Teach

Families of Children with Special Needs

Children with disabilities are members of our communities, programs, and families, and it is our responsibility and commitment to provide high-quality, inclusive services for these children and their families. While these families often experience additional situations and stressors, they have hopes, dreams, and concerns for their children just like every other family. You can positively impact families of children with disabilities by empowering them with knowledge, empathizing with their feelings, and collaborating with other support professionals in their lives.

Within the VLS, the terms "special needs" and "disability" are often used interchangeably. It is important to note that while the two terms have similar meanings, the word "disability" is generally used to refer to a long-term condition or impairment that impacts the way a child or youth learns, participates, or interacts with the world around them. The term "special needs" often refers to additional supports or assistance a child or youth may need within an educational, developmental, behavioral, or health context. Language is a powerful tool that can create a sense of identity, purpose, and pride and is particularly important to consider when working with children and families. One critical way to empower families of children with special needs is to have a dialogue with them around their preferred language when referring to their individual child’s unique needs and abilities.  

It’s also important to remember that disability is part of human diversity, and it is an important part of staff and family members’ experiences, too. Disabled adults work in your program, register their children in your program, and lead your communities. Some disabilities are visible, and others are not. The strategies you learn in this lesson will help you build a vibrant, welcoming community.

Working with Families of Children with Special Needs

Establishing meaningful relationships with families is a critical part of your work, and your communication is especially important when working with families of children with special needs. Some children will enter your program with a known disability, and other families will learn that their child has a disability while enrolled in your program. Families with eligible children ages birth to three may receive early intervention (IDEA Part C) services and have an individualized family service plan (IFSP); while eligible children ages three and older who receive special education services (IDEA Part B) will have an individualized education program (IEP). Preschool and school age youth may also qualify for what are known as 504 Plans, which outline the adaptations and accommodations that will help a child be successful in educational environments. Other children and youth may only receive support from a medical center, and some families will be involved with multiple systems of support. Regardless, families can be overwhelmed by what feels like a constant flow of suggestions and appointments to help their children learn and develop. These families often need more help supporting their children’s development and may turn to you, or others in your program, for assistance connecting to services or agencies outside your program. It may be helpful for you or an administrator to form relationships with community agencies, so you have up-to-date information on how to make referrals and the types of services offered. Positive interactions with families and other supportive individuals in their lives can improve families’ well-being and minimize stress.

Families going through evaluation processes may ask a program staff member to complete questionnaires or provide input at the request of a doctor, specialist, or teacher. Other professionals rely on this input, especially when they have a limited amount of time with children compared to program staff who often spend many hours each week caring for, educating, and observing children. This information can be used to help determine if a child has a specific condition, support the child outcomes summary (COS) process, determine eligibility for specific services, and develop outcomes for an IFSP or IEP. It’s important that the staff member asked to do this have time to complete this request. Parents or a Local Education Agency (LEA) may request that you or someone from your program attend eligibility meetings or reviews for IFSPs and IEPS. During these reviews the team of professionals come together with families to assess progress, develop new outcomes, and determine needed services and accommodations. Working with professionals from outside agencies helps things run smoothly for families and ensures that all of the professionals and caregivers in a child’s life are communicating. This lessens family stress by reducing the need for primary caregivers to act as the in-between messenger of important information.

Model

The first step to establishing strong relationships with families of children with special needs or disabilities (and all families) is to reflect on your own assumptions about families. What are your own assumptions about parenting and child-rearing? What are your personal and professional values and beliefs about disability? How much do you know about the values and beliefs of the families in your program? The next step is to discover families’ wishes and concerns for their children and to learn about the meaningful activities they participate in at home. Maintaining this communication throughout a child’s time in your program is essential. Ask questions and find out about strategies that work at home and consider using those in the program. At the same time, help staff members share their own thoughts about children’s strengths and their concerns about children’s development. Staff members may need your support before sharing concerns with families to ensure they are using family-centered practice and are prepared to support families if they choose to take steps or reach out to outside agencies and programs. For families already receiving support from other professionals, ongoing communication with both families and professionals is critical to maintain consistency between program and home environments. When all the caregivers in a child’s life are consistently using effective strategies to promote development and outcomes, children are more likely to benefit and learn new skills.

In your collaboration with families, acknowledge and respect their strengths and unique backgrounds, as well as their ability to make decisions that are right for them (Hanson & Lynch, 2013). This means that although family wishes and decisions may be different from what you would prefer, these have to be respected.

Take a look at the following guidelines developed by the Early Childhood Technical Assistance Center (2020), to reflect family-centered practice and think about which of these you can use in your work with families of children with disabilities in your program:

You can help strengthen all families in your program by helping build family-to-family support and networking. Families can be the greatest source of support and resources for one another.  Families can help one another navigate complex school and medical systems. Friendships can also help relieve stress and build social supports among families.

Observe

There are many ways staff members in your programs can demonstrate respect and consideration for families of children with special needs. Look for ways staff members do the following:

• Acknowledge that families know their child best and ask them questions about services or resources that may be helpful.
• Establish ongoing communication between home and school. Communication journals are a great way of doing that. These are usually sent home with the child and returned the next day. Staff members can share noteworthy observations or events, and families can respond to those or share their own news or reflections. While communication journals can be used with families of all children, when it comes to children with special learning needs, they can be a valuable tool in establishing consistency between home and school environments.
• Incorporate children’s books that reflect consideration of multiple abilities and differences in the curriculum.
• Invite families to talk about their children with special needs. For example, a family member may come in your program and talk about their child’s use of adaptive equipment (e.g., braces, wheelchair, or a communication device). The family member may explain the use of equipment, and this can help children and other families understand aspects of their life. This also promotes acceptance of differences.
• Be a team player! Work collaboratively with families and other professionals who may be involved in the delivery of services to children with special learning needs.

If disagreements or miscommunications arise, consider the following:

PUBLICRemember that you play a critical role in supporting the inclusion of children with special needs. If there is a specific plan such as an IFSP, IEP, or behavior intervention plan, you may participate in those teams and decision-making. Familiarize yourself with these processes, and learn about individual plans for each child in your program. Provide support to staff if they need help implementing recommendations, communicate with families about their observations of their children at home, and work with outside professionals as needed.