The Georgetown University Child Development Center
Center for Child Health and Mental Health Policy
A University Affiliated Program
3307 M Street, NW, Suite 401
Washington, DC 20007-3935
The Georgetown University Child Development Center (GUCDC), Center for Child Health and Mental Health Policy, is a division of the Department of Pediatrics of Georgetown University. The GUCDC was established over three decades ago to improve the quality of life for children with, or at-risk for, special needs as well as adults with developmental disabilities and their families. Supported by a broad array of federal, state, local, and private funding, the GUCDC provides an interdisciplinary approach to service, training, technical assistance, research, community outreach, and policy analysis. The GUCDC is a member of the network of University Affiliated Programs funded by the Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services.
This monograph was funded by a supplement to the Administration on Developmental Disabilities core grant to the Georgetown University Child Development Center, a University Affiliated Program. This document will be made available in accessible format upon request from the Administration on Developmental Disabilities. Editing and final preparation of this monograph was completed by Marie Keefe, Counterparts, Inc.
Notice of Nondiscrimination:
In accordance with the requirements of Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973, and implementing regulations promulgated under each of these federal statutes, Georgetown University does not discriminate in its programs, activities, or employment practices on the basis of race, color, national origin, sex, age, or disability. The statutes and regulations are supervised by Rosemary Kilkenny, Special Assistant to the President for Affirmative Action Programs. Her office is located in Room G-10, Darnall Hall, and her telephone number is (202) 687-4798.
In 1989, Phyllis R. Magrab, PhD, Director of the Georgetown University Child Development Center, brought the issue of homelessness to the Georgetown University community by conducting a university-wide forum. Dr. Magrab's foresight led to the establishment of an initiative that would begin to address the developmental needs of young children who are homeless and their families in the District of Columbia. Under her leadership, homelessness has been a targeted area for service, community outreach, training, technical assistance, and policy development within the Georgetown University Child Development Center.
The Administration on Developmental Disabilities is to be commended for the recognition it has given to the impact of homelessness on the development of young children. The Administration on Developmental Disabilities, Administration for Children and Families, US. Department of Health and Human Services, provided resources to the Georgetown University Child Development Center, a University Affiliated Program, to bring this issue to a national audience, particularly within the developmental disabilities network, through the publication of this monograph.
The contributions of the Hasbro Children's Foundation, the Better Homes Fund, and the Fannie Mae Foundation are gratefully acknowledged. These foundations have provided the resources to create and implement two service delivery models for children who are homeless and their families-the Knock On Every Door and Kidstart projects.
The Georgetown University Child Development Center was able to implement the homeless initiative in the spirit of community collaboration because of the tireless efforts of Virginia Williams, MA, Senior Advisor. She participated on several task forces on emergency shelter and homelessness within the District of Columbia and helped to influence policy that was driven by the needs of young children at risk for developmental delays or disabilities and their families.
The Kidstart and Knock On Every Door projects shared interdisciplinary team members. Every aspect of project development, implementation, and evaluation was made possible by the genuine caring and expertise of Georgetown University Child Development Center faculty, staff, and trainees. The contributions of the following individuals are sincerely appreciated: Jennie Austin, MSN, RN, CPNT; Rosalind Coleman, Parent Coordinator for Family Advocacy; Diane Jacobstein, PhD; Chahira Kozma, MD; Delyse Slayton, Administrative Assistant; Janet Thomas, MEd, OTR; and Sharon Willig, MA, CCC-SLP.
Finally, a special acknowledgment is due the families served by the Knock On Every Door and Kidstart projects. Their willingness to share their experiences reaffirms the inherent strengths and resilience in all families.
Tawara D. Taylor, MA Associate Director for Community Planning
Marisa C. Brown, MSN, RN Knock on Every Door Project Coordinator
The Changing Face of Homelessness in America
The past decade has witnessed a marked increase in the number of individuals who are homeless. Although estimates vary widely, approximately 2.5 million Americans are homeless (Bassuk & Rosenberg, 1992). There is, however, no one definition of homelessness (Dornbusch, 1994). The term residential instability has been used to describe homelessness as a continuum extending from those individuals who may be subjected to multiple unplanned moves in a single year to others who live on the street or in abandoned buildings or cars (Buckner, 1991). Homelessness has traditionally been associated with adult males living in "skid row" environments. In recent years, however, there have been significant changes in the demographic makeup of those who actually comprise the homeless population in America.
During the 1970s, the homeless population increased as a result of a movement to deinstitutionalize adults with chronic mental illness. Today, families comprise the fastest growing segment of the homeless population. The number of families who are homeless has increased from 27% of the homeless population in 1985 to 36.5% of the population in 1995 (U.S. Conference of Mayors, 1995). It is anticipated that, as the safety nets of public support are diminished, this disturbing trend of homelessness among children and families will continue and, in fact, may increase.
While all families who are homeless are by definition poor, poverty in and of itself does not result in homelessness. Families who are homeless experience crisis poverty. Crisis poverty refers to the combination of poverty and one or more of the following factors: disability, substance abuse, or chronic stress from the effects of substance abuse in the environment, including violence, and the incarceration or death of family members. Furthermore, these destabilizing factors occur in conjunction with inadequate community supports. (Martin, 1994).
Risk Factors for Developmental Delays and Disabilities Among Children Who Are Homeless
Children who are homeless experience environmental, socioeconomic, and biological risk factors which place them at higher risk than other children for developmental delays and disabilities. Recent studies have documented the effects of homelessness on child development, including increased incidence of learning disabilities, cognitive impairment, language and fine motor delays, and psychological problems such as anxiety, depression, and behavioral disorders. These effects on child development are not surprising given that families who are homeless experience crisis poverty. All of the factors associated with crisis poverty are integrally linked to risk factors for developmental delays and disabilities among young children.
Substance abuse is one of the most prevalent problems among adults who are homeless (Nunez, 1994). Children whose parents are substance abusers are in double jeopardy due both to biological and environmental risk factors. While some children who are exposed prenatally to substances experience no adverse effects on their development, others are significantly affected (Carta et al., 1994; Coles & Platzman, 1993) Children born to substance abusing women may present with a range of problems that negatively affect their development. These problems include low birth weight, prematurity, HIV infection, and sudden infant death. These biological risk factors can result in higher incidence of develop mental delays and disabilities. Babies with low birth weight are significantly more likely to have neurodevelopmental disabilities than normal birth weight babies (Willis & Holden, 1990). Among these are cerebral palsy, mental retardation, autism, and hearing impairments. Low birth weight is also associated in later life with learning disabilities, developmental delays, and attention deficit disorder/hyperactivity (Hack et al., 1994).
Families affected by substance abuse typically live in extremely chaotic environments which negatively impact child development. Research notes the difficulty in isolating the effects of prenatal substance exposure on the development of infants and children from the effects of the environment in which they reside (Rodning, Beckwith, & Howard, 1989). These children often live in dangerous, unstable, and transient living environments where their basic needs may not be met or are inadequately met due to their parents' drug dependency (Taylor, 1991). Under these circumstances, parents are often unable to provide consistent nurturing and guidance to promote optimum child development. Children residing in such environments may be undernourished, receive sporadic health care, and are at increased risk for child abuse and neglect.
Unstable and overcrowded living conditions, which are precursors to homelessness, also increase women's and children's exposure to domestic and community violence. Researchers have cited the correlation between domestic violence and the maltreatment of infants and children. Mothers who were abused by their male partners had higher rates of child abuse than non-battered women (Strauss, 1993). Studies note that domestic violence increases in families living in shelters (Waxman & Reyes, 1987). Numerous studies show that homeless women are twice as likely to be abused and beaten as non-homeless poor women (Nunez, 1994). Since exposure to violence affects children differently at different ages, repeated exposure to violence may lead to more significant or severe effects as children grow older (Osofsky & Fenichel, 1994). Exposure to violence affects children's development in multiple ways including disrupted eating and sleeping patterns, fearfulness, anxiety, difficulties attending and relating (Drell, Siegel, & Gaensbauer, 1993), and aggression and withdrawn behaviors (Cummings, Ballard, El-Sheikh, & Lake, 1991).
The adverse effects of poverty on child development have long been recognized. The Children's Defense Fund special report entitled The Costs of Child Poverty (1994) notes that poor children are over two times more likely to suffer from health problems including stunted growth, severe physical or mental disabilities, fatal accidental injuries, fair or poor health, iron deficiency, and severe asthma. When compared to non-poor peers, low income children are more likely to be born at low birth weight, have learning disabilities, and exhibit extreme behavior problems.
The literature reflects longitudinal data that support the outcomes described above. However, the increasing numbers of young children who are homeless is a recent phenomenon, and, while the cumulative effects of these risk factors can be surmised to have a negative impact, the actual long term consequences of homelessness on young children are yet to be determined.
Overview of Monograph
This monograph describes a University Affiliated Program's initiative which targets the developmental needs of children birth to five years of age who are homeless and the services and supports provided to their families. It provides a description of the children and families served by one of the initiative's projects and an approach for the identification and referral of children who present with developmental delays and disabilities. Interventions that have been successful with families as well as barriers to accessing services are delineated. Finally, recommendations for advocacy and policy development within the developmental disabilities network are given. The goal of this monograph is to bring the issue of homelessness and its impact on the development of young children to the attention of a national audience and to influence state and national policy through the developmental disabilities network.
In 1990, the Georgetown University Child Development Center (GUCDC), the University Affiliated Program (UAP) for the District of Columbia, conducted a campus-wide forum to explore the role the university could play to address issues of homelessness in the city. A variety of university volunteer efforts ensued. Through its collaboration with a local pilot project which provided mental health services to families who were homeless, the GUCDC identified the need to assess the developmental status of young children residing in emergency shelter. The GUCDC then implemented a faculty volunteer program that provided developmental screening for children birth to five years of age living in shelters with their families.
This initial effort was the basis for a homelessness initiative that is currently funded by grants from the Hasbro Children's Foundation, the Better Homes Fund, the Fannie Mae Foundation, and the Administration on Developmental Disabilities, U.S. Department of Health and Human Services. These combined resources have resulted in the development and implementation of a family-centered, culturally competent, community-based model of service delivery which responds to the needs of families with young children who are homeless in the District of Columbia. The GUCDC has used this model to successfully influence local policy development and planning for the delivery of services and supports to the District's homeless population. While this model has been implemented solely at the local level, it has demonstrated efficacy which merits replication across the nation in other communities and jurisdictions with a high incidence of homelessness.
The GUCDC's homelessness initiative has revolved around two projects. The first, Kidstart, is a national project funded by the Better Homes Fund and the Fannie Mae Foundation. This project was developed in recognition of the fact that preschool-age children who are homeless experience an increased incidence of developmental delays and emotional difficulties. Moreover, nationally, services and supports are overwhelmingly geared toward the schoolage child. The primary purpose of Kidstart is to provide advocacy and developmental services for preschool-age children and their families who are homeless. Each of the 17 Kidstart projects nationwide is administered in response to local needs.
The GUCDC Kidstart project is located within a child care center that exclusively serves families who are homeless and their children ages 2'/2 to 5 years. This child care center is also a Head Start homeless demonstration site. The GUCDC Kidstart project staff consist of a clinical psychologist and a family services coordinator. Project staff provide developmental screening and service coordination to children and their families. Consultation is offered to the teaching and administrative personnel at the demonstration site to facilitate the inclusion of children with developmental delays and disabilities into all aspects of the child care program. Kidstart project staff also provide supportive services to assist children and families with transition from the child care program to local public and private kindergarten programs.
The second project, Knock On Every Door, receives primary funding from the Hasbro Children's Foundation. The project is funded to provide developmental screening, assessment, service coordination, advocacy, and other supports to families who are homeless and have children birth to five years of age. Knock On Every Door is built upon a universitycommunity partnership of outreach to families of young children living in emergency shelter. The Administration on Developmental Disabilities provided funding to Knock On Every
Door in order to expand service coordination and to disseminate information on the relationship between homelessness and developmental delays and disabilities among young children. The Knock On Every Door project is staffed by an interdisciplinary team. The two projects share team members and, through this collective experience, interdisciplinary team members have gained unique insight and expertise in the provision of services, supports, and advocacy to a local population of young children and their families who are homeless.
The District of Columbia: A Demographic Portrait
The Georgetown University Child Development Center is located in the District of Columbia which is home to approximately 606,900 residents. A brief composite of demographic data related to age, family income, and cultural diversity of the residents of the District of Columbia is as follows. The District's total population consists of: 65.8% African American, 29.6% White, 5.4% Latino/Hispanic, and 1.8% Asian (1990 Census). Nationally, the homeless population is estimated to be 56% African-American, 29% White, 12% Hispanic/Latino, 2% Native American, and 1 % Asian (U.S. Conference of Mayors, 1995). There are 117,092 children in the District under 18 years of age. Among these, 44,174 are younger than 6 years of age. Eighty percent of the District's child population is African American, 15% is White, 6.2 % is Latino/Hispanic, and 1% is Asian.
The majority (51%) of all households with children in the District are headed by females. Nearly 60% of African American households with children have female heads and 15% of White households with children are headed by females. The majority of all Latino/Hispanic households with children (59%) are married-couple households. Thirteen percent of all Latino/Hispanic households, however, are single parent households with male heads, and 29% are ones with female heads (Children's Defense Fund, 1991).
The District's poverty rate is 16.9%, while the poverty rate for the other jurisdictions within the Washington metropolitan area is 6.4% (D.C. Government Indices, 1992). One in every three District children lives in poverty- a rate 40% higher than the national average.
There are an estimated 7,500 individuals in the District of Columbia who are homeless. Among these, at any given time there are approximately 135 families residing in emergency/temporary housing and an additional 300 families are on a waiting list for this housing. These statistics only reflect those families who are known to the system and who have applied for services. It should be noted that, despite the District's culturally diverse population, the overwhelming majority of families presenting for public emergency shelter services have been African American. While there is no recent, formal data on the incidence of homelessness among other cultural and ethnic groups in the District, anecdotal data reveal that: 1) Hispanic/Latino families typically seek shelter resources from non-profit agencies which specifically target the Hispanic/Latino community, and 2) Asian families seem to provide natural supports or access community supports which prevent homelessness from occurring.
Characteristics of Families Served by This Project
Since the inception of the Knock On Every Door project in 1993, over 300 children from more than 200 families have received services. The families described in this monograph are African Americans who reside in a large urban setting. The majority of households are headed by a single female. Family size ranges from two to ten members-the majority being three-member households.
Families receiving services from the Knock On Every Door project experience residential instability for many months prior to seeking emergency shelter services and they report frequent moves from the residence of one friend or relative to another. Families tend to describe these settings as overcrowded and chaotic with illicit drug activity and domestic violence. Children are often exposed to multiple caretakers. It is not unusual for families to be separated in an effort to house all of their members; for example, older children may live with grandparents or other extended family members. Fathers seem to be involved to some extent with their families although they do not typically reside in the household.
The GUCDC is committed to the development and implementation of programs which utilize a collaborative community approach and which are interdisciplinary, accessible, family centered, and culturally competent. In keeping with this commitment, the Knock On Every Door Project was designed to include the following components:
The Knock On Every Door Project involves collaboration with key stakeholders and public and private sector agencies within the District of Columbia which are responsible for services to families who are homeless. Primary collaboration is with the Community Partnership for the Prevention of Homelessness. The Community Partnership was created in 1993 by an agreement between the Mayor of the District of Columbia and the Secretary of the U.S. Department of Housing and Urban Development (HUD) to address the multiplicity of needs for persons who are homeless in the city. As of May 1995, all homeless programs and services formerly administered by the D.C. Office of Emergency Shelter and Support Services became the responsibility of the Community Partnership.
Other collaborators include:
This community-based approach ensures that multiple resources are used in addressing the special needs of young children and their families and that linkages among community services are established.
Interdisciplinary Service Delivery
An interdisciplinary approach is integral to the delivery of comprehensive services for this vulnerable population. The interdisciplinary team for the Knock On Every Door Project provides developmental screening, diagnostic assessment, service coordination, and advocacy to families of young children living in emergency shelter. The team consists of a nurse specialist in developmental disabilities who serves as the project coordinator, a clinical psychologist, a speech-language pathologist, an occupational therapist, a developmental pediatrician/geneticist, a parent coordinator for family advocacy, and a pediatric nurse practitioner (the latter two function as service coordinators).
All services provided by the Knock On Every Door project are delivered in communitybased settings. Developmental screening and diagnostic assessments are offered at the Family Resource Center, the intake site where District families come to request emergency housing services. Developmental screening is also provided on site at emergency housing units either in the family's apartment or in multi-purpose rooms. Funds are provided to assist families with transportation expenses for appointments at the Family Resource Center and at other community agencies related to receiving assessment services.
General information brochures about the Knock On Every Door Project are written in simple formats. Developmental screening reports and diagnostic assessment reports avoid the use of jargon and are orally reviewed with each family to ensure accessibility of information for parents who are illiterate or low-literate. Any other accommodations needed for family members with sensory disabilities are made on an as-needed basis.
Family-Centered and Culturally Competent Practices
Family-centered services refers to a philosophy built upon the beliefs that: 1) families are composed of competent caregivers, 2) the family is an important social institution that needs to be preserved, 3) families can and should make important decisions about their interactions with agencies and service providers, and 4) families have rights and beliefs that need to be recognized and respected (Roberts, 1988). Service delivery systems that are family centered recognize inherent strengths within all families and value the priorities that each family establishes.
Services and supports must also embrace the diversity among people who comprise American society today (Williams & Taylor, 1994). The Developmental Disabilities Assistance and Bill of Rights Act (1994) defines the term "culturally competent as services, supports, or other assistance that are conducted or provided in a manner that is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals who are receiving services, and in a manner that has the greatest likelihood of ensuring their maximum participation in the program (Section 6001 )."
The Knock On Every Door project is committed to incorporating the principles and practices of family-centered services and cultural competence, as espoused in the definitions cited above, into all aspects of service delivery. Families who are homeless come from backgrounds that include a high incidence of foster care, substance abuse, domestic violence, inadequate health care, and poor education (Nunez, 1994.) These factors heavily influence what constitutes family-centered and culturally competent practices for homeless families. The Knock On Every Door interdisciplinary team considered the following to be critical elements in the design and implementation of the project:
Families experience significant stress when faced with the possibility that their child may have a developmental delay or disability. Families who are homeless are already facing a crisis about their housing situation. The pressure of this additional stress prompts the legitimate question of whether developmental screening and diagnostic assessment is an appropriate activity to be coupled with the provision of emergency shelter. Over 90% of families who are offered services agree to participate. The families who have participated in the Knock On Every Door Project demonstrate a genuine interest in the development of their children regardless of the crises they are experiencing. A significant proportion of them are referred through word of mouth by other families who have used the service.
Approximately 10% of families refused developmental screening or declined further diagnostic assessment indicated by such screening. It is important to note that any family, not just those who are homeless, may not be ready to pursue diagnostic assessment of their children for a variety of reasons. These wishes must be respected and families should be given information on how to access services at a later time.
The Knock On Every Door Project employs a philosophy that it should solicit only information needed to complete developmental screening. Families typically have to repeat their story of homelessness to many agency representatives before they receive housing. The interdisciplinary team's experience indicates that family participation is enhanced by collecting information strictly on a "need to know" basis. Families are asked if they have any concerns about their child's development, including nutritional or health concerns. Families have responded positively to this approach which respects their privacy. Information sought that is pertinent to developmental screening includes: the child's name, date of birth, history of prematurity, and the parents names. Due to the high mobility of homeless families and the lack of phone availability, follow-up activities are often compromised. For this reason, it is helpful if the parent is willing to provide the name and phone number of a family member or friend for future contact.
Families who are homeless receive services from a variety of agencies including Aid to Families With Dependent Children (AFDC), the Women Infants and Children (WIC) nutritional program, Medicaid, Title IV-A AFDC/JOBS Child Care programs, Child Protective Services, and social services provided by emergency shelter agencies. Fragmentation of services often results from the multiplicity of agencies involved in meeting the complex needs of families with young children who are homeless. The traditional focus of agencies providing emergency shelter has been locating stable housing, and, in some instances, providing job placement or training. Services and supports focusing on the developmental needs of young children have been absent. The Knock On Every Door Project has recognized the importance of providing service coordination which bridges the gap between the providers of emergency housing services and the providers of early intervention and special education services.
The service coordination component of Knock On Every Door is designed to provide an array of follow-up services that include: conducting home visits to families residing in emergency shelters and permanent housing; attending meetings with families to develop Individual Family Service Plans and Individual Education Plans for their children; providing consultation to mental health, early intervention, child care, and special education service providers; and fostering self-advocacy. Family members are encouraged to contact the Knock On Every Door project when additional developmental concerns for their child arise or when other services are indicated even if the families have exited emergency shelter.
For most families, becoming aware that their child may have a developmental delay or disability that could permanently affect his or her life is a crisis situation. This factor, added to other crisis factors that have precipitated homelessness, requires service providers to develop a genuine sensitivity to complex family needs. The Knock On Every Door interdisciplinary team has extended the concept of service coordination beyond the provision of direct services to families and offers technical assistance to agencies serving this population to build their capacity to better serve families of young children with developmental delays or disabilities who are homeless.
Infusion of Culturally Competent Practices
The Knock on Every Door team places a high value on acquiring the knowledge, skills, and attributes to work effectively in cross cultural situations. Several areas that receive particular attention from the team include: 1) the administration and interpretation of standardized tests; 2) the selection of children's literature and play materials; 3) understanding and valuing cultural differences in child-rearing practices; and 4) the influence of culture on the perception of the disability.
All standardized assessment instruments raise concerns about cultural bias. Team members carefully monitor children's responses to particular test items that may be negatively influenced by the experience of homelessness. For example, parents frequently lack a safe place where their infants can crawl and explore their environment. This means that valuable learning experiences related to exploration and experimentation are missed. Shelters are often crowded, which necessitates interactions with many different people. As a result, parents have a tendency to keep their toddlers quiet, which increases the child's complacency and may have a detrimental impact on language and cognitive development. Play materials that enhance fine motor and cognitive development for preschool-age children are at a minimum, which may impact school readiness. Test results must be interpreted cautiously in light of these factors.
The Knock On Every Door team members have little control over most of the environments in which they deliver services. However, the team ensures that play materials, children's books, and other resources reflect the cultural heritage of the children and families they are serving.
Families from different cultures have different expectations of their children for acquiring toilet training, dressing, feeding, and other self-help skills. Traditional approaches to disciplining children also are influenced by culture. The team has engaged in meaningful dialogue to recognize its members' cultural and professional biases around these issues. An area that has presented a challenge for the team has been responding to frequent requests for information from parents on effective discipline. It has been necessary for the team to demonstrate sensitivity in presenting information on alternative child discipline approaches while still honoring and respecting those traditional practices bound by family and cultural beliefs.
The perception of disability and its causes varies significantly according to cultural as well as religious beliefs. This includes how disability is viewed, understood, and accepted among diverse cultures. These perceptions impact service delivery systems-both for those seeking services and those providing services. Nationally there exists a history of discrimination in the identification and placement of students from ethnic groups of color within special education programs (Artiles, 1994). Some students have been and continue to be overrepresented in special education settings, particularly in the categories of mental retardation and serious emotional and behavioral disorders. This may lead to parents' well founded skepticism in seeking evaluation, which they feel may automatically lead to unfair labels and life-long placement in restrictive educational settings.
Developmental Screening, Diagnostic Assessment, and Referral Services
The Knock On Every Door interdisciplinary team uses the DENVER II (1992) and the First STEP (1993) developmental screening tools. The team has found the First STEP screening instrument to be more comprehensive and sensitive in detecting mild to moderate delays which may not be identified by the DENVER II. These tools measure the following areas of a child's development: 1) social-emotional, 2) speech and language, 3) cognitive, 4) fine motor, 5) gross motor, and 6) self-help skills. Team members decide which tool to use based on their professional judgment.
Parents are present during developmental screening and play an active role in the screening process. They provide information related to their child's self-help, social, and emotional skills. Once the developmental screening is completed, a team member discusses results with parents and provides them with a written report. This is an opportunity to review a child's progress, reinforce good parenting skills, and offer suggestions for parents to engage their children in enrichment activities. Each child who receives developmental screening is given a book or play kit, items which the child may not have had prior exposure to-or may have lost due to-the homeless experience.
The Knock On Every Door project relies heavily on the clinical judgment of the interdisciplinary developmental screening team members to refer for diagnostic assessment children who may have passed screening but who exhibit qualitative concerns or discrepancies in performance. For example, for those children who passed the DENVER II yet were referred for speech and language assessment based on clinical judgement, all were found to have a 25% delay. This finding validates the use of clinical judgment for referral in this population of children. Whenever developmental screening results indicate a need for further evaluation, a diagnostic assessment is scheduled with the appropriate combination of interdisciplinary team member(s).
Parents are actively involved in the discussion of all diagnostic assessment results, including delineating service needs and discussing options for accessing such services. The Knock On Every Door project is committed to serving the needs of the whole family. Families have been assisted in accessing child care and preschool programs, special education services, specialty medical consultations, mental health services, and drug rehabilitation services. While the primary emphasis is on services to children birth to five years of age who are at risk for or have developmental delays, school-aged siblings have also been given advocacy services to access special education programs on a limited basis. Every effort is made to inform and advise families of their child's right to early intervention and special education services and to show them how to advocate on their child's behalf and how to become collaborators in their child's developmental program. Families are referred to community agencies which provide advocacy and support services so that families can continue being helped to advocate on behalf of their children.
The Knock on Every Door project was designed as a model service delivery effort, not as a research study. However, data collected since 1993 from the over 300 children who have been served by this project do suggest some trends. A convenience sample of the most recent 150 children who received developmental screening, their subsequent referral for evaluation, and the results of the evaluation were compiled.
Each interdisciplinary team member has provided an analysis of the evaluation data from the convenience sample. Salient findings are listed by discipline for the purpose of sharing insights and information useful to colleagues delivering services to young children who are homeless and their families.
CHILDREN WHO RECEIVED DEVELOPMENTAL SCREENING
|Children who received developmental screening:
Children whose developmental screening was age appropriate:
|Children referred for speech and language assessment:
Children with completed speech and language assessments:
|Children referred for cognitive evaluation:
Children with completed cognitive evaluations:
|Children referred for motor evaluation:
Children with completed motor evaluations:
|Children referred for developmental pediatric evaluation:
Children with completed developmental pediatric evaluation:
Although 68 children were referred for a speech and language evaluation based on the results of their developmental screening, only 36 children had completed evaluation when the convenience sample was gathered. There are several reasons for this discrepancy in the ratio of completed evaluations compared to the other disciplines. First, more children are referred for speech and language evaluations, and there is only one speech-language pathologist on the team. Second, this number reflects children lost to follow up because speech-language is usually the first evaluation to be completed.
All children receiving a speech and language evaluation are referred for a complete audiologic assessment through their primary care provider.
The speech and language evaluation also includes:
Some observations of the speech/language pathologist regarding this population of children who are homeless:
Cognitive measures used:
Some observations of the clinical psychologist concerning cognitive and adaptive evaluations in this population of children who are homeless:
All motor assessments were completed by an occupational therapist. Areas assessed include movement skills, hand development, and visual processing.
Some observations of the occupational therapist regarding this population of children who are homeless:
Children were referred to the developmental pediatrician by members of the interdisciplinary team based on the following criteria: global developmental delays, a history of prenatal exposure to alcohol or other drugs, notation of dysmorphic features, or a family history of developmental disabilities. Therefore, this sample is skewed in that it only represents those children who met the above referring criteria.
Some observations of the developmental pediatrician regarding this population of children who are homeless:
The presentation of the data in this chapter and the observations made by the individual clinicians has been provided to aid in the replication of this service model by other University Affiliated Programs and community agencies serving families of young children who are homeless.
Understanding the barriers faced by families as they attempt to access appropriate services for their children was a learning experience for the Knock On Every Door interdisciplinary team. Individual families face unique challenges in overcoming homelessness and all its ramifications. Major barriers commonly faced by families served by the Knock On Every Door project are as follows:
Scarcity of Supportive Services
Another barrier is the scarcity of supportive social services in the District of Columbia. During the past two fiscal years, the Mayor of the District of Columbia and the City Council have been forced to make tough choices to significantly reduce or discontinue program funding among many constituencies with equally compelling needs. During these times of fiscal austerity, families who are homeless, and the network of public and private agencies which support them, are engaged in fierce competition for scarce District appropriated funds. Families exert the most important influences in children's lives, but they cannot do it alone. Low income parents, in particular, need extra support, not just financially, but through links with caring communities. Conversely, while the public and private sectors cannot solve all problems, they must be strong and active partners in supporting families who are homeless (Children's Defense Fund, 1994). Support services in the District can be characterized as follows:
Lack of Efficient Communication Systems
One of the most frustrating barriers to both families and service providers is the lack of efficient communication systems. A significant number of families do not have access to any telephone service and communication by mail is hindered by incorrect addresses due to frequent moving.
Scarcity of Head Start and Child Care Services
The District of Columbia has committed significant fiscal resources to providing early childhood services for young children and their families. However, the demand for child care and early childhood services far exceeds the current supply, particularly for children of low income families. During fiscal year 1994, a total of 28 million dollars was expended for subsidized child care in the District of Columbia. Of this amount, $22,239,000 were District-appropriated funds with the remainder coming from federal sources. The District has 7,100 subsidized child care slots which include children in foster care, protective services, working families, and families who have children with disabilities . The availability of Head Start slots is limited. According to a 1993 survey conducted by the Office of Early Childhood, Commission on Social Services, D.C. Department of Human Services, Head Start grantees have the capacity to serve 2,605 children and their families. The D.C. Public Schools System is the only jurisdiction in the Washington metropolitan area to offer optional pre-kindergarten for 4-year-old children. Yet many families desiring child care, Head Start, and prekindergarten placement for their children are turned away. In spite of this strong commitment to early childhood and child care services by the District of Columbia, long waiting lists exist. Barriers encountered by families include:
The daily trauma, uncertainty, and painful deprivation among individuals who are homeless frequently produce profound feelings of sadness and hopelessness which can lead to severe clinical depression. Substance abuse problems also affect a growing number of homeless families; it now ranks as the most prevalent health problem in this population. Nunez (1994) documents the plight of families in New York City who are homeless and indicates that these problems often increase the risk for child abuse and neglect. The experiences of the Knock On Every Door project and of other agencies providing services to District families who are homeless is similar:
Lack of Interagency Coordination
Families who are homeless often require a variety of service options that fall outside the scope of any single agency. Services for people with developmental and other disabilities are not well integrated within the human service network in the District of Columbia. There is no strategic plan of action across District government agencies to coordinate new and existing programs/initiatives in child care, disability services, family support, family preservation, health, transportation, or housing, particularly those services impacting families with young children who are homeless.
The following scenarios provide insight into two families served by the Knock On Every Door project. These scenarios describe family characteristics, barriers families faced in accessing services for their children, and interventions provided by the Knock On Every Door interdisciplinary team. These portraits are not unusual examples and underscore the difficulty of delivering services and supports to this vulnerable population.
The Madison Family
Tina Madison is 19 years old and the single parent of two children, Tanika, age 4 years, and Donte, age 12 months. Tanika is in the custody of the District's Commission on Social Services as a result of confirmed child abuse. Donte lives with his mother. Ms. Madison had formerly resided with extended family until she became pregnant with her second child. She then lived for a brief period of time in a shelter for single adult women, but was required to move after her child was born. She was referred to the Knock On Every Door team when she was placed in the Highland Place shelter by the Family Resource Center.
The Knock On Every Door team provides services on a weekly basis at the Highland Place shelter. The week following her placement there, a team member met with Ms. Madison and asked if she was willing to have Donte receive developmental screening. Ms. Madison agreed and stated that she had a number of concerns about Donte's develop-ment. During screening, Ms. Madison shared with a team member that fact that her older child was in foster care because of child abuse. She expressed the fear that she may follow the same pattern of behavior towards Donte. Ms. Madison describes Donte as a very irritable baby who cries frequently and is not easily comforted. Developmental screening results revealed that Donte displayed excessive drooling, was not yet sitting unsupported, and his irritability interfered with his ability to interact socially with others, including his mother. Recommendations were given to Ms. Madison for additional diagnostic assessment to determine the nature and extent of Donte's developmental delays. She agreed to return for appointments scheduled at the Family Resource Center and was given an appointment slip.
Two days before the scheduled appointment, a team member left a reminder message for Ms. Madison with the resident manager of Highland Place shelter. Ms. Madison failed to keep her appointment and did not call to cancel. During the next weekly shelter visit, a team member made a home visit to determine her level of interest in pursing diagnostic assessment. Ms. Madison reported that she had lost the appointment slip and had never received the phone reminder message. Ms. Madison indicated that she was still interested in having Donte evaluated, but she was feeling a great deal of pressure to find permanent housing within the next 30 days. Additionally, the social worker from the Department of Social Services was asking her to establish weekly visits with Tanika and to attend twice weekly parenting classes in order for family reunification to occur. Ms. Madison said she felt completely overwhelmed. She was encouraged to share these concerns with the social worker who was assigned to the Highland Place shelter. Ms. Madison expressed reluctance and commented that the social worker was only interested in whether she kept her apartment clean and if she complied with curfew. It was agreed that appointments for diagnostic assessment would be postponed and a team member would contact her within two to three weeks.
A team member phoned the resident manager of Highland Place shelter to schedule a visit with Ms. Madison and was informed that she no longer was residing at the shelter. Ms. Madison had left a forwarding address, but authorization for the release of this information had not been obtained by the resident manager.
Ms. Madison has complex needs and seemed unable to establish a trusting relationship with any of the service providers during her brief time in emergency shelter. The Knock On Every Door team did not have the opportunity to conduct the recommended diagnostic assessment to determine the nature and extent of Donte's developmental delays.
This portrait characterizes many of the barriers cited within this monograph to the delivery of services and support to families who are homeless.
The Thompson Family
Gina Thompson is 36 years old and the single parent of three children ages 14, 4, and 2. Ms. Thompson applied for emergency shelter after losing her apartment due to drug addiction. She has not been employed since the birth of her 4-year-old son. Ms. Thompson's 14-year-old son, Darren, is attending high school in his old neighborhood where he is receiving special education services related to a specific learning disability. The two younger children, Adam, who is 4 years old, and Malik, who is 2 years old, have never attended child care or preschool programs. Ms. Thompson has no contact with her children's biological father and she has no family members who reside in the Washington DC metropolitan area.
The Knock On Every Door interdisciplinary team provides developmental screening and diagnostic assessment on site at the shelter where Ms. Thompson was staying. When approached by an interdisciplinary team member, Ms. Thompson cautiously agreed to have Adam and Malik receive developmental screening. She expressed some concerns about Malik's speech development, but did not convey any concerns about Adam. Adam's developmental screening results turned out to be age appropriate. However, developmental screening results for Malik indicated delays in receptive and expressive language. Interdisciplinary team members assisted Ms. Thompson in accessing early childhood programs that would meet the developmental needs of her sons. Additionally, interdisciplinary team members referred Ms. Thompson to an outreach mental health program to seek treatment for her drug addiction. Ms. Thompson remained in emergency shelter for two months and was subsequently moved to permanent housing.
The Knock On Every Door interdisciplinary team members had no further contact with the Thompson family for six months. While conducting a home visit to another family who had moved to permanent housing, two of the team members encountered Ms. Thompson in the apartment complex. On subsequent weekly visits to the apartment complex, Ms. Thompson shared with those team members the fact that she had resumed her drug habit. Her life had become so chaotic that she was no longer able to get her two younger children to their early childhood programs, and her older son was frequently absent from school as he assumed the responsibility of caring for both his siblings and his mother.
Although Ms. Thompson was initially hesitant and avoided interaction with the interdisciplinary team members who were conducting home visits within the apartment complex, the Knock on Every Door team members continued to make informal contacts with Ms. Thompson and made her aware that they were available to offer support whenever she desired. For two months, informal home visits were continued but, on occasion, Ms. Thompson did not answer her door. She gradually began to share that she was unhappy with her current situation and that she was ready for change. Ms. Thompson later confided that her initial hesitancy was due to embarrassment that she had resumed her drug abusing behaviors. Ms. Thompson had participated in four drug treatment programs unsuccessfully in the past and she feared failing yet another time.
Ms. Thompson was referred to a drug counselor who provided information about treatment programs and options. Before she reached a decision about treatment, the emergency housing office relocated her to another transitional housing program which offered a more structured environment. This program had a strong policy against drug abuse and mandated urine testing for adult residents. It offered a range of services including group counseling, employment counseling and job referral, parenting classes, and tutoring and child enrichment activities. The program's emphasis on personal responsibility and planning was crucial in Ms. Thompson's recovery. This transitional housing program is among the emergency housing agencies to which Knock On Every Door provides services.
Ms. Thompson's first four days in this transitional housing program were extremely difficult as she began withdrawal. An interdisciplinary team member made daily home visits to Ms. Thompson and, with her permission, established communication with the transitional housing program staff to advocate on her behalf.
A Knock On Every Door team member assisted Ms. Thompson in enrolling Adam in a local kindergarten and Malik in a Head Start program. Weekly home visits continued for a four-month period during which Ms. Thompson moved to permanent housing and assumed fulltime employment. Counseling sessions provided by team members focused on her continued recovery, parenting skills to enhance her children's development, and decision making strategies for daily living. Concurrently, a staff member from the transitional housing program made daily telephone contacts with Ms. Thompson.
Ms. Thompson has now developed a new network of friends within her apartment complex. She is continuing to attend recovery meetings and has remained drug free. Ms Thompson has begun to assume a leadership role within her neighborhood organization, and she continues to have intermittent contact with Knock On Every Door interdisciplinary team members. She has expressed pride in the progress that she has been able to make and is confident about her future.
A national dialogue on the correlation between homelessness and risk factors for developmental disabilities in young children is long overdue. The Administration on Developmental Disabilities has demonstrated leadership in this area by commissioning this monograph for dissemination to the national network of University Affiliated Programs, Developmental Disabilities Councils, and Protection and Advocacy agencies. Since programs funded by the Administration on Developmental Disabilities have a mandate to address the needs of unserved and underserved populations, the issue of homelessness should be given a high priority by the American Association of University Affiliated Programs, the National Association of Developmental Disabilities Councils, and the National Association of Protection and Advocacy Agencies. These national agencies should collaborate to assess the needs of families who are homeless and to identify strategies that respond to the needs of family members at risk for and with developmental disabilities within their states. Specific recommendations for University Affiliated Programs, Developmental Disabilities Planning Councils, and Protection and Advocacy agencies follow.
Role of the University Affiliated Program
Suggested Role of the Developmental Disabilities Planning Councils and Protection and Advocacy Agencies
Substantial documentation exists that supports the significant developmental risks that young children from vulnerable environments face. Due to the increasing number of families with children who are homeless, and the massive changes anticipated in funding at the federal, state, and local levels, a coordinated effort is needed to stem the effects of homelessness on young children.
The developmental disabilities network, which includes the University Affiliated Programs, the Developmental Disabilities Planning Councils, and the Protection and Advocacy Agencies, has the capacity to provide leadership in this arena. However, the network will need to collaborate with new constituencies that have traditionally been outside the boundaries of developmental disabilities systems. These new constituencies cover a broad range, which may include, but are not limited to, substance abuse and recovery programs; federal, state, and local housing authorities; domestic violence programs; and child advocacy programs.
The experience of the Georgetown University Child Development Center underscores the critical need to develop partnerships with the myriad of agencies providing services to families who are homeless. These relationships enable the needs and interests of young children at risk for or with developmental delays or disabilities and their families to be incorporated into planning and policy decisions made at the state level which affect housing and supportive services for families who are homeless. It has been the intent of this monograph to bring the issue of homelessness and its impact on the development of young children to the attention of a national audience. It is hoped that this monograph will raise our consciousness and provide the impetus to create a national agenda on behalf of these vulnerable children and their families.
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