Guardians ad litem (GAL) ​​are tasked with the unique role of representing a child’s wishes and their best interest. Everything a GAL does is to ensure that children have safe environments to grow up in and the most meaningful relationships possible with their families.

It is important that GALs understand the impact a child with disabilities has on their family, so they can effectively be an advocate for the child.

Every professional who works within and around the child welfare system needs the tools and understanding to help children with disabilities and their families thrive.

The Problem: Undercounting Children with Disabilities

According to the Administration for Children and Families Children's Bureau, U.S. Department of Health and Human Services, any statistic about the number of children in the child welfare system with disabilities is often considered by welfare practitioners and researchers to be an undercount. The varying definitions of disability, lack of accurate data, and lack of specific training to identify disabilities in children prevent a precise count.¹

A report by the Wisconsin Department of Children and Families (DCF) says that more than one-third of children who enter the child welfare system have some type of disability. This data is upsetting but unsurprising, considering that children with disabilities are more than three times more likely to be abused or neglected than children without disabilities.²

Why is this the case?

Children with disabilities require additional supervision and care, which can increase the stress on their families and leave them feeling socially isolated. This is only exasperated by the lack of services available to a family to meet the child’s needs and inadequate support to alleviate the demands on parents.³

The financial strain is another major cause of stress for families as children with disabilities often require more medical care, therapy, and equipment than children without disabilities. Families can also experience more emotional stress because of the time it takes to coordinate care for a child’s education, medical, and behavioral needs. ⁴

These families deserve community-based resources to help them thrive and give the best possible care to their children.

The child welfare system needs to be better equipped to provide assistance to children with disabilities and their families. The health disparities faced by this group of people can be decreased if we take a systemwide approach to remedying these harms.

Increase Training, Experts, and Assessments

According to DCF:

Child welfare workers do not have the clinical training and knowledge, and cannot expected, to be experts in all types of disabilities. Rather, child welfare workers need to have timely access to disability-related experts and resources to assist and support them.⁵

Child welfare professionals also need to do a comprehensive assessment of the child and their specific needs. Comprehensive assessments go well beyond determining if a child has a disability and can improve case work practice.⁶ They address the child’s level of impairment a child and give a more complete assessment of how the disability affects the child:

Understanding how children’s disabilities affects their daily functioning enables parents, caregivers, and child welfare professionals to build on strengths, identify vulnerabilities, and connect children to services that are most beneficial.⁷

Better Support for Families

Several strategies that can be used to provide support to the parents of children with disabilities and prevent out-of-home placement.

It is essential to ensure that parents have access to training and education programs, support groups, and other services to learn and build skills to give their child the best possible care while attending to themselves and the whole family.⁸ Peer support with other parents of children with disabilities can also help with the feelings of isolation.

Other services that provide direct care to children with disabilities can alleviate stress and give a break to parents. Every Child Inc. in Austin, Texas, is one organization that connects children with disabilities to support families who provide family life for a child when their parents are unable to do so full time. Support families are trained to care for the individual child, and the child benefits from family life versus life in a residential facility.

Shared parenting is viewed as an alternative to residential placement or foster family placement. Unlike foster placements, families do not give up their rights when their children are placed with a support family, and can instead share parenting through a mutual agreement.

Another support system that should be more widely available to parents is respite programs where trained professionals provide temporary care for children with disabilities. This care can be in-home or in the provider’s home, a day care center, a group foster home, and homes of other families that provide respite for each other.

Better Data Is Needed

We need a better national approach to data collection.

Currently, child welfare practitioners and researchers consider data reported by the states through the federal Children’s Bureau’s National Child Abuse and Neglect Data System (NCANDS) to be unreliable and that it undercounts the true numbers of children with disabilities in the child welfare system.⁹

This is for three main reasons:

(a) states are not required to collect this data, (b) the data is based on reporting by the child welfare workers who may not be trained to identify or assess, or may not document, that a child has a disability, and (c) receipt of child welfare services is not contingent on assessment and documentation of a child’s disability.¹⁰

In 2016, the American Psychological Association’s Council of Representatives adopted the “Resolution on the Maltreatment of Children with Disabilities,” which states that reliable data is “essential for the development of public health programs and services.”

The resolution recommends a national strategy to accurately count the number of children with disabilities who are maltreated. This would be accomplished by the federal government standardizing definitions of disability and child maltreatment, data collection methodologies, and recordkeeping across all the states and territories.

Conclusion: What Will Help GALs

When disabilities in children are more fully assessed and reported, and when data becomes streamlined and publicly available, it would give child welfare professionals, researchers, and all levels of government more accurate information to work with – and allow GALs to better represent the best interests of the child.

This article was originally published on the State Bar of Wisconsin’s Children & the Law Section Blog. Visit the State Bar sections or the Children & the Law Section webpages to learn more about the benefits of section membership.

Endnotes

¹ “The Risk and Prevention of Maltreatment of Children with Disabilities,” January 2018. Child Welfare Information Gateway, Administration for Children and Families Children's Bureau, U.S. Department of Health and Human Services.

² “Children with Disabilities: Preventing Abuse and Neglect,” Wisconsin Department of Children and Families, March​ 2019.

³ “Report on Children with Disabilities Served by the Child Welfare System,” Wisconsin Department of Children and Families, Dec. 30, 2016.

⁴ “Feature Issue on Children with Disabilities in the Child Welfare System​,” Institute on Community Integration at the University of Minnesota, Fall/Winter 2005/2006.

⁵ Wisconsin Department of Children and Families, supra note 3.

⁶ Child Welfare Information Gateway, supra note 1.

⁷Id.

⁸ Institute on Community Integration, supra note 4.

⁹ Wisconsin Department of Children and Families, supra note 2.

¹⁰ ​Id.