In Your Neighborhood

New issue brief on children’s disabilities stresses importance of early intervention

Policy makers now confront need to translate facts into a plan of action

Courtesy of Rhode Island KIDS COUNT

A new issue brief, "Young Children with Developmental Delays and Disabilities, was released on Nov. 15 by Rhode Island KIDS COUNT.


David Abbott, left, from the R.I. Department of Education, Dr. Michael Fine, director of the R.I. Department of Health, and Janice DeFrances of the R.I. Department of Children, Youth and FAmilies offer their suggestions in response to the new issue brief at Habro Chidl;ren's HOspit

By Richard Asinof
Posted 11/18/13
Early identification and screening of childhood developmental delays and disabilities are the first step in intervention. Creating a fact-based database to track these significant issues – in terms of health outcomes, educational achievement and medical costs – offers a way to develop a more holistic approach. The suggestion to involve parents in regular screening, based on successful practices in Israel, has promise. So does the need to map and address the risk factors, such as the density of poverty.

The improved data collection to screen and identify and treat childhood disabilities raises a larger question: How can that data be integrated at the point of care in the delivery of medical services? And, what will it take for a coordinated plan of action to address the persistent environmental causes, such as lead in young children?
As our health system moves toward population health management analytics, the capability to create a warehouse of data as well as the capability to mine that data becomes a critical tool for improving community health. More than the state, this kind of data needs to be accessed at the community level, with patient and community engagement. Further, the teams in patient-centered medical homes need to be trained in how to manage the data and apply the results, if we want the health of the community to be a public good, not a private commodity.

PROVIDENCE – Rhode Island KIDS COUNT unveiled its latest issue brief on Nov. 15, “Young Children with Developmental Delays & Disabilities, with a series of 13 recommendations that stressed the importance of early intervention and increased access to improve health outcomes for kids in Rhode Island.

The fact-based issue brief, developed with the support of CVS Caremark, presented the most recent data available in tracking how Rhode Island children were screened and identified for early intervention services, along with eligibility and participation in preschool special education services.

“The issue brief highlights the need for a timely, coordinated system of care for our children with developmental delays and disabilities and those that are at high-risk for developmental problems,” said Elizabeth Burke Bryant, executive director of Rhode Island KIDS COUNT.

While Rhode Island has made progress in identifying and serving these children and families in high-quality programs, Bryant continued, “We can do better to make sure that coverage and services are available for all who need them, that they are coordinated, and that transitions between programs are smooth for children with disabilities and their families.”

Equally impressive as the new issue brief was the policy roundtable that followed, featuring observations by Dr. Michael Fine, director of the R.I. Department of Health, Janice DeFrances, director of the R.I. Department of Children, Youth and Families, David Abbott, deputy commissioner of the R.I. Department of Education, Dr. Yvette Yatchmink, Hasbro Children’s Hospital, and Deborah Florio, administrator of the Center for Child and Family Health for the R.I. Executive Office of Health and Human Services.

In addition, Dr. Timothy J. Babineau, president and CEO of Lifespan, spoke briefly, introducing the event, as did Eileen Howard Boone, senior vice president of Corporate Philanthropy and Social Responsibility at CVS Caremark.

Yatchmink stressed the importance of data. “Our early intervention system is ahead of the game,” she said. So, too, she continued, is children’s access to health insurance, which Yatchmink called “a success compared to other states,: with 94 percent of all children insured. In terms of improving the scope of the issue brief, Yatchmink said that there was a need “to have a better idea of what’s going on in the community.

Fine, who had just returned from a state economic development mission to Israel, praised the fact that 56 percent of Rhode Island children ages three to five received a developmental screening, and that nationally, 48 percent of pediatricians reported using at least one standardized screening tool at well visits.

“The goal should be to have 100 percent of all Rhode Island children screened at age appropriate intervals,” Fine said. He cited the involvement of parents in Israel in the practice of home screening, “Parents complete screenings at home,” he said, something that Rhode Island should consider adopting.

DeFrances pointed to the fact that infants and toddlers who had been maltreated are six times more likely to have a development delay. “There is a need to look at mental health care and the social and emotional health of parents,” she said, decrying the cuts to Head Start enrollment in Rhode Island. “Very young parents have a hard time coping with the stress of caring for children,” she continued. “There is a need to increase home-based services.”

Abbott said that the issue is not just poverty, but the density of the poverty that multiplies the risk factors. The ability to create a map that showed the distribution of developmental delays and disabilities would be very helpful, Abbott said.

When asked by ConvergenceRI about the environmental threats such as elevated levels of lead, which are a leading cause of learning disabilities requiring special education services and whether there was a plan of action to address such root causes, no one in the assembled group seemed to have a ready answer. Bryant said that Rhode Island KIDS COUNT tracked the data as one of the important determinants in its yearly Fact Book.

After the meeting, however, a number of pediatricians and agency officials came up and thanked ConvergenceRI for asking the question that pointed to the need to move beyond compiling data.

How the services are financed
Under Rhode Island law, health insurers must cover up to $5,000 of Early Intervention services for each participating child per year. The state covers costs that exceed the maximum and all costs for families that do not have insurance. Of the 3,967 children enrolled in Early Intervention in 2012, 56 percent had Medicaid health coverage, 40 percent had private insurance, and 4 percent were uninsured. In Rhode Island in FY2013, the average cost per child for Early Intervention services was about $3,500 per year.

In an effort to broaden the conversation and make it more inclusive and transparent – and not just the purview of policy wonks, here are the recommendations made as a result of the new issue brief:
• Continue to ensure access for all children to affordable, comprehensive health coverage. Preserve current Medicaid benefits and use Essential Health Benefit provisions in the Affordable Care Act to ensure parity of benefits in commercial insurance.
• Ensure all families with young children have regular opportunities to receive recommended health, developmental, and autism screenings through their medical home, school district’s Child Outreach program, early learning program, and/or home visiting program.
• Use the EPSDT provision to ensure all low-income children insured through Medicaid receive recommended developmental and autism screenings and necessary treatment.
• Develop supports and incentives for health care providers, school districts, and early learning programs to use the new functionality in the KIDSNET database to help locate children for developmental screenings and to coordinate and share developmental screening data. KIDSNET developmental screening data should be used to develop and target outreach, trainings and supports to health care providers, school districts, and early childhood programs so fewer young children fall through the cracks and miss developmental screenings.
• Improve information and referral networks to ensure that children who screen positive for potential developmental problems are referred for comprehensive evaluation and services.
• Ensure that all children with developmental delays and disabilities have a high-quality medical home that can help them navigate complex health and education systems in order to obtain needed services.
• Make sure that children with multiple risk factors for developmental delays can continue to qualify for Early Intervention services in Rhode Island. Expand Rhode Island’s definition of eligibility for Early Intervention to specifically include at-risk infants and toddlers. Although Rhode Island has a history of serving children with risk factors for poor outcomes under the “multiple established conditions” eligibility category, the state does not currently include “at-risk” children in the official definition. Research clearly shows that children with multiple risk factors are the most vulnerable to poor health and development.
• Address remaining barriers to fully implement the federal mandate requiring states to refer all children under age three with substantiated cases of child maltreatment to Early Intervention. Infants and toddlers who have been maltreated are six times more likely to have a developmental delay.
• Address geographic inequities in access to preschool special education, particularly in the core cities where poverty is concentrated, by improving the transition process from Early Intervention, reviewing the referral and eligibility determination process for each district, and using data to drive improvement in access.
• Expand access to inclusive early care and education settings for young children with developmental delays, disabilities and behavior challenges. Enhance supports available to community-based early care and education programs including support to provide a high-quality general education program, on-site mental health consultation, and help improving facilities to better accommodate children with disabilities.
• Use the state education funding formula, Title I resources, and Head Start and other community partnerships to expand access to high-quality inclusive preschool, particularly in the core cities.
• Identify ways the Kids Connect program can ensure that low-income children with moderate to severe special needs are enrolled in high-quality early care and education programs and that supportive services are effective.
• Expand professional development for the Early Intervention and preschool special education workforce. Additional resources are needed to help early childhood professionals better identify and respond to ASDs, social-emotional and mental health problems in young children, strengthening parent-child relationships and addressing toxic stress factors of poverty, substance abuse, domestic violence, maternal depression, and child maltreatment.

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