PPC and PennAEYC, with support from three early childhood consultants, assessed and informed the development of an action agenda for Pennsylvania’s Part C Early Intervention (EI) system. An in-depth assessment, including participation from over 150 individuals, led to the statewide agenda outlined in this report.
Statewide Advocacy Agenda to Improve Part C Early Intervention Services for Pennsylvania June 2022
TABLE OF CONTENTS
Acknowledgements...................................................................3
2. Ensuring Part C EI services offer quality needed to make a difference (Q)..............................................16 Issues and Solutions related to Quality (Q)...............................................................19 3. Achieving equitable access in Part C EI..............21 Issues and Solutions related to Equity (EQ)...................................................................23 4. Addressing mental health needs of infants and toddlers in Part C EI........................................................24 Issues and Solutions related to Mental Health............................................................26 5. Partnering with Medicaid to improve Part C EI.................................................................................27 Issues and Solutions related to Mental Health............................................................................. 29
I. Introduction and Approach.................................................4 Scope of the Project...................................................................4 Participants in Development of Advocacy Agenda........................................................................5 II. Overview of the Early Intervention Program.............6 Core Principles of Part C Early Intervention in Pennsylvania...................................................................................6
III. Priority Recommendations At a Glance....................11
IV. Priority Recommendations............................................12 1. Serving all children who can benefit from Part C EI through outreach , referral , enrollment . .......12
Issues and Solutions related to Outreach, Referral, and Evaluation (ORE)..........................15
Acknowledgements Pennsylvania Association for the Education of Young Children (PennAEYC) is an affiliate of the National Association for the Education of Young Children (NAEYC) and is a dynamic membership organization of early childhood care and education professionals. Our mission is to be an effective voice for high-quality early childhood care and education. We do this through policy development, advocacy and professional development and supports for early childhood professionals. PennAEYC’s vision is that all Pennsylvania families will have access to high-quality, affordable early childhood care and education opportunities for their children provided by a profession that is valued, well compensated and supported. Pennsylvania Partnerships for Children (PPC) is a strong, effective, and trusted voice to improve the health, education, and well-being of children and youth in the commonwealth. Throughout our nearly 30-year history,
our public policy victories have helped countless children learn, thrive, and succeed. With a vision to ensure every child living in Pennsylvania can thrive and reach their full potential, PPC is committed to considering policy solutions that also improve maternal health and advance racial equity. Focusing on five core policy areas – child welfare, early childhood education, home visiting, K-12 education, and maternal and child health – PPC is statewide, independent, nonpartisan, and nonprofit. The William Penn Foundation funded this project. The William Penn Foundation, founded in 1945 by Otto
and Phoebe Haas, is dedicated to improving the quality of life in the Greater Philadelphia region through efforts that increase educational opportunities for children from low-income families, ensure a sustainable environment, foster creativity that enhances civic life, and advance philanthropy in the Philadelphia region. Since its inception, the Foundation has made nearly 10,000 grants totaling over $1.6 billion. The opinions expressed in this report are those of the author(s) and do not necessarily reflect the views of the William Penn Foundation. Many people worked together to support the development of this policy action agenda for Early Intervention Part C, including many people from throughout Pennsylvania who contributed their insights to this report; our consultants Harriet Dichter, Kay Johnson, and Elisabeth Burak; and staff from PPC and PennAEYC including Justin Beyler, Jen DeBell, Kim Early, Kelly Hoffman, Kari King, Maggie Livelsberger, Becky Ludwick, Keevan Merryman, and Rachael Miller.
Pennsylvania Association for the Education of Young Children and Pennsylvania Partnerships for Children, with support from Harriet Dichter, Kay Johnson and Elisabeth Burak. Statewide Advocacy Agenda to Improve Part C Early Intervention Services for Pennsylvania 2022 (2022).
June 2022
3
I. Introduction and Approach Pennsylvania Partnerships for Children (PPC) and Pennsylvania Association for the Education of Young Children (PennAEYC), with support from three early childhood consultants, came together to assess and inform development of an action agenda for Pennsylvania’s Part C Early Intervention (EI) system. An in-depth assessment, including participation from over 150 individuals, led to the statewide agenda outlined in this report.
Figure 1. Key Elements Informing Advocacy Agenda 1. Resource scan of
with shared roles met together. Discussions were led by the consultants, using a semi-structured discussion guide. Participants shared their experience with the Part C Early Intervention (EI) program, based on their views of strengths, challenges, and opportunities for improvement. While participants brought forth issues on their own, the protocol allowed for probing in the following areas: • Child Find and referrals • Eligibility and enrollment processes, including Individualized Family Service Plan (IFSP) • Range of conditions and diagnoses national data and reports 2. Small group discussions with 150 individuals, organized by role, to share EI experiences, identify strengths, challenges and opportunities for improvement 3. Two large group meetings with 90 plus individuals synthesizing information on strengths, challenges and opportunities for improvement, and mutual agreement on recommendations for the action plan 4. Multiple meetings with the Pennsylvania Office of Child Development and Early Learning (OCDEL) to gather and confirm information and to review strengths, challenges and opportunities for improvement
Scope of the Project The focus of this advocacy agenda is Part C of the Early
This statewide legislative and administration action agenda was developed with input and information from multiple sources: a resource scan of national data and reports, consideration of the structure and approach to Part C in Pennsylvania, and many individuals. We sought individual and organizational input using small group discussions and two full participant meetings. This multi-step engagement process enabled all interested participants to play a key role in shaping the action plan, providing feedback at each stage of the process from mid-2021 through mid-2022. Initially we met with 150 individuals who had many different roles in Early Intervention. Small group discussions were organized by role so that individuals Intervention (EI) system, which serves infants and toddlers and their families. Early Intervention in Pennsylvania also provides services to preschool age children. While there are many similarities between these programs, and they have similar goals, the programs have different federal requirements. A similar project is needed to address and further support the preschool age component of Early Intervention.
June 2022
4
• Equitable access (e.g., by geography, race/ ethnicity, income, and disability/health status) • Provider availability (e.g., range of services, provider types) • Transition from Part C to IDEA Preschool Special Education or other services • Systems collaboration and partnerships In addition, we met periodically with the Deputy Secretary, Pennsylvania Office of Child Development and Early Learning (OCDEL), and her staff to gather information, ensure the accuracy of information, and to review and discuss what we were hearing from the many individuals who participated in the small group discussions. Following the resource review and the small group discussions, the team synthesized all of the information on the Part C EI system to identify key strengths, key issues for improvements, and recommendations. A summary document was provided to all participants. Two interactive
Participants in Development of Advocacy Agenda • Advocates • County agency leaders • Early care and education providers • Early Intervention providers and service coordinators • Families • Managed care organization (MCO) staff • Pediatric health care providers • State administration staff • State legislative staff
community meetings allowed all participants clear opportunities in the process to learn from each other and to review and refine emerging priorities.
June 2022
5
II. Overview of the Early Intervention Program The federal Early Intervention Program for Infants and Toddlers with Disabilities—now authorized under Part C of the Individuals with Disabilities Education Act (IDEA)—was established in 1986. The Part C program, administered by states, seeks to ensure early intervention (EI) services to children with disabilities as early as birth through age 2 (to the third birthday) to: 1) enhance the development of infants and toddlers with disabilities, 2) reduce educational costs by minimizing the need for special education through early intervention, 3) minimize the likelihood of institutionalization by and maximizing opportunities to live at home and in the community, and 4) enhance the capacity of families to meet their child’s needs. Overall, it aims to improve outcomes that are critical to health, optimal development, educational success, and lifelong wellbeing. The Part C EI services are structured to identify and meet the needs of infants and toddlers in five developmental areas: physical development, cognitive development, communication development, social or emotional development, and adaptive development. In every state, the Part C EI requires and helps to support development and implementation of a statewide, comprehensive, coordinated, and multidisciplinary interagency system to make early intervention services available for all infants and toddlers with disabilities and their families.
635(a)(1)). For example, 37 states include hearing impairments, 32 states include Down syndrome, 32 states include low birthweight, 25 states include autism spectrum disorders, and 22 states include preterm birth on a list of conditions or criteria for Part C EI eligibility. (Barger et al., 2021, https://journals. lww.com/iycjournal/Abstract/2019/10000/State_ Variability_in_Diagnosed_Conditions_for_IDEA.2.aspx)
Core Principles of Part C Early Intervention in Pennsylvania
• Provide services and supports to infants and toddlers with disabilities and their families to help the child grow and develop—to be family- centered.
• Embed services and supports
within daily routines and learning opportunities in natural home and community settings.
• Build on existing supports
In addition, at a state’s discretion, infants or toddlers with a disability may also include: a) individuals younger than 3 years of age who would be at risk of having substantial developmental delay if they and services within the family, community, and early education resources. • Provide coordinated, flexible services and supports through personnel working collaborative with the family and each other. • Provide services and supports focused on the transition between and among programs. Adapted from “ A Family’s Introduction to Early Intervention in Pennsylvania ” and “ Pennsylvania’s Approach to the Delivery of Early Intervention Services .”
The program is designed to help families with children who have developmental delays or a high probability of having a developmental delay. Under federal Part C EI rules, an infant or toddler with a disability is defined as an individual under 3 years of age who needs EI services because the individual is experiencing a developmental delay in one or more of the five areas of development or has a diagnosed physical or mental condition that has a high probability of resulting in developmental delay (IDEA, Section 632(5)(A)). Within this broad federal definition, states have the authority to establish eligibility criteria such as the conditions or the level of developmental delay needed for Part C eligibility (IDEA, Section
June 2022
6
did not receive early intervention services; and b) individuals 3 years of age and older with disabilities who are eligible to receive preschool services under IDEA, Part B, Section 619, until such individuals are eligible to enter kindergarten or an earlier timeframe. The Part B Section 619 program is focused on preschool-aged children from 3 through 5 years. In Pennsylvania, the program is jointly overseen by the Department of Education (Part B) and the Department of Human Services (Part C), with direct administration by the Office of Child Development and Early Learning (OCDEL). Pennsylvania counties have responsibilities that affect virtually all operational aspects of the Part C EI program (PA Chapter 4226). These responsibilities include administrative and linkage structures for: a Child Find system, eligibility determinations and at-risk category tracking, fiscal administration, contracts with providers, monitoring and data reporting, and so forth.
Each states’ Part C EI program is required to have a Child Find system, which must include referral procedures (IDEA Part C Sections 303.302 and 303.303). These procedures must detail general referral approaches, specific procedures for use by primary referral sources, as well as those tailored for specific infants and toddlers who are the subject of a substantiated case of child abuse or neglect or are identified as directly affected by illegal substance abuse or withdrawal symptoms resulting from prenatal drug exposure. Primary referral sources include birth hospitals/neonatal intensive care units (NICUs), pediatric primary care providers, early care and education providers, other health or social service agencies, and those who serve vulnerable families in homeless shelters and domestic violence agencies. In addition, families may self-refer to Part C for screening and evaluation to determine eligibility. Figure 2 shows the elements of the Pennsylvania Child Find process prior to entering the Part C EI program.
Figure 2. Pennsylvania Child Find Process Prior to Entering Part C Pennsylvania Child Find Process Prior to Entering Part C
Home from birth setting
NO
NO
Need NICU
Parental concern
Typical development
Birth
Family
YES
YES
NICU care
Primary care & well-child visit
Health providers
Develop- mental screening
Indication of developmental risk or delay
Home visiting Early care & education Child welfare
Monitor at-risk in certain categories
Other providers and programs
YES, referral to Part C by provider or family may self refer
Others
NO
YES
Comprehensive evaluation confirms status
Part C agencies and staff
Referral to Part C
Initial process
Eligible for Part C
June 2022
7
II. Overview of the Early Intervention Program (continued)
Figure 3. Details of Part C EI Process from Point of Referral (Timeline: 45 days from referral to completed IFSP) Details of Part C EI Process from Point of Referral Timeline: 45 days from referral to completed IFSP
County procedures for contacting family at least every 3 months
Developmental screening or other assessment
Indication of developmental risk or delay
At-risk tracking for certain categories
Child Find process
Referral to be made within 2 working days
NO
YES
Comprehensive evaluation confirms status
Eligible for Part C
Referral to Part C
Initial process following referral
Initial Process including Multi-Disciplinary Evaluation (MDE) • Review of records, evaluation of function, assessment of needs • Participation of at least one qualified professional, service coordinator, family and others family invites • Timely & independent • Report to parent in 30 days (within the 45 day total)
Complete IFSP process
The Part C EI process from referral to eligibility determination must adhere to specific procedures, structures and timelines. As shown in Figure 3, the two key elements, as required by federal law are an initial process and a multi-disciplinary evaluation (MDE). In Pennsylvania, these steps are closely intertwined. If the MDE confirms the child is eligible, the process step to create an Individualized Family Service Plan (IFSP) begins. Part C EI service coordinators and other professionals develop the IFSP with the family, identifying the goals and outcomes important to the child and family, what services they already have, what services and supports they need, and the specific services to be delivered and financed under Part C EI. Early intervention services are required to begin no later than 14 calendar days from the date of completion (and signing) of the IFSP unless a later date has been specified. Part C EI programs can provide information on how children develop, therapies to help a child to move his or her body or communicate, services to support social-emotional development, information
designed to help a family enhance their child’s growing and learning, and ideas for how an early care and education provider can help the child in a child care or other setting. Service types include, but are not limited to, service coordination, family training, speech-language services, occupational and physical therapies, audiology, vision services, psychological and social work services, nutrition services, assessment and evaluation services, and nursing support and health services necessary to enable a child to benefit from other EI interventions. Generally, Pennsylvania ranks highly on key federal performance measures for the Part C EI program. Families report that Part C EI services help them to communicate with their child (97.0%), help their child learn (99.5%), and know their rights in the process (96.4%). Data from a related survey of Pennsylvania families shows that 99% of families felt they were part of the IFSP decision-making process and 96% agreed that EI helped them address concerns during the transition process. These high levels of family satisfaction with the Part C EI program are a strength
June 2022
8
Figure 4. Pennsylvania Part C EI Program Performance, By County: Percentage of Program Participants Who Received EI Services on their IFSPs in a Timely Manner, 2019-2020. Pennsylvania Part C EI Program Performance, By County: Percentage of Program Participants Who Received EI Services on their IFSPs in a Timely Manner, 2019-2020
100% 99%
Key
Erie
98-97% 96-91% ≤ 90%
Susquehanna
Mckean
Warren
Bradford
Tioga
Potter
Wayne
Crawford
Forest
Wyoming
Cameron
Sullivan
Lackawanna
Elk
Venango
Pike
Lycoming
Mercer
Clinton
Luzerne
Clarion
Jefferson
Monroe
Columbia
Montour
Clearfield
Lawrence
Union
Centre
Butler
Carbon
Armstrong
Northumberland
Snyder
Northampton
Beaver
Mifflin
Indiana
Schuylkill
Lehigh
Juniata
Cambria
Allegheny
Blair
Dauphin
Berks
Perry
Lebanon
Bucks
Huntingdon
Westmoreland
Montgomery
Washington
Cumberland
Lancaster
Chester
Bedford
Somerset
Delaware
York
Fayette
Fulton
Franklin
Adams
Greene
Source: BEISFS. Pennsylvania Early Intervention Annual Performance Report: Data on the FY 2019 Infant Toddler and Preschool Early Intervention Programs
in Pennsylvania and reflect the commitment of the state’s program to partnering with families. In 2019-2020, 93.9% of Pennsylvania families using the program reported their children received services specified on their IFSP on time. As shown in Figure 4, however, performance in delivering timely services varies by county.
Successfully serving infants and toddlers with or at risk for developmental delay requires partnership and collaboration across state agencies and among child serving systems. The Pennsylvania Office of Child Development and Early Learning (OCDEL), part of both the Department of Education and the Department of Human Services, oversees Part C EI (See Figure 5).
Federal appropriations for Part C EI are limited and fall short of covering the full cost of the program in every state. Funding for the Part C EI program in Pennsylvania includes: a) federal Part C funds, state EI funds, and county matching funds (10% of federal dollar allocation to county) via the county-level Part C program, and b) Medicaid fee-for-service payments to EI providers from both regular Medicaid financing and the Infant, Toddler, and Family waiver. By law, federal Part C funds are required to be the last funding source used (i.e., payer of last resort).
Figure 5. State Agency Partners Supporting Early Intervention
Department of Education
Department of Human Services
Medical Assistance Programs
Children, Youth, and Family Services
Office of Child Development
and Early Learning
Mental Health and Substance Abuse Services
Developmental Programs
June 2022
9
II. Overview of the Early Intervention Program (continued)
Within the Department of Human Services, several other offices are key partners to Part C EI’s success. The Office of Medical Assistance oversees Medicaid, a key source of financing for Part C EI services. The Office of Children, Youth, and Families has responsibility under federal law to engage in a process that ensures referral of children under age 3 who have a substantiated case of child abuse and neglect. The Office of Mental Health and Substance Abuse Services plays a role in structuring mental health services for infants and toddlers, as well as for their caregivers. The Office of Developmental Programs administers Medicaid waiver programs for home and community-based services and makes other policy and practice decisions that affect the lives of young children with disabilities. Multiple child and family service systems must work in concert to assure that each infant and toddler‘s health, developmental, mental health, safety, and other needs are met. In particular, successful delivery of Part C EI services to address the risks and needs of infants and toddlers requires clear communication, interaction and linkages among service systems driven by each child and family’s needs as identified in the IFSP. As shown in Figure 6, at least five key child service systems contribute to the success of the Part C EI program. The Part C EI service providers themselves play a dominant and central role. Health care providers—including birthing hospitals, neonatal intensive care units and pediatric primary care providers—are central points of broad contact in screening and referring children to Part C EI. Since many infants and toddlers spend time in
Figure 6. Service Systems Supporting Early Intervention
Early Care & Education
Part C Early Intervention
Infant-Early Childhood
Mental Health
Health Care
Child Welfare
early care and education settings such as child care, close partnership with EI providers is also essential for success in promoting optimal development. For some young children with mental health conditions or risks that fall both inside and outside of Part C EI service structures, collaboration between Part C EI and infant-early childhood mental health providers may be necessary. Last but not least, child welfare systems and providers must be linked to and work in collaboration with EI providers since infants and toddlers experiencing child abuse and neglect are at high risk for developmental delays. Federal law requires processes for referral to Part C for children with substantiated child abuse and neglect.
June 2022
10
III. Priority Recommendations At a Glance 1. Serving all children who can benefit from Part C EI through outreach, referral, enrollment ORE 1. Strengthen support for education, outreach, and participation ORE 2. Design a clear and effective pathway from maternal depression screening ORE 3. Improve linkages between pediatric primary care providers and EI ORE 4. Change the child abuse and neglect referrals process 2. Ensuring Part C EI services offer quality needed to make a difference Q1. Provide program funding to counties to support workforce quality Q2. Assure that all EI providers can plan and provide services together as a team Q3. Address inconsistencies and inequities in EI processes and performance at the county level Q4. Create an EI consultation role for child care programs Q5. Consistently use Informed Clinical Opinion Q6. Fully implement the coaching model 3. Achieving equitable access in Part C EI EQ 1. Increase outreach, referral, enrollment, and support for families of color and those who speak a language other than English EQ2. Partner with higher education to recruit and train individuals from historically underserved communities and immigrant communities to join the EI workforce EQ3. Introduce Early Intervention as a career opportunity to participating families, the child care workforce, and during high school
EQ4. Provide ongoing anti-
bias, cultural responsiveness, and equity workforce development EQ5. Increase county-level data by race/ethnicity 4. Addressing mental health needs of infants and toddlers in Part C EI MH1. Ensure social-emotional-mental-behavioral health (SEMBH) is integrated into EI evaluation and Family Service Plans MH2. Ensure county agencies responsible for Part C and MH/DD are creating a clear pathway to early childhood mental health services, whether through Part C EI or other mental health services MH3. Increase opportunities for service coordinators and EI providers to obtain the infant-early childhood mental health (IECMH) credential MH4. Include IECMH consultants as part of EI evaluation and service delivery 5. Partnering with Medicaid to improve Part C EI MA1. Study the adequacy of rates and take action to address identified problems, providing for routine rate review and adjustments MA2. Use Medicaid data to address variations in utilization and spending for EI services MA3. Leverage Medicaid MCO contracts and quality/performance initiatives to stimulate pediatric primary care developmental screening and referrals MA4. Leverage Medicaid MCO contracts and quality/performance initiatives to increase maternal depression screening and referrals MA5. Use increased federal funding for Medicaid
home and community-based services (HCBS) to enlarge support for infants and toddlers with disabilities
June 2022
11
IV. Priority Recommendations Our recommendations are found across five priority areas: 1. Serving all children who can benefit from Part C EI through outreach, referral, enrollment 2. Ensuring Part C EI services offer quality needed to make a difference 3. Achieving equitable access in Part C EI 4. Addressing mental health needs of infants and toddlers in Part C EI 5. Partnering with Medicaid to improve Part C EI Each of these five areas contains four to six priority actions that build upon strengths of the Part C EI and address areas for improvement. The recommendations for action to improve Pennsylvania’s Part C Early Intervention program build upon the many areas of strengths that put the program in a strong place to continue to develop. These strengths include the breadth of eligibility categories, and, as a result, Pennsylvania is among the top ten states in terms of the percentage of infants and toddlers enrolled in Part C. (See Figure 7.) With 4.8 percent of the population of infants and
practices, and leveraging all available financing. Our state has a long tradition of family engagement and leadership as a foundational element of Part C Early Intervention, including partnerships with families and support for children in their natural environment, whether that is their home or their child care program. Another strength is the implementation of an evidence-based coaching model for delivery of EI services, reflecting national prioritization of this approach. This action builds new skills and supports into a system already using standardized evaluation tools and other best practices in delivery of EI services. While not all states do so, Pennsylvania seeks to maximize available public resources by tapping various federal and state funding streams, including Medicaid, to finance the early intervention services to which children are entitled. 1 Serving all children who can benefit from Part C EI through outreach, referral, enrollment The Pennsylvania Part C EI program aims to meet federal requirements for outreach, referral, and enrollment, including the Child Find, multidisciplinary evaluation (MDE), and eligibility determination processes. The goal is to identify, evaluate, and enroll
toddlers receiving services at any time in Pennsylvania, the state performs well above the national average of 2.8 percent in recent years. Notably, Pennsylvania is the only large state in the top ten highly ranked performers by population enrolled in Part C, with more than 42,000 infants and toddlers receiving services annually.
Figure 7. Percentage of Infants and Toddlers Receiving Part C EI Services, Top Ten States, 2020
Other strengths relate to using partnerships, implementing best
Source: https://www.ideainfanttoddler.org/pdf/2020-Child-Count-Data-Charts.pdf
June 2022
12
the families of all eligible infants and toddlers with developmental disabilities and conditions likely to lead to developmental disabilities. Participants engaged in the program assessment discussed an array of challenges and opportunities on this topic. In particular, they emphasized the importance of having consistent and equitable processes. As a result of gaps in Part C EI outreach, referral and enrollment processes, some infants and toddlers who could benefit from services are not getting them. Providers and parents reported challenges for some families in navigating the process, particularly families with cultural and linguistic barriers who might benefit from more peer support. Participants also offered suggestions for improvement, particularly related to the connections from screening to referral to evaluation. Effective EI linkages to other systems such as early care and education, child welfare, and health are also important factors for outreach, referral, enrollment, and quality. Systems and process issues related to screening and referrals were identified for children in the child welfare system, those whose mothers are depressed, and those without a routine source of primary care (e.g. pediatrician or family practitioner). What does research say about this topic? Effective outreach, referral and enrollment: National data indicate that only a small fraction of infants and toddlers participate in Part C EI and that states’ eligibility, outreach, and enrollment processes have an impact on participation levels. Multiple studies of factors influencing family engagement in Part C EI have found that parents’ perceptions of their children’s development, practical barriers such as time off work or transportation, and the ease of connecting with program providers are key. Support for families in navigating and understanding the process from referral to further screening and assessment is critical. Without support through the Part C process, studies show between 20-35 percent of children referred do not receive an evaluation. These actions are particularly important for infants and toddlers who do not have a diagnosed condition
associated with developmental delays. (Decker et al., https://doi.org/10.1007/s10995-020-03067-2; Atkins et al., 2020 https://doi.org/10.1007/s10995- 019-02830-4; McManus et al., 2020 https://doi. org/10.1186/s12887-020-1965-x; Barger et al., 2019 10.1097/iyc.0000000000000151; Barger et al., 2018 https://doi.org/10.1177/0271121416678664; Hackworth et al., 2018 https://doi.org/10.1007/s11121- 018-0897-2; Twardzik et al., https://doi.org/10.1016/j. dhjo.2017.01.009; Barger et al., 2016 https://doi. org/10.1177/0271121416678664; Rosenberg et al., 2014 https://doi.org/10.1542/peds.2012-1662) Peer navigators and community outreach: Families, particularly those from culturally and linguistically diverse backgrounds, often face barriers in navigating Part C and the health care system without support, including a lack of understanding of the referral process. Family members with lived experience are increasingly being recruited and deployed to serve as peer navigators. Navigator roles typically include education, support, and assistance in accessing resources. Peer support has been shown to reduce stress and increase EI participation when infants have conditions that can cause developmental delays and disabilities. In addition, grandparents and other frontline community workers can provide support and facilitate connections for families. (Fratantoni et al., 2022 https://doi.org/10.1038/s41372-022- 01341-5; Pandy et al., 2019 https://doi.org/10.1080/ 08952841.2018.1444940; Reid et al., 2019 https://doi. org/10.11124/JBISRIR-2017-003958; Luke et al., 2018 https://doi.org/10.1093/pch/pxx176; Palfrey et al., 2019; Belcher et al., https://doi.org/10.1002/ddrr.137; Gooding et al., 2011 https://doi.org/10.1053/j. semperi.2010.10.004; Jimenez et al., 2011 https://doi. org/10.1016/j.acap.2012.08.006; Silow-Carroll, 2009) Maternal depression screening: Maternal depression can have serious consequences for both mother and child. Maternal depression affects parenting and is associated with social-emotional behavior problems, developmental delays, impaired cognitive development, and language skills among the
June 2022
13
IV. Priority Recommendations (continued)
depressed mothers’ infants and children. Nearly 50 percent of mothers of subpopulations of children with conditions that can lead to developmental delay (e.g., preterm birth, autism spectrum disorders, and cerebral palsy) experience depression. While high prevalence is alarming, effective treatment for maternal depression, including parent-child dyadic treatment to improve child development, is well established. Professional organizations and governmental guidelines, including the American Academy of Pediatrics, recommend postpartum depression screening for all mothers during the first year of a child’s life as part of the child’s regular check-ups. Clear, effective screening and referral processes related to a positive maternal depression screening are critical to minimizing its impact. Because the risk of developmental issues for infants and toddlers is high when mothers are depressed, referrals to Part C for assessment of developmental status are warranted. (Harmon et al.,2019 https://doi.org/10.1007/s10802- 020-00740-6; Slomian et al., 2019 https://doi. org/10.1177/1745506519844044; Meany, 2018 https:// doi.org/10.1176/appi.ajp.2018.17091031; Trussell et al., 2018 https://doi.org/10.1177/0009922818769450; Feinberg et al., 2012 https://doi.org/10.1007/s10995- 010-0715-3; Ertel et al., 2011 https;//doi.org/10.1089/ jwh.2010.2657; Knitzer et al. 2008) Linkages with pediatric primary care/medical home: Primary health care providers are among the most frequent source of referrals for Part C EI program services because of the more frequent check-ups, called well-child visits, that occur in the first two years of a child’s life. The effectiveness and number of referrals to Part C EI for those beyond the newborn period depends heavily on the practices of pediatric primary care providers (including pediatricians, family physicians, and others). The American Academy of Pediatrics and other expert bodies recommend developmental screening and surveillance for infants and toddlers at specified intervals and a response to screen results that warrant further action. National surveys of pediatric
primary care providers report an expectation to be informed about the results of the referral and ongoing EI services for their patients, in effect to have timely and ongoing flow of information between the medical home and the Part C program. (Sanders et al., 2021 https://doi.org/10.1097/ DBP.0000000000001004; US Department of Education, 2011; Adams et al., 2013 https://doi. org/10.1542/peds.2013-2305; Ross et al., 2018 https://doi.org/10.1007/s10995-018-2540-z; Jimenez et al., 2014 https://doi.org/10.1016/j.acap.2014.01.007) Referrals from Child Welfare to Part C EI: Since 2003, federal law has required states to have policies and procedures in place for the referral to Part C EI of all children younger than 3 with substantiated cases of abuse or neglect. (42 USC Section 5106(a)) States have the discretion as to whether to refer every such infant and toddler for early intervention services, or to first employ a screening process to determine whether a referral is needed. The available data suggest that only a small proportion of these vulnerable infants and toddlers are connected to and ultimately enrolled in the Part C EI system. Lack of familiarity with or training for conducting screening among child welfare agency personnel are a barrier to screening and linkage with Part C EI. Studies of states’ implementation show that this requires increased EI system capacity, strong interagency linkages, and strategies to engage families entering the child welfare system. The effectiveness of screening and evaluation processes makes a difference. (Shannon, 2020 https://doi.org/10.1080/ 15548732.2020.1727395; Administration for Children and Families, Children’s Bureau, 2019; Administration for Children and Families, CAPTA 2018; Casanueva et al., 2008 https://doi.org/10.1177/1077559508318397; Derrington & Lippitt, 2008 https://doi. org/10.1177/0271121408320350; Mott & Dunst, 2006 https://doi.org/10.1177/105381510602900102; Robinson & Rosenberg, 2004 https://doi. org/10.1177/105381510402600404)
June 2022
14
IV. Priority Recommendations (continued)
Issues and Solutions related to Outreach, Referral, and Evaluation (ORE) Please note that the first recommendation found in priority 3, achieving equitable access in Part C EI, is relevant to the overall recommendations in this section. The recommendation is to increase outreach, referral, enrollment, and support for families of color and those who speak a language other than English; additional information is found in the equity section.
ORE 1. Strengthen support for education, outreach, and participation
Gaps in the Part C EI processes for outreach, referral and enrollment result in infants and toddlers not getting the services from which they could benefit. Providers and parents reported challenges for some families in navigating the process. Strengthen support for education, outreach, and participation of families in EI through a) introduction of EI navigators and family ambassadors to support education, outreach and participation, and b) education and outreach with home visiting, community health, grandparents, frontline workers addressing homelessness, those working with immigrant and refugee families, to build awareness of the benefits of EI and facilitate linkages to EI.
Issue
Solution
Administrative Additional funding may be needed for new initiatives
Type
ORE 2. Design a clear and effective pathway from maternal depression screening
Children with depressed mothers are at higher risk for developmental delays. Gaps in processes lead to missed opportunities for treatment and early intervention. Design a clear and effective pathway from maternal depression screening to EI referral and services for the child, including education for EI professionals and support and referrals for the birthing parent to be connected to services.
Issue
Solution
Administrative and legislative Additional funding may be needed for implementation
Type
ORE 3. Improve linkages between pediatric primary care providers and EI
Pediatric primary care providers are not consistently informed about results of their referrals to Part C EI or what is included in Individualized Family Service Plans among those infants and toddlers found eligible. Improve the linkages between pediatric primary care providers and the Part C EI system (e.g., close the referral loop so that pediatric primary care providers know what happened after referral; share information about the child’s IFSP; build knowledge of pediatric associations, MCOs and others about understanding of EI and how it works, encourage pediatric providers to participate in local interagency coordinating councils).
Issue
Solution
Administrative Minimal additional funding needed
Type
June 2022
15
IV. Priority Recommendations (continued)
ORE 4. Change the child abuse and neglect referral process
Infants and toddlers with substantiated cases of child abuse and neglect are not always getting effective screening, referrals to Part C EI, and/or multi-disciplinary evaluation (MDE), despite risks to them. Change the child abuse and neglect referral process. Currently, requirement to do developmental screening for all infants and toddlers with substantiated cases of child abuse and neglect may be by referral to Part C, done by child welfare, or otherwise. Instead, require county children and youth agencies to refer all infants and toddlers with substantiated cases of child abuse and neglect for screening and MDE, including all domains of development. Those not found eligible based on MDE would move to the at-risk tracking group in Pennsylvania.
Issue
Solution
Administrative and legislative Changes may be required in policy and funding
Type
2 Ensuring Part C EI services Assuring quality for Part C EI programs begins with the foundation of a quality framework and system design already employed in Pennsylvania. Such foundational features include broad eligibility criteria, clear regulations, support for workforce development, consistent implementation, and adequate financing. Participants in this review process mainly discussed the importance of offer quality needed to make a difference (Q)
workforce training and sustainability, particularly as the state implements the evidence-based coaching model, which requires all EI providers and service coordinators to learn new ways of working with families. In addition, Part C EI providers are not compensated for the professional development time that is essential to quality service delivery. Since many EI professionals work as contractors to local agencies, ensuring adequate support for professional development, while essential, is more complex. The ability of multiple EI providers in the team to deliver services together, at one time with the family, was also raised as a key concern. Many infants and toddlers in Part C EI also spend time in early care and education settings. Both EI and child care providers discussed the challenge of cross-system collaboration to maximize the effectiveness of the services they deliver to infants and toddlers. While Part C EI services are being delivered in child care and other early education settings, detailed roles/responsibilities and support structures would lead to more effective partnerships. The Part C EI program is grounded in communities, with counties playing a critical role in its administration. Yet review participants identified challenges stemming from significant inconsistencies
June 2022
16
IV. Priority Recommendations (continued)
in processes between counties that contribute to inequitable access for families depending on where they live. Consistency and quality in the eligibility determination process, which includes the multidisciplinary evaluation of a child’s developmental and health status, was a particular topic of interest. Parents, providers, and service coordinators all emphasized the importance of having equitable and consistent methods across all areas of the state. In particular, providers and families reported that use of Informed Clinical Opinion in the process was not consistently available across counties in Pennsylvania. What does research say about this topic? Quality workforce for EI: Quality in EI services depends to a large extent on the availability of and access to well-trained providers, as well as having sufficient hours of service, make a difference in short- and long-term outcomes. For most participating families, services are delivered by multiple EI professionals and guided by a service coordinator. The effectiveness of services depends
on a coordinated approach and a partnership with families. (US Department of Education, 2021; Guralnick & Bruder, 2019; Kasprzak et al., 2019 https://doi.org/10.1177/0271121419831766; Woodman et al., 2018 https://doi.org/10.1016/j. ecresq.2018.01.007; Dunst, 2015 https://doi. org/10.1097/IYC.0000000000000042; McManus et al., 2014 https://doi.org/10.1007/s10995-013-1332-8; Early Childhood Technical Assistance Center Part C of IDEA) Service Teams in Part C: Federal law assumes an IFSP team for each child/family served and Part C guidance promotes multi-disciplinary collaboration. The IFSP team meets initially and annually to develop an appropriate plan for services to be delivered under Part C EI. This team includes: the service coordinator, those who conducted evaluations and assessments, those who will provide the EI services to this child, and the parents (and other family members or advocates if requested by parents). (IDEA Part C Section 303.343) In addition to the initial and annual meetings, the quality of Part
June 2022
17
IV. Priority Recommendations (continued)
C EI services can be improved when the service coordinator, providers, and family meet periodically throughout the year to coordinate delivery of services identified on the IFSP. (Bricker et al., 2020 https:// doi.org/10.1177/0271121419890683; Coufal & Woods, 2018 https://doi.org/10.1016/j.pcl.2017.08.027; Hunt et al., 2004 https://doi.org/10.1177/027112140402400 30101) Child care as a service setting: Many infants and toddlers spend a portion of their day in child care programs, and children in Part C EI have a right to appropriate services in these natural environments. At the same time, studies suggest that EI and child care providers have challenges in communication and alignment of approaches. Even adapting the physical location of services (e.g., in a separate room, in a busy classroom) may be challenging. Having more structured support for child care settings can help to bridge gaps and improve services for children. Development of cross-sector supports, technical assistance, and professional development is recommended in federal guidance. (Chödrön et al., 2021 https://doi.org/10.1007/s10995-020- 03097-w; Sheppard & Moran, 2021 https://doi. org/10.1007/s10643-021-01225-x; Weglarz-Ward et al., 2019 https://doi.org/10.1177/1053815119886110; Weglarz-Ward & Santos, 2018 https://journals.lww. com/iycjournal/Abstract/2018/04000/Parent_ and_Professional_Perceptions_of_Inclusion.4.aspx; US Department of Health and Human Services and Department of Education, 2015) Informed Clinical Opinion: The term Informed Clinical Opinion appears in the regulatory requirements for implementation of Part C EI and the state must ensure that it may be used as an independent basis to establish a child’s eligibility. (IDEA. Section 303.321(a)(3)(ii)) Informed Clinical Opinion is used by EI professionals in the evaluation process, making use of information on aspects of development that are more difficult to measure. In other words, when a standardized test or measurement tool won’t be effective in measuring
a child’s condition, professionals can observe and assess developmental delays. Documentation of Informed Clinical Opinion is part of the process. (ECTA Center, 2012; Shackelford, 2002) Coaching: EI programs recognize the importance of engaging parents in their child’s development. Coaching is an evidence-based strategy that can be used by early interventionists to engage families as decision makers and participants in their children’s intervention. Research evidence strongly supports “coaching” parents on how to integrate therapies into routines and daily activities, rather than relying only on an hour or two per week of intervention with an EI professional. Studies also suggest that coaching can empower families and can be effective with culturally and linguistically diverse families. To get optimal outcomes for children and families, however, EI providers need additional training and supervision as they implement coaching methods. (Pellecchia et al., 2020; https://pilotfeasibilitystudies. biomedcentral.com/articles/10.1186/s40814-020- 00568-3; Romano & Schnurr, 2020 https://doi. org/10.1177/0271121419899163; Ward et al., 2019 https://doi.org/10.1080/09638288.2019.1581846 ; Steward & Applequist, 2019 https://doi.org/10.10 80/02568543.2019.1577777; Kemp & Tunbull, 2014 https://doi.org/10.1097/IYC.0000000000000018; Rush et al., 2003 https://doi.org/10.1097/00001163- 200301000-00005)
June 2022
18
IV. Priority Recommendations (continued)
Issues and Solutions related to Quality (Q) We note that there are four recommendations found in priority 3, achieving equitable access in Part C EI, that are equally relevant to the overall recommendations in this section. These recommendations follow; additional details are found in the Equity section.
EQ2. Partner with higher education to recruit and train individuals from historically underserved communities and immigrant communities to join the EI workforce EQ3. Introduce Early Intervention as a career opportunity to participating families, the child care workforce, and during high school EQ4. Provide ongoing anti-bias, cultural responsiveness, and equity workforce development EQ5. Increase county-level data by race/ethnicity
Q1. Provide program funding to counties to support workforce quality
The professionals who provide Part C EI services to families are not compensated for the professional development time that is essential to quality service delivery; funding is not available for induction and mentorship of EI professionals who are new to Part C service delivery. Many EI professionals work as contractors, which exacerbates the issue. Dedicating program funding to counties specifically for quality workforce professional development will help address this issue. Provide program funding to counties, over and above fee-for-service billing, to pay for the time of EI providers to participate in professional development, provide funds to providers to support quality of contractors, and implement statewide induction/mentorship for all new EI providers.
Issue
Solution
Legislative Additional financial resources required
Type
Q2. Assure that all EI providers can plan and provide services together as a team
Children and their families may be best served when the EI professionals can provide services at the same time. Likewise, periodic team meetings are needed that bring together all the EI professionals, the service coordinator, and the family. However, teaming in service delivery and regular team meetings are not routinely part of EI. Assure that all EI providers can plan and provide services together as a team, at one time, for a child/family, when appropriate. At a minimum, provide program funding for periodic team meetings that include providers, service coordinator, and family. Adopt a clear mechanism that has allowable billable hours for the EI provider team to meet together to case conference with the family.
Issue
Solution
Administrative and legislative Additional financial resources required
Type
June 2022
19
Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26 Page 27 Page 28 Page 29 Page 30 Page 31 Page 32Made with FlippingBook. PDF to flipbook with ease