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CHOP Karabots Early Head Start (HS/EHS) Case Study
Background
For the past thirteen years, The Children’s Hospital of Philadelphia Early Head Start (CHOP Karabots EHS) has provided high-quality child development and family support services to low-income West
Philadelphia infants, toddlers, and their families. Established in 1999 through a grant from the
Administration of Children and Families Office of Head Start, the center has provided services to more than 2,700 children and is one of only four EHS programs in Philadelphia. Each year the center serves 136 income-eligible children and expectant families, with an average of 124 home-based and 12 center-based. Families come to the program through several pathways including: self-referrals, CHOP care providers, various community agencies, and CHOP Karabots EHS recruitment activities at local WIC offices, health centers, and family shelters.
CHOP Karabots EHS’ mission is to promote the physical, cognitive, social and emotional development of children by ensuring children have access to safe, enriching caregiving. The organization uses three approaches to achieve this mission. First, recognizing the central role of parents as the primary caregivers in a child’s life, CHOP Karabots EHS works to empower parents to become better advocates for their children, helping them to build stronger skills as teachers of their children. Second, CHOP Karabots EHS parents and children require easy access to comprehensive, integrated services and supports that strengthen their families. CHOP Karabots EHS works directly with local agencies to mobilize community based resources that build family resilience. Finally, CHOP Karabots EHS provides professional development for its own staff in addition to those of partner organizations to ensure that all agencies are providing the highest quality service to CHOP Karabots EHS families.
As part of its work, CHOP Karabots EHS offers an array of different family services including regular developmental screenings with referrals to Early Intervention when indicated, as well as assessments for child nutrition and home safety. CHOP Karabots EHS staff work with families to ensure that each child is insured and has a medical/dental home. In their work with families, CHOP Karabots EHS builds parent skills by teaching parents effective strategies to advocate for their child’s needs, attending medical appointments with families supporting parents as they learn to navigate the health care system. CHOP Karabots EHS staff educate parents about stages of development, nutrition, and infant care. Parents are able to explore leadership opportunities as part of their participation with CHOP Karabots EHS serving as elected Policy Council members and Parent Committee members.
Families may choose to receive services using a home or center-based option. Home-based services involve weekly visits with families in their homes, where CHOP Karabots EHS staff work with families to
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address ongoing issues or needs and educate families about their child’s growth and development. CHOP Karabots EHS partners with Montgomery Early Learning Center (MELC) to provide center-based activities. MELC provides child care for twelve CHOP Karabots EHS children at its Families First Center in West Philadelphia. CHOP Karabots EHS staff provide technical assistance to MELC childcare staff to ensure that children receive the highest quality care. Center-based families receive two home visits per year from their child’s MELC teacher to discuss progress and development. In addition, CHOP Karabots EHS hosts themed activities focusing on learning objectives and demonstrating positive parenting/child interactions. These events are available to both home and center-based families.
Throughout this process, CHOP Karabots EHS staff maintain their focus on empowering families and skill building. At the time of enrollment, CHOP Karabots EHS conducts a needs assessment with families, developing 90-day achievable goals in child development, family and community partnerships, and health/wellness called the “partnership plan”. CHOP Karabots EHS staff work with families to identify solutions that help them reach these goals, reviewing progress with families on a monthly basis. The CHOPS site director has been serving at the CHOP Karabots EHS program for much of its 13 year existence, guiding the program through its move from the original site on Civic Center Boulevard adjacent to CHOP’s main hospital to its temporary location in the Kirkbride Building, which is just 100 yards away from its current location in West Philadelphia at the intersection of 48th and Market Streets in the Nicholas and Athena Karabots Pediatric & Adolescent Care Center (CHOP Karabots PCC). This $27 million, 52,000-square foot state of the art pediatric care center was opened in January 2013,
established using a $7.5 million charitable donation from Nicholas and Athena Karabots. The center holds 56 child-friendly examination rooms, rooms for radiology, lab tests, hearing, and vision. Aiming to be much more than a doctor’s office, the center offers behavioral-health services, domestic violence counseling, dental care, a literacy program, a community asthma prevention program, homeless health initiative, and the EHS center as part of unique integrative model designed to reshape the face of pediatric health care. The CHOP CEO described the reasons behind this initiative: “We see this as a very good model. When you think about taking risk for a population of patients, it will require the integration of a lot of services that go beyond medical care. That’s what Karabots starts to do.”1
Promoting Health and Wellness
With CHOP Karabots EHS’ focus on improving child health outcomes, housing CHOP Karabots EHS at the Karabots site and including EHS in this new integrated model seemed like the perfect fit. Unfortunately over a year after moving into the new Karabots center, CHOP Karabots EHS has yet to reap the full potential of this close proximity to the Karabots PCC.
Of the 136 children at CHOP Karabots EHS, approximately 50% receive primary care at CHOP Karabots PCC. The remaining children receive primary care services from one of several private Pediatric practices in the West Philadelphia area. For CHOP patients, all parents sign release of information agreements at the time of enrollment to allow CHOP Karabots EHS staff access to their CHOP Electronic Medical Record (EMR). CHOP Karabots EHS is able to obtain access to patient records because the facility is considered part of CHOP. Release of information forms are technically not required; but having parents fill out this form makes them aware of the fact that CHOP Karabots EHS staff will review their child’s EMR to assist
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the family with addressing the child’s specific health care needs. CHOP Karabots EHS staff are able to review records in CHOP EMR but are unable to enter any information in the system or use the system to communicate with providers.
Every month CHOP Karabots EHS health educators use the state immunization database to obtain the most recent information on each child’s immunization status. If a child receives primary care at CHOP, CHOP Karabots EHS staff review information in CHOP’s EMR. Each month, CHOP Karabots EHS staff build reports summarizing the latest statistics on immunization rates, well visits, specialized care, allergies, feeding issues, and specific information on treatment plans such as asthma action plans for children enrolled in the program. Health educators keep track of all of the children’s medical information,
cataloguing this data into the CHOP Karabots EHS data system. Health educators and home visitors meet to review each child’s health status, identifying children who are behind on vaccinations, children with upcoming well visits, and families who may need specific services or supports, developing a plan of support to ensure that each child attends their well visit and is up to date on vaccinations. The health educator then works with home visitors, making sure home visitors implement the recommended support plan for each family.
In addition specialist provide training for staff around specific health related topics to assist EHS staff in explaining certain health related problems and conditions to parents and determine ways that CHOP Karabots EHS staff can support families in being seen at specialty clinic. CHOP Karabots EHS has a consultant nutritionist who assists with menus and helps with completing nutritional assessments for children to make sure children are eating as healthy as possible.
On occasion, CHOP Karabots EHS staff attend primary care or specialty appointments to act as an advocate for families. Families sometimes tell staff things that they are not comfortable telling their health care provider. As a result, CHOP Karabots EHS staff become the voice for families helping to advocate on their behalf, particularly if the family is having trouble communicating certain concerns that they have to providers. CHOP Karabots EHS staff also work with families to help them understand their child’s medical conditions and treatment plans. Staff usually do not follow up directly with providers, if issues are identified staff will wait to attend the next primary care visit with the family. In certain cases, EHS staff will call providers with families coaching the families through the conversation to help them obtain clarification on certain aspects of the child’s health and treatment plan.
The CHOPS director said, “We are effective in helping our families address their children’s health related needs in part because the center has a lot more resources available to it as a part of CHOP.” For
instance, when families have trouble setting up a primary care appointment at CHOP, CHOP Karabots EHS staff can work with CHOP scheduling to set up an appointment with a provider. For families who have problems making it to appointment and no show frequently, CHOP Karabots EHS staff are proactive and reach out to these families to help identify and address issues that keep the family from making scheduled appointments. In specific cases, CHOP Karabots EHS staff have gone to their homes on the morning of the visit to assist the family in getting to their child’s scheduled well visit.
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Using this approach, the Director and her staff have been effective in improving outcomes for CHOP Karabots EHS children. From 2008 to 2012, 85 to 100% of CHOP Karabots EHS children were up to date on their immunizations.2–5 During the same time period, between 91 and 100% of CHOP Karabots EHS enrolled children were up to date on preventive and primary healthcare.2–5 This is amongst a population with health disparity rates that rank amongst the highest in the country and are comparable to some developing nations. Infant mortality rates from CHOP Karabots EHS’ service area range between 7.3 to 13.7 per 1,000 live births. The percentage of women with little or no prenatal care within this area ranges between 14.6 and 19.7%. The percentage of 19 – 35 month children from this area up to date on immunizations is as low as 75%.6
In light of the tremendous need, the work that the Director and her staff have done to address these health disparities has been amazing. Yet work remains, particularly in terms of family engagement with primary care. Some CHOP Karabots EHS families are disappointed with the limited time they get with their providers, leaving appointments feeling that the issues they really care about never get addressed. Other families find it difficult to understand their child’s treatment plan and don’t feel empowered enough to ask questions or disagree with their child’s provider. These issues cause families to disengage with primary care. Families may not see the value in going to clinic when they feel that their child’s needs are not being met.
Well Visit Planner
With these issues in mind, the CHOPS director was introduced to the Well Visit Planner (WVP). By chance, the Director ran into a long-time friend and colleague at the National Head Start Association Conference. The Director shared her concerns with her colleague who recommended she look at the WVP. Developed in 2008, the WVP is a tool designed to help families identify priorities and key issues in advance of their child’s well visit, get more out of well child visits, and better engage with primary care. The Director’s colleague informed her that the American Academy of Pediatrics was looking to expand the use of the WVP to EHS/HS programs. In fact, she had pilot tested the tool with her families. Many of the parents at her program said that the WVP increased the value of their visit and help them focus their time with their child’s health care provider on what was most important to their family.
After visiting the WVP site, the Director was excited about using the tool at her EHS program. As she reviewed strategies for implementing the tool, she saw that as it pertained to EHS/HS programs, the WVP could be used as part of home visits, center-based care, or independently by parents. She ruled out the independent option immediately as she had concerns about literacy issues with some of her families and felt they may need staff support to use the tool.
When the Director discussed the possibilities of using this tool during home visits with her Health Educator and Health and Wellness Manager, they expressed concerns about adding another item to the long list of things that Home Visitors already had to do. The Health Educator said, “I think this tool has a lot of potential to help our families advocate for their child’s needs but using it as part of home visits might be too much. When we go to home visits we don’t always set the agenda with families. We often have to address whatever is going on in the home before we can get to the items we need to address. Sometimes we come into a home and mom and dad have just finished arguing or there is a Child
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Welfare agent at the home doing an assessment. It would be hard to ignore those issues and say ‘here let’s fill out this form about your child’s well visit’”. The Health and Wellness Manager said, “I agree this tool would be great for our families but I think it would be hard to complete as part of a home visit given all the other items we ask home visitors to address in such a limited amount of time.”
Still the Director thought it was best to test the WVP at a home visit and see if these concerns rang true. She went along with the Health Educator to her next scheduled home visit with an 18-year old mother and her 4-month old daughter. Because of her pregnancy, Anna had dropped out of school even though she was a senior and had almost all of her credits to graduate. Fortunately, she had enrolled in Yes Philly, an alternative school in North Philadelphia that helps out of school youth get back on track and graduate with their high school degree. The mother was due to complete all of her requirements to graduate in the fall and was planning to go to nursing school after finishing her studies at Yes Philly. The mother was interested in hearing more about the WVP and giving it a try at her home visit. Unfortunately, she did not have Internet access at her home; she would have to complete the WVP using a paper version. This version of the WVP does not provide access to many of the additional learning materials and features of the online version. If CHOP Karabots EHS decided to use the WVP at home visits, this would remain a persistent issue. Nearly 55% of Philadelphia households lack internet access.7 This percentage would likely be higher amongst CHOP Karabots EHS families who tended to use cell phones but not necessarily smart phones to access the internet.8–10
The Director watched and waited for the best time to introduce the WVP. The Health Educator, an expert at tactfully navigating the home visit, was effortlessly engaging the family in conversation all the while assessing the child’s development and taking notes, using each teachable moment as an
opportunity to educate the mother about her daughter’s growth and development. Home visitors are provided with a template for home visits to guide them through the interview. The Health Educator had stopped using the home visit template to guide her questions several years ago and typically just had a comfortable conversation with families. Using that strategy, she was always able touch on all the points outlined in the home visit guide but able to do it in a way that allowed her to better engage the family and make them comfortable with the home visit.
Watching the Health Educator work, the Director became concerned that having home visitors use the WVP might disrupt the natural flow of the visit, making families less comfortable with the entire process. The Director also noticed that there was a steady flow of people in and out of the house, some members of the family but also other people who she did not know and was not introduced to. Recalling that the WVP asked very sensitive questions about income, domestic violence, or changes in the family like death or job loss, the Director wondered how honest some mothers might be in responding to these questions without privacy.
Finally towards the end of the visit, the Director had an opportunity to introduce the mother to the WVP. She found it fairly difficult to administer the WVP in this setting. As the Director started to explain the purpose of the WVP, several people came into the room and the mother was distracted by a
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the Director was ready to hand the mother the clipboard to complete the WVP, the child spit up and began crying. To make things easier, the Director ended up reading off questions for the mother and writing her responses. The mother did not state any concerns regarding her daughter’s general health or development. All of the priorities that the mother picked were issues that she identified in her
conversation with the Health Educator.
The Director was most concerned about her conversation with the mother after completing the WVP. When asked whether she thought the WVP would be useful for her, the mother was ambivalent. In general, the mother felt uncomfortable asking her daughter’s doctor questions because she was a young mother, this was her first child, and what did she know. When it came to her daughter’s health, she simply did what the doctors told her to do and didn’t ask questions. There were times that she was confused or had others issues that were not addressed during her daughter’s well visits but she didn’t feel smart enough to voice her thoughts. She didn’t know if using the WVP would help her to get over her hesitance. Despite these issues, the Director was convinced that the WVP could help mothers advocate for their children but she was equally sure that using the WVP at home visits was not the best idea.
The Director reviewed the WVP implementation material with the Health Educator and the Health and Wellness Manager the next day, they noted that prior WVP pilot tests had used an onsite kiosk where parents could complete the WVP in advance of their visit, print out a report and take it with them to their child’s well visit. While there is limited space in the CHOP Karabots EHS office, the office does have a small computer lab available to parents. Parents use the computers to get access to the Internet, job search, look up resources, and print material. One strategy could be to set up a link to the WVP on these computers and allow parents to stop by CHOP Karabots EHS on their way to their child’s well visit. Parents could complete the WVP; print out their reports, taking the report downstairs with them to their child’s well visit.
Having identified a potential strategy to implement the WVP, the Director had to find a way to address her second concern: would her families agree to use the WVP? CHOP Karabots EHS uses an innovative model of governance in which a policy council, composed of current CHOP Karabots EHS parents elected to serve by their peers, must approve any new CHOP Karabots EHS initiatives and projects. The Director tested the WVP with council members. The parents were wary at first and had many questions
including: Who is going to see this information? Will this information be kept on file and used against my family later? Don’t the doctors already ask these questions, why do I have to answer them twice? The Director responded to the parents, explaining that the purpose of the WVP was to help parents prepare for well visits and prioritize issues that they needed to address. It was not a tool for the providers. She walked them through the tool, showing the parents how it could help them identify issues of concern. She generated a report showing them how the tool can help them craft their questions in preparation for the visit and provided links to helpful information that they could read regarding issues that needed to be addressed. After seeing this, CHOP Karabots EHS parents were on board and recommended that she start using the WVP as soon as possible.
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Bolstered by the response of her parents to the WVP, the Director began making plans to implement the tool at CHOP Karabots EHS, but one concern remained, highlighted by a statement from one of the council members. She said, “I’m really excited about this tool and can’t wait to use it for my child’s next well visit. But I worry that my doctor will use this as another excuse to brush off my concerns or he will not know about the WVP and will not be prepared to answer my questions and just ignore my concerns. Is there a way to make sure our doctors will know that we are bringing these with us and be prepared to answer our questions?”
Likely, the Director’ largest challenge would be getting CHOP primary care providers on board with this project, not that the providers would not see the benefit. In her conversations with CHOP providers, physicians expressed many of her same concerns about patients missing appointments, getting behind on vaccinations, and feeling disengaged with primary care. The real challenge came from the lack of integration between the two centers. While CHOP Karabots EHS and PCC were located in the same building, the process of integrating the activities of two centers was far from complete.
Even though they shared at least half of CHOP Karabots EHS’ children, there was little formal communication about their care. In many ways the Director’ staff functioned as community health workers, helping their families understand and follow through on the treatment plans outlined by providers in clinic. But staff learned about treatment plans from the parents, after visit summaries (AVS) (provided to families at the end of clinic visits), or provider notes in the CHOP EMR. This was frustrating to the Director and her staff who could benefit from more formal communication with CHOP Karabots PCC providers to clarify specific points or ensure that they were giving the same message as providers. To explore the possibilities of collaborating on this initiative, the Director reviewed the WVP with four providers at CHOP Karabots PCC including their Medical Director. Providers felt the tool would enhance family engagement with primary care and wanted to make it available to all of their patients not solely head start children. In particular, providers were most intrigued by the component of the WVP which encouraged families to discuss psychosocial issues within the home. The Medical Director said, “These are issues that impact our patients but families feel uncomfortable discussing with us. It would helpful to have a tool to help facilitate a conversation with parents about these problems.”
That said, each of the practitioners voiced reservations. CHOP Karabots PCC is a busy practice, accommodating more than 45,000 patient visits per year. The center also supports resident/medical student education and is the principal site for several federally funded research projects. All of these efforts consume a significant amount of provider time and center resources. CHOP Karabots PCC leadership was concerned about the practice’s ability to implement another web-based activity,
particularly if the tool did not interface with CHOP EMR. For this project to work the WVP would have to be linked to CHOP EMR, any additional efforts on the part of the providers or clinic staff would likely become untenable.
Providers recommended that the Director work with CHOP IT to link the WVP to CHOP’s EMR; automatically populating the clinic note section of a patient’s EMR with their WVP report after their parents had completed the WVP. At the same time, providers should be sent an email that a WVP report
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had been created for one of their patients. This would serve as a reminder for the provider to review the report in advance of the well visit. These reports would need to be available at least a week in advance to give providers enough time to review them prior to the visit.
Providers saw the value of coordinating messages to parents and informing CHOP Karabots EHS staff of their responses to priorities highlighted by parents in the WVP report but were not enthusiastic about the additional work that would require on their part to create yet another visit summary or contact CHOP Karabots EHS staff directly. One solution would be to work with CHOP IT to create a dot phrase in CHOP EMR that automatically populates the CHOP AVS and clinic note with priorities listed in the WVP report. Connecting these three documents could streamline provider efforts allowing them to type their responses into one document and easily transfer them to the other document with minimal effort. With this strategy, CHOP Karabots EHS staff could review AVS at home visits or look up clinic notes in the CHOP EMR to find out how CHOP Karabots PCC providers responded to priorities identified by parents in the WVP.
Implementing the Well Visit Planner
Using this grounded approach, the Director identified a strategy for implementing the WVP at CHOP Karabots EHS, garnering support from many key stakeholders as well. The success of this project would hinge upon linking the WVP to the CHOP EMR and setting up the CHOP Karabots EHS computer lab to allow easy access to the WVP. All seemed straightforward; however, the Director realized that there were several details that still needed to be addressed before moving forward including: How can they get parents into the CHOP Karabots EHS center a week prior to their visit to complete the WVP? How would she obtain the necessary support and resources necessary to link the WVP with the CHOP EMR? How would she go about training CHOP Karabots EHS and PCC staff about the WVP? What strategies would she use to monitor implementation of the tool and its impact on outcomes? Despite these challenges, the Director remained confident that the WVP would be a valuable resource to improve the health and well-being of the children her program served.
References
1. Brubaker H, Writer IS. New pediatric care center at Children’s Hospital of Philadelphia is a “model.”
Philly.com. Available at: http://articles.philly.com/2013-02-07/business/36952130_1_primary-care-medical-care-dental-care. Accessed September 18, 2014.
2. CHOP Karabots, 2012 Early Head Start Annual Report. 3. CHOP Karabots, 2011 Early Head Start Annual Report. 4. CHOP Karabots, 2010 Early Head Start Annual Report. 5. CHOP Karabots, 2009 Early Head Start Annual Report.
6. Community Health Assessment (CHA) Philadelphia, PA [PowerPoint Presentation]. 2014. Available at: http://www.phila.gov/health/pdfs/CHAslides_52114.pdf.
7. inShare0 BJK/ staff. 55 percent of Philadelphia households lack access to Internet: new early data shows rate higher than previously thought. Technical.ly. Available at:
http://technical.ly/philly/2012/04/04/55-percent-of-philadelphia-households-lack-access-to-9
internet-new-early-data-shows-rate-higher-than-previously-thought/. Accessed September 18, 2014.
8. Smith A. African Americans and Technology Use. Pew Res. Cent. Internet Am. Life Proj. 2014. Available at: http://www.pewinternet.org/2014/01/06/african-americans-and-technology-use/. Accessed September 18, 2014.
9. Rainie L. Americans and their cell phones. Pew Res. Cent. Internet Am. Life Proj. 2006. Available at: http://www.pewinternet.org/2006/04/03/americans-and-their-cell-phones-2/. Accessed September 18, 2014.
10. Dewey C. The 60 million Americans who don’t use the Internet, in six charts. The Washington Post. http://www.washingtonpost.com/blogs/the-switch/wp/2013/08/19/the-60-million-americans-who-dont-use-the-internet-in-six-charts/. Published August 19, 2013. Accessed September 18, 2014.
