What do educators need to understand about families of children with disabilities?
Page 3: Additional Roles of Families
Another consideration educators should keep in mind is that the families of children with disabilities often assume roles and responsibilities that extend beyond those typically associated with more conventional parental roles. These additional roles may:
- Create considerable time demands
- Require more specialized knowledge and skills
- Require more effort and attention
For example, most parents schedule and take their child to annual medical appointments; however, parents like Luz Hernandez shoulder additional roles and responsibilities. Listen as she discusses the roles she assumed when raising her son who has a disability (time: 1:28).
Luz A. Hernandez
Parent of a young adult with a disability
Executive Director, Hispanos Unidos Para
Niños Excepcionales (HUNE)
The roles and responsibilities described by Luz Hernandez were centered around her child’s medical condition. However, the roles parents assume will vary, depending on the needs of their own children. The table below describes some of the additional roles that the parents of a child with a disability might assume.
|Overseeing all educational, health, and related services for the purpose of communicating and coordinating the care of the child
|Understanding the medical issues surrounding the child and his or her disability or medical condition and communicating to others involved in the child’s care as well as navigating insurance coverage, denials, and appeals
|Speaking out in the best interest of the child
|Ensuring that the child is included in typical classroom activities and routines as much as possible
|Creating continuity by easing the transition between teachers, grades, schools, and post-school environments (e.g., college, vocational school, employment)
|Personal Future Planner
|Assisting in planning for the child’s future (e.g., college, employment, financial arrangements) by exploring all areas of interest, aptitude, strengths, and needs
Listen to Anne Henderson talk about the roles of families who have children with disabilities and how educators can support them (time: 2:30).
Anne T. Henderson
Senior Consultant, National Association for Family,
School, and Community Engagement
For Your Information
It’s important to remember that the additional roles taken on by the parents of students with disabilities affect the entire family, including the child’s siblings. These children often:
- Experience varied emotions — Much like their parents, siblings may experience a range of feelings: empathy, pride, love, jealousy, embarrassment, fear, and guilt. And these emotions can occur in any sequence.
- Become responsible and independent — Siblings might also be required to take on additional roles to help care for the child with a disability or become more independent in caring for themselves. In some instances, these children may not be able to engage in extracurricular activities or social events with their peers due to their need to help the family or the time restraints of their parents.
- Feel left out or even neglected — At times, siblings may receive less attention from their parents. The demands created by the additional roles taken on by their parents can limit the amount of time and energy they have to spend with their children.
- Develop positive characteristics — Siblings are frequently cooperative, patient, accepting of others’ differences, and resilient. These characteristics are often enhanced by their interaction with their sibling with a disability and generalized into their daily interactions with others.
Listen to Aubri Girardeau talk about how her son Caleb has been impacted by having a sibling with a disability (time: 0:53).
Mother of a child with autism
and specific learning disabilities
In some circumstances, the additional roles adopted by families will last only a little while; in others, and depending on the complexity of the child’s disability, those roles may last a lifetime. For many families, these new responsibilities can be both time-consuming and overwhelming. These time demands can result in less time for the parents to commit to school activities. To support these families, educators can:
- Accommodate their schedules
- Listen and respond to their concerns
- Help them learn to navigate the education and social service systems
- Assist them with finding support networks