Impact Feature Issue on Children with Disabilities in the Child Welfare System

Children with disabilities represent at least 15% of the child population in the United States (Committee on Education and the Workforce, 2005). How many are receiving services in the child welfare system is unknown, as disability is not universally recorded. It could be estimated that there is an equal representation in the system as in the population, yet two other important factors may cause an adjustment in this assumption. The first is that child abuse involving children with disabilities occurs at approximately 3.5 times the rate of abuse of children without disabilities (Sullivan & Knutson, 1998, 2000). Secondly, underreporting of abuse of both children and adults with disabilities is an enormous problem; researchers estimate that less than 30% of many types of abuse is ever reported (Protection and Advocacy, Inc., 2003). For example, it’s estimated that 90% of people with developmental disabilities will be sexually assaulted over the course of their lives – and children with any type of disability are almost twice as likely to experience sexual abuse as nondisabled children – but only 3% of the assaults will ever be reported (Davis, 2000). Thus, while we don’t know precisely how many children in dependency services have disabilities, we do know they are there, they are in need of such services, and that there may be many more in need of services than come to the attention of the system. Child welfare systems need to have protocols, practices, and procedures in place to assure excellence in service delivery for this population.

Barriers to such excellence have included a scarcity of training and educational programs preparing child welfare staff to recognize a child’s disability. Further, requirements of child welfare workers do not include assessment for disability unless specific services such as foster care placement are called for. Documentation of the child’s non-medical health care needs has not been mandatory. Yet the needs of children with disabilities for services matching their disabilities certainly are there.

Types of Disabilities Encountered in Child Welfare

Disabilities can be identified within nine categories: sensory, communication, mobility, intellectual, social, psychiatric, medical, orthopedic, and respiratory. A child may have one or more of these disabilities. “Developmental disability” is a category of disability defined by law as interrupting the normal developmental process. The Developmental Disabilities Act of 2000 (P. L.106-402) provides the federal definition, while most states have their own definitions designed to identify children who may qualify to receive supportive services. The federal law states: “Developmental disabilities are severe, life-long disabilities attributable to mental and/or physical impairments, manifested before age 22. Developmental disabilities result in substantial limitations in three or more areas of major life activities: capacity for independent living, economic self-sufficiency, learning, mobility, receptive and expressive language, self-care, and self-direction.” Developmental disabilities represent approximately 3-5% of all disabilities found among children and adults.

Children may be born with a disability, or may acquire a disability as a result of illness, accident or abuse. Studies show that of those children who have survived severe neglect, 52% retain permanent disabilities (Baladerian, 1990). Child abuse victims in general may acquire mental health conditions including posttraumatic stress disorder, anxiety disorders, depression, and dissociative disorders in addition to other consequences such as difficulty learning, and engaging with social skills. Adjustment disorders of all types may ensue. It must be noted that such conditions are often ignored when the child has a significant disability of another type.

Attitudinal and Knowledge Barriers

Most people in the disability field agree that the most prominent barrier is negative societal attitudes. Individuals with disabilities are perceived as being valued “less than” their non-disabled counterparts. In fact anyone with a “difference” from what society values for height, weight, verbal fluency, youthfulness, beauty, athleticism and so forth is somehow seen as “less than.”

When one is among the “highly valued” in society, it can be difficult to understand why it is so important to those labeled “less than” to assure that services are available, or why announcing that one’s services are available to that population is even needed. Yet, individuals with disabilities and their families are well aware that generic services are often denied to them. For example, a child sexual assault survivor with intellectual disabilities may be denied mental health services with this statement at the mental health center – “We don’t serve children with mental retardation” – although their service is provided to all other survivors of sexual assault. Why not? In part, just plain prejudice, usually based, like any other prejudice, in lack of personal experience with individuals with disabilities. In part, a lack of understanding of the needs of the child. In part, a failure to procure training in how to serve children with intellectual disabilities. There may also be fear on the part of practitioners about individuals with disabilities, as well as fears regarding their own skills.

Yet, it is the mission of the child welfare system to serve all children. Conversely, those agencies that focus their services to children with disabilities are frequently unaware of the many services provided by child welfare. There is a huge gap between these two service systems that needs to be closed. There is no apparent lack of willingness, only a need for a mechanism for making collaboration happen!

Strategies for Excellence in Service

In order to remedy this problem, and equip child welfare professionals and systems to not only serve children with disabilities equitably, but with excellence, the following seven strategies are recommended. Implementing these within one’s own community will strengthen both sides of the service delivery system in that disability service providers will be included in ongoing planning and service delivery of child welfare services, while child welfare professionals will be included in ongoing service delivery and planning of disability related support services. The seven strategies are:

• Nothing about us without us
• Spirit and letter of the ADA
• Teach disability awareness
• CREDO (Compassion, Respect, Empathy, Dignity, Open-mindedness)
• Recognize when you don’t know and ask
• Use the Web and listservs
• Meet monthly with disability services

Nothing About Us Without Us

“Nothing about us without us” is a theme of self-advocates. The perspective of individuals with disabilities cannot be overestimated. Including individuals with disabilities in all phases of service delivery planning can save enormous amounts of time and money. By “building it right” from the start, costly modifications to physical site and service delivery products are avoided, not to mention the time and effort expended to doing things twice. The implementation of this is to include qualified individuals with a variety of disabilities, and those who represent children with disabilities, in all planning for physical sites; in all planning for service delivery procedures, protocols, and policies; in board membership; and in training activities.

Spirit and Letter of the ADA

In 1990, the Americans with Disabilities Act was passed, with final compliance to be in place by July 1994. Yet, many organizations and agencies still lag behind. It is not just the letter of the law that requires compliance, but also the spirit of the law that needs to be adopted by all who serve members of the public. Full ADA-guided accessibility refers to implementation of both the spirit and letter of the law and at the agency-level can

include adding “serving people with disabilities” into all informational and promotional materials for clients, the public and potential employees; assuring comprehensive physical accessibility throughout agency sites (and wherever else services are offered); and assuring comprehensive program accessibility throughout all services that are provided. Help with accessibility compliance is available to agencies from qualified ADA compliance support agencies and consultants in each state (for information see www.ada.gov). Begin an ongoing campaign to conduct outreach activities to disability service providers, disability advocates, and families of children with disabilities in your area when you are ready to serve effectively and accessibly.

Teach Disability Awareness

Prior to employment or within six weeks,all staffshall have completed disability awareness training. This includes the highest level of administration and the volunteers, clerical and other support staff. A cost-effective method of gaining information, community positive regard, and skill enhancement is to hold meetings at disability service agencies, and at advocacy and self-advocacy organizations, and to invite them to participate in your regular staff and training meetings at least monthly. For example, you can rotate your meetings between these agencies and organizations during the year: Centers for Independent Living; services for people who are Deaf/hard of hearing, blind/visually impaired, and DeafBlind; services for individuals with developmental disabilities, mental illness, and mobility disabilities; self-advocacy organizations of persons with disabilities; and disability advocacy organizations. By rotating in this way, you will include people with most types of disabilities and their families and establish valuable relationships throughout the disability community.

CREDO

Adopt “CREDO” as your overall working philosophy to interact with children with disabilities and their family members: Treat each child with...

C- Compassion

R- Respect

E- Empathy

D- Dignity

O- Open mindedness to needs of the child

Recognize When You Don't Know, and Ask for Help

Be aware when you run into a situation in which you feel you are in unknown territory. Recognize that it is fine to not to know information and to not have skills yet. However, it is not acceptable to fail to seek guidance, or to generate new “techniques” without regard to how these may affect the client. For example, it is not okay to fail to interview the child with a disability and only interview the adults without disabilities. Seeking guidance from your supervisor, local community experts or specialized service providers is a strength, not a devastating personal failure!

Use the Web and Listservs

Make sure your agency’s Web site is “Bobby Approved” – meets proven standards for being accessible for people with disabilities. Utilize existing child abuse and disability resources online, such as Arc Riverside’s CAN DO project (http://disability-abuse.com/cando), and other listservs for consultation, guidance, support, and advice and to learnabout new resources as soon as they are available such as videos, curricula, training programs, and conferences. Participate in online learning experiences, such as the Arc-Riverside First Professional Online Training Program on Abuse and Disability. Make sure to participate in the Arc Riverside National/International Conferences on Abuse and Disability, the only ongoing national conference on abuse and disability.

Meet Monthly with Disability Services

Hosting or attending monthly collaborative meetings with all agencies in your area that provide services to children with disabilitieson a regularbasis will ensure a better response to children with disabilities who’ve entered the child welfare system, and educate disability and other human service providers to the services provided by child welfare agencies. Conduct cross trainings between child welfare and disability service providers.

Conclusion

Through these steps child welfare and disability service agencies can collaborate to ensure excellence in service delivery to children with disabilities. The work of child welfare system professionals demands awareness and skills in many areas, with recent particular demand for cultural and language diversity expertise. Part of recognizing and responding appropriately to diversity is to assure that the needs of children with disabilities and their families are effectively addressed in child welfare services.