The mission of the Bureau of Family Health (BFH) is to protect and promote the health and well-being of all mothers, children and families in Pennsylvania (PA). Children with special health care needs (CSHCN) are children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and health-related services beyond those usually required. The BFH provides services for CSHCN that are family-centered, community based, and coordinated. According to the 2018 National Survey of Children’s Health, 20.3 percent (538,391) of children in PA have a special health care need, exceeding the national average of 18.8 percent. Of those CSHCN, only 18.2 percent report receiving care in a well-functioning system. Clearly, there is a significant need for evidence-based programming and services for this population.
Not only are CSHCN a priority within the Title V work carried out by the BFH, but more than two million dollars in state funding are allocated to serve children with the following conditions: Cooley’s Anemia, Cystic Fibrosis, Sickle Cell, Spina Bifida, Hemophilia, Epilepsy, Tourette Syndrome, Charcot-Marie-Tooth (CMT) Disease, and services for children who are technology dependent. The BFH’s mission for CSHCN is to provide statewide leadership, in partnership with key stakeholders, to create systemic changes at the local, regional and statewide level to improve health and health related outcomes for at risk individuals and families.
The Specialty Care Program (SCP) consists of 35 grants across 17 grantees (11 hospital systems, five community organizations, and one national association). The SCP targets individuals diagnosed with one of six conditions: Child Rehabilitation (serving neuromuscular and orthopedic conditions), Cooley’s Anemia, Cystic Fibrosis, Hemophilia, Sickle Cell, and Spina Bifida. The SCP is focused on patient centered care through a multidisciplinary team clinic model, with the goal of improving patient health outcomes by providing comprehensive care and reducing barriers to adherence to treatment plans. Identified barriers have been shown to be consistent across conditions; examples include access to reliable transportation, gaps between insurance and services, coordination between care providers, and support to participate in community-based activities. In 2019, the SCP served 9,796 individuals from birth through age 21 years with Title V funds, and an additional 4,810 individuals age 22 and older with matching state funds.
In 2019, the SCP continued the grantee requirement to dedicate a certain percentage of funds into a Patient Assistance Fund (PAF), addressing critical barriers or needs that affect the patient’s ability to adhere to treatment or impact the patient’s quality of life. The intent is for grantees to assist families by providing immediate assistance through the PAF, long-term planning and solutions through the treatment plan, and care coordination to eliminate barriers. A combination of Title V funds and state matching funds are used to support Spina Bifida and Sickle Cell programs and services. State matching funds support the Cooley’s Anemia, Hemophilia, and Cystic Fibrosis programs, and Title V funds alone support the Child Rehabilitation program.
A Specialty Care Symposium was held in April 2019. The Symposium was offered to all grantee programs, as well as any other stakeholders and partners that serve individuals with a SCP covered condition. The goals of the Symposium were to provide enhanced technical assistance to SCP grantees, support the identification and remediation of health disparities, and to provide education on current treatments and best practices. The Symposium hosted speakers on health equity and family engagement, held break-out sessions related to services needed by the Specialty Care populations, and offered a resource exhibit of 21 health care, state agency, and support service providers. The Symposium was attended by over 100 doctors, nurses, social workers, community-based service staff, and related service providers across PA.
The BFH continued to support the Autism Diagnostic Clinic (ADC) through the grantee Easterseals Eastern PA, in collaboration with Children’s Hospital of Philadelphia (CHOP) using telehealth technology. Access to autism evaluations is extremely limited throughout PA. Families face wait times ranging from 12 to 18 months for a diagnosis, time that is critical to the child’s development. The use of telehealth in the ADC presents an opportunity to expedite the diagnostic process and facilitate the initiation of appropriate treatments. Funded by Title V, the ADC evaluates children age 18 months to three years identified as being at risk for autism at no cost to families. Children are referred to the ADC by Early Intervention, where they have been screened using the Modified Checklist for Autism in Toddlers (M-CHAT). The ADC evaluation is conducted by a specially trained occupational therapist using the ADOS-2 (Autism Diagnostic Observation Schedule) while videoconferencing with a Developmental Pediatrician and a Certified Nurse Practitioner from CHOP. Following the evaluation, the family receives the results, treatment recommendations, information and referrals. In 2019, 24 children were evaluated, 20 of whom were diagnosed with autism and provided additional services and supports. Currently, the ADC is able to evaluate two children per month. The BFH is assessing options to expand the program to enable additional children to be evaluated.
The BFH maintains ongoing, bi-monthly meetings with the Department of Human Services (DHS), Office of Medical Assistance Programs (which houses the state Medicaid program). These meetings are used to improve the systems of care for CSHCN. Topics of discussion include barriers to care, health disparities and access to Medicaid services. This ongoing collaboration has improved communications between state agencies serving CSHCN, reduced duplication, improved appropriate referrals, and contributes to a well-functioning system of care.
The BFH also provides state matching funds to support outreach and education-based grants for individuals diagnosed with Epilepsy, CMT Disease, and Tourette Syndrome. The Epilepsy Foundation of Eastern PA and the Epilepsy Association of Western and Central PA receive grants to support education for first responders, school employees, secondary students, family members and caregivers; along with community outreach events to increase awareness of epilepsy. They also provided epilepsy resources and supports to people with epilepsy and their family members and caregivers. The BFH works with the Charcot Marie Tooth Association (CMTA) to spread awareness and education about CMT disease. CMTA offers the only camp in the United States solely for kids with CMT. The camp is held in PA. Camp Footprint gives CMT campers the rare opportunity to master their environment, participate in activities planned just for them, and celebrate their abilities. CMTA also holds branch leader conferences in PA and around the country. Conferences focus on training branch leaders about community volunteer efforts and CMT education programs. In addition, CMTA provided education and training on research and community programs for CMT patients. CMTA outreach serves over 5,000 Pennsylvanians. The BFH works with the Pennsylvania Tourette Syndrome Alliance (PA-TSA), Inc. to provide support and education to individuals affected by Tourette Syndrome (TS), their families and healthcare and other professionals. PA-TSA provides statewide support and community services to promote awareness and understanding of TS. In 2019, PA-TSA held their annual Camp and Retreat hosting 148 attendees at Black Rock Retreat in Quarryville, PA. This retreat allows families to enjoy team building activities, participate in workshops, and focus on building their support system. Other highlights include mailing 6,000 newsletters and mailers, a magazine advertisement, and other training and events.
The Technology Assisted Children’s Home Program (TACHP) is funded through the Title V match and helps the state achieve its goals around providing enabling services for CSHCN that are family-centered, community-based and coordinated. The program provides for the coordination of care for technology dependent children 0 to 22 years of age. Technology-assisted refers to the use of a medical device (such as a feeding tube, catheter, EKG monitor, or ventilator) to compensate for the loss or diminished capacity of a vital body function. The scope of the program is to provide comprehensive non-medical services to families, as well as professional training for home health professionals and school nurses. In addition, there is an emphasis on empowering families to become advocates for their children, collaborating with providers and insurance companies, engaging with other families, and moving towards self-sufficiency. TACHP is administered by two grantees: The Children’s Hospital of Pittsburgh, covering the western and north-central part of the state; and The Health Promotion Council of Southeastern PA, covering the eastern and south-central part of the state. In 2019, the TACHP ended its initial three-year grant and started the first of two potential one-year renewals. That renewal lasts until June 2020. Maximum program capacity is 270 children, and as of the end of 2019, approximately 152 children were enrolled between the two grantees.
The BFH’s partnerships with hospitals, clinics, national associations, and Community Based Organizations (CBOs) enabled the identification of challenges that impact patient adherence to treatment plans, quality of life, and improved health outcomes. As mentioned previously these challenges were consistent across conditions, and included access to reliable transportation, gaps between insurance and services, coordination between care providers, and supports to participate in community-based activities. By engaging with grantees, the BFH began to collect input on the challenges and implement methods that move toward addressing barriers.
The BFH’s Head Injury Program (HIP), funded through state funds not part of the state match funding, provides rehabilitative and therapeutic services to individuals with a Traumatic Brain Injury (TBI). In December of 2018, the program, whose eligibility requirements included being age 21 or over, began accepting individuals with TBI age 18 and over.
Recognizing the need for rehabilitative and therapeutic services for individuals between age 18 and 21 with non-traumatic acquired brain injury, the BFH has begun development and implementation of the new Acquired Brain Injury Program (ABIP). The ABIP provides rehabilitation services to youth with an acquired brain injury within this age range and is funded by Title V. Services will be provided in PA by specialized brain injury providers and are expected to begin July 1, 2020. Rehabilitation services will be offered in an outpatient or home and community-based setting.
The BFH also administers the TBI State Partnership Grant, funded by the Administration for Community Living (ACL). The primary goal of this grant is to maximize the health, independence and overall well-being of individuals with TBI in PA. The grant provides education, training and technical assistance services to the juvenile justice and older adult population on TBI and screening for TBI, through the grantee Brain Injury Association of Pennsylvania (BIAPA). Throughout PA, 14 juvenile justice trainings were provided to 899 individuals and six older adult trainings were provided to 152 individuals. Through the grant a NeuroResource Facilitation Program (NRFP) has been implemented to connect individuals with TBI to appropriate resources, provided through the grantee Counseling and Rehabilitation, Inc. Throughout PA, 52 individuals have participated in NRFP. The BFH also serves as an ACL mentor state and assists other states with developing return to learn programs and creating programming within the juvenile justice systems in their states.
The BFH contracted with the Parent Education Advocacy Leadership (PEAL) Center, to implement the Leadership Development and Training Program (LDT). The grant with PEAL allows the BFH to strengthen the partnership with PA’s Family to Family Health Information Center and to improve upon the systems of care for CSHCN and their families. PEAL conducted youth leadership institutes and created a network of youth with disabilities and special health care needs across the state. Youth were instructed on self-sufficiency and how to reach their potential as self-advocates. Focus groups were conducted with grandparents raising CSHCN to assist with identifying the need for supports and linkage to resources. In addition, PEAL has partnered with other organizations to plan and deliver a conference for fathers of CSHCN, which will be held in 2020. During 2019, PEAL served 1,269 CSHCN and 2,584 individuals age 22 and older through outreach.
The County Municipal Health Departments (CMHD), funded by Title V, offer a variety of programs aimed toward CSHCN. All CMHD provide home visiting services to families with CSHCN if they are referred to the program. In 2019, Chester County Health Department provided home visiting services to over 240 CSHCN and those at risk for developmental delays due to congenital birth conditions, prematurity, mothers with substance use disorder, or mental health issues. The Chester County Health Department utilizes the evidence-based ASQ developmental screening questionnaire, during home visits and makes referrals to Early Intervention as necessary. The home visiting nurses encourage parents and caregivers to focus on stimulation activities and provide education on infant development. In 2019, the PA Medicaid Program expanded home visiting support for CSHCN. Children receiving shift care covered by Medicaid will be guaranteed at least one home visit with implementation expected effective July of 2020.The BFH will remain up to date on this initiative as to not duplicate services and ensure an effective system of care for PA’s CSHCN and their families.
The Philadelphia Department of Public Health (PDPH), through the Medical Home Community Team (MHCT) offers home visiting services to families with children ages 0 to 21, to address medical and social needs. The MHCT receives referrals from medical homes through the PA Medical Home Initiative (MHI) and partners with the pediatric care team and the child’s family to ensure all medical and social needs are met. Services include comprehensive family needs assessment, individualized health education, and referrals and linkages to behavioral health and community organizations. After a comprehensive assessment is conducted with the family, an intervention plan is developed to meet the family’s stated goals. MHCT staff supports families until the connection to appropriate care is made and families are better able to navigate through health and social systems. MHCT provides person-centered, family focused, comprehensive, and coordinated supports to enrolled children and their families. The MHCT collaborates closely with MHI staff to promote the program and ensure that the activities of the MHCT do not duplicate those of the MHI. The MHCT collaborated with ten Medical Home practices in 2019 enrolling 74 children and their families. The MHCT targets service to CSHCN but serves all children.
Additionally, the PDPH offered mini-grant project opportunities to community organizations. All funded projects were procured through a competitive Request for Application (RFA) process, were under $3,000, and promoted trainings or collaboration to improve systems that serve CSHCN. Projects included work with Easterseals to implement trainings and programs for families outside of normal program times in an effort to reduce barriers to participation and increase family involvement, animal therapy to help increase social and motor skills and create a sense of community, support and educational resources for parents of daycare age children with challenging behaviors, and training and outreach initiatives on Autism Spectrum Disorder and other developmental disabilities.
The Allegheny County Health Department (ACHD) implemented strategies and activities aimed at reducing lead exposure and lead poisoning in children under 6 years of age in Allegheny County. The goals are to strengthen blood lead level testing, population-based interventions, and linkage of services to lead-exposed children. ACHD conducted door-to-door outreach to provide lead education and offer to set up home inspections. These visits are made in targeted neighborhoods identified to be high-risk by the ACHD’s Epidemiologists based on property age, condition of homes, level of education, incidence of elevated blood lead levels, and recent births. The program also conducted outreach and follow-up with children identified with blood levels ≥ 5 µg/dL. The goal is to ensure that these children have a medical home, are connected with early intervention services, if necessary, and families are provided education regarding the risk of lead exposure and prevention and reduction of lead exposure in the home.
Priority: MCH populations are able to obtain, process, and understand basic health information needed to make appropriate health decisions
Objective 1: Annually increase the number of students who are receiving BrainSTEPS and/or Concussion Management Team services
The BrainSTEPS program operates across PA through 28 Intermediate Units (IU) and one school district. The IUs link with school districts to provide individualized support services for students who have had a TBI. BrainSTEPS teams prepare the student and family for return to school post TBI. The teams consist of education professionals, medical professionals, and family members who have received program training, and provide a link between medical and school personnel. There are currently 240 active BrainSTEPS Team members in place to support students. Annual student referrals to the program have shown an increase. The program has served a total of 5,249 referrals since program inception in 2007, and last year’s total of 529 new referrals exceeded the goal of 500.
The BrainSTEPS program continued outreach to increase public awareness of the program’s services. The Regional Team Lead Facilitator in the Philadelphia area assisted in program promotion, facilitation of new referrals, and BrainSTEPS Team development. In addition to the Regional Team Facilitator, a pre-doctoral student was assigned to assist with Philadelphia Neighborhood Network BrainSTEPS Teams. A Regional Team Leader provided additional outreach in midwestern PA, focusing on Allegheny County and the Pittsburgh Public Schools region. The BrainSTEPS Program staff provided additional outreach to the hospital and medical rehabilitation community in the Philadelphia and Pittsburgh areas. The program continued to evaluate existing education and training curriculum to ensure the materials are current.
The Concussion “Return to Learn” (RTL) Management Team Model, utilized by BrainSTEPS, has entered its seventh year. Concussion Management Teams support both student athletes and non-athletes at the local and district level who are returning to school, while also promoting recovery. The Concussion Management Team model was implemented by BrainSTEPS to help manage the increase in concussion reporting following the passage of the Safety in Youth Sports Act. PA is the first state to systematically roll out a program and facilitate RTL Concussion Management Teams. The state of Colorado has adopted the BrainSTEPS model into their educational practice with assistance from PA’s grantee. The BrainSTEPS program participated in an evaluation process conducted by the U.S. Centers for Disease Control and Prevention’s (CDC) Evaluability Assessment of the “Return to Learn” program model. This evaluation determined BrainSTEPS to be one of only two programs sufficiently ready for more rigorous evaluation, which the CDC is currently conducting. BrainSTEPS is currently participating in this new study, the Evaluation of Return to School Programs for Traumatic Brain Injury, which is designed to identify the RTL program strategies or components that are best suited for widespread adoption. The CDC plans to disseminate the results of the study to demonstrate the effectiveness of RTL programs after traumatic brain injury of all severities (e.g., mild, moderate and severe) in children.
One goal of BrainSTEPS is to expand the number of Concussion Management Teams based within school districts across PA. There are now over 2,500 Concussion Management Teams providing support for the student and family, an increase of 100 from the prior year. For concussed students who are still symptomatic after four weeks or have not returned to their academic baseline, BrainSTEPS Teams are available to schools to provide more intensive student concussion support, consultation, and training. BrainSTEPS teams are also available to consult with Concussion Management Teams at any time. BrainSTEPS activities are performed by the grantee BIAPA.
Priority: Appropriate health and health related services, screenings and information are available to the MCH populations
NPM: Percent of children with and without special health care needs having a medical home
The PA MHI, funded through Title V, will be undergoing evaluation and restructuring. Due to contractual negotiations, the evaluation of the MHI was delayed. It is anticipated the evaluation activities will begin in 2021.
In preparation for the MHI evaluation and restructuring, the Bureau participated in a short-term Action Learning Collaborative (ALC) offered by the national American Academy of Pediatrics medical home project. The ALC was designed to support pediatric practices in collecting social determinant of health (SDoH) data and provide support to patients experiencing barriers resulting from SDoH. The project started in October 2019 and will end in April 2020.
Objective 1: Starting with reporting year 2015, annually increase the number of pediatric primary care providers (PCPs) engaged in efforts to adopt medical home principles and practices for their populations
ESM: Number of providers participating in a learning collaborative, education and/or statewide technical assistance
In 2019, medical home primary care providers (PCPs) that reported data to the MHI served approximately 914,487 children and youth. This number includes 173,752 CYSHCN served by these 143 PCPs. The PCPs serve 34.4 percent of PA’s children under 18, which falls short of the goal of serving 63 percent of PA children under 18 and is one of the results that prompted a programmatic review of MHI.
The MHI had 864 encounters (e.g. education, technical assistance, meetings, and electronic communications) with medical home PCPs and PCPs considering a medical home approach. This count, which was not unduplicated, exceeded the 2019 goal of having 520 PCP encounters related to medical home concepts and tools.
Objective 2: Starting with reporting year 2016, increase the number of youth/young adults and parents/caregivers who are trained, engaged, supported and involved at all levels of program planning and implementation of medical home activities
ESM: Number of youth/young adults and parents/caregivers involved in aspects of medical home activities
Practice Coordinators and Parent Advisors offer onsite education, support and technical assistance to PCPs, and support PCPs who want to achieve national medical home accreditation. They partner with PEAL and other advocacy organizations to facilitate family member/caregiver engagement by showing PCPs how to recruit Parent Partners. Parent Partners serve on PCP transformation teams to assist PCP professionals in medical home adoption. In 2019, the MHI had 204 Parent Partners, which exceeded the goal of 200 participants.
Objective 3: Annually develop a minimum of one collaboration with a child-serving system that involves them in the provision of medical home services
ESM: Number of new formal collaborations developed with oral and behavioral health entities that serve pediatric populations
BFH reallocated MHI funding in 2019 to make funds available for the evaluation. Consequently, the MHI grantee, the PA Chapter of the American Academy of Pediatrics, was asked to eliminate their BFH funded outreach and recruitment events in 2019, and to instead prioritize maintenance of medical home PCPs and local partnerships that were already operating from a medical home approach. The MHI developed two new collaborative relationships in 2019, with Drexel University’s Dornsife School of Public Health and the Action Learning Collaborative for Patient/Family Centered Medical Home, which met the goal of two new collaborations.
These partnerships brought together people with similar objectives related to medical home primary care. The MHI hosted a symposium titled “Pa’s Opioid Epidemic & the Lifecourse: Policy, Practice, & Prevention”, with Dr. Rachel Levine as keynote speaker, and also developed data collection tools for social determinants of health within pediatric primary care practices. These learning events supported PCPs in adopting a medical home approach to primary care and integrating with mental, behavioral and oral health services.
The MHI supported the Rehabilitation and Community Providers Association, the Integrated Care Learning Community, the Coalition for the CommonHealth, the Whole-Person Primary Care Task Group, the National Center for Care Coordination Technical Assistance, the National FASD Champions Group, Pa’s Family to Family Health Information Center, the Foundation for Delaware County, the Home Nursing Advisory Committee, the LEND Advisory Committee, Public Citizens For Children and Youth’s Advisory Board, the Philadelphia Run Start Health Committee, the Philadelphia Special Needs Consortium, the Project Accessible Oral Health Collaborative, the Sickle Cell Foundation in PA, Tools for Meeting Life’s Challenges, the Western Psychiatric Institute, the PA Immunization Coalition, the Philadelphia Immunization Coalition, the Greater Philadelphia Immunization Collaborative, the Health Federation of Philadelphia, the National Council on Children with Disabilities, the Pa. Systems of Care Partnership,
Dental Disabilities Program Coalition, the Epilepsy Association of Western/Central Pa., the Greater Philadelphia HPV Collaborative, the Pennsylvania Psychiatric Leadership Council, the State Leadership Management Team, the Community Action Network, and National Family Voices.
The MHI worked closely with statewide partners to build oral health resources and educated over 300 professionals from 32 PCPs in basic preventive oral health services such as fluoride varnish application/oral health risk evaluation. The MHI collaborated with one of the Medical Assistance MCOs on an initiative related to access to dental care for children with autism.
Priority: Appropriate health and health related services, screenings and information are available to the MCH populations
Objective 1: Annually increase the number of families of children with special health care needs (CSHCN) served by the Community to Home (C2H) program
ESM: Number of families who receive services through the evidence based or evidence informed strategies of the C2H program
The Special Kids Network (SKN) and Community Health Choices utilized Title V funds to support, sustain, and improve statewide services to PA’s CSHCN. The SKN went through a transition in 2019 which resulted in components of the SKN ending with the exception of the SKN helpline and new programming being created. Through June 30, 2019, the BFH funded the SKN in-home service coordination through the grantee Elks Major Projects. The SKN provided 105 individuals with home visits during this time. These numbers are lower than past years due to providing home visiting services for six months compared to twelve in the past. The SKN hotline was transitioned from a grantee to being answered within the BFH and fielded 872 calls.
As of October 1, 2019, the BFH began implementation of a new program titled Community to Home (C2H). The C2H program is a home visiting program utilizing Community Health Workers through an evidence-based care coordination model. The BFH is partnering with grantees CareStar and Health Promotion Council to implement the Community to Home Program. Due to delays in the contracting process, it is anticipated that families will begin receiving services in 2020.
Objective 2: Annually increase the number of collaborations between systems of care serving CSHCN
ESM: Number of new formal collaborations developed between systems of care serving CSHCN
A collaboration is defined as a partnership between SKN or C2H and an organization that results in assisting families with obtaining information or providing support. The BFH met its goal of forming two new collaborations in 2019.
SKN collaborated with two new grantees, CareStar and Health Promotion Council, in order to develop and implement the new C2H program. These grantees will provide in-home services to CSHCN using the Community Health Worker model through a care coordination model. Additional collaborations and partnerships with community resources will be explored throughout the C2H program period.
Priority: MCH populations reside in a safe and healthy living environment
Objective: Each year, provide at least 250 families with respite care services
ESM: Number of families receiving Respite Care Program services
Caregiver stress is an important issue that was noted by focus groups during the 2015 Needs and Capacity Assessment process. Caregivers, particularly those who have CSHCN, often provide care to the detriment of their own health and well-being. They deal with physical and emotional strain, financial issues, marriage strain and stress, and often have little or no support, be it emotional, financial or physical. This lack of support affects the entire family, including the CSHCN and non-CSHCN siblings.
Because of these issues, the BFH began exploring the possibility of developing a program that would address these needs and resulting caregiver stress for all children and families with a focus on families of CSHCN. After much effort, the BFH was unable to implement a Respite Care Program and put the idea on hold until the 2020 Needs and Capacity Assessment was completed. Respite care was not determined to be a specific need during this assessment but the BFH continues to research alternative program models and evaluate the need for this type of program among the population served.
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