By Cynthia Weaver, DMin, MDiv, ACSW, LCSW
|Children With Disabilities in the Child Welfare System|
|Death and Dying|
|Caring for the Caregivers|
Work with this highly vulnerable population requires specially trained, compensated, and cared-for social workers.
Case Notes: Dated October 24
Phone call received from the Children’s Hospital social worker with a referral of baby Kathy, 3 months of age and recently removed from her home because of physical abuse. Kathy is diagnosed with shaken baby syndrome. I need to find a placement for Kathy as her parents are incarcerated and there are no family members available. The hospital social worker states that Kathy will be ready for discharge in three days. Will I be able to find a foster home equipped to care for baby Kathy’s special needs?
Phone message left from Jacob’s foster mother communicating the doctors’ findings that his cancer has returned. Twelve-year-old Jacob has already had his right leg amputated and is wearing a prosthetic device that he has turned into a “weapon” when his peers tease him. His foster mother shares that she is pregnant with their first child and fearful for her baby’s safety as Jacob continues to act out. She is asking for his removal from their home. I have already moved Jacob to seven different homes during his seven years in foster care. I have no idea where to look next for a home for him.
I listen a second time to the next phone message, as it is difficult to understand because the speaker is crying uncontrollably. I learn that Barbara is crying about her difficult decision. I have worked with Barbara since the birth of her daughter, Sarah, a child diagnosed with muscular dystrophy who recently acquired a feeding tube. Barbara is a good mother, learning how best to care for a child with multiple special needs. I’ve set up in-home services for her so her child would not require institutionalization. Today, her message tells me that she left her daughter in the lobby at the Children’s Hospital, exhausted physically and emotionally from years of her care as a single mother. Barbara says she is leaving the state and not to look for her.
I arrive at the multidisciplinary meeting to discuss Jamal’s emancipation from the care of Children and Youth Services to the County’s Adult Services. The history was that no one expected Jamal to live—as an infant, he was diagnosed with HIV/AIDS. Both his parents died from the disease and there were no relatives to provide care. Multiple foster homes met his needs as a young child. With new medications and technologies, Jamal had a number of very good years. However, recently the disease has taken hold again, with Jamal experiencing numerous hospitalizations and near-death experiences. His most recent years have been spent in group homes, skilled nursing facilities, and hospitals. Next month, Jamal turns 21 and this meeting is an attempt to transfer his care to those in adult services. This is a difficult meeting for me as his social worker, the nurses who have provided continuous care, and his personal aide, because we know Jamal will not likely have the same level of care we’ve been able to provide for him as a child. Jamal appears to know this because during the last few months, he has become depressed and has periods of self-mutilating behavior. There are many providers sitting around the table as we take the next few hours to discuss Jamal’s placement and services at the adult state-funded nursing facility.
On a continuum of vulnerability, children and adolescents with disabilities in the child welfare system are a highly vulnerable population. When a child or adolescent enters the child welfare system as a result of abuse, neglect, and/or abandonment, a comprehensive assessment needs to be completed to determine appropriate services and interventions to address the child’s special needs as a result of this trauma and find an appropriate placement that can best meet the needs of the child/adolescent.
When a child/adolescent with a preexisting disability is separated from the parent/family and enters the child welfare system, already established medical and educational services for the child are often put on hold until placement is secured, records are gathered, and services with new providers are initiated in the geographical area of the placement. The child welfare worker, therefore, has a key role in identifying and accessing appropriate services for children/adolescents with disabilities and their families (biological and foster) within the child welfare system and in the medical and educational systems. To maintain children with disabilities in family and community settings, supportive, developmental, and therapeutic services must be provided to this population of children and to their biological, foster, and adoptive families (Hughes & Rycus, 1998).
A broad definition of a developmental disability is a condition or disorder—physical, cognitive, or emotional—that has the potential to significantly affect the typical progress of a child’s growth and development or substantially limits three or more major life activities including self-care, language, learning, mobility, self-direction, capacity for independent living, and/or economic self-sufficiency (Federal Developmental Disabilities Act of 1984). This condition must be congenital, or identified, or acquired prior to the age of 22. Genetic problems, related anomalies in reproductive cell division, traumatic brain injury, auto accidents, and diving are common causes of injury in children and adolescents. In addition, blows to the head in child abuse or shaken baby syndrome may cause central nervous system damage. Mental retardation, cerebral palsy, paralysis, and seizure disorders are possible outcomes of head trauma.
Children/adolescents who are abused or neglected are at increased risk for developmental delays or disabilities. According to Baladerian (1992), “more than 50% of child victims of neglect sustain permanent disabilities, including mental retardation and other forms of learning and cognitive disabilities” (Prevent Child Abuse America, 2002). In a national study by Crosse, Kaye, and Ratnofsky (1993), they found that children with disabilities were 1.7 times more likely to be maltreated than children without disabilities and a study conducted in 1997 in Omaha, NE, found that children with disabilities were 3.4 times more likely to be maltreated than were children without disabilities (Sullivan & Knutson, 2002).
Research indicates that 45% to 50% of children in the child welfare system have a chronic health problem or diagnosed disability (American Humane Association, 2000). A 1997 study by the Child Welfare League of America (1999) revealed that 94% of the children placed for adoption in 1996 had special needs as related to physical disabilities, serious emotional and behavioral problems, prenatal exposure to alcohol and other drugs, and HIV/AIDS. Often, these children’s special needs remain unmet, both prior to and throughout the often lengthy period that they receive care in child welfare agencies (American Humane Association, 2000).
There is an increased need for competent, knowledgeable professionals who can advocate for children and adolescents with disabilities and their families. Trained social workers will understand the challenges that face families of children/adolescents with special needs and assist them in securing resources and in communicating their needs. Advocacy on behalf of children and adolescents with special needs requires that social workers be skilled and empowered to address areas of discrimination and inadequate resources, with the same zeal a dedicated parent would seek services for their child.
Training must go further than traditional competency training for child welfare workers. Social workers need a comprehensive understanding of legislation surrounding the Americans with Disabilities Act and how to effectively address barriers that inhibit their clients from services for their special needs. Such barriers could be physical, such as access to buildings, or medical, such as limited medical coverage related to insurance coverage or lack thereof.
Additional training in the areas of mental retardation, medical social work, developmental delay, and early intervention will better assist the child welfare worker who has the responsibility of finding and supporting appropriate placements for children/adolescents with disabilities. Social workers servicing this population will benefit from having the advanced training of a master’s degree in social work to most effectively identify and work with the various systems involved. Training and networking with medical, mental health/retardation, and community resources is a necessary prerequisite for effectively caring for children with disabilities within the child welfare system (Weaver, Keller, & Loyek, 2005).
Child welfare workers carrying caseloads of children/adolescents with special needs should have training in areas of medical interventions such as CPR for infants and children for safety and competence when apart from medical providers—transporting children to visits and medical appointments. Dependent on the special needs of the child/adolescent, the social worker will need additional training in specific areas, such as the use of apnea monitors, wheelchairs, lifts, ventilators, and oxygen, even if a medical provider is present to intervene or is providing one-on-one care.
The social worker’s knowledge of such equipment and interventions will enable the worker to have a more secure level of competence and comfort in working with the child/adolescent, as well as be more credible and accepting to foster parents and birth parents who are already required to have such expertise to care for the child on a daily basis. Child welfare social workers benefit from training in the area of family systems and the dynamic the child/adolescent with special needs creates among the parent(s), siblings, and extended family members. Working with the child/adolescent with special needs involves the understanding, sensitivity, and interventions with the “whole” family.
Social workers benefit from having an education and a level of comfortability surrounding the emotional and spiritual underpinnings of death and dying, an area often encountered when working with children and adolescents with disabilities. Child welfare workers should have resources to meet the family’s needs should a child die while in care, such as a knowledge of available funding streams for funeral and burial, the names of competent religious leaders to perform services, and funeral director(s) who can provide financially reasonable and sensitive services for marginalized populations.
Social workers benefit from having an understanding of various religious/spiritual and cultural beliefs, an area often encountered at the time of death. Social workers benefit from the ability to explore their own moral/religious/spiritual beliefs surrounding medical ethics, quality-of-life issues, living wills, etc. before working with such populations to avoid countertransference. If they want to retain competent social workers in their agency, administration must understand the impact the dying process and possible death of a child/adolescent has on the caseworker.
Internal agency support through competent supervision, mental health time off surrounding the death of a child/adolescent, and agency group process are successful administration interventions for the longevity of social work staff. The availability and funding for outside, confidential counseling to support social workers in the area of bereavement will help identify possible areas of countertransference and address the social worker’s own grief and loss after providing support to children and their families (Weaver, 1999).
Creativity can enhance the work surrounding children with special needs as one works outside the box of traditional child welfare. The use of animals with populations identified as “special needs” (elderly, disabled, mental retardation, mental health, prisoners) has proved insightful to their specific needs (Fine, 1999; Delta Society, 1996). Connecting children/adolescents with special needs to animal-assisted activities, therapies, and interventions provides children/adolescents in the child welfare system with not only physical assistance, but the much-needed emotional bonding and unconditional love that is often taken from them when removed from their biological families (Weaver, 2003). The creative use of agency rituals—Arbor Day and planting a tree in memory of a child/adolescent, a memory wall of names to be remembered, an agency gazebo as a safe place to retreat to privately grieve apart from the group—can demonstrate to child welfare workers providing direct care the sensitivity administration has to the effect the death of a child on their caseload has to them.
Caseloads containing children/adolescents with disabilities should be smaller for social workers so effective time and energies can be spent in securing additional training and networking with other agency resources. The time spent on a child/adolescent with special needs can easily triple that of a nonspecial needs case, especially during times of medical emergency, hospitalizations, and/or replacements. Training and networking with medical, mental health/retardation, and community resources is a necessary prerequisite for effectively caring for children/adolescents with disabilities within the child welfare system.
Child welfare workers carrying caseloads of children/adolescents with special needs should be identified at a higher level than that of an entry-level social worker, with an increased level of financial compensation to equal the level of special training secured and level of risk taken in providing services to this vulnerable population.
Likewise, child welfare workers carrying cases of children/adolescents with special needs should be afforded the highest level of legal support should litigation be directed towards them during the review of the death of a child while in care. Social workers caring for vulnerable populations often themselves become vulnerable in a highly litigious society and will frequently decline such a sensitive caseload for fear of long-term ramifications to their professional career.
During the past 20 years, the number of children surviving many diseases and illnesses has greatly increased because of the advancement of medical technology and new medications. This is something about which we, as an industrialized society, are proud. However, we also need to understand the implications for the longevity of life for children/adolescents with disabilities that find themselves growing up in the child welfare system, often separate from a consistent, competent parent/caregiver.
The consistency and competency of the child welfare social worker is as critical as the advanced medical technology and new medications for the quality of care for this vulnerable population. The fragility and vulnerability of this population of children/adolescents require the utmost of our sensitivity, advocacy, expertise, and creativity (Weaver, Keller, & Loyek, 2005).
American Humane Association (2000). Meeting the needs of young children in foster care. Retrieved May 23, 2004, from http://www.americanhumane.org.
Baladerian, N. J. (1994). Abuse and neglect of children with disabilities. ARCH National Respite Network and Resource Center. Fact sheet Number 36. Retrieved June 24, 2003, from http://www.archrespite.org/archfs36.htm.
Child Welfare League of America, 1997.
Crosse, S. B., Kaye, E., & Ratnofsky, A. C. (1993). A report of the maltreatment of children with disabilities. Washington, DC: National Center on Child Abuse and Neglect, Administration on Children, Youth and Families, Administration for Children and Families, U.S. Department of Health and Human Services.
Delta Society (1996). Standards of practice for animal-assisted activities and animal-assisted therapy. USW: Delta Society. Federal Developmental Disabilities Act of 1984, Pub. L. No. 98-527.
Federal Development Disabilities Act of 1984.
Fine, A. H. (1999). Handbook of Animal-Assisted Therapy: Theoretical Foundations and Guidelines for Practice. New York: Academic Press.
Hughes, R. C., & Rycus, J. S. (1998). Developmental disabilities in child welfare. Washington, DC: CWLA Press.
Prevent Child Abuse America, 2002.
Sullivan, P. M., & Knutson, J. F. (2002). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24(10), 1275-1288.
Weaver, C. J. (1999). Supporting the spirituality of children in foster care and their caregivers. In: Silver, Amster, & Haecker, ed. Young Children and Foster Care: A Guide for Professionals. Baltimore, MD; Brookes Publishing Co. pp. 139-157.
Weaver, C. J. (2003). Sinclair’s Listening Ears: The Journey of a Feline Social Worker. Lanham, Maryland: The University Press of America.
Weaver, C. J., Keller, D., & Loyek, Ann (in press 2005). Children and adolescences with disabilities in the child welfare system. In: Mallon, G. P., & Hess, P., eds. Child Welfare for the Twenty-First Century: A Handbook of Children, Youth, and Family Services: Practices, Policies, and Programs. New York: Columbia University Press.
Reprinted with permission of Social Work Today.