Individuals with Disabilities Education Act: Education Should Provide Additional Guidance to Help States Smoothly Transition Children to Preschool
Published: 2005-12-14T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: Part C of the Individuals with Disabilities Education Act (IDEA) was established to ensure that infants and toddlers with disabilities, from birth to age 3, and their families receive appropriate early intervention services. Within the Department of Education (Education), the Office of Special Education Programs (OSEP) is responsible for awarding and monitoring grants to states for Part C according to IDEA requirements. To address questions about how states have implemented IDEA Part C, this report provides information on (1) how Part C programs differ in their eligibility criteria and whom they serve, (2) to what extent states differ in their provision of services and funding, and (3) how Education and state lead agencies help support and oversee efforts to implement Part C, such as identifying children for services and transitioning children to follow-on programs, such as IDEA Part B.
section_title: What GAO Found
paragraphs: Eligibility criteria for Part C services for infants and toddlers with disabilities differ from state to state, but do not consistently explain the percentage of children served, which ranges between 1.3 and 7.1 percent. To determine eligibility, most states measure how much the child is delayed in one or more areas of early childhood development, while a few rely exclusively on a clinical team's judgment. Although IDEA Part C is intended to cover children from birth to age 3, most states provide the majority of their Part C services to children 2 to 3 years old. States have public awareness campaigns to identify more eligible infants and toddlers but cite a number of obstacles, including difficulty reaching children in rural areas or in families where English is a second language. The states we visited provide a similar set of services but vary in funding sources. States are required to make available certain early intervention services under IDEA, such as occupational, physical, and speech therapy. However, states report challenges recruiting and retaining professionals, such as speech language pathologists, to provide these services. States rely on various funding sources, but state general revenue funds were generally the largest source of early intervention funding. OSEP and state lead agencies have provided training and technical assistance and used data to monitor implementation of IDEA Part C, but OSEP has lacked some information from local officials needed to determine if children are smoothly transitioning from Part C to Part B. OSEP uses annual reports and performance indicators as part of its effort to monitor compliance with Part C and target technical assistance. For example, data on the percentage of children served help inform OSEP of states' efforts to identify all eligible children. States use similar approaches. Despite these activities, state officials cited challenges transitioning children to Part B services when they turn 3 years old. Education indicated that in preliminary and unpublished data from an ongoing study it had found that gaps occur throughout the year. Officials in the states we visited reported that some children who turn 3 during the summer experience gaps in service. If Part B eligibility is not determined prior to children turning 3 during the summer, then subsequent decisions about whether children should receive extended school year services cannot be made.

section_title: Letter
paragraphs: The first few years of a child’s life are critical to development. While most  children attain developmental milestones as expected, some children  develop more slowly or develop differently because of physical, mental, or  environmental factors. Research suggests that for an infant or toddler who  exhibits developmental delay, has a diagnosed condition that has a high  probability of resulting in developmental delay, or is substantially at risk  of having a developmental delay early intervention services, such as family  counseling and physical therapy, can have a significant impact on early  childhood development. To assist states in ensuring that such infants and  toddlers receive early intervention services and support, Congress  appropriated $444 million in fiscal year 2004 for grants to states under Part  C of the Individuals with Disabilities Education Act (IDEA Part C). States  used Part C grants to arrange early intervention services for approximately  279,000 infants and toddlers with disabilities from birth to age 3.  Administered by the Department of Education’s (Education) Office of  Special Education Programs (OSEP), Part C is intended to support states’  efforts to coordinate and leverage funding from other federal, private,  state, and local sources to ensure early intervention services are available  to eligible children. For services to children with disabilities after their  third birthday, IDEA Part B Section 619 provides grants to states to  provide special education and related services to children with disabilities  aged 3 through 5 and, at a state’s discretion, to children before their third  birthday.
Given your interest in the manner in which states have implemented the  provisions of Part C, we examined (1) how Part C programs differ in their  eligibility criteria and whom they serve, (2) to what extent states differ in  their provision of services and funding, and (3) how Education and state  lead agencies help support and oversee efforts to implement Part C, such  as identifying children for services and transitioning children to IDEA Part  B or other services.
We used multiple data collection methods to address these issues. We  conducted site visits to seven states—Colorado, Hawaii, Illinois, Maryland,  Massachusetts, New Jersey, and Oregon—and reviewed their annual  performance reports. We chose states to visit based on the type of state  agency responsible for coordinating the Part C program (lead agency),  number of children served, whether the state served at-risk children,  geographic location, and whether the state participated in an OSEP-funded  project aimed at early identification of infants and toddlers. Figure 1  illustrates the states visited and selected characteristics.
In each of the selected sites, we met with state Part C coordinators, states’  Part B staff responsible for transitioning children to preschool programs,  and the manager of one or more local early intervention programs.  Because Medicaid—the federal-state health-financing program for certain  low-income individuals—can be an important source of funds for early  intervention services for Medicaid-eligible children, we also met with  Medicaid officials in three states. Additionally, we met with OSEP officials  and reviewed their guidance and monitoring reports. We also analyzed  2002, 2003, and 2004 data collected by Education. We used the most recent  data available from OSEP.  These data, available at IDEAdata.org, include  information about infants and toddlers with disabilities, such as the  services they received, the location where they received them, and what  follow-on program they entered when they were no longer eligible for Part  C.  We used information from IDEAdata.org for the 50 states and the  District of Columbia.  Although we determined that some data provided by  OSEP were not reliable, we obtained documents demonstrating that the  office has controls in place to ensure a reasonable degree of accuracy and  reliability in many of its data, and determined that the data elements we  used were sufficiently reliable for our purposes. We also conducted  interviews with educational associations, officials from the Centers for  Disease Control and Prevention’s National Center on Birth Defects and  Developmental Disabilities, and other experts. Our work involved  reviewing the availability and differences in types of services; we did not  examine the quality of services delivered or the appropriateness of  services provided to children. We conducted our work in accordance with  generally accepted government auditing standards between September  2004 and December 2005.
subsections: section_title: Background
paragraphs: According to research, comprehensive early intervention programs can  positively affect the progress of children with developmental delays and  children at risk of having a disability. Services provided by these programs  may include speech language therapy, family counseling, and home visits.  Research has linked early intervention services to improvements in  toddlers’ behavior, interactions between parents and children, infant  development, and overall quality of life for children and their families.  Additionally, research has found increased mental development and better  vocabulary and reasoning skills for children who received early  intervention services when compared with those who did not receive  these services. Findings from the National Early Intervention Longitudinal  Study (NEILS), a research project sponsored by the Department of  Education, has found that parents report a high degree of satisfaction after  receiving 3 years of early intervention services, reporting that their  families are better off and that early intervention services are having “a  lot” of impact on their child’s development.
IDEA is the primary federal education law for infants, toddlers, children,  and youth with disabilities. Grants to states for early intervention services  and special education and related services for children with disabilities  and their families are provided mainly through Parts C and B of the act.  These parts have different histories and are generally administered by  different agencies at the state level. IDEA Part C was established to ensure  that infants and toddlers, from birth to age 3, with disabilities or at risk of  developing a disability, and their families receive appropriate early  intervention services. Part C focuses on, among other things, enhancing  the development of infants and toddlers with disabilities by providing  services in a natural environment, such as the home or a child care center.  This part of the law seeks to improve the capacity of the family to meet the  child’s needs and reduce educational costs by minimizing the need for  special education when the child is older. Part B, in contrast, requires that  services, to the extent possible, be provided in educational settings, such  as regular classrooms. Part B, which includes state grants for children and  young adults ages 3 through 21, and Part B Section 619 preschool grants  for children 3 through 5, aims to ensure that children with disabilities have  access to a free appropriate public education. Funding for Part B is  significantly larger than for Part C programs. In fiscal year 2004, Part C  was funded at $444 million, and approximately 279,000 infants and  toddlers received services. In contrast, Part B state grants and the Section  619 supplement for preschool services were funded at $10 billion and $388  million, respectively, in 2004. Approximately 6 million children were  provided services under Part B state grants, and over 693,000 children  were provided preschool services under Part B Section 619.
To meet Part C goals, states use funds to develop a statewide, coordinated,  multidisciplinary, interagency system of early intervention services for  infants and toddlers with disabilities and their families. Developing such a  system includes designating a lead agency, preparation and dissemination  of materials on the availability of services, defining eligibility criteria, and  delivering services. To this end, each state has a designated lead agency  responsible for the administration, supervision, and monitoring of Part C.  In contrast to Part B, which is led by state education departments, Part C  is led by the health department in 16 states, education departments in 11  states, and other departments, including combined health and human  services departments, in the remaining 23 states. States are expected to  leverage funding, services, and resources from other sources to provide  early intervention services. Each state must have a continuous process of  public awareness activities and evaluations designed to identify and refer  as early as possible all young children with disabilities and their families  who are in need of early intervention services. By law, public awareness  efforts should include disseminating information to parents on available  early intervention services and to all primary referral sources, especially  hospitals and physicians. Efforts may also include television ads,  pamphlets, and posters describing IDEA Part C and how parents can  access services for their child.
Once a child is referred and suspected of having a disability, states are  required to conduct an evaluation to determine if the child meets the  state’s eligibility criteria. In order to be eligible for federal funds under  Part C, IDEA requires that states provide services to any child under 3  years of age who is developmentally delayed. These delays must be  measured by appropriate diagnostic instruments and procedures or  validated by professional opinion, and may occur in one or more of the  areas of development—including cognitive, physical, communicative,  social or emotional development, and adaptive behavior, such as feeding  or toileting. States must also provide services to those children that have a  diagnosed mental or physical condition that has a high probability of  resulting in developmental delay. However, states are free to define what  constitutes a developmental delay and specify how this will be measured.  In addition, states may choose to serve children who are at risk of having a  substantial developmental delay. These may include biological risks, such  as low birth weight, and environmental risks, such as parental substance  abuse. Once an eligible delay has been detected, service coordinators  work with parents and others to match children with services specific to  their needs. Part C requires that every state make certain services  available, including special therapies such as physical, occupational, or  speech language therapy, and family supports such as home visits. For  example, an occupational therapist may come to a child’s home to teach a  child to draw, which involves hand and eye coordination. The law also  requires that services be provided in children’s natural environments.  Figure 2 illustrates the typical process in early intervention programs.
Children eligible for Part C can receive early intervention services until  they turn 3 years of age. Part C funds can be used to provide services to  children from their third birthday to the beginning of the following school  year, but as of 2004 only 14 states have adopted such a policy. Thirty states  allow for the use of Section 619 preschool funds to provide services to  children before their third birthday.  As a child approaches age 3, the local  education agency (LEA) determines the child’s eligibility for Part B  Section 619 preschool services.  If eligible for Part B Section 619, the child  might also be eligible for extended school year services. An extended  school year ensures that a child can continue receiving services even when  schools are not in session, for example, during the summer. According to  Education, most children under Part B do not receive extended school  year services.  By contrast, Part C is a year-round program.  Eligibility for  an extended school year is determined on an individual basis and is  generally based on how much a child will regress and the time it will take  to regain lost skills. During the most recent reauthorization of IDEA, in  2004, Congress gave states the option of allowing children to continue to  receive services under Part C until they become eligible for kindergarten.
section_title: Eligibility Criteria Differ among States but Are Not Consistently Related to Percentage of Children Served
paragraphs: States vary in both the criteria used to establish eligibility for services and  the means used to assess whether children fit these criteria, but these  differences are not consistently related to the percentage of children  receiving early intervention services. While Part C is intended to serve  infants and toddlers from birth to age 3, the majority of children receiving  services nationwide and in most states are toddlers between ages 2 and 3.  Officials in states we visited told us that despite their various public  awareness efforts, there are a number of challenges in identifying all  children eligible for services, specifically reaching children whose families  speak limited English or live in rural areas. Comprehensive data on the  number of children who could benefit from early intervention are not  available; many conditions covered by Part C—such as emotional  disorders and learning disabilities—are not systematically tracked.
subsections: section_title: States Have Different Eligibility Criteria and Means of Assessing Developmental Delay
paragraphs: Nationwide, states’ eligibility criteria for Part C services vary, with most  states specifying the amount of delay in development a child must  experience to be eligible for services, while a few rely exclusively on the  judgment of a multidisciplinary clinical team. IDEA generally gives states  the discretion to determine specific eligibility criteria and diagnostic  procedures. For example, Part C specifies that a child have an established  condition that has a high probability of resulting in a developmental delay,  or that a delay is present in one or more areas of development—cognitive,  physical, communicative, social or emotional, or adaptive—and that all  states allow for the use of informed clinical opinion in their evaluation.  However, states can determine the amount of delay a child must  experience in order to be eligible for services. Part C also gives states  discretion to identify the appropriate diagnostic instruments to measure  the extent of a child’s delay or to rely exclusively on the informed opinion  of professionals. For example, Arizona requires a 50 percent delay in one  or more aspects of early childhood development, such as physical or  emotional development. New Jersey’s eligibility criteria vary depending on  the number of areas in which a child is developmentally delayed. The state  requires that children have a 33 percent delay in one area of development,  but a 25 percent delay in two or more areas of development. The Centers  for Disease Control and Prevention noted that the significance and  implication of a given percentage delay vary across areas of development.  For instance, according to CDC, a 25 percent delay in motor skills  development has much different implications for services for a child than  a 25 percent delay in language development. Other states’ eligibility  criteria are based on the number of months or standard deviations from  age norms. For example, in Massachusetts, a 24-month-old child  functioning at an 18-month-old level could be eligible for services. In  Georgia, a child whose cognitive abilities are at least two standard  deviations less than the abilities of most children at the same age would be  eligible for services. Hawaii does not specify a percentage delay and  instead relies on the judgment of a multidisciplinary team, which generally  includes either a speech therapist or special educator and an occupational  or physical therapist. Despite wide variation in how states define  eligibility, variation among states in the percentage of children served is  not consistently explained by eligibility criteria. For example, Alabama,  which has broad eligibility criteria (25 percent delay in one or more areas)  served only 1.3 percent of infants and toddlers in 2004, while North  Dakota, which has stricter eligibility criteria (50 percent delay in one area,  25 percent delay in two or more areas, informed clinical opinion), served  2.8 percent of its infants and toddlers.  In 2004 the percentage of children  served from state to state ranged between 1.3 and 7.1 percent.
Although not required by Part C, as of March 2005, 8 states—California,  Hawaii, Indiana, Massachusetts, New Hampshire, New Mexico, North  Carolina, and West Virginia—also served children at risk of having a  substantial developmental delay. For example, in Hawaii, children from  families where child abuse or neglect is present may qualify for services.  In Massachusetts, children born with low birth weight or chronic lung  disease may qualify for services. States that we visited that do not serve at- risk children—Colorado, Illinois, Maryland, New Jersey, and Oregon—  expressed interest in serving them but told us that the additional costs  associated with increasing the number of eligible children prevented them  from doing so. Instead of providing services to at-risk infants and toddlers  under IDEA Part C, some states track at-risk children or provide services  to them through other programs. For instance, in Ohio, children at risk are  served through a statewide program, funded in part by federal dollars,  known as Ohio Early Start. Through this program, they receive services  similar to those children receive under Part C.
section_title: Majority of Children Served under Part C Are between Ages 2 and 3
paragraphs: While Part C funding is intended to serve infants and toddlers from birth to  age 3, the majority of children receiving services are toddlers between  ages 2 and 3. In 2004, infants, children under the age of 1, constituted only  14 percent of the approximately 279,000 children served nationwide, and 2  to 3-year-olds accounted for 54 percent. Likewise, in 38 states, the majority  of children served were 2 to 3-year-olds. In Maryland and Illinois, 2 to 3- year-olds made up 54 percent and 55 percent of the children served,  respectively. OSEP and state officials told us that a majority of children  enter the Part C system after age 2 because this is the age at which speech  language delays become apparent and indicated that such deficiencies are  not easily detected in younger children. According to Education officials,  difficulty detecting deficiencies in younger children is due to numerous  factors, including difficulties in assessment, pediatrician or parent “wait  and see” attitudes, and lack of parental consent.  Children who enter the  Part C program in infancy are generally those diagnosed at birth with  conditions such as chromosomal abnormalities and genetic or congenital  disorders.
It also appears that many children are eventually identified as needing  services when they become older. Part B Section 619, which serves  children ages 3 through 5 years, serves many more children than Part C, as  shown in figure 3. In 2004, Section 619 served over 693,000 children,  compared with approximately 279,000 children under Part C, and this  pattern is mirrored in most states. This may be attributable to a variety of  factors. Some delays become more apparent as children get older.  Developmental delays are also more likely to be detected once a child  enters a group setting, such as a preschool or kindergarten program, when  comparison with peers may highlight some delays. Additionally, some  parents may turn to private insurance to pay for services during the first  few years of a child’s life, and enter the IDEA system when their child  enrolls in a formal education program at ages 3, 4, or 5. However,  Massachusetts and Hawaii serve at least the same number of children in  their Part C programs as they do in their Part B Section 619 programs.  Both states include at-risk children in their Part C eligibility criteria.
section_title: States Face Challenges in Identifying All Children Eligible for Services
paragraphs: Officials in the 7 states we visited told us that a number of obstacles  prevented them from reaching all children, even though all of these states,  as required by law, had developed public awareness campaigns to help  identify infants and toddlers in need of services. To inform the public of  the program, states used television, radio, and newspaper ads;  presentations at community fairs; and distribution of pamphlets and  brochures at doctors’ offices, hospitals, and other appropriate locations.  For example, in one of the sites we visited, posters were developed to  hang in doctors’ offices across the state to help inform parents about Part  C.
Despite their public awareness campaigns, the states we visited reported  having difficulty reaching all eligible children. Officials noted that it can be  especially difficult to reach families for which English is a second  language. While some states we visited produced public awareness  materials in Spanish, they had not expanded their efforts to include  materials in other languages. Officials also told us that it can be hard to  reach families who live in rural areas because they may visit a pediatrician  less frequently because of the long distance they must travel to get to the  doctor. While officials in 6 of the 7 states we visited noted that physicians  were the principal source of referrals, they also told us that they believed  physicians were hesitant to make referrals to Part C programs because of  a fear of misdiagnosing a child with a disability. They believed that a  misdiagnosis could cause unnecessary anxiety in a parent whose child is  developing more slowly but would eventually begin to demonstrate age- appropriate skills without needing early intervention services.  Additionally, the American Academy of Pediatrics found through its own  studies that a lack of understanding of the early intervention program’s  processes and procedures is a barrier to physicians’ referring children.
section_title: Selected States Provide Similar Services but Vary in Funding Sources
paragraphs: States provide a broad array of early intervention services to eligible  children and face similar challenges in recruiting and retaining staff to  provide these services, but they vary in the sources of funding they draw  from. States provide a wide range of medical and educational services to  children and their families and rely on professionals, including  occupational therapists, physical therapists, and speech language  pathologists, to deliver these services. Yet officials in the states we visited  reported that they are finding it increasingly difficult to recruit and retain  these individuals. To fund early intervention services for children from  birth to age 3, states relied on funding from multiple sources, including  federal, state, and private funding. However, some states reported  difficulties accessing certain types of funding, such as Medicaid.
subsections: section_title: States Provided a Broad Array of Services to Infants and Toddlers, but States We Visited Reported Challenges Recruiting and Retaining Staff
paragraphs: As required under Part C, states provide a broad array of early intervention  services to infants and toddlers. Under Part C, infants and toddlers with a  disability are entitled to receive an evaluation of their strengths and needs,  service coordination, and support for a smooth transition from early  intervention to preschool programs. In addition, children receive  individualized services that may include physical therapy, family  counseling, and nutrition services. States, as required by law, reported  making all services shown in figure 4 available to infants and toddlers.
Family training   and counseling   and home visits  Figure 5 shows that the most frequently received services nationwide are  speech language therapy, special instruction, physical therapy, and  occupational therapy. Psychological and nutrition services were among  the least frequently provided. The states we visited were similar in their  mix of services. For example, in states such as Maryland, Oregon, and  Colorado, speech language, physical, and occupational therapy, to help  with skills like feeding, walking, and talking, were the most frequently  provided services, and services such as psychological services and  nutrition services were rarely provided.
These services were provided in a variety of settings, including the home,  hospital, and day care, and through public and private service providers.  For instance, according to Maryland officials, LEAs, departments of  health, and departments of human services in the state provide services to  infants and toddlers in addition to private providers. In Massachusetts, a  network of private programs provides early intervention services under  contract with the state.
Officials in each of the states we visited reported challenges in recruiting  and retaining staff to provide early intervention services. Specifically,  speech language pathologist and occupational therapist were the most  difficult positions to fill. Officials cited several reasons for these  challenges. Early intervention staff are required by Part C to serve children  in natural environments, such as homes or child care centers. This  requires staff to travel to these locations, which can be time-consuming  and costly. For instance, in Hawaii, state officials told us that it is hard to  schedule services for children in neighboring islands because of the long  travel times to reach them. Additionally, state officials told us that salaries  earned by early intervention contractors were not always competitive with  salaries and benefits available in the private health care sector. These  challenges make it difficult for some early intervention programs to hire  professional staff. Understaffed programs can often result in heavier  caseloads in which children do not receive services or receive services  less often than intended.
section_title: States Use Various Funding Sources in Addition to Part C, but Selected States Report Difficulties Accessing Funds
paragraphs: To help pay for services for infants and toddlers, states draw on a range of  federal, state, and local funding sources. As shown in figure 6, states  accessed funds from a variety of sources at the federal level, including the  Child Care and Development Block Grant, IDEA Part B, and Medicaid, and  from the state level. See appendix I for a glossary of these federal and  state funding sources.
State general revenue funds represent the most frequently used funds by  states after federal Part C dollars. All 50 states reported using state general  funds.
For most states we visited, local support represented a small proportion of  reported early intervention funding, but in one—Maryland—it accounted  for 51 percent. However, states did report receiving funds from local  sources or through private insurance and fees collected from a child’s  family. For example, New Jersey charges a sliding monthly fee based on  family size and income relative to federal poverty guidelines. State officials  said families that can afford to contribute to the cost of service provision  do so, but families that cannot afford the fee still receive services. In fiscal  year 2003, New Jersey collected $43,862 in revenue from this fee, which  made up less than 1 percent of its reported early intervention service  funding.
In 4 of the 7 states we visited, states provided most of the funding for  services for infants and toddlers, and Part C represented a smaller  percentage of total funding. For example, in Illinois, state general revenue  funds represented 57 percent of the total funding reported for infants and  toddlers with disabilities, and Part C funds represented 17 percent.  However, Part C represented a larger percentage of reported funding in  certain states. For instance, in Colorado, Part C funds made up 38 percent  of funds reported for infants and toddlers with disabilities. See table 1 for  funding sources in the states we visited.
Beyond our collection of funding data in our seven site visits, we looked at  funding data for all 50 states by examining the information states provided  to OSEP as part of their annual performance reports. Their data included  federal, state, and local funding sources, as well as the dollar amounts for  each. However, during the course of our review, we found that data were  incomplete. For instance, Hawaii did not report funding for two programs  that provide early intervention services. We found similar gaps in  examining funding data reported to OSEP by additional states. During the  course of our review, OSEP concluded the funding data from states were  unreliable and announced plans to stop collecting such data.
States we visited reported challenges in accessing certain funding sources.  For some smaller programs and funding sources, officials in some states  we visited said the paperwork was too cumbersome for the small amount  of funding they might receive in return. In other cases, some officials  reported difficulty obtaining Medicaid reimbursement for Part C services.  In Oregon, where the state department of education is the lead agency,  officials explained that the different terminology educators use to describe  certain needed services makes it hard to access Medicaid for early  intervention services. For instance, Medicaid may pay for occupational  therapy if the purpose is health-related in nature—such as teaching a child  to eat. But Medicaid may not provide reimbursement if the stated purpose  of the therapy appears educational, such as teaching a child to grasp a  crayon to draw. Despite the challenges some states reported,  Massachusetts officials cited a strong and collaborative working  relationship with Medicaid and private insurance. For example, since 1985,  the state has had operational standards that include reimbursement of  virtually all Part C services through Medicaid.
section_title: Both OSEP and States Use Data to Monitor Part C Compliance, but Challenges Persist in Transitioning Children to Part B
paragraphs: OSEP monitors the states, which in turn oversee local Part C programs by  examining data on how well programs identify, serve, and transition  children to other programs when they are too old for Part C. In its  oversight, OSEP tracks data on program performance submitted by states  through annual performance reports and other mechanisms. As part of its  efforts, OSEP uses two key performance indicators—percentage of infants  and toddlers receiving early intervention services and the percentage of  these children receiving services in natural environments—to target site  visits and technical assistance to programs most in need of guidance.  States oversee Part C in similar ways but are free, within certain  parameters, to design their own oversight strategies. Although federal and  state data and oversight efforts have helped identify some performance  problems, challenges remain in transitioning children from Part C to Part  B Section 619 and other follow-on preschool programs. In 5 of the 7 states  we visited, officials said that some children who turn 3 during the summer  and are eligible for Part B preschool experience service gaps when school  is not in session. OSEP does not have data on how frequently children are  provided extended year services during the summer months.
subsections: section_title: OSEP Monitors and Supports Implementation of Part C by Tracking Key Data
paragraphs: To ensure that programs are managed well and that eligible infants and  toddlers receive the services they need, OSEP monitors the states by  collecting and tracking key data. Specifically, each state submits an annual  performance report to OSEP, which includes a narrative on five areas of  program performance and plans for improvement. States report on   (1) what they are doing to identify children and the effectiveness of these  efforts; (2) how well they are helping families develop the skills they need  to help their children; (3) whether services are provided to children in a  natural environment, such as, home, day care, or other programs for  typically developing children; (4) whether transition planning is available  to children and their families; and (5) what they are doing to supervise and  manage local programs. States report on progress or challenges in meeting  performance goals and state-developed indicators as well as projected  timelines, activities, and resources needed to achieve future targets. For  example, with respect to identifying all children eligible for services,  Illinois set a goal for the period covering July 2003 to June 2004 to increase  the percentage of children receiving early intervention services to 2.6  percent of all children and to screen 200,000 children for developmental  delays, approximately 37 percent of the state’s population age 0 to 3. In its  annual performance report for that period, Illinois described the strategies  it used to exceed its participation target—2.76 percent of children received  services—and explained why it fell 58,000 children short of its target for  screenings.
In addition to information submitted as part of the annual performance  reports, states also report data to OSEP in five areas: (1) number and  percentage of children receiving services, (2) the specific settings in which  children receive services, (3) number of children who stopped receiving  Part C services and the reason for stopping, (4) number and types of  services provided, and (5) the number of clinical personnel employed or  contracted to provide services. IDEA requires states to submit data in the  first three areas, and OSEP, under authority granted to it in IDEA, requires  states to submit data in the final two areas. For future reporting periods  OSEP plans to discontinue collection of personnel data because they were  found to be unreliable.  Additionally, OSEP will stop collecting  information about the number and types of services provided. The  reporting data complement and inform topics covered in the annual  performance reports.
section_title: Failure to Reach a Key Child Identification Indicator Can Signal Part C Compliance Problems
paragraphs: OSEP uses the annual performance reports and other reporting data to  identify problem areas and target its oversight efforts. In particular, OSEP  compares states against the national average on two performance  indicators: (1) the percentage of all infants and toddlers in the state  receiving early intervention services, which was 2.2 percent as of 2003, and  (2) the percentage of infants and toddlers with disabilities receiving early  intervention services in a natural environment, which was 83 percent, as of  2002. These indicators were developed by OSEP with input from  interested parties, including states and the Centers for Disease Control  and Prevention. OSEP officials said they chose these indicators because  of their confidence in the accuracy of the data and because they are  closely linked to other Part C requirements. OSEP considers whether  states have fallen below the national average when deciding whether to  target states for technical assistance and closer monitoring. In 2003, half of  all states served less than 2.2 percent of children. OSEP officials note that  the indicators do not directly measure compliance with Part C, but they  serve as an early warning signal that states may need assistance.
OSEP relies on the first performance indicator as a measure of the level of  access states are providing for early interventions and the success of  efforts to identify all eligible children. It has collected this performance  information since at least 1996, and the percentage of the nation’s children  between birth and age 3 receiving services has steadily increased since  1998—from 1.6 percent to 2.2 percent in 2003. Twenty-five states met or  exceeded this indicator in 2003. Of these 25 states, 7 served between 3.4  and 7.7 percent. The fact that half of all states served 2.2 or more percent,  and some served as high as 7.7 percent, combined with the known  difficulties in reaching all eligible children, suggests that the actual eligible  population may be larger than the number of children states are  identifying. The Centers for Disease Control and Prevention told us that  comprehensive data on the number of children who could benefit from  early intervention are not available.
OSEP pays particular attention to states that do not meet its performance  indicator. Failure to meet this indicator can be a signal that the state is not  doing enough to identify all eligible children and raise public awareness of  available early intervention services. First, OSEP might encourage these  states to seek help from technical assistance centers or OSEP staff. States  can get technical assistance on an ongoing basis through several vehicles,  such as conferences, six regional centers, research and training centers,  and a national center. Second, OSEP might schedule a site visit, at which it  would interview state and local officials, providers, and parents and  review program data in more depth. After OSEP completes a site visit, it  prepares a monitoring report addressing strengths and areas of  noncompliance with Part C.
Using data from annual performance reports and site visits, OSEP has  found states out of compliance with Part C for a number of issues related  to the goal of identifying all eligible infants and toddlers for services.  OSEP finds states out of compliance for, among other reasons, not making  adequate public awareness efforts to inform culturally diverse groups  about available early intervention services, not disseminating public  awareness materials to pediatricians and other referral sources in rural  areas, not referring children from underrepresented groups for services in  a timely manner, and not carrying out service coordination  responsibilities. Between July 1, 2002, and June 30, 2003, 14 states were  found out of compliance with child identification requirements. These  states served 0.9 to 7.7 percent of their population, with 9 of the 14 states  serving less than 2.2 percent of their population. OSEP found Nevada  (which was the state that served the lowest percentage of infants and  toddlers at 0.9 percent in 2003) out of compliance for not ensuring that all  children who may be eligible for early intervention services are identified,  located, referred, and evaluated in accordance with Part C. Hawaii, which  serves the largest percentage of children, including children at risk of  having a substantial developmental delay, was found out of compliance  because it lacked procedures to ensure evaluations and assessments were  conducted in all the areas required by Part C.
When states are not in compliance with Part C and do not show  improvement in their performance, even after receiving technical  assistance, OSEP has several options. Initially, OSEP might work with a  state on a plan of corrective action with a timeline, or issue a letter to the  state documenting the specific problems. As a last resort, OSEP can  impose formal sanctions against a state, including withholding funds,  referring the matter to the Department of Justice, entering into a voluntary  compliance agreement with a state and its respective lead agency that sets  a timeline for bringing the state into compliance, and incorporating special  conditions into a state’s grant award. OSEP reports that it rarely withholds  funds or refers any noncompliance issues for Part C programs to the  Department of Justice. Two states, South Carolina and Arizona, are  currently on compliance agreements, and several have special conditions  in their grant awards.
OSEP is using its second performance indicator, on the percentage of  infants and toddlers with disabilities receiving early intervention services  in a natural environment, in the same way it uses data about the  percentage of all infants and toddlers in the state receiving early  intervention services. OSEP officials told us that on the basis of provisions  in the 2004 reauthorization of IDEA, they recently developed a new set of  performance indicators. States will submit to OSEP baseline data on these  measures in December 2005. The new indicators generally build upon data  currently being collected to look in new ways at how states provide early  intervention services in a natural environment, identify children, transition  children to follow-on services, and address supervision and management  issues. For example, the new indicators for identifying children include a  comparison of the percentage of children served in each state with the  average in other states with similar eligibility criteria, and information  about the percentage of children who proceeded through the evaluation,  assessment, and service planning stages of the early intervention system  according to timelines required by Part C. Similarly, the new transitioning  indicators require information about the percentage of children who  receive timely transition planning.
section_title: States Have Responsibility for Oversight of Local Early Intervention Providers
paragraphs: State lead agencies play a critical role in monitoring and supporting early  intervention services through their responsibility for local Part C  programs. Instead of directly providing services to infants and toddlers  with developmental delays, in the states we visited, local and regional  early intervention programs generally deliver and coordinate services. The  states, then, are responsible for ensuring the local programs are in  compliance with Part C. States use many of the same approaches as OSEP  in monitoring and supporting local programs, such as file reviews,  reporting requirements, program certification or funding awards,  employing training and technical assistance staff, and monitoring visits.  States frequently interact with local early intervention programs. For  example, Massachusetts officials seek to visit half of their 63 local  programs each year.
OSEP encourages collection of outcome data from parents and is  sponsoring research on outcomes, which is scheduled to be completed in  2006. At least 4 of the states we visited monitor early intervention services  by conducting parent surveys. The surveys measure parental satisfaction  with the delivery of early intervention services, how well parents feel  services are coordinated, and parents’ experiences working with staff to  transition their children to follow-on services. OSEP provides funding for  technical assistance to help states develop parent surveys. These survey  data and information from OSEP’s National Early Intervention  Longitudinal Study are potential sources of outcome data about early  intervention services. Additionally, the Early Childhood Outcomes Center,  a 5-year project funded by OSEP, is providing technical assistance to  support states in developing and implementing other outcome  measurement systems for children with disabilities. The Early Childhood  Outcomes Center is attempting to develop outcome data that can be  aggregated at the national level, document program effects, and improve  programs at the local and state levels.
State Part C officials we spoke with explained that they have to hold local  early intervention programs accountable for the same performance  indicators for which OSEP holds them accountable. As with OSEP, state  Part C coordinators have taken actions to enforce compliance with IDEA.  Officials in Colorado said they had taken away funding from programs that  failed to comply with Part C requirements. Also, when states fail to  enforce IDEA requirements, they risk not only being found in  noncompliance, but also lawsuits brought by individuals under IDEA. Such  was the case in Hawaii and Illinois. In Hawaii, parents and mental health  advocates alleged that qualified handicapped children were not receiving  mental health services. In Illinois, plaintiffs alleged that the state had a  waiting list for children who were eligible for services. Both states settled  the lawsuits by agreeing to take specific steps to come into compliance  with the act.
section_title: Overseeing and Coordinating Transitions to Part B Remains a Challenge
paragraphs: Although the information that OSEP and the states compile has helped  identify some performance problems, overseeing and coordinating  children’s transitions to IDEA Part B remains a challenge. The transition  process involves several sequential steps, and when any of these steps are  delayed, a child could miss out on critical services and providers can be  left without important information on a child’s status. As a child nears age  3, local early intervention staff must inform the child’s family about follow- on programs that may be available for the child, such as Part B Section  619. Local early intervention staff, with the approval of the family, hold a  conference with the family and, if the child is potentially eligible under  Part B, LEA officials, to discuss any services the child may be eligible to  receive. This transition planning conference for children potentially  eligible under Part B, must occur at least 90 days before the child’s third  birthday. Early intervention staff and the family must develop a written  transition plan. And if the child is believed eligible for Part B services,  early intervention staff must notify the LEA. The LEA must determine the  child’s eligibility within a reasonable time frame, and if the child is found  eligible, a meeting to develop an individualized education program (IEP)  for the child must be conducted within 30 days. Part B requires teachers,  parents, school administrators, and related services personnel to develop  the IEP shortly after a child is found eligible for Part B services, and the  IEP guides the delivery of special education supports and services for a  student with disabilities.
While IDEA requires states and local programs to provide transition  planning and follow these specific procedures, we found in our site visits  that delays still happen. Education cited preliminary unpublished data that  would suggest transitions are a year-round problem.  We found that delays  generally occur for two reasons. First, data in annual performance reports  indicate that some states have difficulty scheduling transition meetings 90  days in advance of a child’s third birthday. State and local officials we  interviewed said it was difficult to assemble all of the requisite individuals  for the conference before the deadline. Second, some state officials  expressed concern about the timing of the LEA’s decision on a child’s  eligibility. The decision may be delayed until the following school year for  children with summer birthdays because LEAs generally operate on a 9- or  10-month academic calendar. In 5 of the 7 states we visited, officials said  that some children who turn 3 during the summer and are eligible for Part  B preschool experience service gaps when school is not in session. As a  result of these delays in the transition process, some children who need  extended school year services during the summer may not receive them.  Most of the states we visited do not keep track of the number of eligible  children who do or do not receive extended school year services.
There are two potential ways to ensure children do not experience gaps in  services. First, extending Part C services until children are eligible to enter  kindergarten, which was permitted for the first time with the  reauthorization of IDEA in 2004, could mitigate some of the challenges  associated with transitioning children. However, none of the states we  visited plan to exercise this option. States indicated that it would be too  costly for them to extend Part C service and that Part B officials are not  willing to support doing so with Part B Section 619 funds. Second, Part C  funds can be used to provide services to children from their third birthday  to the beginning of the following school year, but an OSEP technical  assistance center reports that as of 2004, while 30 states permit such use  of Part C funds, only 14 states have adopted such a policy.
In addition to citing delays, state and local officials cited other obstacles to  a smooth transition for children. Local early intervention programs  sometimes have to work with multiple LEAs that each have their own  eligibility criteria for Part B, which complicates coordination. For  example, a local Massachusetts official said that her early intervention  program spans a geographical area that encompasses 13 different LEAs.  Also, LEAs sometimes conduct their own evaluations, contributing to the  time needed for determining Part B eligibility.
State and local officials also reported that early intervention programs  often do not get final notification of a child’s eligibility for Part B services  from the LEA. According to OSEP, this information exchange may not  occur for several reasons, including federal laws relating to privacy and  the need for parental consent to share results of Part B evaluations.  Without access to information on eligibility decisions, early intervention  staff do not know whether they need to refer children who are denied Part  B services to other follow-on programs, like Head Start. State Part C  officials are required to report Part B eligibility information to OSEP when  reporting why a child stopped receiving services, but LEAs that administer  Part B do not always provide this information in a timely manner, if at all.  While two of the states we visited are in the process of developing  mechanisms for ensuring early intervention staff have access to eligibility  information, none are currently in use. OSEP staff acknowledged that  states need continued support to ensure Part B officials share eligibility  information with early intervention staff.
section_title: Conclusions
paragraphs: Scientific research suggests that the earlier a child with disabilities gets  intervention services, the more effective these services may be in  enhancing a child’s development. Before a child enters preschool, states  have substantially greater flexibility in determining which infants and  toddlers to serve. IDEA gives states the freedom to set different eligibility  criteria for early intervention services and decide how they will evaluate  children for eligibility. However, it is partly these variations that make it  difficult to determine if states are actually meeting the early intervention  needs of all their developmentally delayed infants and toddlers.
One of the most pressing challenges is transitioning young children with  disabilities from services provided under IDEA Part C to Part B preschool  or other services at age 3.  This transition requires that a sequence of  determinations and agreements among multiple stakeholders take place in  a timely way.  Education reported in its comment that it has preliminary  data that suggest that service gaps may occur whenever children  transition. In our interviews with state and early intervention officials, we  found that transition is perhaps most challenging for children who  transition during the summer months.  If determination of eligibility for  Part B is delayed, children can be prevented from receiving necessary  services, including those provided through extended school year programs  in the summer.  Based on our findings, and Education’s preliminary  findings from its ongoing study of preschool services, it appears that  without additional guidance, some children exiting the Part C program and  eligible for Part B preschool may not receive all the services for which  they are eligible.
section_title: Recommendations for Executive Action
paragraphs: In order to assist states in providing a more seamless transition for  children with disabilities from IDEA Part C to Part B, or other preschool  programs, we are recommending that the Secretary of Education provide  states with additional guidance on transition planning and services for  children with birthdays during the summer, and especially in cases where  children are likely to need extended school year services. Additionally,  after Education completes and verifies the results from its ongoing studies  relating to transitioning, that information should be used to inform the  department’s guidance to states on transition planning.
section_title: Agency Comments and Our Evaluation
paragraphs: We provided a draft of this report to Education for review and comment.  Education disagreed with the recommendation we made to incorporate  into its research agenda a method for determining how frequently children  transitioning from Part C to Part B do not receive services during the  summer months, and if gaps in services are found to be a problem, provide  states with additional guidance on improving children’s access to  extended school year services. Education noted that preliminary and  unpublished data from a department study indicate that gaps occur when  children are transitioned from Part C to Part B, not only during the  summer, but whenever transitions occur. Additionally, Education stated  that based on its preliminary data, there is no need to study extended  school year service. We believe it is critical to provide children with the  services they need when they need them. If Part B eligibility is not  determined prior to children turning 3 during the summer months, then  related decisions, including those about extended school year services,  cannot be made. We believe that by providing additional guidance,  Education can help states improve transition planning and services and  help ensure that children do not experience gaps in services during critical  periods of their development.
Education also provided technical comments that we incorporated into  the report where appropriate. Education’s written comments are  reproduced in appendix II.
We will send copies of this report to the Secretary of Education,  appropriate congressional committees, and others who are interested. We  will also make copies available to others upon request. In addition, the  report will be available at no charge on GAO’s Web site at  http://www.gao.gov. If you have any questions about this report, please  call me at (202) 512-7215. Key contributors are listed in appendix III.
section_title: Appendix I: Select Federal and State Funding Sources for Early Intervention Services
paragraphs: The Child Care and Development Block Grant program is a  discretionary fund program that, among other things, supports state  efforts to provide child care to parents trying to achieve independence  from public assistance.
Children with Special Health Care Needs refers to a type of program  operated by particular states that provides financial assistance or case  management for needed medical treatment to children with serious and  chronic medical conditions to reduce complications and promote  maximum quality of life.
Developmental Disabilities Services refers to state programs that serve  and support individuals with mental retardation/developmental disabilities  and their families, including early intervention services. For example,  community developmental disability services are supported by state  funding in Kansas, which defines community developmental disability  services as those designed to meet needs associated with work, living in  the community, and individualized supports and services.
Head Start and Early Head Start are comprehensive child development  programs that serve children from birth to age 5, pregnant women, and  their families. These programs are federally funded and locally  administered by community-based nonprofit organizations and school  systems. Grants are awarded by the Department of Health and Human  Services.
IDEA Part B, administered by the Department of Education, provides  grants to states to provide preschool services to children with disabilities  from age 3 to 5.
The Maternal and Child Health Services Block Grant program (Title  V of the Social Security Act) provides federal grants to states and  organizations with the aim of improving the health of mothers and  children. Among the many services supported by grants are support  programs for children with special health needs, care coordination,  transportation, home visiting, and nutrition counseling.
Medicaid is health insurance that helps people who cannot afford medical  care pay for some or all of their medical bills. Medicaid is jointly funded by  the federal and state governments to assist states in furnishing medical  assistance to eligible needy persons.
The Social Services Block Grant (SSBG) program allocates federal  funds to states to support a wide variety of social services programs for  adults and children.
Temporary Assistance for Needy Families (TANF) is a family  assistance block grant from the Department of Health and Human Services  to states that can be used to provide monthly cash assistance payments to  families as well as to finance services for TANF clients or other low- income people to support their efforts to work.
Tobacco Funds were awarded to states as part of a settlement agreement  with major tobacco companies.  Kentucky designated 25 percent of its  Phase I settlement to an early childhood initiative that includes First Steps,  its early intervention system.  Kansas allocated all of its settlement for  children’s services.
TRICARE is the Department of Defense’s regional managed-care program  for delivering health care to members of the armed services and their  families, survivors, and retired members and their families.  TRICARE  operates like health maintenance organization plans offered in the private  sector and other similar health insurance programs.
section_title: Appendix II: Comments from the Department of Education
section_title: Appendix III: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Staff Acknowledgments
paragraphs: In addition to the contact named above, the following individuals made  important contributions to this report: Betty Ward-Zukerman, Assistant  Director; Ramona Burton, Analyst-in-Charge; Daniele Schiffman, Analyst;  Rachael Chamberlin; Sherri Doughty; Avrum Ashery; Jonathan McMurray;  Beverly Ross; and Daniel Schwimer.