Chapter 9: Lack of Adapted Services, Adapted Equipment, and Parenting Techniques in Child Welfare and Family Court

 The previous chapter discussed the crucial need for disability expertise and observation of parent-child interaction in appropriate settings. This chapter focuses on some of the complex adaptation issues that affect overall involvement with child welfare and family court and assessment in these systems.

Adaptations and adapted services are integral to the lives of parents with diverse disabilities and to appropriate assessment and appropriate intervention in custody situations. The time-limited opportunity to document a parent’s potential and progress increases the need for specialized practice that is knowledgeable about adaptation issues. Disability accommodation and adaptation needs should be clarified from the outset of involvement with child welfare and family court systems, so that adaptation is appropriate throughout the process—in communication, settings for meetings, visitation and assessment, case plans, parenting evaluations, and services.

Many parents with disabilities who are involved in custody disputes have not previously benefited from the adaptive resources and supports of disability and deaf cultures and specialized programs owing to a worsened or new disability, not identifying as having a disability, multiple disability, isolation, poverty, dependence on nondisabled partners or family members, or even abuse or domestic violence. Numerous issues may have to be addressed to level the playing field during involvement with child welfare or family courts.

Communication Adaptation Issues

Communication must be adapted for some parents with disabilities. Communication access is often a barrier for parents who are deaf or hard of hearing. For instance, deaf parents may be reluctant to request a sign language interpreter, fearing that this will undermine their credibility and militate against gaining or retaining custody of their child.

Some professionals may assume that the deaf parent can read lips, but most deaf people are not proficient at lip reading. It is estimated that even the best lip readers catch only 25 percent to 30 percent of what is spoken, and this percentage can be affected by context and environment as well as the extent of the person’s hearing loss and the age at which he or she became deaf.[645] Many deaf people are not proficient at written English, and this too can undermine effective communication with those who do not use sign language.[646]

Parents who are blind and those who have intellectual or other cognitive disabilities (e.g., traumatic brain injury, stroke, or dementia) that limit their ability to read are often sent crucial printed material in custody situations, such as notices of required meetings or hearings. Parents with cognitive or intellectual disabilities often require “translators” to facilitate their comprehension of crucial processes, to ensure that their consent to assessment is informed, and to make their participation in court meaningful.

To be effective, communication during reunification services must be individualized and adapted to the parent’s processing abilities. For instance, to absorb information, a parent with auditory processing disabilities might need a reduction of background noise and face-to-face communication, without glare from a window behind the speaker. Many examples are available of adaptations for parents with intellectual disabilities from specialized programs with positive long-term outcomes.[647] They include using multiple modalities to convey important information (e.g., talk, video, charts, photos, demonstration, and teamwork between parent and provider during practice of tasks or behaviors), and practicing during parent-child interaction in varied settings (home, community) to support integration and generalization of information. Neuropsychologists and cognitive rehabilitation specialists are other sources of cognitive adaptations. Their assessments can identify strengths and difficulties, thus reducing trial-and-error attempts to clarify the most effective modes of intervention.

At the outset of involvement with the child protection system, a parent with a head injury received an assessment from a speech and language therapist specializing in cognitive rehabilitation, which contained many practical communication suggestions to compensate for her significant auditory processing problems. These suggestions were ignored throughout the reunification services, undermining the effectiveness of the services. She was described as unable to benefit from services, and termination of her parental rights was sought.[648]

Adaptations and Assessments

Appropriate adaptations are integral to parenting assessment, not only in the choice of assessments and the manner of conducting formal assessments but also to level the playing field before and after assessments. It is crucial that evaluators cite the limitations of their assessments with regard to adaptive issues. Evaluators need to understand the adaptive resources used by parents with disabilities and the appropriate practice with such parents and their children to determine whether the parent could have been expected to benefit from services previously provided. Evaluators should review records and interview providers with this in mind, and their reports should reflect an assessment of the disability-appropriate incorporation of adaptations during previous practice. Any recommendations must be informed by disability and adaptation expertise.[649]

Expert witness analysis of child welfare and family court records of custody cases involving parents with disabilities has found a pattern of inappropriate disability practice; in particular, a lack of adaptations and failure to identify this problem in the parenting evaluations in the records.[650] A study of child welfare evaluations found that evaluators were largely unable to identify appropriate or adapted interventions for supporting or strengthening the parenting capacities of people with disabilities.[651]

However, new APA guidelines regarding practice with people with disabilities reflect increased awareness of the role of adaptations and accommodations:

“When conducting psychological assessments in clinical settings, it is essential to consider the interaction between the individual with a disability and his or her environment.... When the client uses assistive technology and accommodations, it is advisable to incorporate them into the behavioral observation to avoid capturing unaccommodated disability rather than the target behavior.[652] …This [functional] assessment focuses on social behavior, activities of daily living, family... communication, motor skills…and ensures disability accommodations in an assessment setting. For example, for restrictions to be functionally assessed, the home environment needs to be appropriately adapted.”[653]

Studies of adaptations for parents with physical disabilities document the effect of such equipment on parental functioning and infant-parent interaction. These demonstration projects designed, provided, and evaluated the effect of baby care adaptations to ease obstacles at the outset of parenting.[654] Adaptations included adapted cribs, baby care trays on wheelchairs, walkers with baby seats, wheelchair-accessible diapering tables and highchairs, lifting harnesses, and accessible childproofing. Pre-and post-videotaping analysis showed that such adaptations increased parents’ functional care abilities and involvement, decreased pain and fatigue, and enhanced infant-parent interaction. An overarching conclusion from these studies and subsequent clinical intervention and evaluation is that “one cannot assess the potential of a parent with a significant physical disability and an infant without first providing whatever adaptive techniques and equipment make it possible for interaction to occur and the infant-parent relationship to develop.”[655]

A parallel process that developed adaptations for parents with intellectual disabilities[656] concluded that “one cannot discern the full potential in parents with cognitive disabilities without providing adaptations that are individualized with the parent’s functioning.”[657] Obstacles and adaptive solutions used by mothers with vision disabilities were also documented in research and in a resource guide compiled from parents’ suggestion.[658] These adaptations have been found to be particularly useful for parents who are newly blind.

Lack of Adaptation Expertise Linked to Exaggeration of Needs

The lack of disability expertise and provision of adapted and appropriate services leads to assumptions that parents with disabilities cannot benefit from services or will require long- term, 24-hour supervision. When such supervision is not available, unjust removals or custody arrangements may result. It is particularly common in child welfare custody cases involving parents with intellectual disabilities that generic services are offered that are claimed to be ineffective in producing improvements in parental functioning. It is then argued that the parent is unable to benefit from services, and TPR is sought. However, specialists on parents with intellectual disabilities have emphasized that appropriate adapted services can result in progress and positive outcomes.[659] All too often, parents with intellectual disabilities have experienced inappropriate services—they are sent to standard parenting classes without home-based parent-child intervention or have numerous short-term, uncoordinated providers who lack expertise about their specialized needs.[660]

Child welfare and family courts might assume that 24-hour supervision or assistance will be required over the long term, even for parents whose physical disability (e.g., paraplegia) is quite manageable during parenting, without an understanding of the adaptations and modifications that support independence in the home. Twenty-four-hour supervision might also be assumed to be a long-term requirement for parents with psychiatric disability, based on diagnosis rather than individualized assessment and observation of parent-child interaction. Negative assumptions about prognosis might not take into account the effectiveness of infant mental health services or other community supports adapted to the needs of parents with psychiatric disabilities.[661]

Avoiding Bias Regarding Adaptive Supports

Lack of familiarity with disability supports and adaptations can lead to bias in practice. Parents with physical disabilities in both family court and child welfare cases have been negatively evaluated regarding their capability because they use personal assistants to compensate for functional limitations.[662] It would be more appropriate to assess how the parent maintains connection to the child and authority in the eyes of the child during assisted physical care.[663] Similarly, parents with intellectual disabilities have received negative evaluations because they use independent living services or reside in supported living residences.

Assessment Setting Issues

Parenting evaluations and observations are frequently conducted in psychologists’ offices, without adaptations to the settings.[664] A parent who is blind is at a profound disadvantage in an unfamiliar environment as opposed to the home, where organization and adaptations can support parenting. Similarly, the functioning of parents with physical disabilities can be dramatically enhanced by their home modifications as well as by parenting and general disability adaptations. The absence of accustomed environmental adaptations creates a distorted picture of their parenting. The functioning of parents with intellectual or other cognitive disabilities also can be compromised in an unfamiliar setting owing to memory and organization issues.

For example, in one custody case, distraction problems of a parent with an intellectual disability were intensified during an in-home observation that involved numerous professionals. In another observational assessment, a social worker was present who had been consistently negative about the potential of a mother with a psychiatric disability. Her presence was stressful and preoccupying for the mother; as a result, the mother’s usual sensitivity toward her baby was reduced during the session.[665]

Piloting Adaptations During Assessments

Knowledge of adaptive options is necessary so they can be introduced and their potential impact observed during assessment. Piloting adaptive strategies with a parent who has an intellectual disability can provide information about the parent’s processing issues and acceptance of intervention. For instance, child welfare involvement owing to an infant’s “failure to thrive” is not uncommon when parents have intellectual disabilities, owing to their problems with reading infant cues, understanding time, and measuring and mixing formula. Given the urgency of this situation, assessment would include adapted intervention to establish appropriate feeding while clarifying what led to the difficulty.

Parents with intellectual or psychiatric disabilities often live in households with other adults who co-parent. It can be difficult to discern the potential functioning of the parent with the disability when the co-parent is present, as the natural adaptation in the family is to fill in the gaps, sometimes more than is necessary or helpful for the role of the disabled parent with the child. During assessment, a crucial strategy can be observing the parent with the disability and child without the presence of the co-parent.

Providing baby care adaptations for a parent with a physical disability can produce rapid change in parental functioning and infant-parent interaction. Even piloting limited adaptations can be informative about potential. For example, in a child welfare case involving a mother with significant cerebral palsy, the psychologist conducting the evaluation speculated that the lack of mutual gaze between mother and baby was likely due to the intrapsychic pathology of the mother. However, no one had set up a physical situation in which the mother and baby were comfortably located face-to-face at an appropriate distance from one another to allow mutual gaze to develop. The disability specialist simply attached a laptop tray to the mother’s motorized wheelchair and positioned the baby on a pillow on the tray (with pillow and baby secured by a wide Velcro strap); mutual gaze between mother and baby began immediately.[666]

Addressing disability obstacles can clarify underlying psychological or relational issues that can be targeted in services. For instance, after baby care adaptations made it feasible for a mother with a significant physical disability to provide care for her baby, the mother’s problem with understanding her baby’s experience was revealed and addressed in infant mental health services.[667]

Impact of Separation on the Natural Mutual Adaptation Process

Separation as a result of foster care or custody arrangements is recognized as a stress, particularly for infant-parent relationships. However, there are additional issues when a parent has a disability or deafness. Insufficient contact between the parent and infant can compromise their mutual adaptive process. Research videotaping care from birth through toddlerhood documented a natural mutual adaptation process between mothers with physical disabilities and their babies over time. Infants as young as one month began adapting to their mother’s disabilities; for example, by holding still and curling up like a kitten during lifts.[668] In later clinical services, it was found that out-of-home placement interfered with the natural adaptation process. For instance, a baby developed an aversion to the sound of his mother’s motorized wheelchair after he was removed from the home, although it is typical for babies to enjoy and be drawn to the sound of their parents’ wheelchairs.[669]

Temporarily removing a child from his or her deaf parent(s) interrupts natural adaptations between parent and child, as well as effective communication within the family. Hearing children of deaf parents may be discouraged from or even denigrated for using sign language by people outside the home, including hearing neighbors and relatives. Prolonged lapses in developing bilingual skills can significantly undermine the child’s ability to effectively communicate with their deaf parent(s), which can have lifelong consequences.[670]

Adaptations During Reunification Services

Because of the lack of expertise regarding disability and adaptations, reunification services provided by the child welfare system are often inappropriate and ineffective. A disability specialist describes working with a mother with very high quadriplegia (she could control movements only above her shoulders). The specialist was engaged by child welfare after the child was six months old. Up to this point, the mother had had no services that were knowledgeable about or appropriate to her disability, and she had no links to the disability community. She had been sent for urine testing to a site that would not deal with her catheter and had been expected to use buses to get there. She lived in a housing project where her motorized wheelchair had been stolen—when the disability specialist arrived, the woman was sitting on a sofa.[671]

“A young African-American mother with quadriplegia had had her baby removed at birth after testing had shown prenatal substance abuse. The social worker described the mother as forming no relationship to her baby despite weekly visitation. She thought the mother was psychologically incapable of forming a relationship with her child. In the six months since the baby had been born the mother had been provided no assistance in order to make it possible for her to hold or care for her baby in any way. Everyone, including the mother, just assumed this was impossible. The able-bodied grandmother did the care or left the baby in a playpen during the visits. During the first visit I saw a depressed mother who indeed appeared estranged from and disinterested in her baby. But when I showed her videotapes of parents with disabilities and their babies—images of possibilities—she asked if I could help her hold and feed her baby. So in the second visit, with a variety of frontpacks and pillows, she was able to hold her baby for the first time. She tenderly nuzzled and murmured to her, caressing with her lips, greeting her baby for the first time as mothers do immediately after giving birth.”[672]

Adaptations to Inform Visitation

Adaptations are often necessary to inform visitation decisions. For instance, a disability specialist’s input was sought by family court to clarify the appropriateness of visitation:

“In one case a nondisabled mother did not allow a preschool boy contact with his father during the father’s long hospitalization after spinal cord injury. The child had developed a fear of his father (associating him with monsters), so the mother argued that visitation was not in the child’s best interest. The father had extremely high-level quadriplegia and was receiving oxygen through a tracheal tube, so he could not speak with his child. A clinician specializing in disability introduced adaptations so the child and father could begin communicating nonverbally through play, first playing a computer game together, using switch-operated toys, and then painting pictures together (the father holding the brush in his mouth). The boy’s fear of his father’s disability equipment was addressed by allowing him to play in a motorized wheelchair. In a few sessions the child’s fears had subsided and he had begun to rediscover his father.”[673]

The Role of Interdisciplinary Expertise

Researchers have suggested that evaluators receive specific training on parenting with a disability and on the impact of disability-appropriate interventions and parenting adaptations on the parent child relationship.[674] Experts on disability and parenting have suggested a reexamination of the assumption that psychologists provide the highest quality assessments in these cases and have suggested the possibility of broadening the field of parental assessment to involve more interdisciplinary practice.[675]

According to the APA, “Psychologists are encouraged to consider a multidisciplinary perspective in assessing clients with disabilities.”[676] To address the limitations in the appropriateness of psychometric assessment tools for use with parents with disabilities—as well as the limited disability training, education, and experience among many evaluators—a multidisciplinary approach to assessment is encouraged. For example, a psychologist or neuropsychologist might work with an occupational therapist, speech and language therapist, or other disability and rehabilitation specialists. Assessments by occupational therapists have been found to be very helpful in custody situations involving questions about parental physical functioning and the potential of parenting adaptations. The Baby Care Assessment for Parents with Physical Limitations or Disabilities, an occupational therapy tool for evaluating baby care functioning, has been used both in child welfare and family court cases.[677]

Collaboration among practitioners from different disciplines can be especially important when parents have multiple disability issues. Specialists with varied disability expertise are needed to address adaptive obstacles and solutions for parents who have more than one category of disability; for example, blindness and physical disability or intellectual and psychiatric disability.

Implications for Adoption and Assisted Reproductive Technologies

Many of the concerns about practice with parents with disabilities in the child welfare and family law systems should be considered in the context of adoption and assisted reproductive technologies, which are examined in Chapters 10 and 11, respectively. Evaluation of the capability and health of parents with disabilities occurs in ART practice as well as in home studies in adoption. The disability expertise of practitioners making these determinations is questionable, as is their awareness of potential adaptive solutions. Occupational therapy evaluations using The Baby Care Assessment for Parents with Physical Limitations or Disabilities have been employed effectively in adoption. For instance, a woman with a physical disability experienced difficulty during the home study required for adoption. The social worker said she had serious reservations about the woman’s ability to parent, especially that she might drop a baby or be unable to catch a toddler who ran off. The woman—a leader in the independent living community—assumed that it would not be wise to express her dismay about the social worker’s speculations. Rather, she contacted a national center that provides technical assistance regarding custody issues of parents with disabilities. The center conducted a baby care adaptation assessment, using weighted dolls and adaptations that have proved helpful to other parents with disabilities. The mother provided the adoption agency with the assessment report, documenting capabilities and solutions to potential difficulties, as well as the center’s video and publication illustrating such adaptations in use by other parents. She successfully adopted a baby.[678]

Conclusion

Parents with disabilities who are involved in child welfare or family law proceedings regularly encounter a national dearth of resources to provide adapted services and adaptive parenting equipment, and to teach adapted parenting techniques. Even when such resources exist, dependency and family courts do not often use them. Adaptations and adapted services are integral to the lives of parents with diverse disabilities and to appropriate assessment and appropriate intervention in custody situations. Many parents with disabilities who are involved in custody disputes have not previously benefited from the adaptive resources and supports of disability and deaf cultures and specialized programs. They may have a new or worsened disability, may not identify as having a disability, may have multiple disabilities, may be poor or isolated, and may be dependent on nondisabled partners or family members. Abuse or domestic violence may also be factors in their failure to access resources and supports. Thus, a lot can be done during involvement with child welfare or family court to level the playing field. Many of the concerns about adapting practice with parents with disabilities in the child welfare and family law systems should also be considered in assisted reproductive technologies and adoption systems.

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