Caring for Our Children (CFOC)

Chapter 8: Children with Special Health Care Needs and Disabilities

8.1 Guiding Principles for This Chapter and Introduction

The information in Chapter 8 is provided to acquaint caregivers/teachers with the care and services required and the types of programs available for both children with special health care needs as well as children with disabilities who are eligible for services under the Individuals with Disabilities Education Improvement Act (IDEA 2004), a federal law most recently amended in 2004 (1). It also identifies what roles the caregiver/teacher has in helping these children to achieve full inclusion in the child care facility and in providing optimal developmental opportunities for children who are receiving services under IDEA 2004. Because Chapter 8 focuses in part on children who are eligible for services under IDEA 2004, a federal law, the reader is encouraged to review relevant state statutes and regulations which implement this statutory framework in your state, as well as state and county agency policies concerning the management of specific situations or diseases. This publication primarily focuses on national standards.

The content of this chapter was prepared with the guidance of five principles:

1) Standards that are relevant to children with special health care needs, as well as to all children, are integrated into other chapters within this document. This does not diminish the importance of making sure that children with disabilities or chronic illnesses receive the special care that typically developing children would not require to participate fully in the child care service or program.

2) Standards for children with special health care needs have been integrated throughout this book with those for all other children so as to emphasize the need to promote an inclusionary approach. Standards in this chapter are primarily those that apply to the special service needs and planning mechanisms, including those addressed in IDEA 2004, for a child whose needs differ from those of a typically developing child. Standards addressing health, safety, nutritional, and transportation issues for care of children with special health care needs are found in other chapters. See list on page 342.

3) This chapter includes standards that enable accommodation and full inclusion of children with disabilities and special health care needs in child care facilities to achieve a level of participation as close as possible to that of typically developing children. The content of these standards will not segregate or discriminate against participation of children with disabilities and/or special health care needs, but specify the practices needed to ensure that the child with a disability or chronic illness has full, safe inclusion in the child care program.

4) To assure confidentiality and maximum family input, consent from a parent/guardian is required to obtain information about a child’s special health care needs from other service providers or to share information obtained by the caregiver/teacher. However, with parent/guardian consent, the caregiver/teacher should have available important information relevant to meeting the health and safety needs of the child in the child care setting.

5) It is important that all children, especially those with special health care needs, receive their medical care in a family-centered, community-oriented health care practice, identified as a medical home. The medical home team should collaborate with other care providers, including the child care facility, in order to assure that the care for the child with special health care needs is coordinated and appropriately implemented.

Serving Children with Special Health Care Needs and Disabilities Including Children Eligible Under IDEA 2004

The Individuals with Disabilities Education Act (IDEA), a federal law most recently amended in 2004 (1), affords caregivers/teachers a unique opportunity to support children with disabilities that might affect their educational success and to improve services for both the children and families in the child care setting. The purpose of the law is to provide “free appropriate public education” for all “eligible” children, from birth to twenty-one years, in a natural or least restrictive environment. Eligible children under IDEA 2004 include those with developmental delays or those with physical or mental conditions that may result in a developmental delay. Part B, Section 619 of this statute supports the needs of eligible preschool-age children through the local school district. Part C provides for a comprehensive system to serve the needs of eligible infants and toddlers between the ages of birth and three years and their families. Child care programs can play a significant role in supporting the developmental needs of children with special health care needs and disabilities in the child care setting.

Historical Information

The original statute of IDEA, then titled The Education for All Handicapped Children Act (2), was passed in 1975 and initially covered only children aged five through twenty-one years. This law was amended in 1986 (3) to include preschool education services to children aged three through five and early intervention services for children from birth to age two. The preschool services are included in Part B of the act. The infant and toddler portion of the act, which was Part H when initially passed, is now Part C under the 1997 reauthorized version of the act. The law is now identified as the Individuals with Disabilities Education Act. Information about IDEA can be obtained from the Office of Special Education and Rehabilitative Services (OSERS), U.S. Department of Education.

Part C Supports Collaborative Efforts

Part C of IDEA 2004 makes federal funds available for states to implement a system of early intervention services for eligible infants and toddlers and their families using evidence-based practices. The governor of each state must designate a lead agency, such as education, health or another agency, to provide the assessment, coordination of services, and the administrative functions required under Part C. The intent of Part C is to enhance the development of, and to provide other needed services for, infants and toddlers who have developmental delays or are at risk of developing such delays and to support the capacity of families to enhance the development of their children in the home and community. A further intent is to transition children into effective and inclusionary school-age services.

Although each state must designate a lead agency for implementing this federally funded program, the program is designed to be a coordinated, collaborative effort among a variety of state agencies for screening of children, assessment, service coordination and development of an Individualized Family Service Plan (IFSP) for every eligible infant or toddler and his or her family. The IFSP describes early intervention services for an infant or toddler and the child’s family, including family support and the child’s educational, therapeutic, and health needs. A Service Coordinator should be appointed who is assigned to oversee the IFSP and assure that the recommended services are provided.

Among the more important aspects of this interagency model is the belief that children and their families should be viewed from the perspective of an ability model rather than a deficit model, i.e., emphasizing the strengths and capabilities of the family and child rather than the family’s or child’s perceived weaknesses. This means that the approach of the providers of services and supports identified in the IFSP should be that of enhancing and supporting already-existing resources, priorities, and concerns of the child and family rather than assuming that services can correct “deficiencies” of the child or family.

The focus of services and supports to the child and family under Part C is the achievement of two related goals:

  1. To enhance and support the development of young children with disabilities and chronic illness and using developmentally appropriate practices, to minimize their future need for special education and related services when they enter the public school system.
  2. To maximize the potential for infants and toddlers with disabilities and chronic illness to enjoy the benefits of their communities and grow into adults capable of living independently, pursuing vocations, and participating in the benefits their communities offer all citizens.

Serving Children in Natural Environments

Part C of the IDEA 2004 emphasizes the delivery of services in natural environments. These are defined generally as settings that are “natural or typical for the child’s same-age peers who have no disabilities.” Natural environments reflect those places that are routinely used by families and typically developing children and represent a wide variety of options such as the child’s home, the neighborhood, community programs, and services such as child care centers, parks, recreation centers, stores, malls, museums, etc. By incorporating elements of the child’s typical environment (e.g., furniture, toys, schedule, siblings, care providers, extended family, etc.) in the planning and delivery of services and supports, the family and caregivers/teachers can best discover the child’s talents and gifts and enhance these in the normal course of routines, play relationships, and caregiving.

Learning about and understanding the child’s routines and using real life opportunities and activities, such as eating, playing, interacting with others, and working on developmental skills, greatly enhances a child’s ability to achieve the functional outcomes identified in the IFSP. For these reasons, it is critical to have a representative from the child care setting that the child attends or may attend at the table when the IFSP is developed or revised. The presence of the service coordinator is also essential. It is also imperative that written informed consent is obtained from parents/guardians before confidential information (written or verbal) is shared among caregivers/teachers. For these same reasons, it is very important that a caregiver/teacher become familiar with a child’s IFSP and understand both the role the provider is to play and the resources available through the IFSP to support the family and caregiver/teacher.

Other federal legislation, such as the Americans with Disabilities Act (ADA) (4) and Section 504 of the Rehabilitation Act of 1973 (5), prohibit discrimination against children and adults with disabilities by requiring equal access to offered programs and services. Section 504 covers only those programs receiving federal dollars while ADA applies to public and private child care programs. The IDEA 2004 promotes inclusion of infants, toddlers, and preschoolers in the same activities as their peers by providing services within children’s natural environments.

Part B - The Individualized Education Program

Three- through five-year-olds eligible for services under Part B Section 619 of the IDEA 2004 are served through a written Individualized Education Program (IEP). The IEP is also developed by a team, with the local education agency assuming responsibility for its implementation in either a public preschool program or a private preschool setting. Although federal funds are not specifically designated to support services provided by agencies outside of the public school system, local education agencies may contract with private providers for preschool services and cover educationally related services identified in the IEP, such as speech and language therapy, in the preschool setting. The IEP is often coordinated by a representative of a local school district with a team and leadership designated by the local educational authority.

Caregivers/teachers should become as familiar with a preschooler’s special health care needs, as identified in the IEP, as they should with the services for an infant or toddler set forth in an IFSP. The caregiver/teacher may wish to send a representative, with prior informed written parental/guardian consent, to the child’s IEP review meetings to share valuable insight and information regarding the child’s special health care needs in both the educational and child care settings. Continued contact with the child’s primary care provider or medical home is also desirable to assure coordinated care.

The standards in this chapter are intended to articulate those opportunities and responsibilities that child care agencies share with other agencies in serving a child with special health care needs, whether the child is served through an IFSP or an IEP.

8.2 Inclusion of Children with Special Needs in the Child Care Setting

8.2.0

8.2.0.1: Inclusion in All Activities


All children should be included in all activities possible unless a specific medical contraindication exists.
RATIONALE
The goal is to provide fully integrated care to the extent feasible given each child’s limitations. Federal and state laws do not permit discrimination on the basis of the disability (i.e., Americans with Disabilities Act [ADA] and Section 504 of the Rehabilitation Act) (4,5).

Studies have found the following benefits of inclusive child care: Children with special needs develop increased social skills and self-esteem; families of children with special needs gain social support and develop more positive attitudes about their child; children and families without special needs become more understanding and accepting of differences and disabilities; caregivers/teachers learn from working with children, families, and service providers and develop skills in individualizing care for all children (6).

COMMENTS
Caregivers/teachers may need to seek professional guidance and obtain appropriate training in order to include children with special needs, such as children with severe disabilities and children with special health care needs such as chronic illnesses, into child care settings. These may include technology-dependent children and children with serious and severe chronic medical problems. The child care health consultant should be involved in the transition and enrollment process in order to support individual accommodations and the care of children with special health care needs. Every attempt should be made, however, to achieve inclusion if the parent/guardian so wishes.

The facility should pursue mechanisms available to supplement funding for services in the facility. These resources usually require the parents/guardians’ consent and may require that the parents be actively involved in the pursuit for funding. Even so, caregivers/teachers can and should discuss options with the parents/guardian as potential sources of financial assistance for needed services. These sources might include:

  1. Medicaid, including waiver funding (Title XIX);
  2. Private health insurance;
  3. State or federal funds for child care, education, or for Children with Special Health Care Needs (Title V);
  4. IDEA (particularly Part C funding);
  5. Community resources (e.g., volunteers, lending libraries, and free equipment available from community-based organizations);
  6. Tax incentives (credits and deductions are available under federal law to most for-profit child care programs).

Section 504 is a civil rights law, and protects children from discrimination. It provides for supports and accommodations so a child can access the curriculum. In order to qualify for supports, a child must have a physical or mental impairment that substantially limits at least one major life activity such as walking, hearing, seeing, breathing, learning, reading, writing, etc. Section 504 requires an evaluation from multiple sources. There is no federally mandated plan, nor do parents/guardians have to be involved in the creation of the plan. We know from best practice, however, that parents/guardians should be active participants in plans to care for their children. Section 504 provides for accommodations during testing and for accessibility. It does not provide for the individual plans and protections that are provided under IDEA. For more information, go to http://www.wrightslaw
.com.

Another resource for parents/guardians and caregivers/teachers are the Protection and Advocacy Centers funded by the federal government to protect rights of persons with disabilities.

TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
8.2.0.2 Planning for Inclusion

8.2.0.2: Planning for Inclusion


Inclusion and participation of children with special health care needs requires proactive planning. The facility must plan for the resources, support, and education necessary to increase the understanding and knowledge of staff, but also of parents/guardians, and the children without disabilities within the facility. Planning to include children with disabilities and with special health care needs requires time, resources, support and education. Every effort should be made to plan fully to include children with disabilities and children with special health care needs to maximize success. In planning for the inclusion of children with disabilities and children with special health care needs, safety considerations should be an additional factor considered.
RATIONALE
Inclusion without adequate preparation, understanding, training, mobilization of resources, and development of skills among all those involved, may lead to failure.
COMMENTS
Available resources include, but are not limited to: brochures, books, guest speakers, advice from parents/guardians of children with special health care needs, expert consultation from child care health consultants, and utilization of child care health consultants. Methods may vary according to need and availability and, specific to educating children without disabilities in the facility, using age-appropriate resources is particularly important. Communication between child care, parents/guardians, and primary care providers (with written parental/guardian permission) helps facilitate a smooth inclusion process. The facility should provide opportunities to discuss the similarities as well as the differences among all the children enrolled. Professionals or knowledgeable parents/guardians who facilitate such discussions should assure that caregivers and typically developing children in the facility receive presentations and participate in discussions about the special equipment that the children with special needs may require, and that they understand other differences, such as a prescribed diet or limitations of activity. Children without disabilities or special health care needs should be given the opportunity to explore and learn about these differences. Caregivers/teachers should take special care to demonstrate cultural competency, confidentiality, respect for privacy, and be generally sensitive in all communications with parents/guardians and when discussing the child and the family, particularly in discussion of an inherited condition.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.3 Process Prior to Enrolling at a Facility

8.3.0

8.3.0.1: Initial Assessment of the Child to Determine His or Her Special Needs


Children with disabilities and children with special health care needs and their families and caregivers/teachers should have access to and be encouraged to receive a multidisciplinary, interdisciplinary, or transdisciplinary assessment by qualified health providers before the child starts in the facility. This information needs to be shared, with the parents/guardians’ consent and agreement to disclose information if it is relevant to the health and safety concerns in the child care setting. If the parents/guardians consent to disclose the information and if the information is relevant to health and safety concerns in the child care setting, this evaluation should consist of the following:

  1. A medical care plan developed by the child’s primary care provider/medical home;
  2. Results of medical and developmental examinations;
  3. Assessments of the child’s behavior, cognitive functioning, or current overall adaptive functioning;
  4. Evaluations of the family’s needs, cultural and linguistic differences, concerns, and priorities;
  5. Other evaluations as needed.

The multidisciplinary, interdisciplinary, or transdisciplinary assessment should also consider a family’s needs, cultural and linguistic differences, priorities, and resources as the team develops recommendations for interventions. Such recommendations should be focused on optimizing the child’s development, health, and safety.

RATIONALE
The definitive characteristic of services for children and their families is the necessity of individualizing their care to meet their needs. Therefore, individual assessments must precede services.

The family’s needs, values, and childrearing practices are highly relevant and respected in the provision of care to the child; however, the child’s special needs continue to be the central focus of intervention.

COMMENTS
This comprehensive assessment would be done largely by an outside center, clinic, school district, or professionals who conduct evaluations of this nature. The multi-disciplinary, interdisciplinary or transdisciplinary assessment must be administered by qualified individuals using reliable and valid age and culturally and linguistically appropriate instruments and methodologies. For young children with disabilities, the designated lead agency for Part C would be responsible for conducting the initial evaluation. Under Part B (three- through five-year-olds), the school district is responsible for conducting the initial evaluation. This evaluation forms the basis of planning for the child’s needs in the child care setting and for the pertinent information available to the staff. The comprehensive assessment should be used to develop a written plan for the child’s caregivers/teachers that they believe they can implement. Relevant medical information will form the basis of the health care plan for the child in the program. This may need to be created with help of parents/guardians, child care health consultants, and medical providers.

The facility should pursue the many funding mechanisms available to supplement funding for services in the facility. Even so, caregivers/teachers can and should discuss these options with the parents/guardians as potential sources of financial assistance for the needed services. These sources might include:

  1. Medicaid, including waiver funding (Title XIX);
  2. Private health insurance and state-subsidized private health insurance under programs such as SCHIP;
  3. State or federal funds for child care, education, or for Children with Special Health Care Needs (Title V);
  4. Individuals with Disabilities Education Improvement Act (IDEA) (particularly Part C funding);
  5. Tax incentives (credits and deductions are available under federal law to most for-profit child care programs).
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
Appendix O: Care Plan for Children with Special Health Care Needs

8.4 Developing a Service Plan for a Child with a Disability or a Child with Special Health Care Needs

8.4.0

8.4.0.1: Determining the Type and Frequency of Services


The parents/guardians of a child with a disability or a child with special health care needs, the child’s primary care provider, any authorized service coordinator, any provider of intervention services, and the caregiver/teacher should discuss and determine the type and frequency of the services to be provided within the child care facility.
RATIONALE
To serve children with varying forms and severities of disabilities or special health care needs, caregivers/teachers should take a flexible approach to combine and deliver services. Parents/guardians must be involved to assure that the plan is compatible with their care and expectations for the child.
COMMENTS
In facilities that are not designed primarily to serve a population with disabilities or special health care needs, the additional therapeutic services may be obtained through consultants or arrangements with outside programs serving children with disabilities or children with special health care needs. These services may be available, as arranged, through the Individualized Family Service Plan (IFSP) or the Individualized Education Program (IEP) or through special health personnel such as RNs or LPNs under RN supervision. Most States have a case manager for Developmental Disabilities Services under a Medicaid Waiver for DD/MR children. The caregiver/teacher may become a member of the IFSP or IEP team if the parents/guardians of a child with disabilities so request.

When there is an IFSP, IDEA requires the appointment of an authorized service coordinator.

TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
8.4.0.4 Designation and Role of Staff Person Responsible for Coordinating Care in the Child Care Facility

8.4.0.2: Formulation of an Action Plan


The formulation of a plan on how to best meet the child’s needs should be based on the assessment process specified in Standards 8.3.0.1 and 8.4.0.1 and by the child’s medical care plan which is created by the child’s primary care provider in collaboration with the child care health consultant and family. Such a plan should be written, reviewed with the parents/guardians and should be maintained as part of each child’s confidential record.
RATIONALE
The plan may be developed and implemented after the parents/guardians have discussed and approved it. The facility should keep the plan as a permanent part of the child’s confidential record.
COMMENTS
All issues and questions should be dealt with during the discussion with families; consensus should be obtained and the plan written accordingly. Parents/guardians should provide written consent for the agreement to any plan before implementation for the child. Parents/guardians may revoke their consent at any time by written notice. This is standard procedure in the implementation of the Individuals with Disabilities Education Act (IDEA) for those child care programs involved with the Individualized Education Program (IEP) and the Individualized Family Service Plan (IFSP). All release of information must be in accordance with IDEA, as well as state regulations.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
8.4.0.4 Designation and Role of Staff Person Responsible for Coordinating Care in the Child Care Facility
Appendix O: Care Plan for Children with Special Health Care Needs

8.4.0.3: Determination of Eligibility for Special Services


The Individualized Family Service Plan (IFSP) or Individualized Education Program (IEP) and any other plans for special services should be developed for children identified as eligible in collaboration with the family, representatives from disciplines and organizations involved with the child and family, the child’s primary care provider, and the staff of the facility, depending on the family’s wishes, the agency’s resources, and state laws and regulations.
RATIONALE
For the IFSP, IEP, or any other needed or required special service plan to provide systematic guidance of the child’s developmental achievement and to promote efficient service delivery, service providers from all of the involved disciplines/settings must be familiar with the overall multidisciplinary or interdisciplinary plans and work toward the same goals for the child. To be optimally effective, one comprehensive IFSP or IEP is developed and one service or care coordinator is designated to oversee implementation of the plan. If the parents/guardians choose to involve them, the caregivers/teachers should be partners in developing and implementing the IFSP or IEP to obtain the best possible evaluation and plan for the child with a disability within the child care facility.
COMMENTS
Development and implementation of the IFSP or IEP is a team effort. The various aspects of planning include the input of the child care program in which the child is enrolled in the evaluation for eligibility for Part B or C, the development of IFSP/IEP, and the child care program’s role in implementation. Components of the IFSP or IEP may include elements developed to meet service needs developed elsewhere, when applicable in the child care setting.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
8.5.0.1 Coordinating and Documenting Services

8.4.0.4: Designation and Role of Staff Person Responsible for Coordinating Care in the Child Care Facility


If a child has an Individualized Education Program (IEP) or Individualized Family Service Plan (IFSP), or any plan for medical services, the child care facility should designate one person in the child care setting to be responsible for coordinating care within the facility and with any caregiver/teacher or coordinator in other service settings, in accordance with the written plan. The role of the designated person should include:

  1. Documentation of coordination;
  2. Written or electronic communication with other care or service providers for the child, including their medical home, to ensure a coordinated, coherent service plan;
  3. Sharing information about the plan, staff conferences, written reports, consultations, and other services provided to the child and family (informed, written parental/guardian consent must be sought before sharing this confidential information);
  4. Ensuring implementation of the components of the plan that is relevant to the facility.

When the evaluators who are to determine if the child has special health care needs or is eligible for services under the Individuals with Disabilities Education Improvement Act (IDEA 2004) are not part of the child care staff, the lead agency should develop a formal mechanism for coordinating reevaluations and program revisions. The designated staff member from the facility should routinely be included in the evaluation process and team conferences. Any care plan should be updated whenever the child is hospitalized or has a significant change in therapy.

RATIONALE
One person being responsible for coordinating all elements of services avoids confusion and allows easier and more consistent communication with the family. When carrying out coordination duties, this person is called a child care coordinator or service coordinator. Each child should have a care coordinator/service coordinator assigned in the child care facility at the time the service plan is developed.

With more than half of all mothers in the workforce, caregivers other than the parents/guardians (such as teachers, grandparents, foster parents, or neighbors) frequently spend considerable time with the children. These caregivers/teachers need to know and understand the aims and goals of the service plan; otherwise, program approaches will not carry over into the home environment.

This requirement does not preclude outside agencies or caregivers/teachers from having their own care coordinator, service coordinator, or case manager. The intent is to ensure communication and coordination among all the child’s sources of care, both in the facility and elsewhere in the community. The child’s care coordinator or service coordinator does not have responsibility for directly implementing all program components but, rather, is accountable for checking to make sure the plans in the facility are being carried out, encouraging implementation of the service plan, and helping obtain or gain access to services.

A facility assuming responsibility for serving children with disabilities or children with special health care needs must develop mechanisms for identifying the needs of the children and families and obtaining appropriate services, whether or not those children have an IEP/IFSP. The child care coordinator will be responsible for coordination of health services with the program child care health consultant, as needed.

COMMENTS
Usually, the person who coordinates care or services within the child care facility will not be the person assigned to coordinate overall care or provide overall case management for the child and family. Nevertheless, the facility may assume both roles if the parents/guardians so request and state law permits. The components and the role may vary, and each facility will determine these components and roles, which may depend on the roles and responsibilities of the staff in the facility and the responsibilities assumed by the family and care providers in the community. The person who coordinates care or services within the child care facility may be the Health Advocate or someone else who is working closely with the child’s family and the teaching staff in the facility.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.4.0.5: Development of Measurable Objectives


The individualized service or treatment plan for a child with disabilities or a child with special health care needs should include services aimed at enhancing and improving the child’s health and developmental functioning, based on measurable, functional outcomes agreed to by the parents/guardians. Each functional outcome objective should delineate the services, along with the designated responsibility for provision and financing. The development of the plan and its goals and objectives should not only include the child care agency staff, but all of the professionals, including various therapists and/or consultants, who will have the responsibility to assure its implementation.

With the assistance of the child’s service coordinator, the caregiver/teacher should contribute to the assessment of measurable outcome objectives (service plan) within the child care setting at least every three months, or more often if the child’s or family’s circumstances change, and should contribute to a full, documented case review each year. Reevaluations should consider a self-assessment by the caregiver/teacher of the caregiver’s competence to provide services that the child requires.

Service reviews should involve the child care staff or persons providing the intervention and supervision, the parents/guardians, and any independent observers. The results of such evaluations should be documented in a written plan given to each of the child’s caregivers/teachers and the child’s family. Such conferences and lists of participants should be documented in the child’s health record at the facility.

Each objective should include persons responsible for its monitoring.

RATIONALE
When measurable-outcome objectives form the basis for the service plan, the family and service providers jointly formulate the expected and desired outcomes for the child and family. By using measurable-outcome objectives rather than service units, all interested parties can concentrate on how well the child is achieving the outcome objectives. Thus, for example, progress toward speech and language development assumes more importance than the number of hours of speech and language therapy provided.

Further, measurable outcome objectives constitute an individualized approach to meeting the needs of the child and family and, as such, can be integrated into, but are not solely dependent upon, the array of services available in a specific geographic area. The measurable-outcome objectives will provide the facility with a meaningful framework for enhancing the child’s health and developmental status on an ongoing basis.

Regularly scheduled reassessments of the outcome objectives provide the family and service providers with a framework for anticipating changes in the kind of services that may be needed, the financial requirements for providing the services, and identification of the appropriate service provider. The changing needs of children with disabilities and/or special health care needs do not always follow a predictable course. Ad hoc reevaluations may be necessitated by changes in circumstances.

COMMENTS
The defining of measurable objectives provides a useful structure for the caregiver/teacher and aids in assessing the child’s progress and the appropriateness of components of the service plan. Though this principle should apply to all children in all settings, implementation, especially in small and large family child care homes, will require ongoing assistance from and participation of specialists, including those connected with programs outside of the child care setting, to provide the needed services.

Many facilities that provide intervention services review the child’s progress at least every three months. This is not a comprehensive review, but an interim analysis of the progress toward meeting objectives and to decide if any modifications are needed in the service plan and its implementation. Generally, the entire plan and the child’s progress receive a comprehensive review annually. It is likely that caregivers/teachers will need training on development of goals and the means of assessing progress.

It is assumed that staff members who interact with the child will have the training described in Pre-service Qualifications and Special Training, Standards 1.3.1.1-1.3.3.1, and Training, Standards 1.4.2.1-1.4.6.2, which includes child growth and development. These topics are intended to extend caregivers’/teachers’ basic knowledge and skills to help them work more effectively with children who have disabilities or children who have special health care needs and their families. Caregivers/teachers should have a basic knowledge of what constitutes a disability or special health care need, supplemented by specialized training for children with disabilities and children with special health care needs. The number of hours offered in any in-service training program should be determined by the experience and professional background of the staff.

Training and other technical assistance can be obtained from the following sources:

  1. American Academy of Pediatrics (AAP);
  2. American Nurses Association (ANA);
  3. National Association for the Education of Young Children (NAEYC) and its local chapters;
  4. National Association of Pediatric Nurse Practitioners (NAPNAP) Child Care Special Interest Group;
  5. National Association of School Nurses (NASN);
  6. State and community nursing associations;
  7. National therapy associations (e.g., National Rehabilitation Association, Association for Behavioral and Cognitive Therapies);
  8. National Association of Child Care Resource and Referral Agencies (NACCRRA) and its local resource and referral agencies;
  9. Federally funded University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD);
  10. Local children’s hospitals;
  11. Other colleges and universities with expertise in training people to work with children who have special needs;
  12. Community-based organizations serving people with disabilities and/or special health care needs (e.g., Autism Society of America, United Cerebral Palsy Associations, The ARC, Easter Seals, American Diabetes Association, American Lung Association, Epilepsy Foundation, etc.);
  13. Zero to Three Policy Network.

The state-designated lead agency responsible for implementing IDEA may provide additional help. If the child has an IFSP, the lead agency will be responsible for coordinating the review process. If the child has an IEP, the local education agency will be responsible for seeing that the review occurs. If not, a less formal evaluation process may need to be conducted.

Assessments may be the financial responsibility of the IDEA Part C State-designated lead agency or other organizations (see Standard 8.4.0.6). Funding available through implementation of IDEA Part C should provide resources to assist in implementing the IFSP.

TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
8.4.0.2 Formulation of an Action Plan

8.4.0.6: Contracts and Reimbursement


If a child with a disability and/or special health care needs has an Individualized Family Service Plan (IFSP), the lead agency may arrange and contract for specialized services to be conducted in the child care facility in addition to the child’s home and other natural environments. If a child with disabilities or special health care needs has an Individualized Education Program (IEP), the local education agency may arrange and contract for specialized services to be conducted in the child care facility.

If the child or the specialized service or intervention is not covered by IEP/IFSP:

  1. The caregiver/teacher should cover the cost when the service is reasonable and necessary for the child to participate in the program;
  2. The parents/guardians or source arranged by the parents/guardians should cover the cost when the service is not a reasonable expectation of the caregiver/teacher or if it is provided while the child is in child care only for convenience and is separately billable (such as speech and language therapy).
RATIONALE
Child care facilities may have to collaborate with other service providers to meet the needs of a child and family, particularly if the number of children who require these services is too few to maintain the service onsite. To achieve maximum benefit from services, those services should be provided in the setting that is the most natural and convenient for the child and family. Whenever possible, treatment specialists (therapists) should provide these services in the facility where the child receives daytime care.

“Reasonableness” is a legal standard that looks at the impact of cost and other factors.

COMMENTS
The agency that has evaluated the child and/or is planning the entire service plan, or the facility, should make the arrangements. The specific methods by which these services will be coordinated with the child care facility is determined locally.

The facility should pursue the many funding mechanisms available to supplement funding for services in the facility. Even so, caregivers/teachers can and should discuss these options with the parents/guardians as potential sources of financial assistance for the needed accommodations. These sources might include:

  1. Medicaid, including waiver funding (Title XIX);
  2. Private health insurance, publicly subsidized private health insurance such as under the state child health insurance program (SCHIP);
  3. State or federal funds for child care, education, or for children with special health care needs (Title V);
  4. Individuals with Disabilities Education Improvement Act (IDEA) (particularly Part C funding);
  5. Community resources (such as volunteers, lending libraries, and free equipment available from community-based organizations);
  6. Tax incentives (credit and deductions are available under federal law to most for profit child care programs);
  7. Local Community Development Block Grants (CDBG) and other community development funding.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.5 Coordination and Documentation

8.5.0

8.5.0.1: Coordinating and Documenting Services


Services for all children should be coordinated in a systematic manner so the facility can document all of the services the child is receiving inside of the facility and is aware of the services the child is receiving outside of the facility. If the parents/guardians of a child with disabilities or a child with special health care needs so choose, the facility should be an integral component of the child’s overall service plan.
RATIONALE
Coordination of individualized services is a fundamental component in implementing a plan for care of a child with special health care needs. This is particularly true of the need to coordinate the overall child care with specialized developmental services, therapies, and child care procedures in the facility.
COMMENTS
Children with Individualized Family Service Plans (IFSP) have a service coordinator; children with Individualized Education Programs (IEP) have a primary provider or other identified service coordinator. These are the contact persons within the local education agency or lead agency. This method of service coordination is consistent throughout all of the states under the Individuals with Disabilities Education Improvement Act (IDEA). Caregivers/teachers need to become informed of how this system works and what their responsibilities are.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
8.4.0.4 Designation and Role of Staff Person Responsible for Coordinating Care in the Child Care Facility

8.5.0.2: Written Reports on IFSPs/IEPs to Caregivers/Teachers


With the prior written, informed consent of the parents/guardians in the parents/guardians’ native language, child care facilities may obtain written reports on Individualized Family Service Plans (IFSPs) or Individualized Education Programs (IEPs), conferences, and treatments provided.
RATIONALE
This information is confidential and parental/guardian consent for release is required if the child care facility is to gain access to it. Written documentation ensures better accountability.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.6 Periodic Reevaluation

8.6.0

8.6.0.1: Reevaluation Process


The facility care coordinator should ensure that formal reevaluations of the child’s functioning and health care needs in the child care setting and the family’s needs are conducted at least yearly, or as often as is necessary to deal with changes in the child’s or family’s circumstances. Medical care plans should be reviewed and revised if needed whenever there is a significant health event such as a hospitalization, or at least annually. This reevaluation should include the parents/guardians and caregiver/teacher. Such conferences and lists of participants should be documented in the child’s health record at the facility.
RATIONALE
The changing needs of children with disabilities and children with special health care needs do not follow a predictable course. A periodic, thorough process of reevaluation is essential to identify appropriate goals and services for the child. The child’s primary care provider or medical home and the program’s child care health consultant should be involved in the development and reevaluation of the plan. A child’s health is such an integral part of his or her availability to learn and to retain learned information that health- and development-related information is critical for a complete review/reevaluation process to occur.
COMMENTS
Though regular intervention services are recommended for review at three-month intervals, ad hoc reevaluations may be necessitated by changes in circumstances.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home
RELATED STANDARDS
8.4.0.5 Development of Measurable Objectives

8.6.0.2: Statement of Program Needs and Plans


Each reevaluation conference should result in a new statement of program needs and plans which parents/guardians have agreed to and support.
RATIONALE
Continued collaboration, participation, and coordination among all involved parties are essential.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.7 Assessment of Facilities for Children with Special Needs

8.7.0

8.7.0.1: Facility Self-Assessment


Facilities that serve children with special health care needs and children with disabilities eligible for services under IDEA 2004 should have a written self-assessment developed in consultation with an expert multi-disciplinary team of professionals experienced in the care and education of children with disabilities and children with special health care needs. These self-assessments should be used to create a plan for the facility to determine how it may become more accessible and ready to care for children with disabilities and children with special health care needs. The facility should review and update the plan at least every two years, unless a caregiver requests a revision at an earlier date.
RATIONALE
A self-assessment stimulates thought about the caregiver’s/teacher’s present capabilities and attitudes and the medical and educational particulars of a range of special health care needs and disabilities. Also, parents/guardians will have the opportunity to review the records of the written self-assessment and decide whether a facility is well-prepared to handle children with, for example, developmental delays, cognitive disabilities, or hearing impairment but is not able to offer proper care to a child with more complex medical needs.
COMMENTS
Under both the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973, a program must make reasonable accommodations in order to serve a child with disabilities and/or special health care needs. Often, if architectural or other major changes are made to accommodate a particular child with physical or other disability, many other children and adults are helped by the changes. An important source of information for self-assessment is interviewing the parents/guardians of children with disabilities and/or special health care needs to see how well the program is working for their family and what could be improved. “Reasonableness” is a legal standard that looks at cost and other ADA criteria. Section 504 applies to recipients of federal funds. The ADA extends coverage to private entities that do not receive federal funds.

Parents/guardians have the right to choose which child care program will care for their child. Self-assessment should be done to evaluate what the program needs to do to be more inclusive by developing staff capability and program activities to accommodate the child’s needs.

SpeciaLink: The National Centre for Child Care Inclusion, at the University of Winnipeg (http://www.specialinkcanada.org) has developed an inclusion scale much like ECERS to determine how well a program is providing inclusive care.

TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.7.0.2: Technical Assistance in Developing Plan


The caregiver/teacher should seek technical assistance in developing and formulating the plan for future services for children with special health care needs.
RATIONALE
Assistance is needed where caregivers/teachers lack specific capabilities.
COMMENTS
Documentation of the caregiver’s/teacher’s request and of the regulating agencies’ responses in offering or providing assistance furnishes evidence of compliance. State regulatory agencies should be in a position to provide such assistance to facilities.

Training and other technical assistance sources can be obtained from or arranged by the following:

  1. Child’s primary care provider;
  2. Program’s child care health consultant;
  3. Local children’s hospital;
  4. American Academy of Pediatrics (AAP);
  5. National Association of Pediatric Nurse Practitioners (NAPNAP);
  6. American Nurses Association (ANA);
  7. National Association of School Nurses (NASN);
  8. State and community nursing associations;
  9. National therapy associations (e.g., National Rehabilitation Association, Association for Behavioral and Cognitive Therapies);
  10. Local resource and referral agencies;
  11. Federally funded University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD);
  12. Other colleges and universities with expertise in training others to work with children who have special health care needs;
  13. Community-based organizations serving people with disabilities and/or special health care needs (e.g., Autism Society of America, United Cerebral Palsy Associations, ARC, Easter Seals, American Diabetes Association, American Lung Association, Epilepsy Foundation, etc.);
  14. ADA regional technical assistance offices.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.7.0.3: Review of Plan for Serving Children with Disabilities or Children with Special Health Care Needs


The facility’s plan for serving children with or children with special health care needs should be reviewed at least annually to see if it is in compliance with the legal requirements of the Individuals with Disabilities Education Improvement Act (IDEA 2004) and Americans with Disabilities Act (ADA), as well as Section 504 of the Rehabilitation Act of 1973 (if it receives federal funding and is achieving the overall objectives for the agency or facility).
RATIONALE
An annual review by caregivers/teachers is a cornerstone of any quality assurance procedure.
TYPE OF FACILITY
Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

8.8 Additional Standards for Providers Caring for Children with Special Health Care Needs

Standard 1.1.1.3: Ratios for Facilities Serving Children with Special Health Care Needs and Disabilities

Standard 1.3.1.1: General Qualifications of Directors

Standards 1.3.2.2 and 1.3.3.1: Qualifications for Caregiving Staff

Standards 1.4.2.1-1.4.2.3: Orientation Training

Standard 1.4.3.1: First Aid and CPR Training for Staff

Standards 1.4.4.1-1.4.4.2: Continuing Education

Standard 1.6.0.1: Child Care Health Consultants

Standard 2.1.2.5: Toilet Learning/Training

Standard 2.3.1.1: Mutual Responsibility of Parents/Guardians and Staff

Standards 2.3.1.2-2.3.3.2: Parental/Guardian Participation

Standard 3.4.3.1: Emergency Procedures

Standard 3.5.0.1: Care Plan for Children with Special Health Care Needs

Standard 3.5.0.2: Caring for Children Who Require Medical Procedures

Standards 4.2.0.8-4.2.0.9: Feeding Plans/Modifications and Menus/New Foods

Standard 4.2.0.10: Care for Children with Food Allergies

Standard 5.1.1.4: Accessibility of Facility

Standard 5.1.2.1: Space Required Per Child

Standard 5.1.4.2: Evacuation of Children with Special Health Care Needs and Children with Disabilities

Standard 5.1.4.7: Access to Exits

Standard 5.3.2.1: Therapeutic and Recreational Equipment

Standards 5.3.2.2-5.3.2.3: Special Adaptive Equipment

Standard 5.4.6.2: Space for Therapy Services

Standard 5.6.0.1: First Aid and Emergency Supplies

Standards 6.5.1.1 and 6.5.2.2: Transportation

Standard 9.2.2.1: Planning for Child’s Transition to New Services

Standard 9.2.3.4: Written Policy for Obtaining Preventive Health Service Information

Standards 9.2.3.6-9.2.3.7 and 9.4.2.8: Information Exchange/Release of Records

Standard 9.4.2.1: Contents of Child’s Records

REFERENCES:

1. The Individuals with Disabilities Education Act. 2004. 20 USC § 1400.

2. The Education for All Handicapped Children Act. 1975. 20 USC § 1400.

3. Dugan, S. 1986. Education of the Handicapped Act amendments of 1986. Alexandria, VA: Capitol Publications.

4. The Americans with Disabilities Act. 1990. 3 USC § 421.

5. The Rehabilitation Act. 1973. 29 USC § 701.

6. State of Florida Department of Education Technical Assistance and Training System. 2010. System level considerations for inclusion. TATS eUpdate: Inclusion/Program Effectiveness (March). http://www.tats.ucf.edu/docs/eUpdates/Inclusion-11.pdf.