Chapter 15: Families of Children with Special Needs or Special Health Care Needs

Introduction

Children with disabilities or other special needs refers to children with a specific diagnosis, as well as children who do not have a diagnosis but whose behavior, development, and/or health affect their family’s ability to maintain child care services. The disability or special need may be as mild as a slight speech delay or as complex as a mixed diagnosis of motor challenges, vision impairment, and cognitive delays.^[1] Special health care needs include a variety of conditions such as birth defects, neurological disorders, and chronic illnesses that can be life threatening or impact daily living (e.g., cancer, sickle cell disease [or anemia], cystic fibrosis, hemophilia, AIDS, diabetes, juvenile rheumatoid arthritis).^[2]

Families of children with disabilities or other special needs have the same need for child care as do other families. However, families of children with disabilities or special needs often find the search for quality and affordable child care a greater challenge as they face the reluctance of many child care providers to enroll their children. This situation makes it all the more important that child care providers strive to include all children in their programs so as not to increase the immense challenges that such families already face.^[3]

In accordance with the Individuals with Disabilities Education Act (IDEA), children ages 3-21 are entitled to a free, appropriate public education (FAPE) in the least restrictive environment (LRE). LRE requires that, to the extent possible, children with disabilities should have access to the general education curriculum, along with learning activities and settings that are available to their peers without disabilities. Corresponding federal legislation applied to infants and toddlers (children birth to 3) and their families specifies that early intervention services and supports must be provided in “natural environments,” generally interpreted to mean a broad range of contexts and activities that generally occur for typically developing infants and toddlers in homes and communities.^[4]

It is critical that children with disabilities or other special needs, and their families, are included in quality early childhood education programs that are the natural environments of their peers who are typically developing. Children learn from their interactions with other children and their surroundings while developing a sense of security and self-esteem from caring relationships with program providers and staff. Everyone benefits from quality early childhood education programs that provide inclusive care. Children who have a disability or special need get to know and interact with typically developing peers, while their families benefit from programs and services they need to achieve their parenting goals. Children who are typically developing benefit when they have the opportunity to get to know peers who are atypically developing in the classroom. Everyone has the opportunity to learn about other human beings in regard to their strengths and challenges.

Figure 15.1: Children of all abilities should be included in high quality ECE classrooms.^[5]

Children and families want to be accepted and included in their community regardless of ability. They want to truly belong. But the kind of belonging they desire goes beyond simply “being together.” They want full, unconditional membership in family and community. As Norman Kunc, a disability rights advocate, said so eloquently, “When inclusive education is fully embraced, we abandon the idea that children have to become ‘normal’ in order to contribute to the world. Instead, we search for and nourish the gifts that are inherent in all people. We begin to look beyond typical ways of becoming valued members of the community and, in doing so, begin to realize the achievable goal of providing all children with an authentic sense of belonging.”

Children with disabilities or other special needs may present unique challenges, but the care they need is very similar to that needed by any child. Children with special needs spend most of their time doing what other children do. They have the same curiosity, desire to play, and need to communicate as their peers do. Childcare providers who are providing developmentally appropriate childcare, which is individualized to meet the needs of each and every child, already have many of the skills needed to serve children with disabilities or other special needs.^[6]

What Programs Can Do To Be Inclusive of All Children

Most children identified by special education professionals as having a disability have delays in learning and communication (over 70 percent of children from birth to age 14). What is more important is that learning disabilities are often not recognized or identified until children begin formal schooling. Children who learn differently or have delays in language commonly manifest special needs through their behavior in group settings. Early childhood educators can provide a language­-rich environment and make accommodations based on knowledge of the individual child.

There are fewer children with more significant disabilities such as intellectual disabilities (formerly referred to as mental retardation), physical and mobility impairments, or multiple disabilities. When children do have significant disabilities, they are likely to be receiving specialized services that may support success in a child care setting. Children who are eligible for and who receive early intervention or special education services have individual plans with goals and strategies for caregivers and providers to use. For children under age three, the plans are called individualized family services plans (IFSPs); for children over age three, the plans are called individualized education programs (IEPs). Early childhood educators can be an important member of an IFSP or IEP team when these plans are being developed.

Learning about Individual Children

Information about a specific disability may give an early childhood educator ideas for how to support a child. When serving an individual child, however, the provider should focus on the child’s needs, not the disability or its label. A child with cerebral palsy, for example, may walk with leg braces, use a wheelchair, have minor physical symptoms, or demonstrate a delay in using language. The possible variations within this one label are tremendous, demonstrating that no single label or diagnosis can provide enough information about a particular child. Early childhood educators need to learn beyond a textbook definition and ask questions with sensitivity and understanding—particularly in talks with parents.

Early childhood educators can go far toward setting a tone of welcome and understanding. When a family member shares a child’s diagnosis, a good follow-­up question is often “And how does that affect ____________’s development?” This approach can help assure a family member that the child care provider is sincerely concerned about the success of the child and is interested in providing appropriate, individually tailored care. The response from the parent will help the child care provider determine what accommodations might be needed, what other questions may be appropriate to ask, and whether specialists are involved or needed.

Promoting Inclusive Practices

Even if children with disabilities are not currently enrolled in an early childhood education program, educators can still promote inclusive practices. One way is to have pictures, books, and materials that present children with disabilities in a general setting. How people are alike and different naturally arises in an early childhood education setting; a caregiver can take advantage of these opportunities to discuss them. Language use is also critical in developing an atmosphere of inclusion. The best practice is to use “person-­first” language when one is talking about people with disabilities. This practice simply means putting the person before the disability: “a child with autism spectrum disorder” rather than “an autistic child.”

The process of exploring inclusion with families, colleagues, and children will suggest other ways to expand inclusive practices. For example, planning staff discussions on specific changes in philosophy, attitudes, and practices goes far toward including children with special needs in a child care setting. Outside the immediate early childhood education program setting, adults with disabilities in a community might contribute to a care provider’s expanding knowledge of issues related specifically to inclusion and to disabilities in general.

Successful Inclusion of Children with Special Needs

As each child is unique, so is each early childhood education program. There is no magic formula for making inclusion work beyond the creativity, energy, and interest that most early childhood educators already bring to their work. Their uniqueness notwithstanding, every program is able to successfully include children with disabilities. And each makes it work child by child, day by day. A “can-do” attitude among the teachers helps to provide the necessary energy for coming up with solutions to the inevitable challenges. It also helps to have an enthusiastic attitude on how to make inclusion work rather than to simply fulfill a legal obligation.

Some children need small changes to the curriculum or minor supports in order to get the most out of certain activities. These sorts of things may consist of fairly simple accommodations, such as providing a special place or quiet activity for a child who is unable to participate in large-group activities or making available a special snack for a child who needs to eat more frequently than the typical meal or snack schedule.

Figure 15.2: Individual children’s needs will help you decide what adaptations you need to make.^[7]

Other children may require more specific adaptations that might not be readily apparent. A variety of community resources can be helpful in determining what those might be. The family, for example, is always the first and most important guide for what a child might need; after that, an area specialist or a local workshop might be. Beyond the immediate community, a world of literature in books, periodicals, and Web sites devoted to disabilities and inclusion can inform an early childhood educator about appropriate adaptations for a child with a particular condition or need.

Programs that begin with a high-quality, developmentally appropriate foundation; a positive attitude on the part of the care provider; appropriate adult–child ratios; supportive administrators; and adequate training for the provider will be in a good position to creatively solve problems for a child with disabilities or other special needs, exactly as it does for children who are typically developing. If a child already has an established diagnosis, trained intervention personnel may be available to assist in this process. One of the biggest roles for a care provider is to facilitate a sense of belonging and inclusion. Several helpful strategies are as follows:

• Start with the assumption that all children are competent.
• Adapt the environment so that it is developmentally appropriate, challenging, and fits the needs and interests of each child.
• While there may be a need to support a child’s mastery of a specific skill, keep the whole child in mind, particularly the child’s social-emotional experience.

Consider the following questions when adapting an activity for a child with special needs:

• Does the child have an opportunity to be in control of the learning experience?
• Is there a balance between adult-initiated learning and child-initiated learning?
• Can the child make choices while learning the skill?
• Is the child able to initiate his/her own efforts to practice the skill, with support given by the child care provider?
• Is the child gaining self-confidence and showing the joy of accomplishment while learning?
• Is there room in the activity for the child to make discoveries?

Collaborating for Inclusion

To effectively meet the needs of children with differing abilities and learning characteristics, early childhood educators may need to expand the way in which they reach out to families and link with specialists. These two groups of people have important information to share and can serve as resources to support children in a program. Their suggestions invariably enrich efforts at inclusion. Specialists themselves may even be able to visit a care facility and offer some on-site guidance.

Figure 15.3: Collaboration provides valuable support and insight.^[8]

Providing inclusive early childhood education does not mean a teacher—or even a group of teachers—has to do the work alone. Everyone has a role to play. The primary role of an early childhood educator is to nurture and support the child’s development in a loving and caring manner. Partnerships formed with other adults who are caring for the child—the parents, health-care providers, or specialists—can complement the efforts of all concerned, especially when everyone concentrates on a particular strength. When the expertise of many are combined, ideas develop and strategies emerge that are better than those any one person could have developed alone. The result is the essence of true collaboration.

For collaboration to be successful, the following elements are essential:

• Respect for family’s knowledge and experience with the child. They are the first and best resource and should be included in planning and implemented care of their child.
• Clear and regular communication, both informal or planned meetings.
• Time reserved for collaboration, recognizing that everyone is likely going to be pressed for time.
• Everyone having an investment and active involvement.
• Collaborative efforts to provide the appropriate assessments and support services for the child.

More information about identifying children with special needs and providing inclusive care can be found in the publication Inclusion Works by the California Department of Education.

Summary

Teachers will have children in their classrooms with diagnosed and undiagnosed special needs, including those related to their health. Early childhood programs have legal obligations to provide inclusive programs and inclusion benefits for everyone involved (children with special needs, their peers that do not have special needs, families, and teachers).

Having a solid foundation in developmentally appropriate practice, which includes the importance of learning about and meeting the needs of each individual child, goes a long way to providing inclusive early education. Support, accommodations, and collaboration are essential to providing inclusive early childhood education programming.