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Chapter 7: The Family Law System: Custody and Visitation

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In September 2009, Kaney O’Neill, a veteran and quadriplegic mother, faced an unexpected battle when her former boyfriend filed for custody of their 10-week-old son, alleging that Kaney was “not a fit and proper person” to care for their son and that her disability “greatly limits her ability to care for the minor, or even wake up if the minor is distressed.”[496] Refuting this allegation, Kaney demonstrated her ability to care for their son. Indeed, she had prepared for motherhood by working with an occupational therapy program for expectant mothers and parents, adapting her house for parenting, securing adapted baby care equipment, and using personal assistants to help her as needed.[497] Illustrating the bias that pervades the family law system, an attorney who was not affiliated with the case remarked, “Certainly, I sympathize with the mom, but assuming both parties are equal (in other respects), isn’t the child obviously better off with the father?”[498] This attorney, who has specialized in divorce and custody cases for more than 40 years, said that Kaney “would likely not be able to teach her son to write, paint or play ball.”[499] The attorney asked a news reporter, “What’s the effect on the child—feeling sorry for the mother and becoming the parent?”[500] Parents with disabilities often face such sentiments. Kaney’s battle endured for a year-and-a-half before both parties came to an agreement that gives the father visitation rights.[501] Although she was elated with the outcome, Kaney told reporters that she was “…disappointed that the courts allow for someone to question your ability to have custody based on your disability.”[502]

This chapter explores the family law system’s treatment of parents with disabilities and their families involved in custody and visitation disputes. It begins with a brief overview of the family law system, as it relates to custody and visitation disputes, followed by an examination of the discriminatory practices in the system. Next, the chapter analyzes the patchwork quilt of state laws, many of which overtly discriminate against parents with disabilities. This chapter then discusses the family law system’s bias, speculation, and the arbitrary “best interest of the child” standard. It concludes with a discussion of the significant barriers parents with disabilities and their families face in securing legal representation and meaningful participation in their cases, as well as the impact of the family law system on children.

The Family Law System: A Brief Overview

The family law system deals with a variety of domestic relation matters, such as marriage, divorce, domestic abuse, prenuptial agreements, child support, and child custody and visitation. This chapter focuses on the family law system’s involvement in child custody and visitation.

The Constitution protects the fundamental right to parent without interference from the state, and case law has established that unfitness must be proved before TPR by the state in child welfare. However, when parents are unable to reach a custody or visitation agreement between themselves, the family law courts are left to decide child custody without the constitutional mandates, based on the best interest of the child standard. Family law cases are governed by individual state statutes. Most states have developed their own factors to determine which custody arrangement is in the best interest of the child. In making child custody and visitation decisions, family courts typically try to determine which parent is more likely to fulfill the child’s physical, emotional, intellectual and basic health and safety needs.

Disability Law and the Family Law System

Section 504 of the Rehabilitation Act and Title II of the ADA mandates access to family law courts. Indeed, DOJ considers court actions to be “state activity” for purposes of the ADA. In addition, entities that receive federal financial assistance from DOJ, including state judicial systems, are prohibited from discrimination on the basis of disability under Section 504 of the Rehabilitation Act.[503] The Supreme Court has held that providing people with disabilities with access to courts is a mandate of Title II. According to the Court, “Unequal treatment of disabled persons in the administration of judicial services has a long history,” which the ADA has sought to redress.[504]

Family law courts:

  • Must provide parents with disabilities with an equal opportunity to participate in programs, services, and activities.[505] To implement this mandate, the courts must make reasonable modifications in policies, practices, or procedures unless such modifications would fundamentally alter the nature of the service, program, or activity.[506]
  • Should administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified people with disabilities.[507]
  • May not impose or apply eligibility criteria that screen out or tend to screen out any person with a disability from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered.[508]
  • Must furnish auxiliary aids and services when necessary to ensure effective communication, unless an undue burden or fundamental alteration would result.[509]
  • May provide benefits, services, or advantages beyond those required by the regulation to people with disabilities.[510]
  • May not impose surcharges on people with disabilities to cover the costs of measures to ensure nondiscriminatory treatment, such as making necessary modifications required to provide program accessibility or providing qualified interpreters.[511]
  • May not deny the benefits of programs, activities, and services to people with disabilities because entities’ facilities are inaccessible.[512]

In addition, programs and activities, viewed in their entirety, must be readily accessible to and usable by people with disabilities.[513]

Title III of the ADA is also relevant, as it governs private attorneys and most court evaluators. Private attorneys and most evaluators:

  • Shall not impose or apply eligibility criteria that screen out or tend to screen out a person with a disability from fully and equally enjoying any goods, services, facilities, privileges, advantages, or accommodations, unless such criteria can be shown to be necessary for the provision of such goods, services, and so on.[514]
  • Make reasonable modifications in policies, practices, or procedures when such modifications are necessary to ensure that people with disabilities have access to the goods, services, facilities, privileges, advantages, or accommodations, unless they can demonstrate that making the modifications would fundamentally alter the nature of such goods, services, and so on.[515]
  • Shall take the necessary steps to ensure that no person with a disability is excluded, denied services, segregated, or otherwise treated differently because of the absence of auxiliary aids and services, unless they can demonstrate that taking those steps would result in a fundamental alteration or undue burden.[516]

The System Parents with Disabilities and Their Families Are Likely to Experience

More than half of American families will experience legal separation or divorce.[517] Parents with disabilities who become involved in the family law system for adjudication of custody or visitation disputes do not expect a pleasant experience; however, they are often shocked at the bias they encounter in the system.

Such bias was apparent in the 1979 case In re Marriage of Carney,[518] which is among the most widely recognized decisions to address the custody rights of parents with disabilities. In this case, the mother of two children petitioned the courts to have a previous custody order changed because the father had sustained a spinal cord injury and had quadriplegia. The lower court granted the mother’s motion to change custody, having determined that because of the father’s disability, his relationship with his children would no longer be “normal.” The father appealed the decision, and the case was heard by the California Supreme Court. The California Supreme Court reversed the trial court’s decision, stating that the father’s disability did not suggest a lesser ability to be a good parent to his children. The court felt strongly that the parent-child bond was not merely the ability to engage in physical interaction, and thus the father should not have his parental rights severed or reduced simply because of his disability. In reaching this landmark decision, the court stated:

“On a deeper level…the stereotype [about parents with disabilities] is false because it fails to reach the heart of the parent-child relationship. Contemporary psychology confirms what wise families have perhaps always known—that the essence of parenting is not to be found in the harried rounds of daily carpooling endemic to modern suburban life, or even in the doggedly dutiful acts of ‘togetherness’ committed every weekend by well-meaning fathers and mothers across America. Rather, its essence lies in the ethical, emotional, and intellectual guidance the parent gives to the child throughout his formative years, and often beyond. The source of this guidance is the adult’s own experience of life; its motive power is parental love and concern for the child’s well-being; and its teachings deal with such fundamental matters as the child’s feelings about himself, his relationships with others, his system of values, his standards of conduct, and his goals and priorities in life.”[519]

Of the Carney decision, Dave Shade says, “Although it was overturned, the trial court’s decision paints an all-too-familiar picture of the parent with a disability: unable to provide care, unable to provide love, unable to be a parent.”[520]

Although the higher court in Carney held that a parent’s disability should not be a factor in determining custody, this view has not been consistently enforced. Many parents continue to experience discrimination in child custody and visitation cases, and published court opinions reflect an ambivalent approach to deciding custody and visitation disputes in which a parent has a disability. The frequency and significance of family law issues was demonstrated in 2008, when the TLG legal program completed a study of 200 cases concerning a parent with a disability involved in child custody litigation and found that that largest number of calls (44 percent) came from parents who were involved with the family law system.[521]

Parents with disabilities encounter pervasive discrimination in child custody and visitation disputes. For example, in the summer of 2011, a custody dispute concerning a mother with stage IV breast cancer made headlines. In this case, which reached the Supreme Court of North Carolina, a judge ruled that the children must live with their father, in part because of their mother’s breast cancer diagnosis.[522] A psychologist who evaluated the couple as part of the custody proceedings sided with the father. Nonetheless, she said she had reservations about the decision because “she did not know for sure whether it would be better for the children to be with [the mother] in the last year or years of her sickness.”[523] In response to this case, a family attorney told a news reporter, “Medical conditions and their potential consequences on parents often are factors in custody and divorce proceedings. Weighing the possibility of a parent’s deteriorating condition or premature death might sound terrible to parents, but they are valid questions the court must consider.”[524] The issue of “normal” reared its ugly head in this case, when the judge cited a psychologist’s testimony: “The more contact [the children] have with the non-ill parent, the better they do.[525] They divide their world into the cancer world and a free-of-cancer world. Children want a normal childhood, and it is not normal with an ill parent.” Further, according to Courtney Hutchison, ABC News Medical Unit, “In accordance with the Uniform Marriage and Divorce Act, it is not uncommon for family court to take into account the health, both physical and mental, of a parent in making custody decisions.”[526]

In another example of how the family law system treats parents with disabilities, “A judge maintained that a mother with a physical disability could not parent despite findings of psychological and occupational therapy evaluations documenting her capability. He assumed that the children would function as her attendants, though the mother was independent, there was personal assistance to meet her needs, the home was modified with adaptations, and her children had only the usual household chores. There were concerns about how quickly she could get upstairs in an emergency. When her ability to get upstairs was demonstrated, the next demand [by the judge] was to test her speed with a stopwatch.”[527]

As recent cases illustrate, despite the 1979 Carney decision, parents with disabilities often face disparate treatment in the family law system. Certainly, Carney “articulated a standard vis-à-vis parents with physical disabilities to which a number of other states have hewn. Even in the context of stigmatized illnesses, such as infection with human immunodeficiency virus (HIV), courts generally have been inclined to rule in favor of custody or visitation, absent proof of some direct risk to the child’s well-being.”[528] Appellate cases that involve parents with sensory disabilities, such as blindness and deafness, indicate an approach similar to the Carney line of cases.[529] However, recent cases demonstrate that parents’ disabilities are still often raised as an issue.

In custody and visitation cases involving parents with intellectual or developmental disabilities, the family law system demonstrates an ambivalent approach. A North Dakota case reveals a disturbing lack of basis for limiting a parent with an intellectual disability custody and access to her child. In Holtz v. Holtz,[530] the trial court heard evidence and argument regarding the need for changing custody from a custodial mother with a developmental disability, dyslexia, and a learning disability. The father sought primary physical custody, despite admitting that he had had almost no contact with his 7-year-old child prior to the lawsuit. The trial court’s stated basis for granting the father custody was that the mother had a “mental incapacity to develop as [the child] grows….Therefore, [she] would not be capable or competent to raise the minor child….” Using a “clearly erroneous” standard of review, the state Supreme Court found that there was no reversible error. The decision was affirmed despite the court’s acknowledgment that no expert evidence established the parameters of the mother’s disabilities at the time of the divorce (though the parenting aide and guardian ad litem gave evidence). That is, the trial court did not make an explicit connection between the child’s best interest and the mother’s parenting skills, but the North Dakota Supreme Court upheld the trial court’s determination.[531]

Recently, in a highly publicized case, the courts addressed the visitation rights of a mother with a disability. Abbie Dorn acquired a severe brain injury in 2006, after delivering triplets.[532] In March 2011, after a lengthy battle, Abbie was granted five-day visits annually with her children, as well as monthly 30-minute Skype sessions to maintain a parental relationship.[533] In the ruling, the judge noted that when the children were granted a visit with their mother the previous December, they immediately established a bond with her.[534] As evidence, the judge noted that the children would physically hold on to photographs of their mother that they were given after the visit for long periods of time.[535] According to the ruling, “The court finds that even though Abbie cannot interact with the children, the children can interact with Abbie—and that the interaction is beneficial for the children. They can touch her, see her, bond with her, and can carry these memories with them.”[536]

While the family court in Abbie’s case ultimately ruled in her favor, many parents with cognitive disabilities are not as fortunate. Lindsay,[537] a mother of two children, was astonished when she learned how the family law system viewed her disability. Like Abbie, Lindsay has an acquired brain injury. Although Lindsay had had custody for a while, the father of her children wanted to establish a more formal agreement. During the mediation, she was astounded by the focus on her disability, especially given that she had had custody without any problems. Lindsay’s physicians and friends were deposed about her disability. Beaten down by her experiences with the family law system, Lindsay ended up relinquishing her custody rights and now has only visitation with her children.

The attitudinal bias that is obvious in cases involving parents with intellectual and developmental disabilities or cognitive disabilities is even more striking in custody and visitation cases involving parents with psychiatric disabilities. According to Kirshbaum, Taube, and Baer:

“Parents with current psychiatric disabilities—whether minor or major—are more likely, however, to have such disabilities considered and used, at least in part, to decide custody in favor of the nondisabled parent…[I]n a recent case involving an allegation of a change in circumstances, the Supreme Court of North Dakota upheld the trial court’s determination that a mother experiencing depression secondary to fibromyalgia and migraine headaches should lose physical custody of her three children to their father. The court so held on the basis of an expert mental health professional’s testimony that the oldest child was ‘becoming destructively parentified’ (that is, ‘assuming adult responsibilities and acting as a care provider for younger siblings’) because of the mother’s disabilities. This change of custody is unusual, given the typical reticence shown by appellate courts to disturb ongoing custody arrangements absent significant effects on children, and the fact that ‘parentification’ is a theoretical concept for which little, if any, empirical verification exists.”[538]

Another example of the use of persistent social stereotypes and prejudicial assumptions can be found in discussions regarding parents on the autism spectrum. These parents are subject to many of the same unfounded stereotypes, claiming incapability to parent or risk of violence, which parents with intellectual and psychiatric disabilities encounter. Additionally, parents on the autism spectrum are often presented as uncaring or lacking empathy toward their children or spouses.[539] Despite research showing these claims to be inaccurate, they persist in guidance provided to family law professionals regarding autism and Asperger’s syndrome (a type of autism).[540] For example, a 2003 article by a family law professional made the case that in high-conflict divorces in which one party has a diagnosis of Asperger’s, the fault should be presumed to lie predominantly with the autistic parent, even if evidence suggests otherwise.[541] The long-term consequences of these stereotypes are significant—some parents who are on the autism spectrum have said that fear of discrimination in child custody proceedings keeps them from leaving relationships with abusive partners.[542]

As these cases demonstrate, even 33 years after Carney, parents with disabilities continue to face discriminatory practices, reflecting attitudinal bias on the part of the family courts. As noted by Jennifer Spreng, professor at Phoenix School of Law, a “‘well’ father or husband can have an advantage in obtaining custody even if he is an inferior caregiver or has maltreated the children himself.”[543]

Bias, Speculation, and the “Best Interest of the Child” Standard

As previously mentioned, family courts use the best interest of the child standard to decide custody matters. Most states have developed their own list of factors to determine which custody arrangement would be in the best interest of the child.[544] Typical factors include which parent best meets the physical, emotional, intellectual and basic health and safety needs of the child; what does the child want (if the age and maturity of the child render an expressed desire reliable); length of the current custody arrangement and whether it is positive; whether the alternative arrangement is suitable and stable; primary caretaking history; evidence of domestic violence or substance abuse; evidence of lying to the court about domestic violence or other matters; whether either placement involves a significant other with history of violence or dependency issues. The best interest analysis always allows for a parent’s own ‘health’ to be considered.[545]

Kirshbaum, Taube, and Baer note, “Despite the disability civil rights movement, attitudinal bias regarding disability is still prevalent.”[546] Unfortunately, “legal, medical, and mental health professionals are not immune to these biases. Negativity and a lack of cultural competence about disability are reflected in language appearing in unpublished court documents and evaluations, such as ‘afflicted with dwarfism,’ ‘wheelchair bound,’ ‘suffers from physical disability.’”[547]

The best interest of the child standard has been criticized for giving too much discretion to trial courts and for allowing judicial bias to affect custody and visitation decisions, which often has significant and detrimental consequences for parents with disabilities and their children.[548] Breeden, Olkin, and Taube believe that the best interest of the child standard is too vague and offers little guidance to courts and evaluators.[549] According to Kirshbaum, Taube, and Baer:

“The near absence of explicit rules addressing bias in the assessment of parents with disabilities in statutes, rules of court, and professional standards gives few grounds upon which appellate courts can address common problems of bias against parents with disabilities at the pretrial and trial court level. In addition, appellate court cases themselves show signs of bias against parents with disabilities, although they are subtle. Further, one can observe increasingly biased assumptions as the appellate courts move from cases involving obvious physical disabilities (e.g., a person with paraplegia who uses a wheelchair) to those with more subtle or stigmatized disabilities, such as cognitive or psychiatric disabilities. That is, custody cases involving physical disabilities tend to give the impression that appellate courts are giving careful consideration to parenting capacities and the best-interest standard. On the other hand, custody cases involving cognitive or mental disabilities are more suggestive of biased assumptions about the effects of such disabilities on parenting capacities.”[550]

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.[551] Custody and visitation decisions also reflect patterns of increased attitudinal bias regarding certain disabilities.[552] Kirshbaum, Taube, and Baer found that “negative speculations about the future are common and often seem to be based on stereotypes rather than on evidence.”[553] Furthermore, courts often assume that children will be forced to provide care to their parents with physical disabilities, which is in stark contrast to what researchers have consistently found.[554]

Paul’s story demonstrates the gravity of the situation faced by many parents with disabilities who are involved in the family law system.[555] Paul was a father with quadriplegia and a stay-at-home parent for his three-year-old son Leo. He had spent 20 years as a police officer and became quadriplegic when he was shot on the job. Although Paul used walking canes, his active son was safe in his care. He had door alarms on the doors and bookcases in case Leo tried to climb or leave the house. An ingeniously installed alarm system triggered if Leo tried to leave the yard. Leo had never been hurt or gotten away as a result of Paul’s disability. Then Leo’s mother filed for divorce, moved out, and filed for full physical custody. She asserted that quadriplegia rendered Paul unable to care for Leo.

Despite uncontested testimony that Paul had always been the primary parent, the Georgia family law court awarded temporary custody to the mother, with severely limited visitation to Paul. Twenty-four-hour supervision was required during the visitation periods, and Paul was ordered to hire a professional nanny to supervise visitations. Over the next two years of litigation, Paul went through a significant portion of his disability retirement fund paying for attorneys, private nannies, interim child support, and assessments.

He and his attorney concluded that the only way to show parental capacity was with an Adapted Baby Care Assessment. No occupational therapist was able to do the assessment in their area, so a therapist from TLG flew to Georgia, conducted the assessment, completed and submitted a court report, and appeared in court to defend it at trial. Paul won half custody of Leo with no requirement of supervision. While grateful, he was sad that he had missed a great deal of his son’s life. Both he and Leo experienced tremendous grief during the long periods of court-ordered separation.

Parents with intellectual disabilities are not immune to the negative effects of bias and the best interest of the child standard used in the family law system. In fact, several researchers, including attorney Duffy Dillon, contend that parents with intellectual disabilities are in an even more vulnerable position at these proceedings than during dependency cases.[556] Fewer procedural protections are afforded to parents with intellectual disabilities in the context of divorce.[557] Because the best interest standard governs from the beginning, parents with intellectual disabilities “are explicitly denied both an initial fitness analysis and the opportunity to rehabilitate their parenting skills before a final decision is made. Moreover, unlike termination proceedings, divorces involve additional (presumably ‘fitter’) parties who also vie for the child’s custody. Since the best interest standard requires as little disruption in the child’s life as possible, pressure exists to make a decision sooner rather than later. Consequently, although divorce courts unquestionably give serious consideration to their custody decisions, decision-makers might gloss over the grave issues that arise in termination proceedings when they arise in divorce.”[558]

Parents with psychiatric disabilities often encounter similar bias, as demonstrated by Andrew’s experiences.[559] Andrew is a Korean-American father in New York who has bipolar disorder. He relied on his wife and extended family to help him parent his two young children, Clayton, seven, and Katie, four. His wife decided to move out, taking Clayton and Katie. Her pleadings began by discussing Andrew’s mental health history. Although Andrew was stable, this biased the court. Then he became overstimulated by the emotional intensity of the courtroom—flustered, inarticulate, and loud, and unable to make eye contact. The court granted him very limited, supervised visitation.

After the first visit, the mother filed a police report stating that Andrew was “crazy” and abused the children. Her attorney filed to suspend visits pending investigation and won. The judge noted concern regarding the allegation of abuse in combination with Andrew’s diagnosis. This became the pattern, repeating over months. Andrew’s therapist contacted TLG’s legal program, which supported her in filing a motion to have one of its therapists supervise visits and provide intervention services with Andrew and the children. The therapist had expertise in family systems and psychosocial disability and parenting. She met regularly with Andrew and his children for weeks in their home and in the community. She believed that Andrew was not abusive and did not require supervision.

Her report submission coincided with the final allegation of abuse. The mother alleged that Andrew sexually abused Clayton in a mall bathroom during an afternoon visit. Fortunately, surveillance camera footage was available, and the police determined that Andrew never took Clayton into a mall bathroom. With proof that this allegation was false and a positive report from the therapist, the court granted unsupervised visits.

Andrew’s family was unable to absorb the financial and emotional strain and believed that it was all too much for Andrew; that he would decompensate over time from the stress. They refused to allow visits or overnights at their home. Andrew does not feel able to live independently, so he has lost contact with his children.

Thus, even in cases where the parent with a disability eventually wins, he or she may lose. These parents face an arduous and expensive task to prove their ability to care for their children, even when they have been doing so before the proceedings without any problems. Duffy Dillon notes, “Although the best interest standard necessarily requires a comparison of two parents, a presumption cannot exist that a disabled parent is per se the weaker parent.”[560] As discussed next, the family law system—as well as parents with disabilities and, more important, their children—would greatly benefit from the development of protections for parents with disabilities that counter the current bias, speculation, and discriminatory application of the best interest of the child standard.

The Patchwork Quilt of State Laws

From state to state, statutory criteria for the award of custody vary considerably, but all states use the best interest of the child standard.[561] In an effort to clarify the meaning of this standard, most states have adopted, at least in part, the model custody language proposed by the Uniform Marriage and Divorce Act.[562] Several states have expanded the best interest standard and the model statute to include a wide range of factors for the courts to consider in making custody determinations.[563] Some states leave it to the courts to determine the factors that constitute a child’s best interest.[564] All states allow—and a number mandate—consideration of a parent’s physical and mental health.[565]

Many states remain silent on the issue of whether a parent’s disability should affect child custody and visitation matters. Further, many states do not have adequate laws to protect parents with disabilities in child custody proceedings. Omissio

Fortunately, there has been moderate progress in child custody laws for parents with disabilities. For example, in August 2010, California Governor Arnold Schwarzenegger signed SB 1188; the law, which went into effect on January 1, 2011, codifies Carney, shifting the burden of proof onto the parent who raises the disability as an issue and states that disability cannot form the basis of custody or visitation orders “unless that party establishes by clear and convincing evidence that a grant of custody or visitation to the disabled parent would be detrimental to the health, safety, and welfare of the child.”

Similarly, Minnesota Statute 518.17 addresses the issue of disabilities of a proposed child custodian. This statute states that the court can consider and evaluate the mental and physical health of all persons involved, “except that a disability…of a proposed custodian or the child shall not be determinative of the custody of the child, unless the proposed custody arrangement is not in the best interest of the child.”

Idaho has passed the most extensive and thorough protections for parents with disabilities, including in family law cases. Idaho Statute 32-717 states:

“If the parent has a disability as defined in this section, the parent shall have the right to provide evidence and information regarding the manner in which the use of adaptive equipment or supportive services will enable the parent to carry out the responsibilities of parenting the child. The court shall advise the parent of such right. Evaluations of parental fitness shall take into account the use of adaptive equipment and supportive services for parents with disabilities and shall be conducted by, or with the assistance of, a person who has expertise concerning such equipment and services. Nothing in this section shall be construed to create any new or additional obligations on state or local governments to purchase or provide adaptive equipment or supportive services for parents with disabilities…. [N]othing in this chapter shall be construed to allow discrimination on the basis of disability. In any case where the disability of a parent is found by the court to be relevant to an award of custody of a child, the court shall make specific findings concerning the disability and what effect, if any, the court finds the disability has on the best interests of the child.”

While states such as California, Minnesota, and Idaho have moved in the right direction in protecting parents with disabilities in family court, many states have not. Capricious legislation coupled with the ambiguous best interest of the child standard leaves parents with disabilities open to discriminatory treatment and their children at a disadvantage. Until state laws are harmonized, with clearer allocation of evidentiary burdens and enforcement of nexus provisions, parents with disabilities will continue to face discriminatory treatment, and their children will suffer.

Issues in Meaningful Participation and the Total Lack of Guaranteed Representation

Compounding an already arduous situation in the family law system, parents with disabilities face a complete lack of guaranteed legal representation and a plethora of barriers to meaningful participation. While parents have a right to representation in dependency cases in the majority of states, “there is no corps of family law specialists comparable to the public defender system that is educationally, administratively, and financially prepared to represent the rights of the indigent parent.”[566] Indeed, obtaining appropriate and effective legal representation is often the first obstacle a parent with a disability faces in a child custody case. Whereas in dependency cases parents with disabilities generally have a right to counsel, no such right exists in custody and visitation matters—litigants must fund their own legal representation. Parents with disabilities often have limited incomes and more expenses than parents without disabilities.[567] They are less likely to have the financial resources to retain private attorneys.[568] Similarly, court costs and filing fees present significant barriers for parents with disabilities.[569]

Parents with disabilities often seek representation from legal service agencies and other advocacy organizations.[570] However, Kirshbaum, Taube, and Baer found that “many parents with disabilities are surprised to discover that, throughout the United States, it is rare for disability legal advocacy organizations to become involved in marital custody cases…. [P]arents with disabilities are often unable to obtain assistance from local, non-disability-specific legal service agencies [; these…] agencies are restricted in the types of cases for which they can provide representation.”[571] Additionally, “Even where low-cost representation is offered by legal service agencies, it may be effectively unavailable. In many states, legal service agencies will represent only one spouse in dissolution or child custody dispute due to conflict of interest issues.”[572] Moreover, legal service agencies have experienced significant funding cuts, further hampering their ability to represent parents with disabilities.[573] In 2012, legal service agencies anticipate laying off nearly 400 employees; the reductions continue a staff downturn that began a few years ago.[574] Limited financial resources also make it difficult—if not impossible—for many parents with disabilities to obtain expert witnesses, who are extremely important and often determinative in these cases.[575] Even when parents can retain private legal representation, finding an attorney with disability-relevant experience and knowledge is challenging.[576] Parents with disabilities face significant barriers within the family law system, largely because of bias and speculation; attorneys, like judges, are not immune to prejudice. Parents with disabilities must retain counsel that understands the barriers they face and how to overcome them. Counsel must not only have expertise in family law but must understand disability or be willing to work with experts and advocates. Unfortunately, such legal representation does not exist in large numbers.

Parents with disabilities are also likely to encounter difficulty retaining a private attorney who will adequately accommodate their disability. Title III of the ADA mandates private attorneys to provide clients with disabilities reasonable accommodations, such as interpreter services.[577] Because private attorneys are generally required to absorb the costs of accommodations, they may decline this kind of case, although they will likely justify declining the case on other grounds.

Because obtaining affordable and effective representation is a significant barrier for many parents with disabilities, Kirshbaum, Taube, and Baer have found that those “who do not have legal representation often will simply not show up for a court appearance, unaware of the consequences of a failure to appear. They often think that their absence will merely postpone the issue, not that their legal rights may be lost, and [they] do not know that they can appear in court and ask the judge for a continuance while they find an attorney.”[578] Such actions have enormous implications in these cases.

Parents with disabilities encounter a variety of other obstacles to meaningful participation in the family law system. Despite the mandates of the Rehabilitation Act and the ADA, physical access to courts is still a challenge in many communities, particularly in smaller towns and rural regions.[579] Similarly, it is very common for parents with disabilities to face limited programmatic access, such as effective communication, during or regarding family court proceedings.[580] Even when they request accommodations in advance, parents with intellectual disabilities often are not provided with advocates or translators so they can understand the family court process.[581] Moreover, attorneys are often hesitant to request accommodations because they think calling attention to the parent’s disability might affect the custody outcome.[582] Such barriers to physical and programmatic access greatly impede parents with disabilities from meaningful participation.

Thus, parents with disabilities all too frequently face significant barriers to retaining effective and affordable legal representation as well as meaningful participation in the family law system. At the same time, because of discrimination, their participation and involvement are crucial to securing a reasoned and nonbiased outcome in their child custody case. Professionals—including judges, attorneys, and evaluation personnel—need to be trained regularly on parents with disabilities and their children. This training should be a mandatory component of continuing education requirements for such professionals. Moreover, DOJ must issue guidance to family courts and attorneys, reinforcing their legal obligations pursuant to the ADA. Such guidance must address (1) the applicability of the ADA to custody and visitation proceedings; (2) the courts’ duty to provide reasonable accommodations to parents with disabilities; and (3) the fact that presumptions of parental incompetence based on disability violate the ADA.

The Impact on Children

Children are at the center of all custody and visitation disputes, and are the most deeply affected by the outcomes of these cases. Children who are removed from their parents because of parental disability experience the same trauma from separation and loss of the primary caregiver that they face in dependency cases.[583] Moreover, Callow, Buckland, and Jones believe that “these children also have a greatly increased risk for postremoval maltreatment. As a biased response to the parent’s disability, court officers, evaluators, and mediators are frequently in a rush to justify a move from the parent with a disability to a typical or able-bodied caregiver. This brings the courts to accept alternatives that would be unacceptable were the disability not a factor. Unlike Callow’s experiences with the general population in family court cases, [she] finds that children with a parent who has a disability are more frequently placed with the other (nondisabled parent) or an extended family member who has a history of abuse, addiction, poor decision making or parenting; has had little or no contact with the child; or will not be a ‘friendly parent’; that is, one who will facilitate an ongoing relationship between the child and the parent with a disability.”[584]

“For many, many children, the trauma of losing their families—one of the greatest traumas a child can endure—is heightened when they are abused or neglected…by co-parents or extended family members who have histories of violence, substance abuse, or neglect and would never have won custody from an able-bodied parent. Such suffering has repercussions not only for the children, but for society.”[585]


Each year the destiny of millions of children are decided in divorce, custody, and visitation proceedings throughout the United States.[586] Custody and visitation disputes should be based on the best interest of the child; a parent’s status as disabled should be irrelevant to the analysis without an evidentiary showing of nexus between the parental disability and a detrimental impact on the child. Parents with disabilities are likely to encounter disparate treatment in the family law system entirely on the basis of other people’s perception of their disability and its impact on parenting. This discrimination is compounded by the patchwork quilt of state laws, attitudinal bias regarding the child-rearing abilities of parents with disabilities, and the effect of this bias on the already amorphous best interest of the child standard. Parents with disabilities have their child-rearing abilities evaluated with inappropriate and unadapted assessments as well as a lack of adaptive services and equipment. They often face significant barriers to retaining legal representation and participating in a meaningful way in the proceedings. These barriers are not just problematic in theory; they have practical ramifications right now. A national study conducted by Margaret A. Nosek and colleagues revealed that women with disabilities are significantly more likely than those without disabilities to stay in a bad marriage out of fear of losing their children.[587] Thus, the unnecessary obstacles and stereotypes plaguing the family law system for parents with disabilities have profound consequences for people with disabilities and their children.