What do teachers need to understand about working with families who have children with disabilities?

Page 3: Additional Roles of Families

 lady with pencilAmong the challenges faced by families who have a child with a disability is that of adapting to new roles and to the additional time that goes along with them. Such roles may encompass and extend far beyond those of soccer mom, birthday party chaperone, room parent, carpool driver, or any of the roles that are most commonly associated with raising a child. Read through the table below to learn about some of the roles that parents may be called upon to fill for their children.

Type of Role Example of Parent’s Involvement
Case Manager Overseeing all educational, health, and related services for the purpose of communicating and coordinating the care of his or her child
Medical Expert 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
Advocate Speaking out in the best interest of his or her child
Inclusion Specialist Ensuring that his or her child is included in typical classroom activities and daily routines as much as possible
Transition Specialist Creating continuity by easing the transition between teachers, grades, schools, and post-school environments (e.g., secondary school, work)
Personal Futures Planner Assisting in planning for his or her child’s future (e.g., secondary school, work, financial arrangements) by exploring all areas of interest, aptitude, strengths, and needs
 

henderson
Anne T. Henderson
Senior Consultant
Community Involvement Program,
Annenberg Institute for School Reform
Washington, DC

Listen to Anne Henderson talk about the roles families who have children with disabilities play in their child’s education (time: 0:44).

View Transcript 

lady on phoneIn some cases, the additional roles adopted by families will last only a little while; in others, and depending on the severity of the child’s disability, they may last a lifetime. For many families, these new responsibilities can be both time-consuming and frustrating. School personnel can assist families by learning what their concerns are and by finding ways to alleviate some of the stressors that families experience, such as the confusion involved in learning to navigate the healthcare, education, and social service systems. 

adult meetingTo begin this process of learning more about the families of children with disabilities, the staff of M. T. Watkins sent around a survey designed to assess the current needs of those families in relation to parenting their children. The responses indicated that many families had worries about financial planning and were unfamiliar with the services that this planning might require them to use. For example, some parents wanted information about the availability of help to pay for the many services their children might need. Others were concerned about issues related to guardianship in the event that they were no longer able to care for their children. When the majority of families indicate that they would be able to attend a meeting in the early evening, Principal Morgan schedules a financial planner who specializes in disability issues to meet with the families during that time. The financial planner arranges to spend some individual time after the meeting with families who have confidential questions.

For Your Information

Parents whose children have disabilities may not have much time to ensure that their children have opportunities to participate in extracurricular activities at school or in programs in the community. In addition, families may have other children who are actively engaged in activities that require their time and attention. Because of these demands on parents, siblings often have to contribute to the overall care of a brother or sister who has a disability.

Listen to two parents talk about the additional roles involved in raising a child with a disability.

nurnberg
Shane Nurnberg
Parent of a child who has autism
Program Manager
Roswell Family Empowerment Center

 

(time: 1:52)

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hernandez2
Luz A. Hernandez
Parent of a young adult who has hydrocephaly
Executive Director
Hispanos Unidos Para
Niños Excepcionales (HUNE) 

(time: 1:28)

View Transcript 

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