Children’s Movement of Florida 2011 Legislative Agenda: Special Needs Screening

Developmental Screening, Diagnosis and Treatment for Children with Special Needs

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Many children have special needs, temporarily or throughout their lives. Others at risk can avoid permanent disability if helped early. Information and support – online, by phone and in the community – can help parents guide children through these challenges and find peace of mind. Unfortunately, many parents who notice something might be wrong with their child do not know how or where to find help. If we put knowledge at parents’ fingertips, they can assess their children and obtain helpful information if there’s reason to be concerned:

Provide on-line screening and referral tools for families: Through statewide campaign (above), provide screening tools for parents and referral resources via on-line, telephone and community portals: $5 million.

• The Parent Portal to Healthy Child Development on-line would be accessed using secure portal technology 24 hours a day. Most developmental screening tests are parent questionnaires, yet available only through certain providers. Through the innovation of the Parent Portals, these screens would be directly accessible by parents; a summary results statement would then be provided to the parent, with the recommendation for follow-up with the physician. If parental consent is provided, the results also could be sent directly to the physician. Parent Portal to Healthy Child Development on-line would electronically integrate with other child health sites, such as the Florida vaccine registry, KidCare and other eligibility determination sites. A logged-in parent would be alerted if his or her child has a vaccine due. If the parent did not indicate current health insurance or health care provider information, the parent would be invited to see if her child is eligible for subsidized insurance and could be linked to a listing of health care providers near her home.
• The same capabilities could be provided through a centralized phone line, the Parent Portal to Healthy Child Development by phone. Healthy child development service coordinators would be trained to respond to parent and provider questions and concerns in three languages and to help them in the screening process. For parents who want a paper screening form they can mail in, that also would be possible. Support would be provided in at least English and Spanish.
• The Parent Portal to Healthy Child Development in the community would build on the expertise and infrastructure of those in the community already working with families, including Head Start, child care providers, schools, Early Learning Coalitions, Early Intervention staff, health care providers and others. A continuous awareness campaign would keep these trusted community partners informed of the parent and provider resources available through the Parent Portals to Healthy Child Development. They would be provided with their own secure portal password entry so they could help parents who may be less skilled in technology, low literacy, or otherwise prefer the human touch to access information and screening. Community providers would help assure that listed Portal resources are accurate and up-to-date.

These portals will build from the successful work of Help Me Grow, a model implemented in Connecticut, Orange County and a growing number of states and communities around the nation.

Expand Early Steps to ensure thousands of infants and toddlers identified with developmental delays or disabilities have access to research-based interventions so they can develop to their full potential: Early Steps provides early identification and intervention services for Florida's youngest children (birth to 36 months) with established developmental delays or disabilities: $20.5 million.

Children's development happens faster and more permanently during the first three years of life than at any other time of their lives. Identification and treatment of special needs during these crucial early years both critically important for children's long term development and highly cost-effective; delays identified in the early years have the best chance of remediation. Numerous studies prove that early intervention increases the developmental and educational gains for the child, improves the functioning of the family, and reaps long-term benefits for society. Multiple longitudinal studies show the wisdom of early intervention services. Studies have shown between $4 and $7 return within 36 months on every $1 invested from early intervention services; these savings come from reduced need for ongoing intensive services and grade retention, and significantly greater returns long-term.

Early Steps provides early intervention services by a team of professionals, primarily through home visits, that empower families to support the development of their children during everyday activities and routines. Support for families is a central component of Early Steps to ensure families have the knowledge and support they need to meet their children's unique development and learning needs. Services are provided to the family and child in natural settings (in the home, at child care programs, etc.), to enable the family to implement developmentally appropriate learning opportunities during everyday activities and routines.

Currently, Florida's Early Steps program enrolls 44,185 infants and toddlers. The federal government invests $22.4 million annually in this program; Florida invests an additional $23.5 million to provide these critical early intervention services, the vast majority of which is federally required Maintenance of Effort. Florida must sustain its funding and increase investment in Early Steps to ensure the state's most vulnerable infants and toddlers and their families receive the supports they need to develop to their full potential.

Conduct an inventory of currently available treatment programs for children with special needs and develop statewide implementation plan to ensure timely screening, diagnosis and treatment for them: $500,000.

Florida has significant gaps related to screening, diagnosis, and treatment of special needs. Services vary widely throughout the state and families do not have access to sufficient services anywhere in Florida. A workgroup should be appointed and staffed to develop a detailed, comprehensive plan on where there are needs and how these needs should be addressed in the short and long term (e.g., an insufficient number of qualified specialists to diagnose or treat special needs will require a multi-prong, long term strategy, while other issues will be easier to address).

As a starting point, this entity will begin with the following vision. Upon refining this vision, the entity will develop a plan to make this vision a reality within 10 years, with annual goals and fiscal projections, to better screen, diagnose and treat children with special needs:

• Guarantee no more than a 60-day wait for developmental assessments designed to identify special needs: Currently, families can wait for up to nine months to get a developmental assessment to identify special needs. If children are over 34 ½ months, this wait can exceed a year because Early Steps (Part C, IDEA) does not have to evaluate them if they are less than 45 days before their third birthday and Florida Diagnostic and Learning Resources System (FDLRS; Part B, IDEA) has a long waiting list for evaluations once they receive the initial referral paperwork. This delay in identification can profoundly impact children’s development as needs go undetected and untreated, resulting in slowed developmental gains and increased future costs to the school and other public systems. No family in Florida should wait more than 60 days (from the first day of referral) for a developmental assessment designed to identify special needs. Early Steps and FDLRS should be appropriately expanded through partnerships with existing organizations or through adding additional staff to offer these assessment services in a responsive, reliable and valid way. The availability of these assessment services should be widely publicized through child care programs, schools, family support programs, pediatrician/family practice offices, and other organizations that serve young children and their families.
• Provide developmental assessments in a natural environment by trained specialists: Not only do families in Florida wait for untimely evaluations, but the evaluations are often not helpful for informing decisions about needed supports or instruction. The model most FDLRS use to conduct “diagnostic” assessments is outdated, inefficient, and very expensive. Developmental assessments should be conducted by an appropriate and trained team, including the family (when family desires to be involved) and in authentic settings, such as a child’s home or a child care program. The instruments used should include observation, feedback from the child’s family and teacher (if applicable) in their preferred language, and reliable and valid administration of developmentally appropriate instruments designed to identify special needs completed by a trained specialist.
• Provide immediate referral and follow up with services: The manner in which identified special needs are followed up on varies widely throughout the state, and far too often is not responsive to family needs. When a special need is identified, Early Steps or the Prekindergarten Program for Children with Disabilities would work closely with the family and community resources to find the most appropriate, least restrictive environment for a child to receive appropriate intervention services. The plan would be developed and services would start to be provided within 45 days, with multiple opportunities for families to meet with the appropriate specialists to inform the plan. The appropriate specialists would work with the family to establish priority goals for the child and family, determine which services and supports are likely to help the child and family achieve priority goals, and use formative or progress-monitoring data to help inform decisions about whether services and supports need to be increased or decreased over time. The Individual Family Services Plan (IFSP) (for children in Early Steps) would be meaningfully revisited on a bi-annual basis and the Individual Educational Plan (IEP) (for children in the Prekindergarten Program for Children with Disabilities) would be updated on an annual basis and both will use data on the child’s progress to inform decision making about increasing or decreasing services and supports.
• Increase the number of specialists trained to provide services to children with special needs: There are not enough specialists trained to provide early intervention services for young children in Florida. The number of all specialists (including speech and language pathologists, occupational and physical therapists, play therapists, early childhood special education specialists, and early childhood behavioral specialists) needs to be increased. Some strategies to accomplish the increase in professionals available to serve Florida’s children are: 1) expand degree programs at Florida colleges and universities to include specific training on working in early intervention, rather than generalist degree programs, 2) provide targeted scholarship funding to those interested in this field and willing to serve young children in early intervention settings in Florida for 5 years, 3) expand access to specialized training on providing early intervention services to young children, 4) provide incentives to retain teachers and specialists to serve young children with special needs, 5) hire additional specialists through Early Steps and the Prekindergarten Program for Children with Disabilities to provide children with integrated services offered in and designed to support children’s full participation in community-based, natural environments that meet their family’s needs (full-day, full year, etc.), 6) increase the number of Part C Liaisons to assist with the transition of children participating in Early Steps into the Prekindergarten Program for Children with Disabilities, 7) encourage public schools to maintain highly trained teachers in the classrooms for pre-k rather than moving them out to upper grades where they feel they can have more of an impact on their FCAT scores, and 8) reinstate developmental specialists in neonatal wards to ensure children who have special needs at birth are appropriately identified and families and provided with support to address their needs.
• Create a unified, coordinated system of funding early childhood systems to better serve children with special needs: Multiple funding sources are available to serve young children with special needs (e.g, Early Steps, Part C, IDEA, Part B, Head Start), but are often confusing and difficult to access. Florida must make the policy and procedural changes needed to create a unified eligibility application so families can maximize available funding with a single application, provide guidance to programs on better coordinating this existing funding to better serve young children and their families, and provide a single accountability system for multiple funding sources to ease reporting requirements on early childhood programs and school-based services.
• Expand access to inclusive early learning programs: Research clearly shows that the optimal environment for most children with special needs is one with typically developing children. However, most child care programs do not have the training, funding or expertise to serve children with special needs appropriately. Building from the LEAP model in Colorado, which serves children with special needs in early care and education settings, slots would be reserved in child care programs that wish to serve children with special needs and inclusive early learning programs would be provided at no cost to the family. These child care programs must have staff trained to provide services to children with special needs (see recommendation below), work closely with the specialists from Early Steps or the Prekindergarten Program for Children with Disabilities (e.g., early childhood special education teachers, speech/language therapists, occupational therapists, physical therapists) that would come into the program as needed to provide services to the child or family, and actively participate in the development of the Individual Family Service Plan (IFSP) or Individual Education Plan (IEP). Participating child care programs would automatically receive child care subsidies for children with identified special needs at a rate of 30% above the standard child care subsidy rate and VPK funding for children who are 4 years old by September 1 of the current school year.
• Provide specialized training to early childhood professionals to serve children with special needs: The majority of children with special needs can be served well in a community-based child care setting with trained personnel. However, Florida does not have consistent training or certification of personnel to fulfill these roles. Florida would create a three-tiered system for training professionals to work with community-based child care settings to better serve children with special needs. This would include:
  • A 45-clock-hour training (3 credit hours if college credits sought) would be available to early childhood professionals who wish to receive a basic certification to serve children with special needs, including an overview of recommended practices in early intervention and making accommodations and adaptations to support full participation for young children with special needs in inclusive early learning settings.
  • A 135-hour-clock hour training (9 credit hours if college credits sought) would be available to early childhood professionals who wish to obtain an intermediate certification to serve children with special needs.
  • A 225-clock-hour training (15 credit hours if college credits sought) would be available to early childhood professionals who seek an advanced certification to serve children with special needs.
  • Directors also must complete a nine credit hour specialized college credit course on serving children with special needs and their families.
  • Early childhood programs with these trained specialists would be identified by the local Early Learning Coalition. An updated list would be provided quarterly to the local Early Steps and Prekindergarten Program for Children with Disabilities providers and the child care resource and referral provider to help connect families with qualified early childhood programs to best serve their child and family’s needs.

These training and education opportunities would be jointly developed within 18 months by appropriate leaders within the state’s college and university system and experts in the field of serving children with special needs and their families to ensure consistent content and delivery statewide.

The model should build from best practices in other states, such as the certificate programs jointly developed by the Louisiana State University Health Sciences Center, the University of New Orleans, and Delgado Community College in Louisiana. All training certificates would be available in English and Spanish and offered statewide through community colleges and universities. Scholarship funding would be available through expanded TEACH funding for early childhood professionals to complete these classes.

• Transitions and Data Systems The transition from Part C/Early Steps to Part B/Prekindergarten Program for Children with Disabilities 90 days prior to when the children turn 3 is uneven across counties. Upon entering Early Steps, all children should be assigned the unique identifier used by the school district, and information on the services the child or family receives should be documented within a shared data system. Shared data systems help ensure a seamless transfer of information on children and families when the move from Early Steps to the Prekindergarten Program for Children with Disabilities, meetings among appropriate specialists and the family can be scheduled no later than children’s age of 2 years and 9 months to prepare for the transition, a clear plan for transitioning to the Prekindergarten Program for Children with Disabilities services can be developed, and continuity of service providers can occur when possible.