Youth with Disabilities Aging out of Foster Care: Issues and Support Strategies

Feature Issue on Children with Disabilities in the Child Welfare System

Published by the Institute on Community Integration (UCEDD) · Research and Training Center on Community Living Volume 19 · Number 1 · Fall/Winter 2005/06

From the Editors When children with disabilities and their families become involved with the child welfare system – with child protective services and/or permanency services – there is often a steep learning curve for the system as to how to best serve them. As complex as the needs are of any child removed from his or her family because of abuse or neglect, or because the family is unable to continue caring for the child, the needs of children with disabilities are even more complicated because they involve multiple systems – the disability services and child welfare services systems.These two systems don’t necessarily Carolyn Johnson was a child with a disability who grew up in foster care.Today, as a mom she works hard to communicate with each other in a way that create a strong and loving family environment for her own children. See story below. supports their work on behalf of children with disabilities who have been removed from their family home or who are at risk for Growing Up in Foster Care: Carolyn’s Story such removal, and they may not have adequate access to expertise in one another’s by Carolyn Johnson, as told to Jennifer Hall-Lande areas of focus. In this Impact issue, we My childhood was spent in the foster care system. The first time I went into foster care examine the presence and needs of children I was seven years old. Throughout my childhood and teenage years, I was in over with disabilities who are in the child welfare seven foster care and group home placements. As I look back at those years, it feels system, barriers to be addressed by the two like a mixture of good and bad experiences. systems and those who work in them, and One of the most difficult parts of foster care was not knowing what was going to strategies for moving forward in better happen to me. There was always a sense of uncertainty and confusion. I often felt meeting the needs of such children and their scared and alone. It would be hard for any child to go through the foster care system, but having a disability made it more difficult for me to understand what was going on families. in my life. The only time that I really remember my social worker was when she came to my house to take us away. I do not recall a social worker talking with or visiting me in the foster home. It was important to know what was happening in my life. I needed What’s Inside someone to explain the situation to me in a way that I could understand, someone I Overview Articles could trust and talk to about things. Sometimes it felt like the foster homes were just Program and Personal Profiles in it for the money. It felt like they did not care about me or that I had a disability. In Resources one foster home, her son hurt me. When I told my foster mom, she whooped me for telling on him. If a social worker had come to the home, I would have told her about what had happened to me. Being separated from my siblings was another painful part of being in foster care. I was the oldest in my family followed by my brother and baby sister. My brother and I were always placed in the same home, but my sister was always in a different foster home. At that time, most foster homes only wanted babies or very young children. [Johnson, continued on page 36] 2 Overview Supporting Family Life for Children with Disabilities: What We Know and Don’t Know

by Nancy Rosenau

Children with Disabilities and Family The simple truth that young children Disruption: What’s Known, Unknown In short, too many children with disabili- need a close relationship with a nurtur- ties get into care, too few get out, and too ing parent for physical and emotional In the child welfare system, the need of often they’re in the wrong place while well-being has been known intuitively children for family has been built into there. What contributes to this state of for as long as humankind has organized policy and mandated by federal legisla- affairs? In a number of senses, we “don’t itself in families. It has been affirmed by tion since 1980 under the term “perma- know.” child development experts and research- nency planning.” Permanency planning We don’t know in the sense of having ers. It was theorized by John Bowlby in is a set of goal-directed, time-sensitive factual information. Despite recognizing the 1950s, subsequently studied under activities to create conditions to allow the prevalence of children with disabili- the term “attachment,” and is now sup- the safe resumption of care by a birth ties in child welfare systems, we don’t ported by an enormous body of empiri- family after removal, or permanent know who they are, where they live, or cal evidence (Cassidy & Shaver, 1999; placement with another family when what their experiences are. Studies Carlson, Sampson & Sroufe, 2003). The return is not possible. Despite the impor- widely report children with disabilities tance attributed to a nurturing parent- are over-represented in the child welfare child relationship, children with disabili- system. Estimates range from 14% to 64% ties have been differentially assured this depending on methodology and defini- Children with disabilities experience singularly important developmental tions, but the data is hard to interpret. imperative. Several very thorough, must- Take the following examples identified more removals from their parents, read publications on children with from data in a national reporting system disabilities summarize the now well- (see Bruhn, 2003). Federally mandated more residential settings, longer established facts (Bruhn, 2003; Marge, data collection identified only 11% of 2003; Rosenberg & Robinson, 2004): children in care as having a developmen- time in care, fewer goals of family • Children with disabilities are at tal or medical condition, a proportion far increased risk of maltreatment lower than would be expected given life, and less achievement compared to nondisabled children. prevalence in the general population, • Children with disabilities have an much less the higher incidence of disabil- of the goals of family life than increased likelihood of suffering mal- ity caused by abuse or neglect. In 1999, treatment multiple times in multiple Washington state reported no children in their non-disabled peers in ways by multiple perpetrators. foster care had disabilities and Florida reported 21 of 34,254; that same year the child welfare system. • Some disabilities are caused by North Dakota reported 46.7% of children maltreatment. in foster care had disabilities. Either chil- • Some children are unwanted because dren with disabilities were not identified of their disabilities and are relin- in Washington or Florida, or they weren’t best description I’ve seen of this neces- quished; others are desperately living in foster care. Either children in sary relationship is Stanley Greenspan’s wanted but relinquished to obtain North Dakota are maltreated at enor- (1997): otherwise unavailable services. mous rates or North Dakota is reporting • Children with disabilities are more children that other states don’t count as Every child needs a safe, secure envi- likely to live in congregate care where having disabilities. If we don’t know who ronment that includes one stable, subsequent maltreatment is more has and who doesn’t have a disability and predictable, comforting, and protec- likely. where they are, how can we be sure we’re tive relationship with an adult, not • Children with disabilities experience providing them with what they need? necessarily a biological parent, who We also don’t know in the sense of has made a long-term personal com- more removals from their parents, more residential settings, longer time having awareness. We don’t distinguish mitment to the child’s daily welfare to what extent behaviors of children with and who has the means, time, and in care, fewer goals of family life, and less achievement of the goals of fam- disabilities are consequences of maltreat- personal qualities needed to carry it ment rather than intrinsic to their im- out. (p. 264) ily life than their non-disabled peers in the child welfare system. pairment. Knowing is complicated by Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/191/default.html). Citation: Gaylord,V., LaLiberte,T., Lightfoot, E. & Hewitt, A. (Eds.). (2006). Impact: Feature Issue on Children with Disabilities in the Child Welfare System 19(1). [Minneapolis: University of Minnesota, Institute on Community Integration.] Overview 3

children’s inability to communicate and dren for 25 years, the disability sector is The Risks of Maltreatment by inadequate evaluations that have dif- coming to permanency planning more for Children with Disabilities ficulty distinguishing underlying condi- recently, with a few notable exceptions tions. The behavioral consequences of like Michigan, Pennsylvania, and Texas. While the risk factors that contribute to maltreatment are increasingly under- Texas, for instance, has legislation to child maltreatment in all children apply stood to include aggression, poor sense assure all children in disability services of personal safety, inappropriate sexual non-family living arrangements have a to children with disabilities too, the behavior, self-abuse, poor hygiene, permanency plan that is reviewed every presence of a disability increases both the extreme withdrawal, and running away. six months. While this legislation was risk of maltreatment and the impact of passed 20 years after the protections maltreatment in the following ways: afforded children in the child welfare Child system, many states don’t yet even offer • Greater dependence on caregivers for The common thread in promising that protective policy in their disability services. their personal needs and longer-term practices is that they direct dependence on caregivers because they Supporting Family Life for may be less in charge of their own bodies; resources to surround an Maltreated Children • Physical, cognitive, emotional/mental anchoring family – one with the Our collective response to children with health disabilities that interfere with disabilities is too frequently placement being able to understand, resist, or tell requisite time, means, and in settings to get “specialized treatment” someone about abuse; to prepare them for community life. • More likely to have their symptoms of personal qualities to care for the Treatment methodologies are written so they can be implemented by inter- abuse or neglect ignored because their child – with the support and changeable staff. Treatment is seen as symptoms are confused with those of the modifying the behavior of the child, disability itself; and expertise they need. rather than modifying the relationships • Greater isolation and fewer chances to available to the child. The relationships socialize that may contribute to low self- children need are not interchangeable, but rather require the security of a esteem and less opportunity to learn how The behavioral consequences of early unique attachment to heal wounds of to prevent or end abuse. loss of an attachment figure are also in- separation and maltreatment. The an- Family creasingly understood to include delayed swer is not preparing for family life and • Higher costs for caring for their child speech and language development, sen- the relationships it offers – the answer is with special needs, including medical sory integration difficulties, behavioral family life and the relationships it offers. stereotypies, and inattention/hyperac- There are some hopeful trends in care, therapy, equipment, transportation, tivity (Zeanah, 2000). The list of behav- child welfare in relation to supporting and childcare; ioral consequences of maltreatment and family life for children who have chal- • More social isolation; attachment loss is suspiciously similar to lenges as a result of maltreatment: the descriptions of many children with • More emotional stress and time pres • Prevention services. A number of ini- disabilities. When children with disabili- sures to coordinate care for their child’s tiatives are demonstrating successful ties are described as aggressive, impul- behavioral, medical, or educational ways to work with troubled families sive, withdrawn, overly friendly, or sexu- to prevent removing a child by pro- needs; alized, their behaviors are attributed to viding intensive in-home interven- their disability. Lodged in a child welfare • Lack of programs for parents of children tion tailored to unique family needs. service system that doesn’t know about with special needs; and • Therapeutic foster care. An intensive disabilities, the thing that is least known • Differing cultural values and beliefs is identified as the causative agent. If version of foster care that is demon- about disability and the need for behavior is assumed to be a manifesta- strating success with children with tion of a disability rather than a trau- emotional or behavioral issues placed intervention. with families who are carefully Reprinted with permission from Every Child Special – Every Child matic experience, will we provide the Safe: Protecting Children with Disabilities From Maltreatment – A right response? chosen, specifically trained, and Call to Action (2000). By G.L. Krahn, et al., Oregon Health Sciences University, Portland, page 22. Retrieved 1/3/06 from www.ohsu. While child welfare has been strug- partnering in teams with clinical edu/oidd/pdfs/OAKSProjectbw.pdf. gling to provide permanency for chil- expertise. [Rosenau, continued on page 38] 4 Overview Seven Keys to Supporting Children with Disabilities in the Child Welfare System

by Nora Baladerian

Children with disabilities represent at reported (Davis, 2000). Thus, while we major life activities: capacity for inde- least 15% of the child population in the don’t know precisely how many children pendent living, economic self-suffi- United States (Committee on Education in dependency services have disabilities, ciency, learning, mobility, receptive and and the Workforce, 2005). How many we do know they are there, they are in expressive language, self-care, and self- are receiving services in the child welfare need of such services, and that there direction.” Developmental disabilities system in unknown, as disability is not may be many more in need of services represent approximately 3-5% of all dis- universally recorded. It could be esti- than come to the attention of the sys- abilities found among children and mated that there is an equal representa- tem. Child welfare systems need to have adults. tion in the system as in the population, protocols, practices, and procedures in Children may be born with a disabil- yet two other important factors may place to assure excellence in service ity, or may acquire a disability as a result cause an adjustment in this assumption. delivery for this population. of illness, accident or abuse. Studies The first is that child abuse involving Barriers to such excellence have in- show that of those children who have children with disabilities occurs at ap- cluded a scarcity of training and educa- survived severe neglect, 52% retain per- proximately 3.5 times the rate of abuse tional programs preparing child welfare manent disabilities (Baladerian, 1990). staff to recognize a child’s disability. Child abuse victims in general may Further, requirements of child welfare acquire mental health conditions includ- workers do not include assessment for ing posttraumatic stress disorder, anxi- There is a huge gap between the disability unless specific services such as ety disorders, depression, and dissocia- foster care placement are called for. tive disorders in addition to other child welfare and disability Documentation of the child’s non-medi- consequences such as difficulty learning, cal health care needs has not been man- and engaging with social skills. Adjust- service systems that needs to be datory. Yet the needs of children with ment disorders of all types may ensue. It disabilities for services matching their must be noted that such conditions are closed. There is no apparent lack disabilities certainly are there. often ignored when the child has a significant disability of another type. of willingness, only a need for Types of Disabilities Encountered in a mechanism for making Child Welfare Attitudinal and Knowledge Barriers Disabilities can be identified within nine Most people in the disability field agree collaboration happen. categories: sensory, communication, that the most prominent barrier is nega- mobility, intellectual, social, psychiatric, tive societal attitudes. Individuals with medical, orthopedic, and respiratory. A disabilities are perceived as being valued child may have one or more of these dis- “less than” their non-disabled counter- of children without disabilities (Sullivan abilities. “Developmental disability” is a parts. In fact anyone with a “difference” & Knutson, 1998, 2000). Secondly, category of disability defined by law as from what society values for height, underreporting of abuse of both chil- interrupting the normal developmental weight, verbal fluency, youthfulness, dren and adults with disabilities is an process. The Developmental Disabilities beauty, athleticism and so forth is some- enormous problem; researchers estimate Act of 2000 (P. L.106-402) provides the how seen as “less than.” that less than 30% of many types of federal definition, while most states When one is among the “highly val- abuse is ever reported (Protection and have their own definitions designed to ued” in society, it can be difficult to un- Advocacy, Inc., 2003). For example, it’s identify children who may qualify to derstand why it is so important to those estimated that 90% of people with devel- receive supportive services. The federal labeled “less than” to assure that ser- opmental disabilities will be sexually law states: “Developmental disabilities vices are available, or why announcing assaulted over the course of their lives – are severe, life-long disabilities attribut- that one’s services are available to that and children with any type of disability able to mental and/or physical impair- population is even needed. Yet, individu- are almost twice as likely to experience ments, manifested before age 22. Devel- als with disabilities and their families sexual abuse as nondisabled children – opmental disabilities result in substan- are well aware that generic services are but only 3% of the assaults will ever be tial limitations in three or more areas of often denied to them. For example, a

child sexual assault survivor with intel- • Recognize when you don’t know and A Need for Shared Expertise lectual disabilities may be denied mental ask Services for children with disabilities and health services with this statement at the • Use the Web and listservs mental health center – “We don’t serve their families include special education, children with mental retardation” – • Meet monthly with disability services health care, family support (including although their service is provided to all respite care), advocacy, vocational training, other survivors of sexual assault. Why Nothing About Us Without Us and independent living as children mature. not? In part, just plain prejudice, usually Historically, these services have functioned “Nothing about us without us” is a based, like any other prejudice, in lack of separately from the child protective sys personal experience with individuals theme of self-advocates. The perspective tem, with little recognition by either about with disabilities. In part, a lack of under- of individuals with disabilities cannot standing of the needs of the child. In be overestimated. Including individuals the vulnerability of children with disabili part, a failure to procure training in how with disabilities in all phases of service ties for maltreatment. Key gaps include: to serve children with intellectual dis- delivery planning can save enormous • Lack of screening for disabilities at time abilities. There may also be fear on the amounts of time and money. By “build- of intake into the child protective system; part of practitioners about individuals ing it right” from the start, costly modi- • Lack of awareness of and training on with disabilities, as well as fears regard- fications to physical site and service ing their own skills. delivery products are avoided, not to recognizing and reporting maltreatment Yet, it is the mission of the child wel- mention the time and effort expended to among disabilities services, special educa fare system to serve all children. Con- doing things twice. The implementation tion services, and advocacy organizations; of this is to include qualified individuals versely, those agencies that focus their • Lack of awareness and training about services to children with disabilities are with a variety of disabilities, and those disabilities among maltreatment investi frequently unaware of the many services who represent children with disabilities, provided by child welfare. There is a in all planning for physical sites; in all gation, assessment, and treatment services; huge gap between these two service sys- planning for service delivery proce- • Differing eligibility requirements and age tems that needs to be closed. There is no dures, protocols, and policies; in board cut-offs for disabilities services and the apparent lack of willingness, only a need membership; and in training activities. child protective system; for a mechanism for making collabora- • Prevention services (parenting support tion happen! Spirit and Letter of the ADA groups, respite, child abuse hotlines) that In 1990, the Americans with Disabilities do not address the needs and concerns of Strategies for Excellence in Service Act was passed, with final compliance to families of children with disabilities; be in place by July 1994. Yet, many orga- In order to remedy this problem, and • Few crisis and long-term placement equip child welfare professionals and sys- nizations and agencies still lag behind. It options for children with disabilities. tems to not only serve children with dis- is not just the letter of the law that re- abilities equitably, but with excellence, quires compliance, but also the spirit of People with expertise in disabilities and the following seven strategies are recom- the law that needs to be adopted by all cultural competency need to be included in mended. Implementing these within who serve members of the public. Full identification, investigation, assessment one’s own community will strengthen ADA-guided accessibility refers to imple- and treatment of maltreatment through mentation of both the spirit and letter both sides of the service delivery system appointments to review committees, staff in that disability service providers will be of the law and at the agency-level can positions with assessment and treatment included in ongoing planning and service include adding “serving people with delivery of child welfare services, while disabilities” into all informational and centers, and consulting on individual cases child welfare professionals will be in- promotional materials for clients, the and on prevention programs. cluded in ongoing service delivery and public and potential employees; assur- Programs serving children with disabili planning of disability related support ing comprehensive physical accessibility ties and their families must become aware services. The seven strategies are: throughout agency sites (and wherever of the relationship between disabilities else services are offered); and assuring • Nothing about us without us comprehensive program accessibility and maltreatment; address maltreatment • Spirit and letter of the ADA throughout all services that are pro- of children with disabilities through pre • Teach disability awareness vided. Help with accessibility compli- vention, intervention and advocacy; and • CREDO (Compassion, Respect, Em- ance is available to agencies from quali- develop cross-cultural competence. fied ADA compliance support agencies pathy, Dignity, Open-mindedness) Adapted with permission from Every Child Special – Every Child Safe: Protecting Children with Disabilities From Maltreatment – [Baladerian, continued on page 37] A Call to Action (2000). By G.L. Krahn, et al., Oregon Health Sciences University, Portland, pages 33-34, 36. Retrieved 1/3/06 from www.ohsu. edu/oidd/pdfs/OAKSProjectbw.pdf. 6 Overview Children with Disabilities and the Child Welfare System: Prevalence Data

by Sheryl A. Larson and Lynda Anderson

Several studies have examined the char- care as children without a disability. child is associated with later entry into acteristics of children with disabilities While the NCANDS data are very the special education system. A seven- and/or the relationship between disabil- helpful in understanding abuse and year longitudinal study of 8,000 chil- ity and participation in the child welfare neglect from a broad systems perspec- dren whose families received Aid to system. According to the National Child tive, official reports acknowledge its Families with Dependent Children Abuse and Neglect Data System limitations in measuring abuse and found that among children who were (NCANDS), in 2003 an estimated neglect specifically among children with not already receiving special education 906,000 children were determined to be disabilities. Several other studies pro- services at the time they were abused, victims of abuse or neglect by child provide more specific information about children who had experienced substanti- tective services agencies in the United children with disabilities. For example, ated maltreatment were 1.9 times more States (a rate of 12.4 children per 1,000; one study cross-referenced school likely to enter special education than U.S. Department of Health and Human records, the foster care system records, children who did not experience sub- and police databases for 50,000 children stantiated maltreatment (Jonson-Reid, ages 0-21 in Nebraska to examine the Kim, Porterfield, & Han, 2004). This extent to which children who were con- was true even after controlling statisti- Whichever numbers are used, it is sidered by schools to have a disability cally for the presence of medical condi- were at increased risk of experiencing tions that pose a developmental risk at clear that the child welfare system maltreatment (Sullivan & Knutson, birth. This study suggests that not only 2000). In that study, 9% of children who are children with disabilities at higher must be prepared and equipped to did not have disabilities and 31% of chil- risk of entering the child welfare system, dren who had disabilities were found to but that children who enter the child support and serve substantial have experienced reported maltreat- welfare system are at higher risk of hav- ment. The study concluded that chil- ing or acquiring disabilities requiring numbers of children with dren with disabilities are 3.4 times more special education services. likely to be maltreated than their peers The studies cited above report experi- disabilities. who did not have disabilities. ences of children who had contact with Another study examined the charac- the child protection system for some teristics of children involved in 1,249 reason. They do not examine the general cases of substantiated maltreatment population of children with disabilities. Services, 2005). In that study, children from a national sample of 35 Child Pro- The 1994/1995 National Health Inter- with disabilities accounted for 6.5% of tective Services agencies (Crosse, et al., view Survey on Disability (NHIS-D), on all child victims. However, this is consid- 1992). Data for this study were collected the other hand, collected nationally ered to be an undercount because not from caseworkers responsible for the representative information from every child receives a clinical diagnostic cases. That study reported that “the inci- 202,560 people in nearly 100,000 house- assessment by child protective services. dence of maltreatment… among chil- holds. In that study, the estimated Children identified as having disabilities dren with disabilities was 1.7 times prevalence of intellectual or develop- were 1.57 times more likely to have higher than the incidence of maltreat- mental disabilities (ID/DD) amongst experienced abuse or neglect and were ment for children without disabilities” persons not living in group homes or in- 1.51 times more likely to experience (p. vi). In all, 36 children with disabili- stitutions was 38.4 per 1,000 for chil- recurring abuse or neglect as children ties per 1,000 had been maltreated. dren ages birth to five years, and 31.7 without disabilities. Approximately 57% Among children with disabilities who per 1,000 for children ages 6 to 17 years of victims, and 25% of children involved had been maltreated, caseworkers ex- (Larson, Lakin, Anderson, Kwak, Lee & in cases not determined to be abuse, pressed their opinion that the presence Anderson, 2001). An estimated 939,617 received services as a result of an investi- of a disability contributed to or led children ages birth to five years, and gation or assessment. Children with dis- directly to maltreatment for 47% of the 1,452,359 children ages 6 to 17 years abilities who were abused or neglected children. had ID/DD in 1995 (Larson, Lakin, were 89% more likely to receive services A third study examined whether the Anderson, Kwak, Lee & Anderson, and twice as likely to be placed in foster experience of being maltreated as a 2001). In addition, many more children

had substantial functional limitations in were significantly less likely to live with service systems and disability service self-care, expressive or receptive lan- both parents than other children (61% systems at both the state and local lev- guage, learning, mobility, and self-direc- versus 70%). They were also significantly els. This cooperation should address the tion, but did not have ID/DD (Ander- more likely to live in families with below provision of supports that can help pre- son, Larson, Lakin & Kwak, 2002). The poverty level incomes (Larson, Lakin, vent abuse and neglect in at-risk fami- estimated prevalence of substantial func- Anderson & Kwak, 2001). Furthermore, lies, such as respite care, parent educational limitations but not ID/DD was 39 more than 30% of families of children tion and training, and other supportive per 1,000 for children ages 6 to 17 years with disabilities reported that the child’s services. (an estimated 1.8 million children). Chil- disability caused parents to make one or References dren younger than six with substantial more of the following accommodations: Anderson, L., Larson, S.A., Lakin, K.C., & Kwak, N. (2002). Children functional limitations were included in not accepting a job offer, changing work with disabilities and social roles: An analysis of the 94/95 NHIS-D. DD Data Brief, 4 (1). Minneapolis: University of Minnesota, Research the ID/DD group. hours, working fewer hours, quitting and Training Center on Community Living. The NHIS-D asked questions about work, changing sleep habits, turning Cross, S.B., Kaye, E., & Ratnofsky, A.C. (1992). A report on the mal treatment of children with disabilities. Washington, DC: Prepared by both disability status and about services down a better job, changing jobs, or hav- Westat, Inc., and James Bell Associates for the National Center on Child Abuse and Neglect, U.S. Department of Health and Human people received. Among children with ing severe financial problems (Anderson, Services. ID/DD or functional limitations, 10% Larson, Lakin & Kwak, 2002). The pres- Jonson-Reid, M., Drake, B., Kim, J., Porterfield, S., & Han, L. (2004). A prospective analysis of the relationship between reported child mal received social work services through ence of a child with a disability increases treatment and special education eligibility among poor children. school (Anderson, Larson, Lakin & stress for many families, and for some Child Maltreatment, 9 (4), 382-394. Kaplan, S.J., Pelcovitz, D. & Lebruna,V. (1999). Child and adolescent Kwak, 2002). An estimated 11% of chil- families the combination of stressors abuse and neglect research: A review of the past 10 years. Part 1: Physical and emotional abuse and neglect. Journal of the American dren with ID/DD (an estimated 263,000 and other family characteristics or prob- Academy of Child and Adolescent Psychiatry, 38, 1214-1222. children) and 6% of children with func- lems leads to involvement with the child Larson, S.A., Lakin, K.C., Anderson, L., & Kwak, N. (2001). Demo graphic characteristics of persons with MR/DD living in their own tional limitations but not ID/DD (an es- welfare system. homes or with family members: NHIS-D analyses. MR/DD Data Brief, timated 108,000 children) received social These studies show that having a dis- 3 (2). Minneapolis: University of Minnesota, Research and Training Center on Community Living. work services in other settings. The ability puts a child at increased risk of Larson, S.A., Lakin, K.C., Anderson, L., Kwak, N., Lee, J.H., & Anderson, NHIS-D did not specifically ask whether abuse or neglect. It also puts the child at D. (2001). Prevalence of mental retardation and developmental dis abilities: Estimates from the 1994/1995 National Health Interview the social work services received were increased risk of participating in the Survey Disability Supplements. American Journal on Mental Retarda provided by the child protection system child welfare system and the foster care tion, 106, 231-252. Putnam, F.W. (2003).Ten-year research update review: Child sexual or whether they were provided through system. Furthermore, the experience of abuse. Journal of the American Academy of Child and Adolescent Psy the human services system. abuse or neglect increases the risk that chiatry, 42(3), 269-278. Sullivan, P.M., & Knutson, J.F. (2000). Maltreatment and disabilities: As noted earlier, several of the re- children who had not previously been re- A population-based epidemiological study. Child Abuse and Neglect, viewed studies reported that children ceiving special education services will re- 24 (10), 1257-1273. U.S. Department of Health and Human Services, Administration on with disabilities were more likely to expe- ceive those services. The NCANDS study Children, Youth and Families. (2005). Child Maltreatment 2003. Washington, DC: U.S. Government Printing Office. http:// rience abuse or neglect than were other estimated that approximately 59,000 www.acf.hhs.gov/programs/cb/publications/cm03/cm2003.pdf children. Factors reported to be associ- children with disabilities had experi- ated with an increased risk of child enced abuse or neglect in 2003. This is Sheryl A. Larson is Research Director of sexual abuse include gender (girls are at lower than the estimated 86,000 children the Research and Training Center on higher risk), age (older children are at with intellectual or developmental dis- Community Living, Institute on higher risk), disability (children with disabilities or the estimated 151,000 chil- Community Integration, University of abilities are at higher risk), and family dren with any type of disability who Minnesota, Minneapolis. She may be constellation (the absence of one or both could be expected to have experienced reached at 612/624-6024 or larso072@ parents is a significant risk factor) abuse or neglect if the incidence of umn.edu. Lynda Anderson is a consultant (Putnam, 2003). Factors reported to abuse of 36 per 1,000 in the Crosse study with the center; she may be reached at 651/ increase the risk of physical abuse or is combined with the estimated preva- 224-9149 or [email protected]. neglect include younger age, lower socio- lence of intellectual or developmental economic status, teenage parents, par- disabilities (2.39 million children) or es- ents who abuse substances, single par- timated prevalence of any type of dis- ents, and parents with cognitive limita- ability among children (41.9 million chil- tions (Putnam, 2003; Kaplan, Pelcovitz dren) from the NHIS-D. Whichever & Lubruna, 1999). The NHIS-D data numbers are used, it is clear that the describe the extent to which these and child welfare system must be prepared related risk factors are present among and equipped to support and serve sub- children with disabilities living with their stantial numbers of children with dis- families or in other non-institutional set- abilities. This may require increased tings. For example, children with ID/DD cooperation between child protective 8 Overview Serving Children with Disabilities in the Child Welfare System: Barriers and Strategies

by Elizabeth Lightfoot and Traci LaLiberte

There are a number of barriers to provid- same survey, child protection managers tion services usually are not written with ing services to children and youth with and supervisors discussed the lack of dis- disability accommodations such as disabilities in the child welfare system. ability knowledge by their workers and extended timeframes or modified parent- This article describes three that have the allied professionals, such as law enforce- ing classes in mind. For example, the greatest impact: the need for greater dis- ment and court personnel, as another key timeframes mandated by the Adoption ability competence on the part of child barrier to serving people with disabilities. and Safe Families Act placement can welfare service providers, the need to Because of their lack of knowledge and cause barriers in working with children overcome systemic barriers, and the need skills in relation to disabilities, child pro- with disabilities because a longer time- for increased empirical knowledge. tection workers may perceive that issues frame may be needed to obtain services While there is limited research into best surrounding a particular disability are the or for the family to otherwise comply practices for serving children with dis- problem. However, from a social model with an order from child protection. Such abilities and their families who are in- view of disability, the barrier is not the accommodations are often not provided. volved in the child welfare system, there disability itself, but is rather the lack of Rural areas often have additional bar- are some important positive strategies knowledge of professionals on how to riers to services, including lack of service that are being successfully used in a num- work with people with disabilities and providers, especially specialized provid- ber of locations to address these barriers; accommodate their needs. ers such as child psychologists, special- this article presents three such strategies. ized parenting classes or accessible foster care (Lightfoot & LaLiberte, in press). Systemic Barriers Need for Disability Competence The services that are available are often a Even for child welfare workers who have long distance from where many families One barrier to serving children with dis- the knowledge and skills in serving chil- live. Parents of children with disabilities abilities is the lack of disability compe- dren and youth with disabilities, there are frequently have to drive long distances to tence on the part of child welfare work- a number of systemic barriers impacting access needed services, and those without ers. They typically receive little training their ability to provide appropriate ser- private transportation may be unable to on disability issues in their formal educa- vices. A top systemic barrier is lack of receive the supportive services they need. tion, and disability has not been a popu- financial resources and funding to pro- A final rural concern is that child welfare lar continuing education topic in the vide families of children with disabilities agencies in rural areas may not have a realm of child welfare. Because of the the support that they need to parent their critical mass of cases involving children lack of disability competence, child wel- children. In addition, there is a shortage or youth with disabilities that is necessary fare workers who have cases involving of child welfare providers who have to develop expertise in disability issues. people with disabilities may find chal- expertise in both child welfare and dis- lenges relating to their lack of knowl- abilities, and those specialized providers Too Little Empirical Knowledge edge. In fact, in a recent survey of child that do exist often have long waiting lists. protection managers and supervisors, Another systemic barrier relates to the A final barrier is the general lack of em- workers most often cited specific factors multitude of systems with which a child pirical knowledge about prevalence of related to the disability of an individual with a disability interfaces. A family in- children with disabilities in the child wel- as a barrier to serving children with dis- volved in the child protection system is fare system and appropriate strategies abilities in the child welfare system often receiving mandated services from and services to meet their needs. While (Lightfoot & LaLiberte, in press). Child the child protection system, along with many professionals in the child welfare protection employees cited such disabil- voluntary services from the disability ser- and disability arenas would anecdotally ity barriers as communication chal- vice system. These two systems not only point to the high rates of maltreatment lenges, behaviors associated with par- have different philosophies, but also have involving children with disabilities, there ticular disabilities, and the chronic separate legislation, rules, and bureau- have only been several studies actually nature of some disabilities, such as men- cratic procedures. Because these two measuring the prevalence of such abuse tal illness. However, the focus on a spe- systems are generally not well-integrated, (Sullivan & Knutson, 2000; Westat, cific disability may actually reflect the the resulting red tape is a serious barrier 1993). Only 19 state child protection sys- lack of disability competence by workers to obtaining services. Further, the federal tems collect data related to disability in within child welfare agencies. In this and state laws mandating child protec- their state registries, and only 7 require

child protection workers to be trained in unit and one from developmental dis- Family Support Strategies recognizing and entering disability data abilities unit – working together on all The following are some strategies that (Bonner, Crow, & Hensley, 1997). There is cases involving a child with a disability may be useful in supporting struggling even less information on how child wel- who has an open child protection case. families and preventing out-of-home fare agencies serve clients with disabili- Other child protection units team all of ties and no empirical studies on child their cases with someone in the disability placement of children with disabilities: protection strategies that are effective for unit, which can aid in identifying chil- • A Support Family. A Support Family families with a child with a disability. dren who may be eligible for disability provides family life for a child when their services. When these types of collabora- birth family is unable to provide it or Increasing Disability Competence tive efforts work well, the workers can overcome some of the systemic barriers provide it full-time.Within disability While all child welfare workers need not mentioned above. services, it is a way to provide shared become experts in disability services, they parenting as an alternative to residential should know enough about disability is- Conducting Further Research placement for a child whose family is sues to recognize when a child is in need considering voluntary out-of-home of disability screening, and know who to Finally, there needs to be further research placement; it may be a valuable preven collaborate with in the disability field. on children with disabilities involved in Trainers on disability competency are the child welfare system. Federal regula- tion strategy for use by the child welfare available in many communities through tions should be changed to require child system, as well. A Support Family differs disability advocacy and resource organi- welfare agencies to report on the number from a foster family in that it is recruited zations, as well as state or county disabil- of children with disabilities involved in specifically for a child with disabilities and ity services agencies. Further, some social the child welfare system, and the out- makes a long-term commitment to that work departments at local colleges and comes of these children’s cases. This child, birth parents can share parenting universities can provide staff training in would provide data that could enable re- serving people with disabilities in the searchers to further address the resource with a Support Family through mutual child welfare system. Some agencies have and services barriers. agreement without giving up their rights, increased their disability competence by and the Support Family is trained to care the use of specialty child protection work- Conclusion for the particular child placed with it. ers or units (Lightfoot & LaLiberte, in • Respite. Respite programs provide press) with particular training and exper- In order for children with disabilities temporary care by trained individuals for tise in disability issues. For agencies that involved in the child welfare system to have specialty workers or units, all child achieve the best possible outcomes, the children with disabilities.They give the protection cases involving people with system must provide accessible, appro- family a break from caregiving, reduce disabilities are handled by these experts. priate services to these children and family stress, and create time for other their families. The strategies in this activities. Respite may be in-home or out Collaborating article provide a starting point. of home; among the out-of-home options are respite in the provider’s home, a day Currently, the greatest need is for in- References Bonner, B. L., Crow, S. M., & Hensley, L. D. (1997). State efforts to iden care center, a group foster home, and creased collaboration among personnel tify maltreated children with disabilities: A follow-up study. Child Mal in the child welfare and disability fields. treatment, 2(1), 52-60. homes of a circle of families that provide Lightfoot, E. & LaLiberte,T. (In press). Approaches to child protection Informal collaboration with disability case management for cases involving people with disabilities. Child respite for each other. professionals is the most common way Abuse & Neglect. Sullivan, P., & Knutson, J. (2000). Maltreatment and disabilities: A popu • Parent Training and Support. Parent that child welfare workers gain informa- lation-based epidemiological study. Child Abuse and Neglect, 24(10), training and education programs, support tion and skills needed in serving clients 1257-1273. Westat. (1993). A report on the maltreatment of children with disabili groups,and other family support services with disabilities (Lightfoot & LaLiberte, ties. Washington, DC: National Center on Child Abuse and Neglect. in press). These informal collaborations through disability and other human can involve a child welfare worker simply Elizabeth Lightfoot is Assistant Professor service organizations/agencies can assist asking a question regarding resources, or with the School of Social Work at the parents with learning about the disability could involve a disability worker aiding a University of Minnesota, Minneapolis. She of their child, building skills in caring for may be reached at 612/624-4710 or elightfo child welfare worker in assessing risk of their child, attending to the whole of maltreatment. Some public child welfare @umn.edu. Traci LaLiberte is Program family life, and finding peer support with agencies also have formalized such col- Coordinator with the Research and Train- laboration. Some agencies have two case ing Center on Community Living at the other parents of children with disabilities. University. She may be reached at 612/ Information on Support Families adapted from Options for Par workers – one from the child protection ents, Every Child Inc., Austin, Texas, www. everychildtexas.org/ 625-9700 or [email protected]. optionsparents.shtml. Information on respite adapted from FactSheet Number 2, Respite for Children with Disabilities and Chronic or Terminal Illnesses, National Resource Center for Respite and Crisis Care Services, www.archrespite.org/archfs02.htm. 10 Overview Child Welfare Services: How Children with Disabilities Move Through the System

by Traci LaLiberte and Elizabeth Lightfoot

When a child with a disability enters the process children with disabilities and statutes to which the agency is account- child welfare system as a result of a re- their families go through when engaged able. If the report is accepted, child wel- port of abuse or neglect in their home in this traditionally involuntary service fare will investigate the case for validity environment, a complicated collabora- system. The structure of child welfare of the allegations. tion must take place between profes- services varies from state to state, and sionals who understand disability and in some states from county to county or Investigation and Assessment those whose responsibility is child pro- region to region. However, all child Services tection. Children with complex medical welfare agencies carry out four similar needs who require specialized daily tasks: intake, investigation and assess- During investigation and assessment, ment, ongoing services, and perma- the child welfare worker gathers infor- nency services. For each of these tasks, mation about the current allegation of child welfare workers need access to ex- abuse and/or neglect and assesses the When a child with a disability pertise in disability. Workers who do not current functioning of the family. The themselves have such knowledge should child welfare worker should be in con- enters the child welfare system, involve experts in the disability field – tact with all family members, the re- which may include professionals from porter if possible, and any other impor- a complicated collaboration must medical and disability services areas, tant contacts, such as school personnel, disability advocacy agency staff, indi- day care providers, medical providers, take place between professionals viduals with disabilities and their fami- therapists, other service providers, and lies, researchers, and others – when law enforcement. Often during the in- who understand disability working with children or youth with vestigation and assessment period, child disabilities. This collaboration between welfare workers rely on disability ex- and those whose responsibility child welfare personnel and those expe- perts inside or outside the social services rienced with disability is essential to agency. Disability experts can provide is child protection. ensuring that children with disabilities consultation on communication tech- and their parents get effective, appropri- niques for interviewing children with ate, and fair services. communication disabilities, appropriate care for children with certain types of health care, children with mobility limi- Intake Services disabilities, and accommodation issues. tations who need wheelchair-accessible Children may need to see a medical pro- environments and assistance with mov- During intake, the child welfare agency vider or other specialist to determine the ing about, children with cognitive dis- receives a report of suspected child nature of marks, bruises, or other physi- abilities who need individual-specific abuse or neglect by either a person man- cal conditions that are pertinent to the support and interaction in their every- dated by law to report such abuse, a allegations, and child welfare workers day routine, as well as children with family member or a community mem- may need to seek out providers who other types of disabilities, all call upon ber. The child welfare worker seeks to specialize in the care of children with the child welfare system to understand obtain as much information from the re- disabilities. and respond appropriately to their porter as possible and creates a formal Child welfare workers generally use a needs. Conversely, to support such report for the agency. It is important at risk assessment tool to guide them in children within the child welfare system this stage of the intake process for infor- making assessments. On such tools, the requires the participation of those with mation regarding the disability of a presence of disability can represent an expertise related to the child’s disability. child or youth to be included in the increased potential for abuse in a family; This necessitates understanding how the report so that the child welfare staff can however, the presence of appropriate child welfare process works and how dis- plan for appropriate, accessible services. service providers or other supportive ability service providers, advocates, and At the point of intake, child welfare activities, such as participation in par- other professionals should be involved. staff will make a decision to accept or enting or advocacy groups, can offset The following presents an overview not accept the report, based upon its fit this risk. Child welfare workers will typi- of the child welfare system and of the with the agency’s mission and the state cally ask questions related to the child or

Ongoing Family Services youth’s disability to determine if an in- of guardianship or the termination of creased risk of maltreatment is present. During ongoing family services, the parental rights. During this phase, child An example of such questions include child welfare worker provides families welfare provides services primarily to (Wahlgren, Metsger & Brittain, 2004, with services with the goal of restoring the child, while services to parents may p. 230): the family to a situation in which the cease. Child welfare workers must find a permanent setting in which the child • What kind of kind of physical children can be safely cared for in their can live. In cases involving a child with a demands result from the child’s own home. During this phase, the chil- disability, this means the worker will disability? dren may be living at home, in temporary foster care or some other appropri- rely heavily on the disability profession- • What is the financial impact of the ate residential setting. In cases that als involved in the case to articulate the child’s disability? involve a family member with a disabil- child’s needs (in addition to the child • How do family members react to the ity, disability professionals are critical to and family) and to aid in the search for child’s disability (e.g., rejection, guilt, the services provided to the family. For an appropriate permanent placement. jealousy, feelings of inadequacy)? children with disabilities, the disability In addition to the four common child • Are there cultural or religious factors professionals may play a crucial role in welfare tasks, some public child welfare that would shape family perceptions assisting the child welfare agency to ac- agencies have embraced child welfare re- (Wayman, Lunch, & Hanson, 1990)? cess and secure funding for appropriate forms and also offer services such as alternative response and family group de- • To what/where/whom does the fam- resources, such as respite care, personal cision making. These services provide ily assign responsibility for their assistance or home modifications. They child welfare agencies with different child’s disability (Wayman et al., may also help in locating or designing ways of interacting with families to 1990)? accessible family services, such as parenting skill training geared towards achieve positive outcomes for children • How does the family view the role of parenting children with disabilities, or and their families. Alternative response fate in their lives (Wayman et al., in finding foster care providers experi- provides the agency flexibility in re- 1990)? enced in caring for children with dis- sponding to a family where the risk is • How does the parent or caregiver abilities. If a parent has an intellectual lower and the provision of services to respond to the child with special disability, the disability expert’s assess- that family may bring about a stable and needs? ment of parental functioning and safety safe situation. For a family with a child • How does the family view their role is often critical to the case decisions or youth with a disability, this form of in intervening with their child? Do made by the child welfare worker. child welfare intervention may be all they feel they can make a difference, Observations and information offered they need to receive assistance and ser- or do they consider it hopeless by disability professionals may be used vices. Family group decision-making (Wayman et al., 1990)? by child welfare workers in ongoing case typically involves extended family mem- management, risk assessments, deci- bers in the case planning process in an Based upon the investigation and as- sions of removal, decisions to return attempt to use resources within their sessment process, child welfare workers children home, designing case plans, own familial structure to plan for the make a determination regarding abuse and decisions to close cases. safety and well-being of the children. or neglect. The determination can result Again, this approach may be beneficial in the case being (a) substantiated and Permanency Services to families in which a child or youth has the family is provided ongoing services a disability. Extended family members in the presence of abuse or neglect; (b) When a child welfare agency determines may brainstorm ways in which they can substantiated and closed if the risk for that parents are unable to change suffi- come together to support the child and abuse or neglect is no longer present; ciently to take care of their children the parents. (c) unsubstantiated and closed if the safely and in a timely manner, the child abuse or neglect did not occur; and welfare system provides permanency Cross-System Collaboration (d) unsubstantiated and the family is services. The Adoption and Safe Fami- provided services when abuse or neglect lies Act dictates the amount of time a Collaboration between child welfare is not present but the family is at-risk. parent has to make the necessary professionals and other key profession- Some child welfare agencies do not changes to have their child returned to als is critical throughout a family’s child provide for the last determination due to their care. If they aren’t able to meet the welfare involvement. Disability and fiscal restraints or agency mission. At indicated timeframe, their parental other key professionals should be con- times, the risk assessment may indicate rights will likely be “terminated.” The tacted for collateral information in the a need for the immediate removal of a agency will pursue a permanency hear- early stages of a case in order to gather child from the home. ing in court, requesting either a transfer information regarding the child’s and [LaLiberte, continued on page 38] 12 Overview Child Welfare Legislation Affecting Children with Disabilities

The following summarizes some of the federal plan. States can legislate shorter that provides financial support to laws that apply to children with disabilities reunification times. adoptive parents of children with spe- who have been removed from their families Sections specifically addressing cial needs. The definition of special either temporarily or permanently, or who are children with special needs include needs, under section 473(c) of the in families that can benefit from prevention provision for health insurance cover- Act, varies by state but must meet or intervention efforts in order to continue age for children with special needs for three criteria: (a) the child cannot or parenting their children with disabilities. whom there is in effect an adoption should not be returned to his/her On the following page is information about assistance agreement or whom the parental home, (b) there is a specific another significant federal law, CAPTA. State has determined cannot be factor or condition that makes it rea- placed with an adoptive parent(s) sonable to conclude that adoption • Adoption and Safe Families Act of without medical assistance because assistance will be necessary to facili- 1997 (ASFA, P.L. 105-89). ASFA has the child has special needs for medi- tate adoption – possible factors in- three primary goals: child safety, per- cal, mental health, or rehabilitative clude presence of a disability; and (c) manency, and child well-being. ASFA care; and provision for adoption assis- reasonable but unsuccessful efforts marks the shift away from “family tance payments to continue for chil- have been made to place the child preservation” in the child welfare field dren with special needs who were eli- without adoption assistance. For chil- to a focus on accountability and out- gible at the time of an adoption that dren identified by a State as “special comes. A significant aspect of the leg- has now been dissolved – the eligi- needs,” those who meet the require- islation directs child welfare workers bililty may continue into the next ments for Title XVI Supplemental and agencies to make what is termed adoption. Security Income benefits at the time “reasonable efforts” to prevent unnec- In relation to children with disabili- of adoption are among those eligible essary removal of a child and to ties, it is also important to note that for adoption assistance; children eli- reunify children with their parent(s). the timeframes for reunification in gible for SSI have significant disabili- Specific criteria were also set for cases this legislation can present a hard- ties (these commonly include Down in which child welfare professionals ship. For children with disabilities it syndrome, deafness, blindness, and were not required to provide reason- often takes considerable time to lo- cerebral palsy). able efforts (e.g. parent has murdered cate or create services tailored to meet (Information based on “Title IV-E or attempted to kill a child, or has had the individual’s needs. If a parent Eligibility & Benefits” and “Adoption parental rights to another child termi- needs to participate in those services Subsidy Definitions–United States” from nated). Another key aspect of the in order to work toward reunification, the North American Council on Adopt- ASFA legislation is the minimum the time it takes to begin services still able Children, http://www.nacac.org) timelines for reunification. When a counts against their 12- or 22-month child has been removed from their permanency timeframe. In cases such • Foster Care Independence Act of caregiver, in addition to temporary as these, child welfare workers would 1999 (P.L. 106-169). The Foster Care custody hearings, a permanency hear- need to advocate in court for the par- Independence Act and the Chafee ing must be held within 12 months. ent to have additional time for reunifi- Program provide for permanency For children remaining in foster care cation because these circumstances planning specific to the needs of for 15 or 22 months, it’s mandatory are beyond the control of the parent. adolescents in out-of-home care. They for child welfare professionals to file (Information based on “Major Federal provide financial assistance to states for termination of parental rights. Legislation Concerned with Child Protec- for child welfare agencies delivering Exceptions to these timeframes tion, Child Welfare, and Adoption” from independent living training to youth, include the child is in the care of a the National Clearinghouse on Child transitional living programs for eman- relative, the child welfare agency Abuse and Neglect Information, http:// cipated youth, and Medicaid coverage documents a compelling reason why nccanch.acf.hhs.gov/pubs/otherpubs/ extending to age 21. filing is not in the best interest of the fedlegis.pdf, and on text of the Act at (Information based on “Foster Care child, and the child welfare agency http://frwebgate.access.gpo.gov) Independence Act of 1999” from the has not provided to the child’s family Child Welfare League of America, the services deemed necessary to re- • Social Security Act Adoption Assis- http://www.cwla.org/advocacy/ turn the child to a safe home consis- tance. Title IV-E is the federally indlivhr3443.htm) tent with the time period in the case funded adoption assistance program Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/191/default.html). Citation: Gaylord,V., LaLiberte,T., Lightfoot, E. & Hewitt, A. (Eds.). (2006). Impact: Feature Issue on Children with Disabilities in the Child Welfare System 19(1). [Minneapolis: University of Minnesota, Institute on Community Integration.] Overview 13 Children with Disabilities and the Child Abuse Prevention and Treatment Act

by Kim Musheno

The incidence of disability among protection system, and private commu- • Inclusion of families of children with abused and neglected children is stagger- nity-based programs; (b) provide child disabilities, parents with disabilities, ing. Too often, disability and child abuse abuse and neglect prevention and treat- and organizations who work with follow two intertwined pathways. First, ment services; and (c) address the health such families is strongly emphasized children with disabilities are particularly needs, including mental health needs, throughout Title II, particularly in the vulnerable to child abuse, and some of children identified as abused or ne- eligibility section. glected. This entails prompt, comprehen- studies have demonstrated that children One of the most important but sive health and developmental evalua- with disabilities are almost four times somewhat controversial changes men- tions for children who are the subject more likely to be victims of maltreat- tioned above is the requirement that of substantiated child maltreatment re- ment than children without disabilities States develop provisions and proce- ports. Some of the other important pro- (Sullivan & Knutson, 1998). Second, dures for referral of a child under the visions successfully incorporated include: many cases of abuse and maltreatment age of 3 who is involved in a substanti- • New eligibility requirements and sup- ated case of child abuse or neglect to port for training, technical assistance, early intervention services funded under The Child Abuse Prevention and research, innovative programs address- Part C of IDEA. Part C is a component ing linkages between the child protec- of IDEA under which states have cre- Treatment Act (CAPTA, P.L. 108- tive system, and community-based ated their early intervention services sys- health, mental health, and develop- tem for infants and toddlers with dis- 36) is one of the only federal mental evaluations. abilities and their families. In spite of • Support for research on effects of mal- the fact that many of the children in the programs that provides funding treatment on child development and child welfare system are eligible for Part identification of successful early inter- C, the rates of their referral to the early for prevention activities. vention services. intervention program have been very low. However, the current early interven- • Support for research on voluntary tion system is struggling to serve the relinquishment to foster care of low- families now enrolled. The new CAPTA income children in need of health or requirements will substantially increase mental health services. contribute to the development of child- the workload for providers of Part C hood disabilities. According to one study • Provision for referral of a child under evaluation and intervention services. by the National Center on Child Abuse age 3, in a substantiated case of abuse Currently, Part C serves about 227,000 and Neglect, over a third of substanti- or neglect, to early intervention ser- children (2% of the population under 3) ated cases of maltreatment led to ac- vices funded under the Individuals nationwide (U.S. Department of Educa- quired disabilities (National Center on with Disabilities Education Act (P.L. tion, 2000). Rough estimates suggest Child Abuse and Neglect, 1993). Prevent- 105-17, IDEA) Part C. that an additional 167,000 children ing child abuse and neglect is integral to • Language replacing statewide net- would need to be screened for eligibility promoting the health, well-being, and works with community-based and pre- for early intervention services as a result maximum potential of all individuals, vention focused activities throughout of the CAPTA amendments. And, from including individuals with disabilities. Title II. that number, approximately 44,000 The Child Abuse Prevention and could be enrolled in the Part C program Treatment Act (CAPTA, P.L. 108-36) is • Language replacing “family resource and support program” with “programs (Rosenberg & Robinson, 2003). one of the only federal programs that Without additional resources to the provides funding for prevention activi- and activities designed to strengthen and support families and prevent child Part C and CAPTA state agencies, the ties. The Keeping Children Safe Act of promise of the CAPTA amendments will 2003 amended CAPTA and was signed abuse and neglect (through networks where appropriate).” not be realized. In addition to the in- into law on June 25, 2003. One of the key creased numbers of children that Part C • Emphasis on the importance of respite provisions is authorization for grants to will assess and serve if referrals from as a critical component of child abuse states to (a) support collaboration child protection are regularized, the among public health agencies, the child and neglect prevention in Title II. [Musheno, continued on page 39] Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/191/default.html). Citation: Gaylord, V., LaLiberte, T., Lightfoot, E. & Hewitt, A. (Eds.). (2006). Impact: Feature Issue on Children with Disabilities in the Child Welfare System 19(1). [Minneapolis: University of Minnesota, Institute on Community Integration.] 14 Overview Out-of-Home Placement and the Developmental Disabilities Service System

by Charlie Lakin

The Adoption Assistance and Child tion as national policy, permanency plan- mental disability service system de- Welfare Act of 1980 (P.L. 96-272) made ning remained an important concept in creased from an estimated 90,942 (36.7% permanency planning national policy. the formulation of Healthy People 2010, of all persons in residential settings) to an This policy was designed to respond to a national initiative to establish goals and estimated 26,395 (6.2% of all persons in the sense of Congress that too many chil- specific objectives with regard to health residential settings). To be sure these dren and youth were being placed out- in the United States. The overarching changes were the product of important side their family homes; that too many goals of Healthy People 2010 are: “1) in- national and state commitment to fami- once placed never returned home; and creasing the quantity and quality of life lies of children with ID/DD. Braddock et that too many were growing up without for Americans, and 2) eliminating the al. (2005) report that $1.98 billion in ser- the social, cultural and developmental disparities in health among us” (National vice and subsidy expenditures were pro- benefits of family living. At its founda- Center on Birth Defects and Develop- vided for various family supports and tion permanency planning is a commit- mental Disabilities, 2001, p. 1). Among cash assistances in FY 2004, excluding SSI ment to honoring the important role of the 13 objectives established for national and Medicaid health benefits. While such family life in child development. performance in effective support of per- statistics give reason for satisfaction, the Within developmental disability ser- sons with disabilities is “Objective 6.7: number of children in congregate care vice systems permanency planning for Reduce the number of people with dis- settings far exceeds the national objective children and youth with disabilities has abilities in congregate care facilities, con- and the rate of decrease appears to have been promoted for the social, cultural, sistent with permanency planning prin- slowed substantially in recent years. In and developmental benefits of family ciples” (p. 89). The specific measurable 1997, an estimated 26,028 persons with life, and as a means of overcoming an national objective established around ID/DD 21 years or younger received unfortunate history in which out-of- permanency planning was “Objective out-of-home residential supports (.98 per home placements for children with intel- 6.7b: Reduce to zero the number of chil- 1000 persons 21 and younger in the gen- lectual and/or developmental disabilities dren aged 17 years and younger living in eral population); in 2005 the number was (ID/DD) were common and widely congregate care facilities” (p. 89). Congre- 26,395 (about .90 per 1000 persons 21 viewed as beneficial to both the family gate care facilities were defined as “set- years and younger). Along with the and child. These placements occurred tings in which children or adults with dis- modest decrease in the number of out-of- through both the developmental disabil- abilities live in a group of 4 or more home placements indexed for population, ity and child welfare service systems. people with disabilities, in order to receive there was also a decrease in the propor- Beginning in the mid-1970s a number needed supports and services” (p. 89). tion of persons 21 and younger among all of social reforms began to give substance In an effort to establish the national persons receiving out-of-home residential to the idea that children with disabilities, performance related to Objective 6.7b, in services for persons with ID/DD (from like their non-disabled peers, deserved June 2005 state developmental disabili- 7.6% in 1997 to 6.2% in 2005). The trend the benefits of family life.These reforms, ties program agencies were requested to toward decreasing numbers of children which took foothold primarily within the report the numbers of children (0-14 14 years and younger continued between developmental disability service system, years), youth (15-18), and young adults 1997-2005 (from an estimated 10,243 to included Supplemental Security Income (18-21 years) with ID/DD in “out-of- 7,926), but was offset by an increase in (SSI) for low-income families of children home residential placements.” Out-of- the number of youth 15-21 in out-of- with disabilities (1974); free and appro- home residential placements were de- home settings. priate educational programs for children fined as individuals receiving residential In general, then, it appears that within with disabilities in their own communi- supports who are not living with parents the developmental disability service deliv- ties (1976); a range of state family sup- or other relatives. State reports included ery system great progress has been made port and subsidy programs with respite children placed out-of-home by develop- in the past three decades in reducing out- care, personal care, and other services mental disabilities programs, and did not of-home placements of children and and cash assistance; and a rapidly grow- necessarily include children with ID/DD youth with ID/DD, and, unfortunately, ing number of children, youth and fami- placed through the child welfare system. this progress has substantially slowed or lies supported within Medicaid Home Between June 1977 and June 2005 halted in recent years, depending on the and Community Based Services (1981). children and youth with ID/DD in out-of- measure selected. The nation clearly has A quarter century after its introduc- home placements through the develop- considerable distance to go in accom-

U.S. Department of Health and Human Services, Administration on plishing its national permanency plan- of appropriate placement options Children, Youth and Families. (2005a). Child maltreatment 2003. Wash ning objective for young people with through the child welfare system for ington, DC: U.S. Government Printing Office. U.S. Department of Health and Human Services, Administration on disabilities, especially in light of the data children with ID/DD (U.S. Department Children, Youth and Families. (2005b). Child welfare outcomes 2002. from the U.S. Children’s Bureau report- of Health and Human Services, 2005b). Washington, DC: U.S. Government Printing Office. ing that child welfare agencies have References Charlie Lakin is Director of the Research and placed children with disabilities more Braddock, D., Hemp, R., Rizzolo, M., Coulter, D., Haffer, L., & Thompson, M. (2005). State of the states in developmental disabilities, 2005. Training Center on Community Living, Insti- than twice as often in foster care than Boulder: University of Colorado, Department of Psychiatry and tute on Community Integration, University of children without disabilities (U.S. Coleman Institute for Cognitive Disabilities. National Center on Birth Defects and Developmental Disabilities. Minnesota, Minneapolis. He may be reached Department of Health and Human Ser- (2001). Healthy People 2010, Chapter 6, Vision for the decade: Proceed ings and recommendations of a symposium. Atlanta, GA: Centers for at 612/624-5005 or [email protected]. vices, 2005a), and that there is a scarcity Disease Control and Prevention [www.cdc.gov/ncbddd/dh].

A Statement in Support of Families and Their Children

The following statement was developed by extended families, friends, and community must leave their families, efforts should be advocates and parents in 1986 at a meeting associations, should be preferred over agency directed at encouraging and enabling families sponsored by the Center on Human Policy at programs and professional services. When to be reunited. Syracuse University, and still stands today as a states or agencies become involved with • When families cannot be reunited and clear assertion of the importance of family for families, they should support existing social when active parental involvement is children with disabilities. networks, strengthen natural sources of absent, adoption should be aggressively support, and help build connections to existing pursued. In fulfillment of each child’s right to a These principles should guide public policy community resources. When natural sources of stable family and an enduring relationship with toward families of children with develop support cannot meet the needs of families, one or more adults, adoption should be pur mental disabilities and the actions of professional or agency-operated support sued for children whose ties with their families states and agencies when they become services should be available. have been broken.Whenever possible, families involved with families: • Family supports should maximize the should be involved in adoption planning and, in • All children, regardless of disability, family’s control over the services and all cases, should be treated with sensitivity and belong with families and need enduring supports they receive. Family support ser respect.When adoption is pursued, the possi relationships with adults. When states or vices must be based on the assumption that bility of “open adoption,” whereby families agencies become involved with families, per families, rather than states and agencies, are in maintain involvement with a child, should be manency planning should be a guiding philo the best position to determine their needs. seriously considered. sophy. As a philosophy, permanency planning • Family supports should support the • While a preferred alternative to any endorses children’s rights to a nurturing home entire family. Family support services should group setting or out-of-home placement, and consistent relationships with adults. As a be defined broadly in terms of the needs of the foster care should only be pursued when guide to state and agency practice, perma entire family, including children with disabil children cannot live with their families or nency planning requires family support, ities, parents, and siblings. with adoptive families. After families and encouragement of a family’s relationship with • Family support services should encourage adoptive families, children should have the the child, family reunification for children the integration of children with disabilities opportunity to live with foster families. Foster placed out of home, and pursuit of adoption for into the community. Family support services family care can provide children with a home children when reunification is not possible. should be designed to maximize integration atmosphere and warm relationships and is • Families should receive the supports and participation in community life for children preferable to group settings and other place necessary to maintain their children at with disabilities. ments. As a state or agency sponsored pro home. Family support services must be • When children cannot remain with their gram, however, foster care seldom provides based on the principle “whatever it takes.” families for whatever reason, out-of-home children the continuity and stability needed in In short, family support services should be placement should be viewed initially as a their lives.While foster families may be called flexible, individualized, and designed to meet temporary arrangement and efforts on to assist, support, and occasionally fill in for the diverse needs of families. should be directed toward reuniting the families, foster care is not likely to be an accept • Family supports should build on existing family. Consistent with the philosophy of able alternative to fulfilling each child’s right to social networks and natural sources of permanency planning, children should live with a stable home and enduring relationships. support. As a guiding principle, natural their families whenever possible. When, due to Reprinted with permission from the Center on Human Policy, Syracuse University, Syracuse, New York, http://thechp.syr.edu/famstate.htm. sources of support, including neighbors, family crisis or other circumstances, children 16 Overview Understanding Adoption Subsidies: An Analysis of AFCARS Data

Adoption subsidies are perhaps the subsidies and adoption outcomes, includ- cent) were identified as having special single most powerful tool by which the ing the rate of adoptions among eligible needs, the primary bases for providing child welfare system can encourage children and the timeliness of adoption. a subsidy. The special needs definition adoption and support adoptive families. The analyses presented in this report used in adoption varies by state, but The federal Adoption Assistance Pro- [for full report see http://aspe.hhs.gov/ includes both disabilities and other gram was created by Congress in 1980 to hsp/05/adoption-subsidies/] explore factors, such as age, that make finding ensure that families adopting foster chil- patterns of subsidy receipt, and how sub- an adoptive home more challenging. dren with special needs could do so sidies are related to adoption outcomes • The median monthly subsidy amount such as the rate of adoptions among eli- was $444 per month. At the state gible children and how quickly eligible level, median subsidies ranged from children are adopted. Questions of inter- $171 to $876 monthly. Although The federal Adoption Assistance est include the extent and funding of states have the option of offering pay- subsidies; the relationship between ment agreements that don’t start im- Program was created by Congress in children’s characteristics, foster care mediately, providing the basis to experiences, and subsidy receipt and award a subsidy in the future if the 1980 to ensure that families amount; and variations among states in child’s needs change, very few adopted subsidy practice. These analyses use children were shown as having an adopting foster children with special AFCARS data representing all adoptions from foster care during the years FY 1999 needs could do so without reducing to FY 2001, with additional data from the AFCARS foster care file for 2001. Three Nearly all adopted children or exhausting their resources. types of analyses are presented: (88 percent) were identified as 1. Descriptive analyses of both national trends and variations among states; having special needs, the primary without reducing or exhausting their 2. Correlations among state-level mea- resources. This federal adoption subsidy sures, examining relationships among bases for providing a subsidy. program entitles all families adopting state subsidy practice and adoption children from foster care with special outcomes; and The special needs definition used needs, who cannot meet their needs, to 3. Multivariate analyses addressing the obtain subsidy support. Federal expen- relationship of child, family, and state in adoption varies by state, but ditures for adoption assistance have characteristics to subsidy receipt and grown rapidly since the program was subsidy amount. includes both disabilities and created, from less than $400,000 in fiscal year 1981 to $1.3 billion in fiscal year At the national level, subsidy practice other factors. 2002, and are expected to approach $2.5 shows some clear patterns in relation to billion by FY 2008. characteristics of adopted children and Little is know about the factors asso- adoptive families. However, the variations among states are also striking. The ciated with the receipt and amount of adoption assistance agreement with subsidies. Data from the Adoption and following key findings represent both national patterns and variations among what appeared to be a placeholder Foster Care Analysis and Reporting Sys- payment of $0 or $1. tem (AFCARS) offer an opportunity to states: examine how states use adoption subsi- • Among newly adopted children re- • Nearly all children adopted from fos- ceiving subsidies, 84 percent received dies to help achieve goals of perma- ter care in recent years received an nency and well-being for children. Of federal adoption assistance through adoption subsidy. Nationally, 88 per- Title IV-E. States with higher rates of particular interest to this study are pat- cent of children adopted in FY 2001 terns of subsidy receipt, the role of fed- Title IV-E eligibility provided subsidies received an adoption subsidy, with to more children. Multivariate analy- eral support for adoption subsidies un- subsidy receipt ranging from 13 per- der Title IV-E of the Social Security Act, ses found associations between Title cent to 100 percent across states. IV-E eligibility and subsidy receipt and and the relationship between adoption Nearly all adopted children (88 per-

amount. States with higher federal relatives. Children adopted by single ses may be possible using state adminis- matching rates (indicating lower females received higher subsidies trative databases, with greater opportu- state per capita income) offered than those adopted by married nities to compare children’s foster care lower subsidy amounts, suggesting couples. and adoption experiences. These analy- that even augmented federal contri- • Analyses found some support for ses, however, make use of AFCARS to butions did not offset limited finan- associations between subsidies and provide an overview of how adoption cial resources within these states. adoption outcomes. State-level analy- subsidies are used to encourage perma- • Children’s age and special needs sta- ses show a significant correlation nency for children. tus influenced subsidy receipt and between subsidy receipt and the per- amount. Older children were more cent of each state’s eligible children Reprinted with permission from “ASPE likely to receive subsidies, and to re- who are adopted. Multivariate analy- Research Brief : Understanding Adoption ceive larger subsidies; race and sis found that children living in states Subsidies: An Analysis of AFCARS Data” ethnicity did not influence subsidies. where the median time to adoption (2005), published by the Office of the Boys received slightly higher subsi- was longer were more likely to re- Assistant Secretary for Planning and dies than did girls. ceive subsidies, and received higher Evaluation (ASPE), U.S. Department of Health and Human Services. Retrieved • Pre-adoptive relationship and other subsidies. Possibly, states are using 12/29/05 from http://aspe.hhs.gov/hsp/ characteristics of adoptive families subsidies strategically to address the 05/adoption-subsidies/researchbrief. htm. influenced children’s subsidies. Chil- backlog of waiting children in foster The full report is available at http:// dren adopted by foster parents were care and meet their adoption goals. aspe.hhs.gov/hsp/05/adoption-subsidies/. more likely to receive subsidies than The limitations of the AFCARS data others. They also received higher set suggest that more compelling analy- subsidies than children adopted by

Information on Adoption Subsidies in Each State

The National Adoption Information Clearing ents can receive reimbursement of certain Medical Assistance house Web site offers information on state- approved, "one-time" adoption expenses • What mental health services are provided funded adoption assistance programs in each incurred in the process of finalizing a spe by your State? of the states.The clearinghouse (http:// cial needs adoption). • Does your State provide additional naic.acf.hhs.gov), a service of the Children's • Does your State enter into deferred adop finances or services for medical or Bureau, Administration for Children and tion assistance agreements? (In some therapeutic needs not covered under your Families, U.S. Department of Health and States, adoptive parents can enter into an State medical plan to children receiving Human Services, provides details on the agreement in which they choose to defer adoption assistance? following for each state: the receipt of a Medicaid card, the Fair Hearings Who is Eligible for Adoption Assistance? monthly monetary payment, or both and • What is your State's process for applying • What specific factors or conditions does can elect to receive the Medicaid card for a fair hearing? (A fair hearing is a legal, your State consider to determine that a and/or monetary payment at another administrative procedure that provides a child cannot be placed with adoptive par time.) forum to address disagreements with ents without providing financial assis • When may adoption assistance pay agency decisions). tance? ("What is your State definition of ments and benefits begin in your State? Web/Internet Links special needs?") • How are changes made to the adoption • What is your State Web address for • What are the eligibility criteria for your assistance agreement in your State? general adoption information? State-funded adoption assistance pro Post-Adoption Services • What is your State Web address for gram? • What types of post adoption services are adoption assistance information? • What is the maximum amount a family available in your State and how do you • What is your State Web address for State- may receive in non-recurring adoption find out more about them? specific medical assistance information for expenses from your State? (Adoptive par- children? Description adapted from http://naic/acf.hhs.gov/parents/prospective/ funding/adopt_assistance/. 18 Overview Youth with Disabilities Aging Out of Foster Care: Issues and Support Strategies

by Katharine Hill and Pam Stenhjem

The transition from high school to adult flect the same basic needs and goals for IDEA and Chafee requirements are life can be exciting, but also challenging youth. The Individuals with Disabilities complimentary and have the potential and even frightening. Young people are Education Act (IDEA) ensures youth to strengthen one another when com- expected to live independently, continue with disabilities receive individualized bined. Best practice would dictate that their education, pursue careers, establish supports and services to successfully these federal requirements and planning relationships, and participate in their complete high school and transition to processes be coordinated when planning communities. Meeting these goals is only postsecondary education, employment, for the transition of foster youth with part of the picture for youth with dis- and adult life. The Individualized Educa- disabilities. abilities; additional social, academic, tion Program (IEP) plan ensures forma- health, and environmental barriers must tion of concrete goals with measurable Youth with Disabilities in Foster Care also be addressed (Lehman, Hewitt, outcomes based on each individual’s Bullis, Rinkin & Castellanos, 2002; future plans (NCSET, 2002). IDEA’s The prevalence of youth with disabilities Cameto, 2005). Add foster care to this definition of transition planning implies in long-term foster care mandates spe- a comprehensive process addressing all cific attention and action. Although life domains, including a “coordinated Chapin Hall’s 2005 longitudinal Mid- set of activities” planned and imple- west Study of youth aging out of foster As foster youth with disabilities mented by a transition team of educa- care excludes youth with developmental tion and service representatives, the disabilities or severe mental health prob- age out of the child welfare parent/caregiver, and ideally the youth lems, nearly half the youth report receiv- themselves (Lehman, et al., 2002; ing special education services (Courtney, system, coordination of transition Cameto, 2005). 2005; Courtney, Terao, & Bost, 2004). The John H. Chafee Foster Care Inde- Ironically, disabilities are rarely studied planning among key agencies and pendence Program of 1999 doubles the in relation to child welfare and are even amount of money available to states for less frequently considered in the transi- systems is imperative. independent living services, provides tion from care (Geenen & Powers, increased flexibility for development and 2006). implementation of Independent Living The National Evaluation of Title IV-E Programs (GAO, 2004), and supports Independent Living Programs found fos- mix of challenges for youth with disabili- outreach programs, education and ter youth with disabilities are less likely ties and successful outcomes can be sig- employment assistance, daily living skills to be employed, graduate from high nificantly jeopardized. Youth aging out training, individual/group counseling, school, have social support, or be self- of foster care must first address basic, and service coordination. A required, sufficient compared to non-disabled critical needs such as housing or medical transitional independent living plan peers (Westat, 1991). In general, they care that youth in stable situations do not supports youth to: develop critical com- have poor school performance, lag be- face (Osgood, Foster, Flanagan & Ruth, petencies; obtain education, career coun- hind in academic achievement, and ex- 2004). Foster youth experience many dis- seling, physical/mental health care, and perience significant challenges to aca- ruptions growing up and often require housing; develop relationships with car- demic success (Geenen & Powers, in extensive supports in transition to adult- ing adults; access community resources, press). Although many foster youth have hood (Massinga & Pecora, 2004). This ar- public benefits, and services; and acquire disabilities and should receive special ticle addresses the unique needs of foster daily living skills (Pokempner & Rosado, education services, multiple moves, youth with disabilities and best practices 2003). Up to 30% of program funds can school changes, and inconsistent adult in the transition planning process. pay for room and board. Education and advocacy for comprehensive and appro- Training Vouchers up to $5000 per year priate IEPs means this is often not the case (Badeau, 2000). Impact of Legislation are also available. States must coordinate Chafee programs with runaway, home- A comparison of the IEP/ITPs (Indi- Federal legislative mandates protecting less youth, and housing programs; work- vidualized Transition Plans) of 45 foster youth with disabilities as well as those in force agencies; disability services; and special education students with the IEPs foster care are very compatible and re- tribal entities (GAO, 2004). of 45 special education students not in

care (Geenen & Powers, in press) indi- Almost 63% were not enrolled in an edu- compliment requirements within IDEA: cates the foster youth were significantly cation or training program and only 11% youth involvement, healthy and safe en- less likely to have independent living and were enrolled in a 2- or 4-year college. vironments, healthy relationships, learn- postsecondary education goals. Foster Fewer than half were employed, and for ing by doing, creating community part- youth and educational advocates rarely those who were, employment was spo- nerships, interdependence, and feedback attended IEP meetings and low wage jobs radic, rarely providing financial security. and self-assessment. In addition, the with little opportunity for advancement Less than half received independent liv- National Resource Center for Youth were the norm. In addition, IEPs indi- ing services and only 50% received educa- Development has identified four core cated very few extracurricular activities tion services. Twenty-five percent did not principles for successful transition from and lack of self-determination training, have enough to eat and one in seven had foster care (Kessler, 2004) that also align person-centered and career planning, been homeless. Nearly half of the fe- with and enhance IDEA and CWLA and mentoring activities. None of the males were pregnant by age 19 and were standards: 1) positive youth develop- IEP plans made any reference to the tran- more than twice as likely to have at least ment promoting self-determination, sition planning process occurring in the one child. Thirty-three percent had been communication, and problem-solving child welfare system. arrested in the last year and 23.7% spent skills; 2) collaboration that includes func- at least one night in a correctional facility tional linkages among child welfare Youth Aging Out of Foster Care (Courtney et al., 2005). systems, schools, medical/mental health Foster and Gifford (2004) found services, foster care providers, and other Aging out of foster care is challenging for approximately one-third of youth leaving human service and community agencies; a variety of reasons, including lack of foster care were receiving public cash as- 3) cultural competence that extends family/caregiver support, confusion sistance within two years. Other studies beyond race and ethnicity to disability, about services, and lack of thorough, indicate youth who leave care are more sexual orientation, religion, and gender realistic planning. Child welfare typically likely to struggle with drug and alcohol and reflects diverse backgrounds, focuses on temporary child removal as abuse (Massinga & Percora, 2004) and to strengths, unique cultural issues, and be suspended from school or expelled traditions of youth and their families; (Courtney, Terao, & Bost, 2004). Thirty and 4) family and community connec- to forty percent of foster youth have tions that are maintained and strength- Foster youth with disabilities chronic medical problems (GAO, 2004) ened through participation in the transi- and twice as many have repeated a grade, tion planning process. aging out of care require changed schools, or enrolled in special Foster youth with disabilities aging education as compared to their peers. out of care require careful, coordinated careful, coordinated planning planning that aligns the IEP with the Supporting Youth with Disabilities National Resource Center for Youth that aligns the IEP with the Development’s four core principles and As foster youth with disabilities age out CWLA Standards of Excellence. Youth National Resource Center for of the child welfare system, coordination must learn self-determination skills of transition planning among key agen- through formal goals on their plan and Youth Development’s four cies and systems is imperative. Frey, be actively engaged as leaders in the Greenblatt & Brown (2005) states: planning process (Wehmeyer, Palmer, core principles and CWLA “Aging out” without a permanent Agran, Mithaug, & Martin, 2000). Con- family and/or adequate preparation sistency in planning, especially for those Standards of Excellence. for adulthood is a crisis. It is a per- that transfer between numerous foster sonal injury to each and every youth placements, must be addressed. in care and a public emergency for Additional recommendations to im- our national child welfare system. prove the transition of foster youth with well as reducing time spent in foster care. (p. 1) disabilities include: Nevertheless, numerous children spend • Concrete, Integrated Transition Transition planning has evolved from considerable time in foster care, many Plans. Transition plans must contain a systems-driven approach to the current remaining until emancipation with specific goals, action steps, and clear best practice of youth-driven, strengths- approximately 20,000 adolescents leav- responsibility designation to ensure based transition planning (Lehman, et ing foster care each year (GAO, 1999). success. Service needs and agencies al., 2002; NCSET, 2004). The Child Wel- Foster youth in the Midwest Study must be integrated and build upon fare League of America’s (CWLA; 2005) faced a broad spectrum of challenges supports and services available, when aging out (Courtney et al., 2005). recently-released transition standards [Hill, continued on page 39] 20 Profile Caring for Children with Special Needs: The Reeves Family’s Experience

by Paula Reeves

Our family is pretty unique. Our children help of the Internet and interstate foster ones. Jacob has since caught up in his de- are a mix of races and abilities, ranging and adoptive care systems. Our family velopmental milestones, but Christian from age 2 to 31 years. And there are lots began with our first biological son Conor continues to deal with delays in all areas of them – 11 to be exact. Even now when in 1980. Three years later we adopted of development. He learned to walk we travel in a pack of eight we cause lots Chad, who has Down syndrome and was shortly before coming to our family be- of neck craning. Most people make ad- eight at the time. Seven months after that cause, according to his foster family, miring comments, but occasionally the Jonathan was born. In 1984, Kelsey Jacob walked and sibling rivalry got the looks are not friendly and are more along joined us at four months of age, and in best of him. the lines of “the circus just arrived.” We 1986 Melissa arrived from Korea at 13 As you can imagine it takes more than are quite used to it, although my hus- months of age. We settled in for awhile just Mark and I to meet all their special band, Mark, prefers anonymity and before Christopher joined us as a foster needs. Having so much experience helps, sometimes feels like the bug under the newborn and became Reeves #6 in 1990. as does having adult and teen children In 1997, Shannon joined us at 11 months who are nonplussed by their siblings’ of age and we knew she would bring extensive needs. For us, this is normal. some challenges with her. Over the next Even so, it can be exhausting to identify We have had many social workers, year or two Shannon was diagnosed with support needs, locate providers, and start cerebral palsy, a seizure disorder, and a services for each new arrival. This can be medical providers, and other visual impairment. She had a gastros- challenging for us even though we know tomy-tube permanently placed for feed- where to go for the help we need. We professionals involved in our lives ing and received the general diagnosis of have learned many valuable positive and developmental disability. She has been, challenging lessons in our years of foster- and the lives of our children over the by far, our most physically challenging ing and adopting children who have child and the most beautiful blue-eyed disabilities. years. We have watched policies and blond who has all of us, especially daddy, We have worked primarily with public in the palm of her hand. child welfare agencies; however we have funding change, and for the changes We jumped on the fast-track adoption worked with private agencies as well. train again in 2001, adding the first of Perhaps the most difficult part of our fos- that improved our lives, I am our four African-American children. Ella ter and adoptive processes was working was just six months old and came from simultaneously with social workers from grateful. However, some made no Michigan. She is quite precocious and two different systems: child welfare and has a charismatic personality. Without disability services. When you add the sense or are too complicated. Ella we may never have cracked Callie’s out-of-state component, things become shell. Callie came in 2003 at two-and-a- even more complex. The adoption or fos- half years of age. As a consequence of ter care workers typically worked in dif- spending the first nine months of her life ferent buildings than the disability work- magnifying glass. Generally, we forget in intensive care without family to cheer ers. Sometimes all the workers did a good what a sight we must be. her on we have been dealing with reac- job of communicating with each other We became foster and adoptive par- tive attachment disorder. She is an inspi- (and us) and other times it was cumber- ents in the early 1980s and have contin- ration as she shows the strength of the some and challenging. Our best experi- ued caring for children for almost 20 God-given human spirit to survive, and ences were when we had a “team” years. We have cared for about 25 chil- to learn to love, express emotion, and because we could all discuss our child’s dren through foster placements. Most of trust after knowing nothing but a lack of needs, address barriers, and work on con- these children have had special needs. all those. The end of 2004 brought us flicts that arose due to multiple system We have also adopted nine children. our first sibling group, although not bio- involvement. The team consisted of the Some of the children we have adopted logical. Jacob was two years old and child welfare worker, the disability were our own foster children, others Christian was seven years old. They were worker, a previous foster parent (if there were in foster care with some of our foster siblings in a very loving foster was one) who knew our child’s support friends and still others we found with the home. They were both premature little needs, and us.

alternative for our house as our entry was too steep. Then, the subsidy office referred us to a consultant specializing in accessibility to reassess the situation. We had to attend several subsequent meetings only to be told that subsidy dollars couldn’t be used to pay for an elevator. This meant we needed to finance $30,000 (which we did) as a second mortgage on our home. Only then did our county disability worker inform us that we might be able to get a different type of funding to pay for the elevator. Funding was available through a one- time grant, available only if there is ex- cess money in the county budget at the end of the year. Ultimately we were able to work within the system to get a The Reeves family children: (left to right in back) Shannon, Chad, Kelsey, Chris with Callie, Conor with Christian; $20,000 reimbursement. That experi- (left to right in front) Melissa, Jacob, Jonathan and Ella. ence was very frustrating, expensive, and time-consuming. Why wasn’t the Another challenge we faced many cal profile. This was very helpful for accessibility consultant involved from times was being asked by child welfare communicating with other support ser- the start? Why didn’t we know about agencies to consider fostering or adopt- vice providers. A challenging part to the one-time grant funds? All we wanted ing a child without sufficient informa- providing care for our children is han- was to help our daughter safely enter her tion to make a decision. We’ve had dling all the paperwork and learning the home. enough experience to know what we can funding streams. Adoption subsidies We have had many social workers, handle and what we cannot handle. provide monthly stipends for the care of medical providers, and other profession- Without the proper information, our de- the children. Medical Assistance pro- als involved in our lives and the lives of cision is impossible to make and a place- vides financial support for the children’s our children over the years. We have ment might be made and consequently medical needs. When we adopted Chris- watched policies and funding change, disrupted simply because we were not tian and Jacob we had to work through and for the changes that improved our given the full picture. We were told one two state systems. Although Minnesota lives, I am grateful. However, some time that we had been chosen for an agreed to provide Medical Assistance for changes made no sense or are too com- adoptive placement for a child we knew the boys, formal applications still had to plicated. Many of us who parent special nothing about. After asking just three be submitted and six weeks passed be- needs kids are, frankly, too tired at the questions I knew our family could not fore they were approved. Meanwhile, end of the day to send e-mails or call our serve that child well. Lots of time could due to their medical issues and prescrip- representatives. We look to the social have been spared had the social worker tion needs, we spent about $500 out-of- workers to advocate for good outcomes simply given us some basic information pocket. We were fortunate to have the for our kids. in a phone conversation. resources to cover those expenses while As I personally hit the half-century Medical aspects of the children’s care waiting for reimbursement, but not all mark I am heartened by how far we have can be complex, entailing both positive adoptive and foster parents do. come and am hopeful as to what lies and challenging experiences. Christian When we adopted Shannon we had ahead in our children’s lives. What we and Jacob had a fabulous social worker written into her adoption subsidy con- do for the “least of these” as a society in Texas who was extremely conscien- tract that she might need a ramp one will tell the story of what kind of human tious and sent us every piece of paper day to get her into our home. As she beings we were. ever written about them. The University grew and the need arose, we approached of Minnesota’s U Special Kids program – the state subsidy office (yet another gov- Paula Reeves and her family live in a Department of Pediatrics program that ernmental agency) about our need for a Burnsville, Minnesota. provides care coordination to children ramp. They informed us that two esti- with complex medical problems – mates would be required before they graciously condensed piles of Christian’s would assist in the payment. The two medical reports into a seven-page medi- contractors said an elevator was the only 22 Profile Serving Children and Youth with Disabilities: A N.C. Social Work Supervisor’s Perspective

David Fee is a social work supervisor in the laboration appears to be somewhat lack- that mandate a service that is not readily Mecklenburg County Youth and Family Ser- ing between the two systems so workers available. Our agency is then put in the vices, Mecklenburg, North Carolina, which are not “armed” with the resources and position of trying to create that service includes the city of Charlotte. In this inter- information they need to serve families or “force” a provider, such as another view, he talks about his experience serving with children who have disabilities. county agency, to create the service. This children and youth with disabilities in the Social workers receive plenty of training can result in an adversarial rather than county child welfare system. in substance abuse, sexual abuse, the collaborative relationship. Third, we legal system, working with families, etc. need to collaborate with the county de- Q. Briefly describe your child protec- I’m not aware of any formal training on velopmental disability workers; these tive services (CPS) context. disabilities except what they receive in workers are located in another building college or graduate school. and the staff is largely unknown to the A. The Mecklenburg County Depart- child protection staff. Fourth, our agency ment of Social Services has a separate Q. What is your role in supporting is affected by budget shortages and high division that covers child protective ser- CPS workers so they are prepared to caseloads (like everyone else) and it is vices: Youth and Family Services (YFS). work with youth with disabilities? more difficult for us to create specialized The YFS agency has three basic divisions A. My role is to assist them in finding services that may be needed by children – Investigations, Family Intervention, “experts” who are knowledgeable in pro- with disabilities that we serve. Lastly, and Permanency Planning. I work in the viding appropriate services to children and perhaps most importantly, is the Permanency Planning Unit. Permanency with disabilities. When a worker on my lack of disability awareness and training Planning is responsible for all aspects of team encounters a case involving a child for child protection workers. a child’s care, especially placement. We with an educational disability, I refer that Q. What can you do as supervisor to have 10 teams of social workers, plus a worker to our staff educational liaisons. address these barriers? specialty unit that deals with teenagers If a worker has a case involving a child with significant mental health needs. I with a physical disability, I refer the A. I would like to maintain a library of supervise a team of permanency plan- worker to our agency nurses who assist disability resources in my office. Workers ning social workers that varies between with cases involving medical issues. The would have the ability to reference dis- four and six in number. At any given local Area Mental Health Authority is ability-related text to increase their time, Mecklenburg County has about our main resource for assisting children knowledge on the issues that children 1,000 children in custody. The number with disabilities related to their mental and youth with disabilities face, their of children and youth with disabilities in health. Developmental disability social needs, and ways to provide appropriate placement are unknown. workers, who also work for the county, services to them. I would also like to Q. From your observations as a su- assist us in cases where the child or youth make better use of the Internet for the pervisor, what are the things that has an intellectual or developmental dis- same purpose; social workers are on the CPS workers struggle the most with ability. Overall, I think my agency has go constantly, and surfing for informa- when it comes to working with fami- adequate resources and working relation is a luxury they cannot usually af- lies and kids with disabilities? tionships with disability providers, but ford. I can do more of that and share the worker awareness and training are still most updated disability information A. Most of our social workers do not inadequate. with them. I also intend to make better have a basic awareness of disability is- use of our monthly unit meetings to sues. They lack appropriate vocabulary Q. What are systemic barriers to suc- teach my workers about disability aware- such as “person-first language.” When cessful services for children with dis- ness, person-first language, and basic one disability-related intervention is put abilities who are in the CPS system? communication approaches that can be in place, it is tempting to assume that the A. We face numerous systemic barriers. used when working with children with entire situation has been resolved. Work- Five appear to impact us on a daily basis. disabilities, such as intellectual and ers also struggle when children are reuni- First, we don’t have many disability developmental disabilities. fied with parents whose understanding advocacy organizations, or at least ones of disability issues is also inadequate. that interact with us in child protection. David Fee may be reached at 704/336-6659 Our social workers are not equipped to Instead of coming together to help chil- or [email protected]. He was educate them. Disability resources are dren, we seem to work in isolation. Sec- interviewed by Traci LaLiberte of the not well known within child welfare. Col- ond, we are often bound by court orders Institute on Community Integration.

I have been a social worker in the child specialized needs. There is a need for contracted through the child welfare welfare field for nine years, working pri- more specialized and community ser- department. Flexible funds are part marily in child protection investigations vice providers equipped to meet the of our annual budget set aside for and in permanency planning for chil- special needs of children with dis- family expenses such as rent, security dren. I supervise a child protection unit abilities and their families. deposits, and furniture. Flexible funds in Meriden, Connecticut, and over the • Provider turnover. Many of our can also be used to tailor existing ser- years have worked with numerous fami- provider agencies use interns who vices to meet the needs of the child lies with children who have disabilities. change agencies every year. Children and family. Child welfare services in Connecticut become comfortable and trust one • Alternatives to foster homes. To have evolved over time. In the past 15 therapist, and then that person leaves address the foster home shortage for years, our staffing has doubled and our and another comes in to start over. children with disabilities, we have caseloads have been cut in half due to a This cycle is damaging to the many sought extended family members federal court order. With more time to children who have a difficult time who are willing to care for children. spend with each family, service delivery trusting and confiding in adults. The They are often aware of the child’s has improved; this is a positive step for provider’s limited budget forces them needs and how best to meet them. We all families, especially those with chil- to make the difficult choice between also have implemented “Safe Homes,” dren with disabilities with whom it often having continuity of care and being group care facilities where children go takes extra time to identify and meet the sensitive to children with disabilities. for the first 45 days of their place- needs of the children. However, we also • Lack of appropriate foster homes. ment and are evaluated for placement continue to face many challenges. We are in need of foster homes who needs. Recommendations identify the are prepared to care for children with types of things that we must look for Challenges and Strategies various types of disabilities. There is in a suitable foster home or other a lack of families who are willing to placement. There are five primary challenges I’ve ex- accept children with specialized • On-the-job training. On-the-job perienced in working with children with needs into their homes. Recruiting training is used to assist workers who disabilities and their families as they are foster homes is currently a challenge are not experienced with children involved with our child welfare system: nationally and the challenge to with disabilities and their families. • Parental issues and needs. Often recruit foster homes to care for chil- New workers often collaborate with the issues associated with a child’s dren with disabilities is more severe. workers who have experience working disability are in addition to other • Training for child welfare staff. with children and youth with disabili- challenges faced by the families that Our child protection staff does not ties. These workers serve as a sort of come into contact with our child wel- receive a great deal of training re- “mentor” and direct the less experi- fare system, such as domestic vio- lated to working with children with enced workers to needed resources. lence, substance abuse, unemploy- disabilities. As new workers are ment, and/or poverty. For parents hired, these cases are difficult for Conclusion who are unable to manage the chal- them to manage and often take a lenges they face, physical abuse, se- great deal of their time as they try to The children in my care rely on me for vere neglect, and sexual abuse of their learn about the child’s disability, ser- support, protection, safety, and comfort. children may occur. We often see par- vices options, and conduct all other Children and youth with disabilities have ents who do not have sufficient emo- case management activities. unique needs and we must continue to tional or financial support to raise strive for better services and outcomes their child who has a disability. Some of the strategies that we use to for these children and their families. successfully address these challenges, • Lack of specialized providers. Janis Courter is Social Work Supervisor with are the following: Even with increased state funding the Department of Children and Families,

over the past several years, we lack • Flexible funds. Flexible funds are Meriden, Connecticut. She may be reached

the resources necessary to provide one way we can assist families to ob- at 203/238-8413 or janis.courter@po.

adequate care to our children with tain services which otherwise are not state.ct.us. Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/191/default.html). Citation: Gaylord, V., LaLiberte, T., Lightfoot, E. & Hewitt, A. (Eds.). (2006). Impact: Feature Issue on Children with Disabilities in the Child Welfare System 19(1). [Minneapolis: University of Minnesota, Institute on Community Integration.] 24 Profile Serving Youth with Disabilities in Minnesota: Two Case Worker’s Experience

by Timothy B. Zuel and Marilee Bengtson

Billy,* a 12-year-old with developmental of adolescents with developmental dis- especially true for children with disabili- disabilities, was picked up by the police abilities. Ten of the thirteen placements ties. This raises the larger question: for the third time in as many weeks at were temporary emergency shelters and Should the child welfare system mandate 3 a.m. while attempting to sleep at a bus Billy resided there until his behavioral early intervention services for this popu- shelter. He was brought to the 24-hour issues resulted in his being removed from lation? Child Protection intake shelter. His the programs. The focus became just Due to legal issues within the child speech was very difficult to understand finding a bed for Billy as opposed to welfare system, Billy was unable to be and he only responded in two- or three- locating an appropriate placement that placed voluntarily; the case required word phrases. He was easily agitated dur- would meet his needs. The placement court supervision from the initial Child ing the interview and looked tired. The issue was more complicated by the fact Protection intervention. Most disability Child Protection worker noted that Billy that for most of the Child Protection services are engaged in voluntarily. Billy’s appeared disheveled, wore dirty clothes, case, the option of a long-term commu- family had always been resistant to out- and had an unpleasant order. nity group home was closed since the side services, therefore Child Protection Through Child Protection involve- child welfare system’s legally prescribed made involvement with Disability Ser- ment Billy was placed out of his home, goal is reunification with the family. It vices a requirement for the case plan. and referred to receive services and case became evident early on that even The failure to fully engage in disability management from county Disability though Billy’s family was concerned and services became part of the Child Protec- Services. The hope was that more and willing, they could not meet his needs. tion legal argument for neglect by the specialized resources could be gained Another challenge was the needed yet family; however that took 18 months to through Disability Services. While under complicated interactions between mul- document and prove. During this time the care of the child welfare system, Billy tiple systems including child welfare, the the court required reunification efforts was increasingly aggressive and contin- public schools, medical professionals, and that impeded the ability to find a ued to run. Until his order to permanent and disability services. With data pri- long-term stable placement. Ultimately foster care, he had 13 different place- vacy, and each system having its own set the court ordered the family to make use ments over a three-year period. All the of rules to govern it, coordinating ser- of Disability Services. while attempts were being made to struc- vices was difficult. It also was evident to Throughout this case the two systems ture a community-based support system all the systems involved that there was a struggled to find appropriate services for that would allow him to reside in his lack of early intervention for Billy when Billy while at the same time satisfying family home with supports and services. he was young and first identified as hav- their respective, sometimes conflicting, Billy did not fit into the practice ing a developmental disability. The first program policies. To better meet the model for Child Protection due to his known comprehensive assessment was needs of youth such as Billy, child protec- disabilities, and he did not fit into the requested by the child welfare system tion units could have a developmental model for disability case management when he was 13 to satisfy a requirement disabilities social worker attached. This due to his Child Protection involvement. for residential consideration. His needs, simple programming change would help We struggled to adjust, dug deeper and and support for his family in trying to navigate the landscape of legal, resource, deeper into resources, and often came to help meet those needs, would have been medical, payment streams, and policy blows with our enormous bureaucracy much easier to address when he was a hurdles. Furthermore, juvenile courts filled with payment streams, processes, young child rather that an aggressive could be better trained as to the special and procedures. In reviewing this case, teenager. needs and services available to youth several issues became clear to us involv- The child protection system model is with developmental disabilities. Finally, ing the interaction of child welfare based on reaction to specific safety we urge the identification and service/ services and youth with disabilities. events. Meeting a child’s need for ongo- support intervention for these children The first challenge we encountered ing services and developmental assess- at a very early age. with Billy was the high number of dis- ments is voluntary on the part of care- Timothy B. Zuel is a Social Work Unit Super- rupted placements. It was clear to us that givers. A family’s reluctance or inability visor in Child Protection; he may be reached the resources of the foster care system to engage in services for a child’s devel- at [email protected]. Marilee Bengtson is a and other residential providers were not opmental needs can have the potential to Senior Social Worker for Developmental equipped to meet the complicated needs profoundly impact the child’s life. This is Disabilities. *”Billy” is a composite of a number of youths’ stories Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/191/default.html). Citation: Gaylord,V., LaLiberte,T., Lightfoot, E. & Hewitt, A. (Eds.). (2006). Impact: Feature Issue on Children with Disabilities in the Child Welfare System 19(1). [Minneapolis: University of Minnesota, Institute on Community Integration.] Profile 25 Specialized Training on Maltreatment and Disability: VCU’s Web Curriculum by Peggy O’Neill

Early identification of abuse and National Center on Child Abuse and Web sites; and a seminar discussion neglect, intervention, and appropriate Neglect, a comprehensive curriculum, guide for use with groups. A wide range treatment are crucial to insure the health Abuse and Neglect of Children with Dis- of topics are addressed, including scope and safety of children and youth with abilities: A Collaborative Response, was and significance of the problem, over- developmental disabilities. Unfortu- developed. The two-day interdisciplinary view of developmental disabilities, com- nately, it can be more difficult to recog- training has been offered in Virginia munication issues, risk factors, family nize maltreatment of these individuals, since 1999, with the joint support of and cultural issues, special consider- and treatment options are limited. Young Virginia’s Departments of Social Ser- ations in the use of medications, recog- people with disabilities may be unaware vices, Education, and Criminal Justice nizing sexual abuse, assessment and that they are experiencing abuse, since Services. The Partnership received fur- documentation, reporting, follow-up and they are often taught to be compliant ther requests from others who needed treatment, prevention, and resources. with anyone in authority. They may also training about maltreatment of people Continuing education credits are pre- be unable to communicate what hap- with disabilities, including justice and approved for nurses, social workers, pened to them, or they may be afraid to courts professionals, health profession- certified counselors, rehabilitation coun- tell for fear of retaliation, loss of care, or als, and other human services profession- selors, psychologists, and other profes- institutionalization. If they do tell some- als. In response, three additional training sionals who complete the course. one, they may not be understood because curricula were developed by the Partner- of communication difficulties, or they ship, including courses on children with Outcomes of the Training may not be believed because of doubts disabilities in the justice system (Reach- about their cognitive or mental abilities. ing Out to Community Kids), women with Nearly 200 professionals from 24 states Isolated from mainstream society, chil- disabilities (Violence Against Women with and 2 other countries have registered for dren and youth with disabilities just may Disabilities: The Response of the Criminal the course. Evaluation comments from not have anyone else to tell. Justice System), and a comprehensive participants who have completed the The Partnership for People with Web-based course on maltreatment course indicate that this online training Disabilities, a University Center for Ex- issues, Abuse and Neglect of Children and is relevant and useful for professionals cellence in Developmental Disabilities Adults with Developmental Disabilities: A from a wide variety of disciplines. Par- (UCEDD) at Virginia Commonwealth Problem of National Significance. ticipants report that they especially ap- University, became involved in develop- preciate the comprehensive information, ing training about abuse and neglect of The Web Curriculum extensive resources and links to other people with developmental disabilities in sites, and easy-to-use format. Among 1997. In that year, a multidisciplinary Developed with the support of the Ad- comments on evaluations are, “I would group of parents and professionals in ministration on Developmental Disabili- recommend this course to everyone em- Virginia who were alarmed about reports ties, the Web course – Abuse and Neglect ployed in the human services field!” and of abuse of children with disabilities in of Children and Adults with Developmental “This course is packed with useful infor- schools and institutions formed the Vir- Disabilities: A Problem of National Signifi- mation that I know will assist me in pro- ginia Coalition on Abuse and Disabili- cance (www.maltreatment.vcu.edu/info/) – viding better services to families and chil- ties. As they uncovered more stories of was created in collaboration with seven dren we serve.” maltreatment, it became clear to this states’ UCEDDs, and five states’ Protec- group that the systems for protecting vul- tion and Advocacy agencies. They facili- Peggy O’Neill is author of the course and nerable children and adults were ill- tated a national review and pilot-test of Abuse and Disabilities Coordinator, prepared to provide adequate services for the curriculum, which became available Partnership for People with Disabilities, people with disabilities. The Coalition online in spring 2005. This comprehen- Virginia Commonwealth University, specifically asked parents, educators, law sive, interactive course features self- Richmond. She may be reached at 804/827- enforcement officers, and child protec- paced instruction; video interviews with 0194 or [email protected]. To view the tive services workers what they needed to children and adults with developmental annotated course outline and sample know about abuse and neglect of chil- disabilities, their caregivers, and disabili- module, visit the course Web site at http:// dren with disabilities. Based on their ties specialists; an extensive bibliogra- www.maltreatment.vcu.edu/info/. input, and with the support of the phy; helpful resources; links to relevant

by Judith S. Rycus

The Importance of Competency- Children who have developmental dis- Based Training egies to address each competency area. abilities, emotional disturbance, mental Classroom training and self-directed illness, or severe behavior problems are One essential strategy for improving learning can help workers acquire the increasingly being served by child wel- child welfare services to children with necessary knowledge base and under- fare agencies. Most of these children disabling conditions is to provide spe- standing of a particular topic. However, who enter the child welfare system do so cialized training to the caseworkers and to develop and master new skills, learn- as victims of abuse or neglect, while oth- supervisors who serve them. While a ers must apply their knowledge in the ers need temporary or permanent out-of- variety of training resources have been real world. Training to develop workers’ home placement because their parents developed for this purpose, the child skills requires opportunities to model cannot care for them. As a group, they welfare profession has yet to uniformly and practice new approaches and behav- are generally described in the child wel- support training at the scope and depth iors, to receive constructive feedback, fare literature as having “special needs.” necessary to serve these children most and to be positively reinforced and They can present significant challenges effectively. A comprehensive, compe- supported by the work environment. to their families, caregivers, and service tency-based training model provides the Appropriate training strategies include providers, and if their special needs and formal structure to support the develop- educational supervision, coaching, peer conditions are not appropriately ad- ment and delivery of timely and relevant supervision, interactive distance learn- dressed and treated in a timely manner, training to staff serving children with ing, and shadowing professionals who these conditions often become more pro- special needs and their families. have mastered the skills. nounced over time, permanently impact- Competencies are statements that ing long-term development and well- incorporate the knowledge and skills Proposed Competencies for Child being (Rycus & Hughes, 1998). necessary for the performance of job Welfare Caseworkers While early identification and timely tasks (Rycus & Hughes, 2000). They are intervention can greatly improve the like- derived from a job/task analysis that In 1985, the Institute for Human Services lihood of positive developmental out- determines the specific knowledge and (IHS) began development of competen- comes for these children, accessing ap- skills necessary to achieve organiza- cies that delineate the array of knowl- propriate developmental and remedial tional and case-related outcomes in a edge and skills essential to provide effec- services can be a significant challenge for manner consistent with standards of tive child welfare services to children families and agencies. Identifying and “best practice.” Competencies are used with special needs. Child welfare and coordinating specialized medical care, for a variety of purposes. They support developmental disability professionals developmental assessment, special edu- the assessment and priority ranking of worked together to review relevant cation, respite care, psychological or psy- each worker’s individual training needs, research, identify activities essential to chiatric services, financial assistance, rec- with the highest priority needs occurring recognizing and serving these children, reational programs, and supportive when considerable development is and articulate the specialized knowledge family counseling is a complex and often needed in competencies that are highly and skills needed to perform those activi- daunting undertaking (Children and relevant to a worker’s job. Supervisors ties. The competencies were used to Family Research Center, 2004). Many use needs assessment data to devise indi- develop standardized training for child child welfare agencies depend on com- vidualized training and development welfare caseworkers and supervisors in munity providers and other service sys- plans with their staff. And, compiled identifying and serving children with a tems to meet the specialized needs of needs assessment data for an entire unit, variety of disabilities. these children and their families. Unfor- agency, or service system enables train- It is important to note that training in tunately, in many communities, special- ing developers to design and provide these specialized competencies must be ized services may be unavailable, under- workshops and other training resources based on a solid foundation of core-level developed, poorly coordinated, or to address high priority needs in a knowledge and skills. Children with spe- inconsistently applied (Rycus & Hughes, timely manner. cial needs are fundamentally no different 1998). This creates additional challenges Sequentially organizing competen- from other children served by the child for workers who have case management cies by their levels of learning (Rycus & welfare system. They need safety, stabil- responsibility for these families. Hughes, 2001) also promotes develop- ity, nurturance, stimulation, love, and ment of the most suitable training strat- support in permanent families. Effective

work with these children and their fami- • Caseworker can refer children for • Caseworker knows how to help families first requires mastery of universal comprehensive developmental as- lies adapt their parenting and behav- child welfare skills: family engagement sessment, and can use this informa- ior management strategies to be and empowerment, safety and risk tion to plan and access individualized appropriate for a child’s special needs assessment, comprehensive family medical, educational, social, develop- and developmental level. assessment, case planning and service mental, and recreational services. • Caseworker understands the impor- provision, placement prevention, family • Caseworker knows the prevalent tance of linking families with educa- reunification, case management, and negative stereotypic attitudes and tional, supportive, and respite ser- interviewing. With that caveat, the fol- misconceptions regarding persons vices within their neighborhoods, lowing are key specialized competencies with developmental disabilities or extended families, and communities, identified for child welfare case workers mental illness, how these attitudes to reduce stress and prevent crisis. serving children with developmental, and stereotypes can interfere with • Caseworker understands the chal- behavioral, and emotional disabilities: the provision of effective services, lenges and barriers encountered by • Caseworker understands how devel- and the benefits of normalization in families in accessing specialized ser- opmental disabilities, emotional promoting children’s development. vices and resources, and can arrange disorders, and behavior problems in • Caseworker can identify children or engage in personal, legal, and sys- children and youth can be both a con- with developmental, emotional, or tem advocacy on behalf of children sequence of child abuse or neglect, behavioral conditions who are at and families. and a stressor to which some parents heightened risk of abuse, neglect, • Caseworker understands the range of may respond with abuse or neglect. or placement disruption in their placement options available for chil- • Caseworker understands the impor- families, and can determine when dren with developmental, behavioral, tance of early identification and inter- out-of-home care is the only option to and emotional conditions, and knows vention to help children and youth assure a child’s safety and well-being. the personal and family characteris- with developmental, emotional, or In addition to the competencies tics associated with successful kinship behavior disorders develop to their above, the following are competencies care, foster care, or adoption of chil- potential. for serving families of children with de- dren with special needs. • Caseworker knows the nature and velopmental behavioral, and emotional These competencies form the founda- indicators of the primary develop- disabilities: tion of standardized training for child mental disabilities, including mental • Caseworker understands the impact welfare workers. As a permanent part of retardation, cerebral palsy, epilepsy, of families’ cultural backgrounds on IHS’ Universe of Child Welfare Compe- autism, and pervasive developmental beliefs about and responses to devel- tencies they help ensure that child wel- disorder (PDD). opmental disabilities, emotional dis- fare workers have the knowledge and • Caseworker knows the potential orders, and behavior problems, and skills necessary to providing effective impacts of fetal alcohol syndrome can provide culturally sensitive inter- child welfare services to children with (FAS)/fetal alcohol effects (FAE), at- ventions within each family’s own special needs and their families. tention deficit/hyperactive disorder community and cultural context. (ADD/ADHD), and prenatal drug References • Caseworker understands the stresses exposure on children’s development Children and Family Research Center, Fostering Results. (2004). View and challenges experienced by pri- from the bench: Obstacles to safety & permanency for children in foster and behavior. care. Urbana-Champaign, IL: School of Social Work, University of Illi mary, foster, kinship, and adoptive nois at Urbana Champaign. [www.fosteringresults.org] • Caseworker knows the nature and in- Rycus, J.S. & Hughes, R.C. (1998). Field guide to child welfare. families whose children have devel- Washington, DC: Child Welfare League of America. dicators of emotional and behavioral opmental, emotional, or behavior Rycus, J.S. & Hughes, R.C. (2000). What is competency-based inservice disorders common in maltreated chil- training? Columbus, OH: Institute for Human Services [www.ihs problems, and the potential impacts TRAINet.com/TRAINet/resources.htm]. dren and youth, including depression, on both quality of care and place- Rycus, J.S. & Hughes, R.C. (2001) Levels of learning: A framework for anxiety, insecure or disordered attach- organizing inservice training. Columbus, OH: Institute for Human Ser ment stability. vices [http://www.ihs-TRAINet.com/TRAINet/resources.htm]. ment, aggression, impulsivity, and • Caseworker can identify strengths anti-social behavior. and capacities of families caring for Judith S. Rycus is Program Director • Caseworker can observe the develop- children with special needs, and with the Institute for Human Services, ment and behavior of children and enter into collaborative partnerships Columbus, Ohio. She may be reached at youth, and recognize developmental with them to enhance their child 614/251-6000 or [email protected]. delays or disabilities, emotional and management and caregiving capaci- behavior disorders, and abnormal ties, and to facilitate access to needed patterns of development. services. 28 Profile Identifying Child Needs: Connecticut’s Foster Care Multi-Disciplinary Screening Program:

by Cathy Gentile-Doyle

Children in foster care have a dispropor- Gastroenterology, Ophthalmology, consultation to DCF staff in areas of tionate percentage of health and devel- ENT, Neurology, Dermatology, children’s health, mental health, and opmental problems that are often missed Pulmonology, and Gynecology. development. or not treated properly. This well-known • Medical complexities and multiple • To collaborate with community initia- fact was the impetus for the creation of health problems requiring immediate tives advocating for and promoting foster care clinics throughout Connecti- coordination of services and re- the health and well-being of children cut during the early 1990s exclusively sources through the hospital’s Center in foster care placement. dedicated to the health and development for Children with Special Needs. These goals are carried out by a multi- of foster children. The State of Connecti- • Prenatal drug/alcohol exposure, HIV, disciplinary team consisting of the fol- cut Department of Children and Fami- or sexual abuse requiring follow-up lowing positions: lies (DCF), operating under a court- by many of the specialty health pro- ordered mandate, requires that all chil- grams at CCMC. • Pediatric nurse practitioner who com- dren entering foster care for the first pletes a health assessment for each time receive a comprehensive examina- • Speech delays and chronic ear infec- child, consults with the team and fos- tion completed by a multi-disciplinary tions requiring comprehensive ter care provider regarding identified team of pediatric professionals within 30 Speech / Language and Audiology assessments and services. health problems, documents findings days, pursuant to an order of temporary and recommendations for appropri- • Hypertonia/hypotonia and motor custody or commitment from the court. ate medical treatment and services. The Foster Care Multi-disciplinary skills delays requiring Occupational Screening Program at the Connecticut Therapy and Physical Therapy. • Clinical social worker/ team coordinator who coordinates team opera- Children’s Medical Center (CCMC) is • Rampant dental caries requiring tion and consultation, obtains case one of the state’s oldest and largest con- pediatric dental treatment. tracted providers of the Multi-disciplin- history from DCF, conducts a psycho- • Medication assessment and prescrip- social and mental health assessment ary Exam (MDE) through their Foster tions. Care Clinic. Though the program at (including interview with foster care CCMC ended in August 2005, for the • Asthma without necessary treatment. provider) documenting specific find- past 15 years it has been very effective in • Fragmented adolescent health care. ings and recommendations for further interventions or treatment, and its dedication to promoting healthy • Substance abuse and sexual activity. development for children in foster care, incorporates all team findings and advocating for each child’s individual The MDE program at CCMC has five recommendations into a summary adjustment and well-being, and support- goals in relation to these children: report for each child that is forwarded to DCF and the foster care provider. ing and empowering foster families. • To identify health, mental health, developmental, and educational needs • Dental hygienist who completes a dental assessment for each child to Program Description of children through an MDE at the point of entry into foster care. identify any dental problems, consults with team, and documents find- Children referred to the program, who • To document the exam outcomes ings and recommendations for dental typically range in age from newborn to with specific recommendations for treatment. 17 years, commonly have one or more of further evaluation or interventions the following health-related problems: and treatment. • Developmental testers who adminis- ter a standardized developmental • Lack of health history. • To provide written reports of out- screening tool to identify develop- comes and recommendations to DCF • Incomplete health records missing mental delays and educational needs, and foster care providers, and advo- documentation regarding primary consult with the team, and document cate for emergency intervention and care provider, immunization status findings and recommendations for treatment when needed. and serious allergic reactions. necessary services. • Heath conditions requiring treatment • To distribute educational materials from specialists in Endocrinology, and resource information to foster This team of licensed professionals con- Cardiology, Orthopedics, Genetics, care providers and offer training and venes once a week and examines an aver-

Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/191/default.html). Citation: Gaylord,V., LaLiberte,T., Lightfoot, E. & Hewitt, A. (Eds.). (2006). Impact: Feature Issue on Children with Disabilities in the Child Welfare System 19(1). [Minneapolis: University of Minnesota, Institute on Community Integration.] Profile 29 age of 12 children over a 4-hour time and brief wrap-up take place to identify Training Resources for span. Last year over 600 referrals were problems and make recommendations. received and processed and approxi- The team first meets briefly to review Child Welfare Workers mately 550 children received an MDE. their findings and the psychosocial infor- When a child is referred to the pro- mation and then recommendations are • Serving Children with Disabilities: gram, their foster care provider is con- presented verbally by the clinical social Handbooks for Child Welfare Workers. tacted by phone and an appointment for worker to the foster care provider prior These free handbooks and companion the Foster Care Clinic is immediately to leaving the clinic. Any foster parent videos from the Georgetown University scheduled to meet the 30-day deadline. concerns or questions regarding the Foster parents are strongly encouraged exam, or follow-up services, or DCF poli- Center for Child and Human Development to accompany their child to the appoint- cies can be addressed at this time. provide child welfare personnel with ment and stay with them as they proceed A copy of the summary report is sent information about a variety of develop through each component of the assess- to both DCF and to the foster care pro- mental disabilities and how to work with ment; this is an opportunity for foster vider documenting specific recommenda- children with developmental disabilities parents to discuss concerns and receive tions and an action plan for each identi- and their families. The three handbooks feedback from each member of the team. fied problem. It is the responsibility of The biological parent is not directly DCF to then coordinate with the foster and companion videos are titled involved with this particular process be- care provider and to pursue the recom- Developmental Disabilities, Supporting cause the focus of the program is aimed mended treatment and follow-up ser- Families with Children with Disabilities, at the needs of the child in the context of vices. In cases where immediate action is and Accessing Services Through IDEA. In their foster care placement. required, DCF is contacted by phone di- addition, a resource manual is available. Upon arriving at the clinic, each child rectly from the clinic to initiate urgent The manuals are online in full text for is welcomed by the team coordinator procedures. and a representative from the Connecti- downloading (they’re no longer available in print) at http://gucchd. georgetown. cut Association of Foster /Adoptive Par- Program Effectiveness ents (CAFAP) who distributes resource edu/topics/special_health_needs/ materials and information, and offers Over 80% of the children referred to the object_view.html?objectID=2597. The support to the foster parents during program present developmental deficits free videos are available by contacting down-time in between each portion of requiring follow-up through community Mary Moreland at deaconm@georgetown. the MDE. First, the child is weighed and programs such as Birth to Three or measured and then examined by the through special education services. Ap- edu or calling 202/687-8803. dental hygienist who conducts a simple proximately 65% have other types of dis- • College of Direct Support. This dental assessment in order to minimize abilities or chronic health/mental health resource provides online, competency- the child’s anxiety. Foster care providers needs that must be addressed, and based training to professionals supporting are offered information regarding dental roughly 70% have acute health care individuals with developmental disabil hygiene and dental treatment resources needs. The rationale for this child welfare in the community. Then they move onto initiative is self-evident: it is in the best ities. Course topics include Introduction to the developmental screening test and a interest of this high-risk population to Developmental Disabilities; Maltreatment tester administers the appropriate test obtain necessary services and treatment of Vulnerable Adults and Children; based upon the child’s age range. Foster as soon as possible. This program has Individual Rights and Choices; Positive parents are invited to exchange informa- successfully demonstrated a cost-effective Behavior Support; Supporting Healthy tion and concerns regarding their child’s approach to achieving positive outcomes Lives; Supporting Family Connections, development and may receive recom- and better futures. The foster care clinic mendations and advice from the tester. minimizes fragmentation of services Friends, Love and the Pursuit of Happiness; The health assessment is next and each through a seamless network which allows Person-Centered Planning and Supports; child and foster parent meet with the care coordination and access to desper- and Cultural Competence.The training is a nurse practitioner for a health exam and ately needed services that promote collaborative project of the Research and discussion regarding health status. Since healthy child development. Training Center on Community Living at the emphasis is upon assessment, no the University of Minnesota, and MC medical interventions or procedures are Cathy Gentile-Doyle is former Program conducted. Children are referred to a pri- Coordinator for the Foster Care Clinic, Strategies, Knoxville, Tennessee. For mary care provider to assure continuity Connecticut Children’s Medical Center, information on the training options visit of care. Upon completion of all three Hartford. She may be reached at 860/214- www.collegeofdirectsupport.com or call parts of the MDE, a team consultation 3480 or 860/529-4977 (fax). 865/934-0221. 30 Profile Entering a Brave New World: Kennedy Krieger’s Therapeutic Family Care Program

by Tania R. Edghill and Elise Babbitt

Now in her second semester as a college lems and medically fragile conditions. live in the least restrictive, safest com- freshman at a community college in the The program, which is a part of both the munity environments possible. With the Baltimore area, Nicole Jones is still revel- Social Work department and The Family right assistance, these youth can partici- ing in the new experiences and opportu- Center at Kennedy Krieger, helps chil- pate fully in family, school and communities. “College is so great…so different,” dren with special needs find temporary nity life. “The best part of the work is she says. “Everyone wants to be there, or permanent new homes when they can- helping a child reach his full potential in wants to learn and wants to sit down and not live with their parents and all other life,” says Diane Fiala, a dedicated have real conversations.” She loves plan- family options have been exhausted. Kennedy Krieger foster parent. ning her own schedule and enjoys the According to Robert Basler, co-direc- calm, academic atmosphere. tor of Therapeutic Family Care, one of Growing Up and Out of Foster Care While Nicole’s account may seem like the things that makes this program dif- that of any other college freshman’s, it ferent from other therapeutic foster care Working in close partnership with state isn’t. In her 19 years, she has faced much programs is the broad range of condi- and local child welfare agencies, Thera- adversity, and has relied on her inner tions served. Children in the program peutic Family Care matches children strength, and the support of others, to have a history of, or are at risk for, insti- with special needs with families who help her succeed. Removed from her tutional or hospital placements for every- bring stability, love, and attention to birth family, Nicole was placed in thing from emotional disorders to learn- their lives, until they can be returned to Kennedy Krieger’s Therapeutic Family ing disabilities, severe behavior disorders, their families, adopted or transitioned Care program at the age of six. In her pervasive developmental disorders, intel- to independent living. In recent years, younger years, she went through a self- lectual disabilities, cerebral palsy, and the program has found itself in the in- described “rough patch” when she fol- spina bifida. Through Therapeutic Fam- evitable position of having to transition lowed the crowd – skipping school and ily Care, they benefit from placements many of its children, now young adults, challenging her foster parents. She be- with trained families in the Baltimore out of its foster care program. “The pro- came a young mother at age 17, but has region and surrounding counties. gram has been in existence for 19 years, pushed herself to pursue an education Individuals who open their homes to so we are, as a program, at the point while developing into a wonderful, de- foster children with such conditions have where some of the children have now voted parent. Looking back, Nicole redirect access to an interdisciplinary team grown up,” Basler says. “And, we’re hav- members that each time she went down of developmental experts at Kennedy ing to face the issue of transitioning the wrong path, a Kennedy Krieger social Krieger who provide diagnosis, evalua- them.” As these children are now facing worker was there to encourage and re- tion, treatment and research of a vast emancipation, the question of what is direct her frustrations. range of cognitive, physical, and emo- the next step for them has become the Over time, Nicole has flourished with tional conditions. In addition, all foster primary concern. According to Judy the love and support of her foster family and adoptive families are supported Levy, director of Social Work, when and program staff. A part of the foster through a continuum of family-based most young adults leave home they care program for much of her life, services provided by dedicated team maintain their family ties while they Nicole’s college enrollment this past fall members at Kennedy Krieger. These in- learn to take care of themselves. Their is a testament to her will to achieve and clude respite care, adoption services, and families are their safety nets. “For young to the program’s success. specialized training for parents or foster adults in foster care, the system has tra- parents. Training and technical assis- ditionally seen them as ready for inde- Bringing Stability to Children’s Lives tance also are available to community pendence,” Levy says. “We know that’s agencies. Three years ago, the program’s not necessarily true. These children may Funded primarily through the Maryland name was changed from Therapeutic not have their families as safety nets, Social Services and Developmental Dis- Foster Care to Therapeutic Family Care even if they have a connection with abilities Administrations, Kennedy to better reflect the spectrum of family them.” In response, a new component Krieger’s Therapeutic Family Care pro- services it offers, as well as its emphasis was added to the Therapeutic Family gram, which started in 1986, serves more on building and maintaining families. Care repertoire of services: the Transi- than 100 children each year with devel- Kennedy Krieger believes that chil- tion Program. The program is designed opmental disabilities, emotional prob- dren with special needs are entitled to to help youth, who have spent their

childhood in foster care, transition into program. He had been with Kennedy to see me, but now that’s what I want to less restrictive environments, to help Krieger for more than eight years. In his be. Given my experiences, I think I will them gradually become independent. new situation, Mark continued to receive have a great instinct for how to help chil- “We’ve helped them to adjust to their dis- social services and counseling, as he had dren in difficult situations.” ability and understand their trauma,” at Therapeutic Family Care, to address Kennedy Krieger’s Transition Pro- says Paul Brylske, co-director of Thera- any emotional and developmental issues gram encourages students to be proac- peutic Family Care. “They still have a his- he may have faced. At 21, Mark gradu- tive decision-makers. Although Mark tory of trauma and emotional and behav- ated from the program and now lives in was steered in the right direction by his ioral issues. They still have develop- an apartment on his own. Living with his social worker, he took the application mental disabilities. But, they make it to foster family taught Mark vital daily liv- process into his own hands. “As far as this point where they’re ready to transi- ing skills, which helped make his inde- getting into college, my social worker tion into adulthood, and we’re there to pendent situation a success. “I learned took me to the college to get an applica- help them be successful.” how to cook from my foster parents,” he tion, but I did everything else by myself Since Therapeutic Family Care serves admits. At New Pathways, Mark contin- – setting up my schedule, taking the a wide spectrum of children with varying ued to hone the skills he needed to care placement test, meeting with a counse- disabilities and needs, the transition for himself and his surroundings. He was lor, going through the enrollment pro- needs vary greatly. Some adolescents re- responsible for doing household activi- cess,” Mark says. He attended a commu- quire semi-independent living until they ties, such as washing dishes and cleaning nity college in the Baltimore area, where reach age 21. These individuals often the bathroom. Mark’s hopes for his he took general studies courses. Today, share an apartment with roommates, future are clear: “Someday, I plan to own he has a steady job at an area restaurant and case managers help guide them a home,” he says. and continues to dream of his future. In through daily living activities. Others re- a few years, he wants to be a mechanic. “I quire more restricted environments, such Encouraging Education and Work like to fix cars,” Mark says. Through his as assisted living or group homes, be- experiences with Therapeutic Family cause their disabilities prevent them An important component to the Transi- Care, Mark learned at an early age the from independently carrying out daily tion Program is education and employ- importance of keeping a positive attitude living activities. Still others may remain ment, areas in which many children in and persevering, no matter how difficult in the care of their foster parents well foster care traditionally do very poorly. the circumstances. “Stay in school and into adulthood. Therapeutic Family Care But among those in Therapeutic Family use Kennedy as a stronghold,” he advises has partnered with several programs out- Care, 100% graduate from high school others who may be going through similar side of Kennedy Krieger to help young and 50% maintain jobs while in school – situations. “Worry about what you’re people find appropriate living arrange- success rates nearly equal to those of going to be doing in the future and not ments. “We’re intensively working with a children nationwide. Staff and parents what happened in the past.” program called New Pathways,” Brylske encourage students to pursue higher edu- says. “This allows the young adults to cation, as Nicole has done. Nicole credits Building Lasting Relationships share an apartment and receive wrap- her foster parents and Kennedy Krieger around services, such as independent liv- for helping her continue her studies. “My One of the goals of Therapeutic Family ing groups, job coaching and social work foster mother helped me with college Care’s Transition Program is to help chil- case management.” In addition to clinical and financial aid applications and took dren maintain healthy, positive connec- case management services, life skills me to the open houses,” she says. “I also tions to their families and the commu- training, and ongoing support, the Tran- got support from Therapeutic Family nity. According to Brylske, a main com- sition Program also offers young adults Care’s really great social workers. I always ponent of the program is its focus on after-care services to ensure that appro- wanted to go to college to make some- community and family. “The Transi- priate clinical services are received. Tran- thing of myself and they were always tion Program is unique in that it fosters sition coordinators in the Therapeutic there for me and pushed me to do better individual connection and linkages to Family Care program work closely with academically.” With only a handful of services,” he says. The Transition Pro- the youth after they have transitioned to classes under her belt, Nicole already has gram has formed working relationships their new homes, and also when they face clear ambitions. “I always knew growing with community resources, such as other difficult transitions – such as adop- up that I wanted to help people,” says DORS (Department of Rehabilitative tion, starting a new job or experiencing Nicole, who plans to transfer to Coppin Services), to link individuals to commu- the death of a loved one. State University next year to earn a nity services, with the goal of creating In August 2002, Mark Jones, then 18, degree in social work. “When I was relationships and maintaining them. moved from his foster parents’ home to a younger, I never really understood the “These children have been in situations New Pathways semi-independent living purpose of the social workers who came that have led them to have difficulty with [Edghill, continued on page 36] 32 Profile Supporting Deaf and Hard of Hearing Children and Parents in Connecticut

by William Rivera and Diane Wixted

The Connecticut Department of Chil- Initiated by a DCF social work super- Act funding, the committee organized dren and Families (DCF) continues to visor, agencies initially committed to the the “Keeping Families Together: Working move in the direction of “…working task force included the Connecticut with Deaf and Hearing Impaired Cli- within individual cultures and communi- Commission on Deaf and Hearing Im- ents” conference. The conference was at- ties in Connecticut” by incorporating cul- paired (CDHI), the American School for tended by over 150 DCF social workers, tural competence as one of its mission the Deaf, the Connecticut Association of Deaf or hearing-impaired foster parents, statement guiding principles. Until re- Foster and Adoptive Parents, Family Ser- and community service providers. Subse- cently, the current cultural competence vices Woodfield (a private provider with quent conferences in 2003 and 2005 trend has inadequately addressed the a Deaf services program), and Klingberg were equally well-attended. needs of Deaf and hard of hearing chil- Family Services. The Task Force identi- The task force has now expanded to dren and families. The Federal Rehabili- fied three priority areas: 1) Recruitment include the director of the Division of tation Act of 1973 – Section 504, man- of Deaf foster parents or homes where Multicultural Affairs, a DCF staff repre- dates sign language interpreting and foster parents are able to sign; 2) identifi- sentative from each of the DCF area of- communication access as accommoda- cation of resources for Deaf parents, fos- fices and three facilities, the DCF Train- tions for persons with disabilities. Con- ter parents, and children; and 3) provi- ing Academy, the DCF Office of the necticut Public Act 97-272 – Section 6, sion of training to DCF staff and service Ombudsman, the Connecticut Office of Subsection 17a-3, specifically identifies providers regarding Deaf culture, com- Protection and Advocacy, foster parents Deaf and hearing-impaired children in munication, legal access requirements, of Deaf and hard of hearing children, the defined population to be served by and strategies and skills for working with children and Deaf adults, Saint Francis DCF. These concerns, along with the goal this population. Hospital, and social service providers of removing communication barriers In the first year alone, the task force throughout the state. It continues to that might prevent any DCF clients from was responsible for initiating significant meet bi-monthly to identify and address receiving appropriate services, and the system changes within the DCF. Their emerging issues that affect services to the commitment and efforts of a collabora- accomplishments included but were not Deaf children and families in DCF care. tion of determined individuals and agen- limited to, two administrative policies In addition to the outcomes of its work cies, led to the establishment of the Con- that raised social workers’ awareness re- listed above, TTY machines are now necticut Department of Children and garding cultural considerations in work- installed in every office and facility, all Families Task Force on Deaf and Hard of ing with diverse clients, and the delivery workers have been trained and are tested Hearing Persons in February 2000. of services in native language. The 24- on the procedures for utilizing and work- The task force was created to address hour emergency hotline installed a TTY ing with sign language interpreters, and ongoing concerns related to the lack of machine and staff was trained. A DCF the Division of Multicultural Affairs services accessible to Deaf and hard of informational foster care meeting for maintains resources for workers needing hearing children and/or families known Deaf and hard of hearing families was to contact sign language interpreters. to the DCF. Recurring issues such as the held at CDHI. The DCF Training Acad- Also, the DCF recently approved a con- inability of the DCF to count the number emy, in collaboration with a CDHI com- tract with a service provider to train and children and/or families who were Deaf munity educator, began training on deaf- certify an additional 40 sign language in- or hard of hearing, and marginal compli- ness and Deaf culture at each of the terpreters for use with DCF services. ance with federal and state laws related regional offices and all pre-service social to access to services for this population worker trainings. This same trainer pro- William Rivera is the Director of Multi- were identified as clear indicators of the vided training for all hotline staff. Funds cultural Affairs for the Connecticut lack of progress the DCF had made in were secured to film a sign language in- Department of Children and Families, serving this population. Other concerns terpreted version of the DCF video “Be a Hartford; he may be reached at 860/550- were the lack of the knowledge regarding Hero, Be a Foster Parent.” However, per- 6569 or [email protected]. the application of culturally competent haps the most momentous project ac- Diane Wixted is Supervisor of Counseling case practices for protective services complished by the task force in the first Services for the Connecticut Commission on investigators and social workers, and year was a statewide conference for DCF the Deaf and Hearing Impaired, Hartford. strategies for bridging gaps between social workers and community provid- She may be reached at 860/231-8756 or Deaf culture, DCF, and service providers. ers. With Adoption and Safe Families [email protected].

by Veronica Tran

The Los Angeles County Department of grams, and judges from the Children’s with whom they are able to communi- Children and Family Services (DCFS) Superior Court. Several of these profes- cate. The workers in the Deaf Unit have mission is to protect children from being sionals established the Advocacy Council been able to successfully connect fami- physically and/or emotionally abused by for Abused Deaf Children (ACADC), lies to the appropriate resources, work- their families, and to provide social ser- which sought to address the communica- ers frequently correct mistakes (such as vice to these children and their families. tion concerns. After researching the work inappropriate removal of children) Due to the large and diverse population of the DCFS and its handling of Deaf which were based on communication that the DCFS serves, the department clients, the council found that not only errors, and the workers in this unit have saw a need to establish 20 Alternative were Deaf children at higher risk for worked to develop needed services and Specialized Service units. The pur- child abuse and/or neglect, but Deaf within the community to better meet the pose of these specialized units is to pro- children were also being overlooked. The needs of Deaf children and families. vide services targeting the county’s council also found that equal access to An unintended benefit of the Deaf unique populations. The Deaf Unit is one services was provided for most children Unit is that Deaf social workers can be such Alternative and Specialized Service with disabilities, but not for children role models for Deaf children and fami- Unit that was created to serve the Deaf with deafness as their disability. The lies. Many Deaf clients are positively im- community specifically; in addition, DCFS acknowledged inconsistencies in pacted when they meet and learn from American Sign Language (ASL) special- service to clients with Deaf children and Deaf professionals. Such role modeling ists work with the Deaf Unit. after negotiations with ACADC agreed to provides Deaf clients an important sense The need to establish the Deaf Unit establish a Deaf Unit. Workers now are of hope, which communicates that Deaf came after realizing that Deaf families required to refer cases involving Deaf people, like themselves, can be impor- were not receiving adequate services family members to the Deaf Unit. tant and successful members of society. from the DCFS in relation to their spe- Today after 12 years of working exclu- The Deaf Unit maintains a close and cialized needs. Social workers struggled sively with Deaf clients the Deaf Unit has ongoing collaboration with outside with Deaf clients during assessments made tremendous positive impacts in the agencies through meetings with provid- because they were not competent using lives of Deaf children and families. The ers, interagency trainings, and quarterly ASL and lacked cultural awareness of the Deaf Unit is designed to serve Deaf chil- meetings with the ACADC. Agencies the Deaf community. In addition, providing dren and their hearing siblings, Deaf par- Deaf Unit collaborates with include: ongoing and regular services to Deaf ents with hearing children, hearing par- Awakening Drug and Alcohol Abuse clients was difficult and many problems ents with Deaf children, and other family Program for the Deaf, Catholic Big arose. For example, often social workers configurations consisting of at least one Brother and Little Sister mentor pro- had to ask other family members or Deaf client. It provides a full range of ser- gram for the Deaf, Five Acres mental friends to interpret during the initial vices from emergency response to perma- health services for the Deaf, St. John’s assessment; this made the family vulner- nency planning, and is staffed by eight Mental Health program for the Deaf, able and opened the door to errors. Deaf social workers and two hearing so- Child Share Foster Home for the Deaf, Seeking to solve the communication cial workers who are fluent in ASL. These and so on forth. Through tight collabo- dilemma, the DCFS assigned ASL inter- social workers posses the ability to com- ration, the Deaf Unit has the ability to preters to work with social workers. municate well with Deaf clients and have ensure that the Deaf families receive However, this created a barrier between the cultural awareness needed to work equal access and quality services. social workers and Deaf families given with this specialized population. Over that social workers were unfamiliar with time there has been an increase in the Veronica Tran is Children’s Social Worker Deaf cultural norms. Miscommunication number of cases referred to the Deaf with the Deaf Services Unit, County of Los and lack of cultural awareness led social Unit, indicating that hearing workers Angeles Department of Children and workers to misinterpret a family’s situa- recognize the importance of cultural and Family Services, Covina, California. She tion, which sometimes resulted in unnec- linguistic compatibility in the worker- may be reached at 626/938-1774 (voice), essary detention of children. These com- client relationship. Families have ex- 626/938-1775 (TTY) or sanchv@dcfs. munication problems were recognized by pressed appreciation that the child wel- co.la.ca.us. a group of professionals from county fare services they receive are delivered by mental health agencies, educational pro- a social worker that they understand and

by Lee Ann Murphy and Cindy White

Parents In Community Action, Inc. called Special Quest, beginning in 1999, cial needs service systems with which (PICA) provides Head Start and Early that impelled us to more directly address they are involved. The Arc co-facilitator Head Start programs throughout our the needs of parents of Head Start chil- of the group is always available to help county. Born during the 1960s war on dren with disabilities. parents problem-solve and work through poverty, Head Start and most recently Funded by the Hilton Foundation and frustrating issues around school, medical Early Head Start, seek to provide low- the National Head Start Bureau, Special coverage, respite care, and other issues. income preschoolers, infants, and tod- Quest brought PICA staff, Minneapolis dlers a “head start” in development and, Public School staff, and a parent whose Indicators of Success later, in school. Woven in the federal toddler with a disability was enrolled at Head Start legislation is the principle PICA together for an intensive week of The Supported Parenting Program meets that parents are the most important edu- discussion and goal setting. Core mem- every other week and grows in atten- cators of their children. The belief in the bers of this group continued to meet for dance every year. This success is made primacy of parents, together with the three years to set additional goals.The ob- possible because of three very simple but federal Head Start mandate to ensure jective of Special Quest is to increase the time-proven practices: 10% of the enrolled children are children number of infants and toddlers with sig- • Treat parents with the utmost respect, with disabilities, provides the foundation nificant disabilities enrolled in Early which includes greeting them at the for PICA’s Supported Parenting Program. Head Start. Lessons learned with infants door, listening to them and hearing Referrals to the program come from par- and toddlers influenced services to PICA them, and providing them with din- ents, teachers, early childhood special preschoolers as well. That heroic parent ner and a babysitting stipend if baby- education programs, doctors and public who joined PICA and Minneapolis Public sitting on site is not feasible. health nurses, rehabilitation centers, and Schools in the Special Quest effort was from within the child welfare system. the first member of our parenting sup- • Have fun. Life is hard. Life with a child Children entering the Head Start pro- port group, which started six years ago in with a disability can be even harder. gram who have a diagnosed disability partnership with Arc Hennepin-Carver. Life in poverty and with a child with a and are in foster care and/or have a child Arc connects people with community re- disability can be even harder still. protection worker receive priority slot- sources and helps them navigate service • Allow parents to set the pace for the ting. While it is PICA’s mission to sup- systems as well as being the voice for group; they know best what they port and empower all of our families and people with disabilities in public policy. want. Today they may have all the re- develop appropriate opportunities for ferrals and resources they need. Today them, it is the work we do with families Why We Use the Approaches We Use they may just want to talk and share. who have “special needs” children that we have addressed by designing a pro- Because there are many community and Through operating this program PICA gram that meets their special needs. We school-sponsored support groups specific has repeatedly learned the value of part- offer a place where they can find concrete to parents of children with a particular nering. Partner. Partner. Partner. Partner answers to their questions about the law disability (e.g. parents of children with with parents on an equal footing. Partner as it relates to disabilities and education, autism) PICA chose to begin a support with other non-profits who share your and where they can find friendship, group for parents of children requiring mission – they have valuable resources acceptance, and support. enhanced services because of any “special for parents and children with disabilities. The journey to provide the best ser- need.” The goal of the support group is And partner with state and local organi- vices to children with disabilities and to “meet parents where they are at.” Head zations mandated to serve children with their parents began decades ago and con- Start parent/child advocates are encour- disabilities and their families. tinues today with our long-time partner, aged to promote the group and help to Courage, Inc. Courage, Inc. is a non- facilitate enrollment. If parents come to Lee Ann Murphy is Director of Administra- profit rehabilitation organization that group one or two times then the group tion at PICA Head Start, Minneapolis; she empowers people with physical disabili- will keep them coming after that. The may be reached at lmurphy@picaheadstart. ties to reach their full potential in every group is non-judgmental, nurturing, sup- org. Cindy White is Special Services aspect of life. But it was our participation portive and a safe place for parents to Coordinator; she may be reached at 612/ in a national Early Head Start initiative work out their frustrations with the spe- 845-5695 or [email protected].

The following resources may be of inter- sionals locate respite services in their is available for purchase by groups est to readers of this Impact issue. community, and the National Respite wishing to present their own child • National Clearinghouse on Child Coalition, a service that advocates for abuse prevention programs, helps Abuse and Neglect Information preserving and promoting respite in children with disabilities and adults (http://nccanch.acf.hhs.gov). policy and programs at the national, gain information about child physical This clearinghouse offers extensive state, and local levels. The site also and sexual abuse, as well as helps chil- information in the following areas: includes extensive online materials, dren to develop personal safety skills. preventing child abuse and neglect, including factsheets related to chil- It features four multi-racial, child-size overview of child abuse and neglect, dren with disabilities and their fami- puppets that portray children with reporting child abuse and neglect, lies. and without disabilities. Opportuni- and the Child Welfare System. Oper- • Policy Research Brief: Do We ties exist throughout the program for ated by the Administration for Chil- Really Mean Families for All Chil- the children to interact with the pup- dren and Families, U.S. Department dren? Permanency Planning for pets through dialogue and role-play. of Health and Human Services. Children with Developmental Dis- The scripts, geared for children in grades 1-4, address the definitions of • National Adoption Information abilities (2000). This publication ex- physical and sexual abuse, how to get Clearinghouse (http://naic.acf. amines permanency planning poli- help and whom to tell, the need for hhs.gov). This clearinghouse offers cies and practices, and their impli- children to talk about the abuse if extensive information for profession- cations for children with disabilities. they are in such a situation, and feel- als working in adoption, prospective Published by the Research and Train- ings of guilt, isolation and shame adoptive families, individuals who’ve ing Center on Community Living, associated with abuse. In addition to been adopted, and birth parents. It Institute on Community Integration, the puppets, it includes Let’s Prevent includes resources on adoption and it’s available online at http://ici.umn. Abuse: A Prevention Handbook for children with disabilities. Operated edu/products/prb/112/default.html. People Working with Young Families, by the Administration for Children Also available in print; for ordering which looks at child maltreatment and Families, U.S. Department of information call 612/624-4512 or e- risks, indicators, laws, prevention Health and Human Services. mail [email protected]. approaches, and resources. The hand- • Child Abuse and Neglect Disabil- • Child Welfare: Better Data and book includes service issues unique to ity Outreach Project – CAN Do! Evaluations Could Improve Processes families of children with disabilities, (http://disability-abuse.com/ and Programs for Adopting Children Hmong families, and Spanish-speak- cando). A project of Arc Riverside with Special Needs (GAO Report 05- ing families. Also available is the Let’s (California) and the Disability and 292). This report to Congress pub- Prevent Abuse Coordinator’s Handbook, Personal Rights Project. The CAN lished in June 2005 identifies the ma- a guidebook for organizations that Do! Project has three key objectives: jor challenges to placing and keeping assists in the development of a LPA 1) Enhance interagency collabora- special needs children in adoptive program. For further information tions and innovations through state- homes, examines what states and the contact PACER at 952/838-9000, wide Think Tank Meetings, 2) sup- U.S. Department of Health and 952/838-0190 (TTY), pacer@pacer. port the development of training on Human Services have done to facili- org, or visit www.pacer.org. tate special needs adoptions, and child abuse and disabilities, and 3) • The Child Abuse Prevention assesses how well the Adoption Assis- support expansion of data-gathering Network (child-abuse.com). This tance Program and the Adoption on child abuse and disabilities. Its Web site provides extensive informa- Incentives Program have worked to Web site includes documents and tion and resources for professionals facilitate special needs adoptions and information on training and other in the field of child abuse and neglect what changes might be needed. Avail- resources. as well as families. Child maltreat- able online at www.gao/gov/cgi-bin/ • The Let’s Prevent Abuse Program ment, physical abuse, psychological getrpt?GAO-05-292. (LPA). This program is available maltreatment, neglect, sexual abuse, from PACER Center, a national center • ARCH National Resource Center and emotional abuse and neglect are committed to enhancing the quality for Respite and Crisis Care Ser- topic areas. vices (www.archrespite.org). This of life of children and young adults Web site includes information on the with disabilities and their families, National Respite Locator Service, a based on the concept of parents service to help caregivers and profes- helping parents. The program, which

[Johnson, continued from page 1] I always wondered about her. I thought of the other students. My classmates mom; now I know why she did what she about what she was doing and if she called me retarded and teased me about did. It took me a long time to come to missed me. It really hurt me to be away being in foster care. My foster mom said this understanding. from her. It did not feel right being with that I just learned differently, at a differ- I am now the mother of four children, strangers. I was always glad to go back to ent pace. Because of her support, I and having my own kids has taught me a my mom. Living with my family always started to see my disability in a different lot about life. I used to say that when I felt like the best thing to me. way. If I saw her today, I would give her a have my own kids I do not want them to When I was 14 years old, I had my big hug. go through what I have been through in son. A boy in the neighborhood took ad- As a teenager, I had a turning point in my life. I do not want them to grow up in vantage of me, and I later found out that my life. I made some bad choices and got the foster care system. The best place for I was pregnant. Because I was both a into trouble. I was sent to a residential them is with me, as a part of a family. child in the foster care system and an setting called the Laura Baker School for They are the most important part of my underage parent, I became a part of the persons with disabilities. This experience life, and I want to be the best parent that child protection system in a new way. As changed my life. The staff at Laura Baker I can be. That is why I continue to take a parent, I felt that a lot of things I ran were wonderful. They believed in me and parenting classes and receive support. into with child protection were because I cared about my future. My opinions were Most of all, I know now that even though was a young mom with a disability. When important to them. Sometimes the staff I have a disability, I am a good mom. child protection looked at me, it seemed even came to me for advice. It was the to me that they only saw my disability. It first time in my life that anyone seemed Carolyn Johnson lives in Northfield, felt like they used my disability against interested in my opinion. It helped me Minnesota. Jennifer Hall-Lande is a me. I was a good mom, and I took care of to feel confident and to see that I had Graduate Research Assistant at the Institute my son. I even graduated from a important things to share. Now I love to on Community Integration, University of parenting skills program. It felt like I was communicate and give advice. I give Minnesota. Jennifer may be reached at 612/ doing all of the right things, but I still felt them a lot of credit for my success. I also 626-1721 or [email protected]. that they were judging me. Even though I remember a special education teacher had done everything that I was supposed named Mrs. Klinefelter. She understood to do, my son was taken from me. It my needs and abilities. We worked to- [Edghill, continued from page 31] would have been helpful to have had gether on my school work, and together relationships and connections. They’ve someone supporting me, someone who we built up my self-esteem. grown up with us, and we’ve built con- knew me and knew how hard I was trying Looking back at my experiences, there nections with them. We want them to to be a good parent. It seemed that they were many things that I wish had been maintain some degree of connectedness saw my disability, but did not see all of different for me. I learned a lot from my with us and their foster families,” Brylske the ways that I was a good mom. experiences in the foster care system. Yet, says. “We hope they go back to their fos- Some of my experiences in the foster it seems wrong that throughout all of the ter families for an evening meal every care system were positive. When I was years in the child protection system, I once in a while. Without these connec- eight years old, I was placed in a wonder- never had a real relationship with any of tions, foster children are often at risk of ful and nurturing foster home. This foster my social workers. As a child with a dis- ‘falling through the cracks.’” mom showed us love, patience, and kind- ability, it was hard to have so much un- Nicole feels a strong bond to her fos- ness – all of the things a child needs. It certainty and change. A relationship with ter parents. “It seems like I’ve always felt like a real home to me. We each had my social worker could have provided me been in this family, “ she says of their 10- household chores. I learned about clean- with some stability and helped me to feel year relationship. “I’ve learned from ing, cooking, and laundry. She told me less afraid. them not to judge people and to forgive, when I grew up I would have a family, As a parent in the system, I realized because everybody makes mistakes. and that I would be a good mom. It was that I needed more support from the Without their support, I wouldn’t be the so important to me that she took the time child protection system. Losing my son person I am today.” to listen and explain things in a way that I was one of the hardest things in my life. This article by Tania Edghill was originally could understand. She talked to me Later on, I had the opportunity to have published in Touch, Winter 2002, a publi- about my mom, and why she could not him come back to live with me. He was so cation from Kennedy Krieger Institute and take care of us. That was the first time I happy where he was living, I did not want its Atlanta affiliate, Marcus Institute; it was remember someone explaining the situa- to take him away from that. It was hard updated for Impact by Elise Babbitt, Com- tion to me. She also knew I had a disabil- to let him go, but I thought it was best for munications Manager, Kennedy Krieger ity, and it felt like she understood. My him. It is still hurts for me to know that Institute, Baltimore. The Therapeutic disability made me feel badly about my- things could have been different for us. I Family Care program may be reached at self. I could not read, and I was behind all used to have a lot of anger towards my 443/923-3800 or www.kennedykrieger.org. Continuation 37

[Baladerian, continued from page 5] CREDO Meet Monthly with Disability Services and consultants in each state (for information see www.ada.gov). Begin an Adopt “CREDO” as your overall working Hosting or attending monthly collabora- ongoing campaign to conduct outreach philosophy to interact with children with tive meetings with all agencies in your activities to disability service providers, disabilities and their family members: area that provide services to children disability advocates, and families of chil- Treat each child with... with disabilities on a regular basis will dren with disabilities in your area when C - Compassion ensure a better response to children with you are ready to serve effectively and R - Respect disabilities who’ve entered the child wel- accessibly. E - Empathy fare system, and educate disability and D - Dignity other human service providers to the ser- Teach Disability Awareness O - Open mindedness to needs of the vices provided by child welfare agencies. child Conduct cross trainings between child Prior to employment or within six welfare and disability service providers. weeks, all staff shall have completed dis- Recognize When You Don’t Know, ability awareness training. This includes and Ask for Help Conclusion the highest level of administration and the volunteers, clerical and other sup- Be aware when you run into a situation in Through these steps child welfare and port staff. A cost-effective method of which you feel you are in unknown terri- disability service agencies can collaborate gaining information, community posi- tory. Recognize that it is fine to not to to ensure excellence in service delivery to tive regard, and skill enhancement is to know information and to not have skills children with disabilities. The work of yet. However, it is not acceptable to fail to child welfare system professionals seek guidance, or to generate new “tech- demands awareness and skills in many niques” without regard to how these may areas, with recent particular demand for Through these steps child welfare affect the client. For example, it is not cultural and language diversity expertise. okay to fail to interview the child with a Part of recognizing and responding and disability service agencies disability and only interview the adults appropriately to diversity is to assure without disabilities. Seeking guidance that the needs of children with disabili- can collaborate to ensure from your supervisor, local community ties and their families are effectively experts or specialized service providers addressed in child welfare services. excellence in service delivery to is a strength, not a devastating personal failure! References Baladerian, N. (1990). Abuse causes disability. Unpublished manuscript. children with disabilities. Culver City CA: Mental Health Consultants. Committee on Education and the Workforce. (Feb. 17, 2005). Individuals Use the Web and Listservs with Disabilities Education Act guide to frequently asked questions. Wash ington DC: Author. [http://edworkforce.house.gov/issues/109th/educa Make sure your agency’s Web site is tion/idea/ideafaq.pdf ] Davis, L.A. (2000). More common than we think: Recognizing and re hold meetings at disability service agen- “Bobby Approved” – meets proven stan- sponding to signs of violence. Impact: Feature issue on violence against women with developmental or other disabilities 13(3). [Minneapolis: cies, and at advocacy and self-advocacy dards for being accessible for people with University of Minnesota, Institute on Community Integration]. organizations, and to invite them to disabilities. Utilize existing child abuse Protection and Advocacy, Inc. (2003). Abuse and neglect of adults with developmental disabilities: Public health priority for the State of Califor participate in your regular staff and and disability resources online, such as nia (PAI Publication #7019.01). Los Angeles:Tarjan Center for Develop training meetings at least monthly. For Arc Riverside’s CAN DO project (http:// mental Disabilities, UCLA. Sullivan, P. M. & Knutson, J.F. (1998). The association between child mal example, you can rotate your meetings disability-abuse.com/cando), and other treatment and disabilities in a hospital-based epidemiological study. between these agencies and organiza- listservs for consultation, guidance, sup- Child Abuse & Neglect, 22, 271-88. Sullivan, P.M. & Knutson, J.F. (2000). Maltreatment and disabilities: A tions during the year: Centers for Inde- port, and advice and to learn about new population-based epidemiological study. Child Abuse & Neglect, 24, pendent Living; services for people who resources as soon as they are available 1257-1274. are Deaf/hard of hearing, blind/visually such as videos, curricula, training pro- impaired, and DeafBlind; services for in- grams, and conferences. Participate in Nora J. Baladerian is a Clinical and dividuals with developmental disabili- online learning experiences, such as the Forensic Psychologist, and Director of the ties, mental illness, and mobility dis- Arc-Riverside First Professional Online CAN DO Project, Arc Riverside, Los Angeles, abilities; self-advocacy organizations of Training Program on Abuse and Disabil- California. She may be reached at 310/473- persons with disabilities; and disability ity. Make sure to participate in the Arc 6768 or [email protected]. advocacy organizations. By rotating in Riverside National/International Confer- this way, you will include people with ences on Abuse and Disability, the only most types of disabilities and their fami- ongoing national conference on abuse lies and establish valuable relationships and disability. throughout the disability community. 38 Continuation

[Rosenau, continued from page 3] [LaLiberte, continued from page 11] • Special needs adoption subsidies. ability. Disability workers have little family’s strengths and challenges as well Adoption subsidies encourage adop- training in the behavioral consequences as their participation in past and present tion of children with disabilities and of maltreatment. And in each system, services. If a family case is determined to other special needs, and support we’re too busy with our own problems require ongoing child welfare services, it adoptive families, by providing addi- and can’t see how to stretch ourselves is vital that the family be asked to involve tional financial resources to meet the any thinner to attend to children who, other key professionals in the service child’s needs without exhausting after all, are the “other guy’s” problem. planning process. Professionals, such as family resources. The result is that both systems can re- disability professionals and advocates, spond inappropriately. We need to share often have a better understanding of the There are also hopeful trends sup- knowledge, professionals, families, available resources for a person with a porting family life in disability services ideas, training, conferences, and lunch- disability, as well as funding linkages, for children who have challenging needs rooms. than the child welfare professionals may as a result of a disability: The problems are enormous and have. A strong working relationship be- complex; so too must be the solutions. It tween the family, child welfare profes- • Family support. Family-directed ser- takes first looking at ourselves and ask- sionals, and disability professionals will vices are demonstrating creative and ing what we don’t-yet-but-should-know- ensure that a holistic view of problems flexible in-home solutions within the better. Relationships, as we know intu- and solutions. realities of limited resources, includ- itively and scientifically, are at the heart ing the use of cash subsidies. of what children need and that includes • Shared parenting. Arrangements ex- children with disabilities. Committed Conclusion ist whereby community families are and personal relationships are more Child welfare professionals aim to pro- recruited and matched to support than the goal – they’re the method. vide effective, appropriate, and fair ser- birth families, demonstrating a prac- vices to all of the people they serve. That tical and prudent way to provide References Bruhn, C. M. (2003). Children with disabilities: Abuse, neglect, and goal is more likely to be achieved when family life for a child. the child welfare system. In J. L. Mullings, J.W. Marquart, & D. H. Hartley, (Eds.) The victimization of children: Emerging issues, pp. 173 child welfare professionals, disability • Life-sharing recruitment. Personal 203. Binghamton, NY: Haworth Maltreatment and Trauma Press. professionals, and the family work to- network “mapping” procedures are Carlson, E.A., Sampson, M.C., & Sroufe, L.A. (2003). Implications of attachment theory and research for developmental-behavioral pedi gether. The information disability profes- demonstrating the willingness of atrics. Developmental and Behavioral Pediatrics, 24(5), 364-379. sionals can provide related to appropri- community members to make a rela- Cassidy, J. & Shaver, R.R. (Eds.) (1999). Handbook of attachment: Theory, research, and clinical applications. New York, NY: Guilford Press. ate and accessible supports and services tional commitment to someone with Greenspan, S. I. (1997). The growth of the mind and the endangered not only helps families currently in- a disability. origins of intelligence. Reading, MA: Addison-Wesley Publishing. volved in child welfare, but could lead to Marge, D. K. (Ed.) (2003). A call to action: Ending crimes of violence against children and adults with disabilities. A report to the nation. more families of children with disabili- The common thread in these promis- Syracuse, NY: SUNY Upstate Medical University. Retrieved 1/2/06 from ties avoiding abusive and/or neglectful ing practices is that they direct resources http://www.upstate.edu/pmr/marge.pdf. Rosenberg, S.A. & Robinson, C.C. (2004). Out-of-home placement for situations in the future. While the nature to surround an anchoring family – one young children with developmental and medical conditions. Child and of the services provided by the two fields with the requisite time, means, and per- Youth Services Review, 26, 711-723. Zeahah, C.H. (2000). Disturbances of attachment in young children can be quite dissimilar, particularly as sonal qualities – with the support and adopted from institutions. Developmental and Behavioral Pediatrics, 21(3), 230-236. child welfare is largely an involuntary expertise they need. These practices service while disability services are vol- recognize the “special” in specialized untary, improved collaboration between treatment is “simply” a configuration of Nancy Rosenau is Executive Director with these two fields is essential. well-supported people with training and EveryChild Inc., Austin, Texas. She may be access to expertise. These promising reached at 512/342-8846 or by e-mail at Reference Wahlgren, C., Metsger, L., & Brittain, C. (2004). Assessment. In C. Brittain practices demonstrate how to redirect [email protected]. & D. Esquibel Hunt (Eds.), Helping in child protective services: A compe people and funds to the secure base of a tency-based casework handbook. New York: Oxford University Press. nurturing family. Traci LaLiberte is Program Coordinator with the Research and Training Center on Conclusion Community Living, Institute on Commun- ity Integration, University of Minnesota, The way we’ve organized services Minneapolis. She may be reached at 612/ systems has segregated disability knowl- 625-9700 or [email protected]. Elizabeth edge and maltreatment knowledge in Lightfoot is Assistant Professor with the different systems. Child protection School of Social Work at the University. She workers, judges, attorneys, and police may be reached at 612/624-4710 or investigators have little training in dis- [email protected]. Continuation 39

[Hill, continued from page 19] [Musheno, continued from page 13] Courtney, M., Dworsky, A., Ruth, A., Keller, T. , Havlicek, J., & Bost, J. (2005). Midwest evaluation of the adult functioning of former foster including education/training vouch- youth: Outcomes at age 19. Chicago, IL: Chapin Hall Center for Children. types of Part C services required may ers, independent living programs, Foster, E. & Gifford, E. (2004, October). Challenges in the transition to change. Specifically, it is likely that chil- adulthood for youth in foster care, juvenile justices, and special educa SSI, Medicaid, and other health ser- tion. Network on Transitions to Adulthood Policy Brief, 15. dren involved with child protection will vices (Geenen & Powers, in press). At Frey, L., Greenblatt, S. & Brown, J. (2005). A call to action: An integrated have social-emotional and behavioral is- approach to youth permanency and preparation for adulthood. New a minimum, transition plans must Haven, CT: Casey Family Services, Annie E. Casey Foundation. sues more frequently than other children include employment, education, Garmezy, N. (1993). Children in poverty: Resilience despite risk. Psychia served by Part C. Therefore, Part C may housing, life skills, personal and try, 56(1), 127-136. need to enhance its ability to meet early Geenen, S. & Powers, L. (in press). Are we ignoring youth with disabili community engagement, personal ties in foster care? An examination of their school performance. Social childhood mental health needs. and cultural identity, physical and Work. It is important for states to receive Geenen, S. & Powers, L. (2006) Transition planning for foster youth with mental health, and legal information disabilities: Are we falling short? Manuscript in preparation. adequate Part C funds to meet the needs (Sheehy, Ansell, Correia & Copeland, Government Accountability Office (GAO) (1999). Foster care: effective of young children and their families, and ness of independent living services unknown. (GAO/HHES-00-13). Wash 2000). ington, DC: Author. in particular to ensure that the CAPTA Government Accountability Office (GAO) (2004). Foster youth: HHS ac requirements regarding referrals to Part • Appointment and Training of tions could improve coordination of services and monitoring of states’ Educational Surrogates. Although independent living programs. (GAO-05-25.) Washington, DC: Author. C continue to be implemented effectively. Kessler, M. (2004). The transition years: serving current and former foster The Association of University Centers on foster parents often act as an educa- youth ages eighteen to twenty-one. Tulsa, OK: The National Resource tional surrogate, many do not have Center for Youth Services, University of Oklahoma.. Disabilities (AUCD) is currently working Lehman, C., Hewitt, C., Bullis, M., Rinkin, J., & Castellanos, L. (2002). with its partners to increase IDEA Part C training in special education and dis- Transition from school to adult life: Empowering youth through com ability issues. Disruptions in foster munity ownership and accountability. Journal of Child and Family Stud funding as well as for all of the programs ies, 11(1), p127-141. under CAPTA. Last year appropriators placement create disruptions in the Massinga, R. & Pecora, P. (2004). Providing better opportunities for educational process and leave youth older children in the child welfare system. Future of Children, 14(1), provided level funding for these pro- 151-173. Retrieved July 17, 2005 from www.futureofchildren.org. grams. However, a last minute one per- without a consistent, informed, and National Center on Secondary Education and Transition, & PACER Cen involved advocate (Geenen & Powers, ter. (May 2002). IDEA 1997 transition issues: The IEP for transition-aged cent across-the-board cut was enacted students. Parent Brief. which actually lowered the amount these 2006). A more consistent approach National Center on Secondary Education and Transition (NCSET) (2004). Current challenges facing the future of secondary education and transi programs will receive. The President’s that includes stable, committed tion services for youth with disabilities in the United States. Discussion adults to ensure youth receive the co- Paper. Retrieved October 25, 2005, from http://www.ncset. org/publi Fiscal Year 2007 budget proposal also cations/discussionpaper/. provides level funding. AUCD urges all ordinated, comprehensive services Osgood, D., Foster, E., Flanagan, C., & Ruth, G. (2004). Why focus on tran they are entitled to, is imperative. sition to adulthood for vulnerable populations? (Research Network child welfare advocates to educate mem- Working Paper No. 2). Network on Transitions to Adulthood. Retrieved ber of Congress about the need for more • Connections with Caring Adults. July 19, 2005 from: http://www.transad.pop.upenn.edu/news/ vulnerable.pdf. funding for these programs. The consistent presence of a single Pokempner, J. & Rosado, L. (2003). Dependent youth aging out of foster caring adult has been shown to have care: A guide for judges. Philadelphia, PA: Juvenile Law Center. References a significant positive impact on a Sheehy, A.M., Ansell, D., Correia III, P., & Copeland, R. (2000). Promising National Center on Child Abuse and Neglect (1993). A report on the practices: Supporting the transition of youth served by the foster care maltreatment of children with disabilities (DHHS Contract No. 105-89 young person’s growth and develop- system. Baltimore, MD.: Annie E. Casey Foundation,. Retrieved October 1630). Washington, DC: National Clearinghouse on Child Abuse and 25, 2005 from http://www.nrcys.ou.edu/nrcyd/publications/pdfs/ Neglect Information. ment (Garmezy, 1993). Optimal in- promising_practices-1.pdf . Rosenberg, S. & Robinson, C. (2003). Is Part C ready for substantiated dependent living planning should be Wehmeyer, M.L., Palmer, S., Agran, M., Mithaug, D., & Martin, J. (2000). child abuse and neglect? Washington, DC: Zero to Three Press. Promoting causal agency: The Self-Determined Learning Model of In family-centered and include existing struction. Exceptional Children, 66, 439-453. Sullivan, P.M., & Knutson, J.F. (1998). The association between child maltreatment and disabilities in a hospital-based epidemiological relationships both inside and outside Westat (1991). A national evaluation of Title IV-E foster care indepen study. Child Abuse and Neglect, 22, 271-288. dent living programs for youth. Phase 2: Final report. Rockville, MD: the family of origin. In many cases, Author. U.S. Department of Education (2000).T wenty-fourth annual report to Congress on the implementation of the Individuals with Disabilities youth are the best resource for identi- Education Act (p. 2, Part II-1). Washington, DC: Author. fying relationships that can serve as Katharine Hill is Education Specialist with primary, ongoing connections the North Central Regional Resource Center, Kim Musheno is Director of Legislative (Sheehy et al., 2000). Institute on Community Integration, Affairs with the Association of University University of Minnesota, Minneapolis. She Centers on Disabilities, Silver Spring, References Badeau , S. (2000). Frequently asked questions II: About the Foster Care may be reached at 612/624-1157 or hillx086 Maryland. She may be reached at 301/588- Independence Act of 1999 and the John H. Chafee Foster Care Indepen @umn.edu. Pam Stenhjem is Education 8252, ext. 210 or [email protected]. For dence Program. Washington DC: National Foster Care Awareness Project. Specialist with the Institute on Community more information about AUCD activities in Cameto, R. (April 2005).The transition planning process. NLTS Data Integration. She may be reached at 612/ relation to child abuse prevention, visit Brief 4(1). Retrieved October 25, 2005 from http://www.ncset.org/ publications/viewdesc.asp?id=2130. 625-3863 or [email protected]. www.aucd.org. Child Welfare League of America (CWLA) (2005). Standards of excel lence for transition, independent living, and self-sufficiency services. Washington, DC: Author. Courtney, M. (2005).Youth aging out of foster care. Network on Transi tions to Adulthood Policy Brief, 19. Courtney, M.E., Terao, S. & Bost, N. ( 2004). Evaluation of the adult func tioning of former foster youth: Conditions of Illinois youth preparing to leave state care. Chicago: Chapin Hall Center for Children. In This Issue... Feature Issue on Children with Disabilities in the Child Welfare System • Supporting Family Life for Children with Volume 19 · Number 1 · Fall/Winter 2005/06 Managing Editor: Vicki Gaylord Disabilities: What We Know and Don’t Know Issue Editors: Traci LaLiberte • Seven Keys to Supporting Children with Research and Training Center on Community Living, Institute on Community Integration, Disabilities in the Child Welfare System University of Minnesota, Minneapolis Elizabeth Lightfoot • Children with Disabilities in the Child Welfare School of Social Work, University of Minnesota, System: Prevalence Data Minneapolis Amy Hewitt • Child Welfare Services: How Children with Research and Training Center on Community Living, Institute on Community Integration, Disabilities Move Through the System University of Minnesota, Minneapolis Impact is published quarterly by the Institute • Child Welfare Legislation Affecting Children on Community Integration (UCEDD), and the Research and Training Center on Community Living, with Disabilities College of Education and Human Development, University of Minnesota.This issue was supported, • Youth with Disabilities Aging Out of Foster in part, by Grant #90DD0579 from the Administra tion on Developmental Disabilities, US Department Care: Issues and Support Strategies of Health and Human Services; and Grant #H133B031116 from the National Institute on • A Statement in Support of Families and Their Disability and Rehabilitation Research, US Children Department of Education. The opinions expressed are those of the authors and do not necessarily reﬂect the views of the Insti • Personal stories, program profiles, resources tute, Center, University, or their funding sources. and more... For additional copies or information contact: Institute on Community Integration, University of Minnesota, 109 Pattee Hall, 150 Pillsbury Dr. SE, Minneapolis, MN 55455 • 612/624-4512 • You May be Wondering Why...you’ve received Impact. We mail each issue to our regular [email protected] • http://ici.umn.edu. subscribers plus others whom we think might be interested. If you’d like to receive every issue Impact is available in alternative formats upon of Impact at no charge, call 612/624-4512 or e-mail us at [email protected]; request. The University of Minnesota is an equal opportunity employer and educator. give us your name, address, e-mail and phone number and we’ll add you to the mailing list. Impact is also published on the Web at http://ici.umn.edu/products/newsletters.html.

Institute on Community Integration Non-Proﬁt Org 109 Pattee Hall U.S. Postage 150 Pillsbury Drive se PAID University of Minnesota Minneapolis, MN Minneapolis, MN 55455 Permit No. 155

Address Service Requested