Families of Children with Special Needs

Children with special needs are members of our communities, programs, and families, and it is our responsibility to provide high-quality and inclusive services. While there are often additional situations and stressors associated with raising a child with special needs, these families have hopes, dreams, and concerns for their children just like other families. You can positively impact families of children with special needs by empowering them with knowledge, empathizing with their feelings, and collaborating with other support professionals in families’ lives.

Working with Families of Children with Special Needs

Forming meaningful relationships with families is an important part of your work, and your communication is especially important when working with the families of children with special needs. Some children will enter your program with known special needs, 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 agee three and older who receive special education services (IDEA Part B) will have an individualized education program (IEP). Others 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 for assistance connecting to services or agencies outside your program. It may be helpful 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 an evaluation process may ask a program staff member to complete questionnaires or provide input at the request of a doctor, specialist, or teacher. 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 task have time to complete this request. 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. Parents or a Local Education Agency (LEA) can request that you or someone from your program participate in a child and family's IFSP or IEP review. This is when 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. 

Modeling Effective Practices

The first step to establish strong relationships with families of children with special needs is to discover their 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 (Sandall, Hemmeter, Smith, & MClean, 2005). 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, 2004). 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 that reflect family-centered practice. Then, think about which of these you can use in your work with families of children with special needs in your program (Turnbull, Turbiville, & Turnbull, 2000).

• Recognize the family as a constant in the child’s life; caregivers and service systems may come and go
• Facilitate collaboration between families and professionals
• Honor and respect family diversity in all dimensions (cultural, racial, ethnic, linguistic, spiritual, and socio-economic)
• Recognize family strengths and the different approaches that families may use in coping
• Share unbiased and honest information with family members on an ongoing basis
• Encourage family-to-family support and networking
• Acknowledge and incorporate the developmental needs of the child and other family members into your practice
• Design and implement services that are accessible, culturally and linguistically respectful and responsive, flexible, and based on family-identified needs

Supporting Staff Members’ Work with Families

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:

• Remind yourself that your role is to support families’ hopes and dreams for their child.
• Be patient. Dealing with a child with special needs may be challenging at times, and family members need time to navigate this experience at their own pace.
• Avoid making judgments on families and their children.
• Consider difficult times as opportunities to build trust between yourself and families.
• Question your assumptions about working with families of children with special needs and urge other professionals you know to do the same. To learn more about what to observe in staff members, watch this video from Kids Included Together (KiT; www.kit.org).

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.