Enhancing Developmental Services in Primary Care

KEY POINTS A single point of access system enables child health providers to link families with community-based services. Community networking efforts maximize access to services and lead to the optimal use of existing resources. Child Development Community Liaisons who perform research, outreach, and advocacy are a critical program component. INTRODUCTION "Do you have questions about how your child is learning, behaving or developing?" Asking a parent this simple question is a key to identifying children at risk for developmental or behavioral problems. But where do child health providers turn for help once they have identified a child or family in need of services? In Connecticut, the answer is Help Me Grow. Help Me Grow is a comprehensive, statewide, coordinated system of early identification and referral for children at risk for developmental or behavioral problems. The goals of Help Me Grow are to train child health care providers in developmental surveillance and to assist families and health care professionals in finding appropriate services for these children at-risk. The Help Me Grow program receives thousands of calls a year from child health providers, parents, and service providers. Children at risk who might otherwise remain unserved are being connected to valuable community resources. "Children with developmental problems are eluding early detection. Programs exist to help them, but too often we fail to link these children with the resources they need. Help Me Grow is that link." Paul Dworkin, MD This paper will describe the Help Me Grow referral and monitoring system, roles of the Help Me Grow staff, community outreach efforts, and quality assurance methods to derive implications for possible expansion, dissemination, and/or replication. OVERVIEW OF THE SYSTEM Help Me Grow has four components: A detection, triage, and referral system to link at-risk children and their families to existing programs and services; A resource inventory of community-based programs, addressing developmental needs and assisting families in supporting their children's development; Training child health providers in effective developmental surveillance and early detection; Data collection and analyses of children's developmental status and statewide resources to identify gaps in services and capacity issues. Help Me Grow is an example of bringing theory to practice. Neal Halfon describes the gap between child health care services and connecting families to community-based services, noting that "Care coordination strategies have not received adequate attention. Because developmental services require a successful link between the health care office and the community, care coordination is a critical component of a systemic strategy for providing better care."1 Help Me Grow serves children (birth through 5) who are at risk for behavioral concerns and/or developmental delays. Many children do not meet specific eligibility requirements to qualify for early intervention (Part C) or preschool special education programs (Part B). Such children who "fall between the cracks" often end up needing more intensive and expensive services at a later date if they do not receive supports early in life. Single Point of Access Help Me Grow provides a single point of access for all developmental programs and services (Birth to 5) through Child Development Infoline. Through a toll- free number (1-800-505-7000), a telephone care coordinator (CC) who is trained to listen and ask questions will talk with families and providers to help identify appropriate services and supports. Children at risk for adverse developmental or behavioral outcomes are connected to programs and services through Help Me Grow. Children likely to fulfill the requisite eligibility criteria are referred to the Connecticut Birth to Three System (Part C, Early Intervention), Preschool Special Education (Part B), or Children with Special Health Care Needs (Title V). How Does It Work? Children with developmental or behavioral concerns not meeting the specific eligibility criteria for early intervention become Help Me Grow clients. After conducting an interview with the family, the telephone care coordinator (CC) consults with the regional Help Me Grow Child Development Community Liaison (CDL) to discuss potential links to community resources. The CC next calls the resources to ensure that they have capacity and will meet the needs of the family. A call is then made to the family with the resource, name of the contact person, and number. After the resource connection has been made, the care coordinator asks the family for the most convenient time for a follow-up call. Depending on their response, follow-up might happen the next day or a week later. The care coordinator will call the family a total of three times over the course of three weeks. If follow-up is unsuccessful, a letter is sent with a list of resources. When a family is successfully connected, the medical home is notified to enable subsequent monitoring and care coordination. In addition, the child health provider can use this information to attempt to re-connect the family to resources if unsuccessful through Help Me Grow. A typical sequence of events is as follows: A family talks to their child health provider about concerns with their child's behavior or development and the child health provider calls Help Me Grow. The care coordinator takes the information from the provider and calls the family. During the telephone interview, the care coordinator may also learn that the family has many complex needs, such as domestic violence, divorce, housing, food, or lack of insurance. The range of calls can include issues as simple as a request for information on toilet training or as complex as the need for a domestic violence shelter. Here are just a few "snapshots" of calls received: The mother of a severely autistic child asks to be connected to family support groups. She is also the caregiver for an elderly parent. She was thrilled that someone was willing to make the ten calls it took to find services and supports. A grandmother called because her granddaughter's behavior was out of control. She was the primary caregiver. She was connected to grandparent support groups. She didn't realize how many grandparents were dealing with similar challenges. A child health provider called because a family refused to connect to much needed early intervention services. Help Me Grow found a family support center in their neighborhood that could support the family and help educate them about developmental delays. A Spanish-speaking parent called who had recently moved from Puerto Rico. She had a five-year-old child with developmental delays. Help Me Grow was able to help her identify her home school district and initiate the intake process. The child began attending school a week later. A child health provider called with concerns that a father was "very dictator- like" in his approach to the mother and children. The child was exhibiting aggressive behaviors and bed-wetting. The provider was concerned about domestic violence, but was not able to engage the mother in a conversation. The Help Me Grow staff talked with the mother. She disclosed that her husband "yelled a lot" and wondered if that was why her son was having problems. After three phone calls, the mother asked the CC for a domestic violence support group. Extensive Directory of Services Help Me Grow offers an extensive directory of community-based resources and programs through the State's Information and Referral Agency, United Way/Infoline. The Help Me Grow staff is responsible for giving accurate information to the Information Unit of the agency. Services and supports are ever changing. A resource that might have been available one month ago may no longer exist because the agency lost a staff member or funding. Common problems in accessing different agencies include long waiting lists, lack of transportation, and exclusion of specific insurance plans. The Help Me Grow staff are responsible for exploring any and all connections. When a specific, requested resource is not available, the CDL suggests other options that might not have been considered by the family. Thinking creatively about alternative options has proven to be a very effective way to maximize existing resources. Case Study A child health provider has a practice in a rural area. He called Help Me Grow to find translation and support services for a family whose child had developmental and behavioral concerns. The provider was having trouble explaining to the parent the recommendation that they bring the child to the regional children's hospital for tests and an evaluation. He requested an interpreter/ support person to go with the family. They spoke an uncommon language and did not have any family members who could help translate for them. The Child Development Liaison contacted agencies in the geographic area for these services but none of them could help. She then began a search including area churches. It took twelve calls to find a church that had a parishioner from this remote country. The parishioner spoke the language and was able to support the family. The family received the help they needed for their child and established a support system at the same time. Do Adequate Resources Exist? The staff is acutely aware that gaps and barriers to services exist. Some waiting lists for developmental evaluations, especially for children suspected of having Autistic Spectrum Disorders, are well over two years long. Many Child Guidance Clinics also have long waiting lists. However, over the three years that Help Me Grow has been in operation, some resource is virtually always identified. Many services exist; the challenge is often in successfully accessing those services. The staff problem solves and advocates, helping families connect to resources even when barriers exist. Case Study A Head Start agency had an answering machine with a message indicating that there was a waiting list. The message gave no number to call to find out how long the list was, or how to get on it. When the CDL tried to call the agency for clarification, they reached a message machine. After numerous attempts, the CDL called the director of the agency. She was told that families assume they would be called only if an opening arose. The CDL explained that the message was not clear, that it was confusing as to how to get on the waiting list, and that there was no way to know where one was on the list. The agency had a meeting and changed their intake procedure. WHO CALLS HELP ME GROW? According to an unpublished 2005 report titled Help Me Grow: Connecting Families to Resources by the University of Hartford, CT Center for Social Research, Help Me Grow has worked with more than 7,000 families since it began in April 2002. Capturing the uniqueness of the calls is difficult because of the wide range of presenting concerns. Questions regarding communication skills, social- emotional development skills, motor skills, and behavioral/mental health are the top concerns of families who call Help Me Grow. The significance of this observation is supported by research indicating that parental concerns about speech or behavior are often predictive of an underlying or family environmental factor that can affect a child's ability to enter school ready to learn.2 Forty-two percent of the calls to Help Me Grow are from parents or guardians, while 25% are from child health providers. Other sources of calls include transfers from the 211 Infoline call center (5%), and the remaining 6% that is evenly divided among relatives, childcare providers, and social service agencies. These statistics inform the future marketing strategies for Help Me Grow. According to recent analysis, 57% of all callers have previously used Help Me Grow. Twelve percent of new callers heard about Help Me Grow from their child health providers. Children under one year of age account for 23% of all calls, larger than any other age group. This includes children whose parents call CDI looking for Birth to Three services, but are found to be ineligible. Similarly, many calls about children age 3 through 5 include children who are ineligible for Preschool Special Education Services. Role of the Child Development Liaison The Help Me Grow child development liaison (CDL) supports the telephone care coordinator, facilitates community networking meetings, and provides trainings for community and child health providers on developmental screening. They are the experts on programs, services, and initiatives currently existing within their regions. The CDLs are located in each of the three geographic regions of the State. They use a variety of approaches to gather information. The CDLs facilitate meetings of community-based agencies to share information and to develop solutions to challenging situations. This useful approach is in the format of regional networking breakfasts. Hundreds of providers from across the State have joined these groups. The power of the networking component allows providers to share information, widen their connections to a broader group of providers, and assist one another. The breakfasts enable providers to support and help each other during these challenging economic times. Providers often come to a meeting feeling hopeless and frustrated about how to help a family and leave with a list of options and connections. Discussion topics on current issues facing families are generated by the group and include information on new resources, immigration laws, domestic violence, and special education laws. Providers have commented that networking has connected them to resources that they never knew existed, and provided an opportunity to meet and connect with peers who are similarly struggling to meet the needs of families. This networking has helped communities to make decisions about the types of support services that are needed. For example, one group identified the need for more teen parenting classes. The meetings are brief, about 1½ hours, and are scheduled in the early morning to enable participants to then staff their program. The Power of Community Networking Case Study Help Me Grow child development liaison was looking for a support group for a Spanish-speaking family who had a child with autism. A community provider held a support group with several bilingual parents. She offered to help the family. Several days later, the provider contacted the CDL to see if other agencies would be interested in forming a Spanish-speaking support group. The CDL reports, "I sent an email to my distribution list from the networking meetings asking if anyone knew of existing support groups for Spanish speaking families. Within two days I received 15-20 responses from other providers. I passed the list on to the provider who was very grateful." Community networking meetings have also included pediatric residents from the University Of Connecticut School Of Medicine. Dr. Dena Hoberman, one of the residents who now practice pediatrics in Connecticut, reported that, "Before I began working with Help Me Grow, I found it challenging to connect families and children to needed services. In my experience with Help Me Grow, I have had the opportunity to attend the networking meetings. Here I met representatives from community programs that have helped me find resources for a family who had a unique, at-risk situation." Child development liaisons also participate in key community meetings, forums, and fairs. Their role is to continually make sure that the "dots are connected" within the community. They are also responsible for marketing the program to child health providers, parents, and service providers. They are often consulted and provide technical assistance throughout the community. When they find out about a new program or resource, they inform the care coordinator by completing a form which is entered into the resource database. CDLs also train child health providers, childcare providers, and parents on developmental screening. When they train child health providers and discuss Help Me Grow, they are also able to provide specific information about local programs. Providers are often unaware of a variety of resources within their area. Ages continuing to expand the base of trained child health providers; and expanding and updating the Child Development Infoline Resource Inventory. In addition to the CQI meetings, all partners of Child Development Infoline (i.e. Birth to Three, Preschool Special Education, Children with Special Health Care Needs) meet on a monthly basis to discuss common challenges, changes in their programs, and future agenda items. These meetings allow for the important flow of information between the partners and the Infoline staff. IMPLICATIONS AND LESSONS LEARNED Help Me Grow represents an important support system for families and providers in the State of Connecticut. It is a comprehensive, coordinated system of early identification and referral for children at risk for developmental and behavioral problems. The simplicity of the concept (connecting families to existing, community- based resources), with the support of The Commonwealth Fund and the Children's Fund of Connecticut, have helped the program to become a key component of the State's infrastructure for early childhood services. Help Me Grow staff actively participate in other important initiatives throughout the State, including the Steering Committee of the State Early Childhood Comprehensive Systems Initiative (SECCS), the Early Childhood Alliance, and the Child Health and Development Institute Steering Committee on Consultation to Childcare. Connecting families to appropriate community -based resources is a difficult and frustrating process that is often fragmented and not user- or family -friendly. Efforts to connect families to services, resources, and systems often do not recognize the families' cultural, language, or individual needs. Current systems use a "silo" approach to providing services, resulting in poor communication, potential duplication of services, and complex solutions to already difficult situations. Providing this comprehensive, coordinated system of early identification and referral for children at risk for developmental and behavioral problems requires several key components: A single point of entry to a comprehensive, coordinated system of early identification and referral for children at risk for developmental or behavioral problems. This system must support the families of young children by helping them find necessary supports despite the challenges of accessing programs and services. Families are often discouraged and give up seeking the help they need when they are not able to connect to support services. This leads to a crisis-driven, rather than a prevention-oriented system of service delivery. Providing a link to existing community- based programs maximizes the use of these services and optimizes their benefits. Community networking efforts that maximize access to services and lead to the optimal use of existing resources. Staff that perform research, outreach, and advocacy functions. Data collection and analyses that identify gaps and barriers to services and inform advocacy efforts. A role of Help Me Grow is to help families maneuver through the myriad of barriers that impede access to existing resources. Through data collection, the program is able to analyze gaps and barriers, drive system change, and improve access to services for families. The Help Me Grow staff is encouraged to think "outside the box," using creativity and perseverance to assist families. This system coordination helps parents avoid the frustration of maneuvering through the maze of community-based resources. Based on our experience in Connecticut, we are committed to the dissemination of our model, sharing the lessons we have learned and exploring the potential for replication in other states. Presentations of the Help Me Grow program have been made at the national level, including, meetings of the National Initiative for Children's Healthcare Quality (NICHQ) and the American Maternal Child Health Association (AMCHP). Components of the Help Me Grow system are easily identified; most states have a Children's Trust Fund, Information and Referral Agency, as well as Part C, Part B, and Title V funds. Evaluation demonstrating the benefits of Help Me Grow for Connecticut's children and their families should inform broader dissemination and replication, both regionally and nationally.