropriately 
represented by attorneys trained in disability and 
are properly assessed 



Supporting parents 

Ensure that parents are able to retain custody by 
providing them the supports and services that they 
need to be successful, including: 

• 
Personal care attendant services 
• 
Housing assistance 
• 
Transportation assistance 
• 
Peer support 
• 
Healing services to address violence 
• 
Parenting skills classes 

What would you do? 

Julia is a twenty-nine year old mother of a three-year 
old. She uses a wheelchair and has been diagnosed 
with bipolar disorder. She filed for a protection order 
against her husband, who physically assaulted her and 
took her wheelchair away from her several times. In his 
response, he claims that she is “making things up” 
and “crazy” and “unable to take care of a toddler.” He 
wants full custody of their daughter. The court seems 
to agree with his argument, but Julia says that with 
support she can easily care for their daughter. 

-What supports can you explore that could help Julia? 

-What are some strategies you can use when working 
with Julia? 



DOJ/HHS letter of findings (“Sara 
Gordon” case) 

-January 29, 2015 Letter of Findings to DCF 
-Mother with I/DD, lost custody of newborn 
-State violated ADA and Section 504 
-State must provide mother appropriate supports 

and opportunity to demonstrate fitness 
-Available at http://www.ada.gov/ma_docf_lof.pdf 
-Family was reunited after 2 years, 3 months, and 12 

days! 



DOJ/HHS technical assistance 

-August 10, 2015 
-Overview of the issues and application of ADA and 
Section 504 
-Answers to specific questions and implementation 

examples for child welfare agencies and courts 
-Resources to consult for additional information 
-Available at 

http://www.ada.gov/doj_hhs_ta/child_welfare_ta.pdf 



How to file complaints with DOJ & 
HHS 

DOJ – Civil Rights Division, Disability Rights Section 

http://www.ada.gov/filing_complaint.htm 

HHS – Office for Civil Rights 

https://ocrportal.hhs.gov/ocr/portal/lobby.jsf 



Resources 

-National Research Center for Parents with 
Disabilities 
(http://www.centerforparentswithdisabilities.org/) 

-National Disability Rights Network 
(http://www.ndrn.org) 

-The Association for Successful Parenting 
(http://www.achancetoparent.org) 



Rocking the Cradle: Ensuring the Rights of 
Parents with Disabilities and Their Children 


Available at 

www.ncd.gov 


http://www.centerforparentswithdisabilities.org 



Thank you! 

Questions?? 

Robyn M. Powell 

rpowell@brandeis.edu 
www.centerforparentswithdisabilities.org 



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