At The Arc of King County, we encourage our constituents to write to us about the stories that are important to them. We recently received one such article from Emma Crosby who is concerned about parents with disabilities being able to have children, and keep custody of their children. Emma wants to share her research and opinions on the topic. Following her thoughts are several resources for additional reading and research, as well as the link to The Arc of the US official position. At The Arc of King County, we support individuals who are parents as part of our Supported Living Program, and we support them to help access the resources that provide the additional services they want as parents. We also strengthen their parenting skills when we are requested to do so.
I hope you enjoy this special article from one of our community members, and I hope you will consider sending us your story ideas for future blog posts and newsletters, too.
Why Do More People with Intellectual Disabilities Lose Custody of their Children?
In the U.S and other developed nations, there are laws in place that protect people with disabilities from discrimination. Often these include flat access to public buildings, accessible parking spaces, access to systems that help the person with a disability find work and the right to inclusive education facilities. Americans with disabilities are also now able to enjoy equal access to healthcare since medical insurance companies are no longer allowed to exclude pre-existing conditions from their policies. But there is one right that is universally ignored: the right to become a parent and raise children. Through the Universal Declaration on Human Rights, established in 1948 after the holocaust and other war crimes disgusted the world, people are supposed to have the right to found a family and to raise that family without negative interference from the state.
Clearly enshrined in article 16 of the declaration, one would assume that this right to procreate and enjoy the society of your own children was protected in law for all parents, whether they have a disability or not. Shockingly, this isn’t true. Although America was the first country to enact any rights at all for its citizen’s with disabilities through the Americans with Disabilities Act 1990, the act doesn’t include a section on disabled parenting and this is the case in other countries too. The UK’s Disability Discrimination Act of 2005 doesn’t even contain one paragraph on parenting. Simply put, people with intellectual and developmental disabilities (I/DD) all around the world don’t have any rights to be a parent, and more worryingly, if anyone of authority decides to question their parenting relationship, they don’t even have the automatic right to custody of their children.
One in 10 Children Has a Parent with a Disability
The laws intended to protect children from harm and neglect are increasingly being used to remove children from capable parents who have disabilities under the assumption that people with I/DD are unfit to look after them. Despite the fact that one in 10 American children have a parent who is disabled, the overwhelming societal belief is that people with disabilities cannot or should not be parents. Although we are well into the 21st century, the notion of people who have disabilities entering into romantic relationships remains taboo. The natural extension of those relationships – having children – is unthinkable to an able-dominated culture. Could this be the reason that no legislation has been put in place to protect the parent-child bond in families with a disability?
Child protection policies permit social service departments or healthcare professionals to question a parent about their disability if they believe that it may impact their ability to care for the child. Furthermore, there is no limit to the amount of times a person may be questioned. The problem with this intervention is that parents with disabilities are generally thought of as inadequate caretakers for their children from the outset. They often have to prove that they are capable, rather than authorities assuming they are. In essence, parents with disabilities are ‘guilty’ of neglect or incompetence until proven innocent, rather than the other way around. In some cases, authorities may offer assistance for a parent with a disability who doesn’t require any, rather than respecting that the person will ask if they need help. More frustrating however, is that some parents don’t get the chance to ask for help because their babies have been taken away directly from the maternity ward on the basis of the parental diagnosis. This could be due to staff ignorance or it may simply be cheaper to adopt the child out rather than provide long-term support to a family with disabilities. Whatever the reason, it is frighteningly common.
For parents with intellectual disabilities, the problem is epidemic. Between 40-80% of those parents have their children taken away. Some agencies that are supposed to support these families can make thing worseby focusing on their disabilities rather than looking at their strengths. They fail to understand that most people with disabilities are good at adapting because they find ways to work around their disability. Because of this ability to adapt, they are often very good at problem solving.
Measures that agencies may perceive as helpful or in the best interests of the children can end up being detrimental to the family. For instance, social workers may go beyond the responsibility of their job and interfere with the day–to-day living of such a family. Social workers do not accept parenting decisions or they impose conditions that are not put on other parents. Parents with disabilities are pressured to prove themselves ‘worthy’ of parenthood – a stance which can put them through deep anxiety and depression. This heavy-handed approach actually puts children at risk because it dissuades many parents who fear losing their children if they ask for help when they need it.
People with physical disabilities also get unfair treatment. Erika, who is blind, temporarily lost custody of her first-born daughter.She had breastfeeding difficulties and sought a nurse to help her. Instead of advising her on nursing her baby, the nurse reported her to child protective services because she was worried how a person who is blind would cope. The baby was put into foster care for almost two months while her distraught mother had to prove she was capable of looking after her. Although her daughter was eventually returned to her, she was robbed of the ability to breastfeed as her milk had dried up.
In another case, Joanna, a mother who has cerebral palsy, had a child protection case opened against her when she made the choice to homeschool her child. An increasing number of parents are choosing to homeschool because it is a legal educational option. Despite this, the assertion was made that she was homeschooling her child so the child could ‘stay at home and care for her’. They made this assumption despite the fact that the mother had never received or needed any social assistance and had lived independently for her entire adult life. In her case, while the child in question was not removed from the home, it took attorney representation before the file was closed. Exercising free will is a fundamental part of decision-making in parenting – yet the choices parents make may not be accepted if they are deemed not competent, or their decisions may be unfairly attributed to the fact that they have a disability.
If you do not have a disability and think none of this could apply to you, you should think again. The same legal loopholes that allow children to be removed from their parents with disabilities are being used to take children from parents who become sick. Those with chronic fatigue syndrome or cancer may find that their child is placed in foster careif they assume the parent is too ill to care for them – even if that isn’t the case. Two thirds of states in America list disability and illness as reasons to remove a child from his parents in their child protection laws.
Alina, a New Yorker, lost custody of her children to her ex-husband after she got breast cancer. They assumed he was the best parent to take care of the children because he was healthy She was denied a full-time relationship with her children before her death. The children lost what little time they had left with her and the chance to build more memories.
Amanda lost her daughter after caring for her since birth when she got severe osteoarthritis and needed a hip replacement. She was accused of abusing prescription painkillers by the child’s father, despite the fact that the treatment was needed and sanctioned by a doctor. After surgery, she fully recovered but she still was not allowed to have her daughter back.
In marital disputes and custody proceedings, parents with disabilities also have their parental rights terminated at much higher rates than the parent without a disability.
In 2014 the presumption needs to be that all parents no matter their diagnosis have the ability to parent their children and the support offered should be real, instead of designed to detect child neglect. As people with disabilities are becoming more included in community life, the number of children being born to them is increasing and discrimination laws need to be updated to reflect this.
People who have a disability have as much right as any person to start a family. Anyone in support of promoting the legal rights of parents with disabilities should write to their congressman and ask for parenting to be covered under discrimination laws. Additionally, medical providers should help their patients with disabilities who want to become parents. Encourage your health care providers to consider the rights and needs of all of their patients starting families:
- Make more time at obstetrician appointments to make sure the person understands
- Repeat the information if necessary
- Give information on pregnancy and birth that is easy to understand – flyers with larger, simply constructed writing and illustrations may be helpful. Some people also find DVD programs easier to absorb
- The formation of pre-natal education classes for parents with a disability, or one-to-one education classes using role play so that parents can learn skills like diaper changing and feeding
- Inclusion of a family member, partner or personal assistant so that the person is fully aware of any proposed care plan and can properly consent
- A social worker can be assigned if needed to help the parents establish a parenting routine. This may be a single visit or a longer-term care plan for the family. This should be done with the aim of building on existing skills rather than hunting for potential problems
- Parents should have access to large print, easy to read childcare booklets and highly visual posters
- Adaptive baby equipment can be bought for parents with physical disability
Position of The Arc of US: http://www.thearc.org/page.aspx?pid=2375
Universal Declaration of Human Rights, U.S Department of State, accessed April 15, 2014, http://www.state.gov/j/drl/rls/irf/2008/108544.htm
Protecting the Rights of Parents with Disabilities, American Psychological Association, accessed April 15, 2014, https://www.apa.org/monitor/2013/07-08/disabilities.aspx
Why Parents with Disabilities are losing Custody of their Kids, Time, accessed April 15, 2014, http://healthland.time.com/2012/11/27/why-parents-with-disabilities-are-losing-custody-of-their-kids/
Americans with Disabilities Act 1990, accessed April 15, 2014, http://www.ada.gov/pubs/adastatute08.htm
Parents with Learning Difficulties, Child Protection and the Courts, accessed April 15, 2014, http://disability-studies.leeds.ac.uk/files/library/Booth-parents-with-lea-diff.pdf
Obsessive Compulsive Disorder, PsychGuides, accessed April 15, 2014, http://www.psychguides.com/guides/ocd-obsessive-compulsive-disorder/
Disabled Mothers, Brunswick Books, accessed April 15, 2014, http://brunswickbooks.ca/Disabled-Mothers/
Products for Parents with Disabilities, Wheelchair Net, accessed April 2014, http://www.wheelchairnet.org/WCN_ProdServ/Docs/TeamRehab/RR_97/9706art2.PDF
Parents with Learning Disabilities, Best Beginnings, accessed April 15, 2014 http://www.bestbeginnings.org.uk/parents-with-learning-disabilities
Andrew Solomon, ’Far from the Tree, Parents, Children and the Search for Identity’, Scribner Book Company, 2013, accessed April 15, 2014, http://www.barnesandnoble.com/w/far-from-the-tree-andrew-solomon/1111305531