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

Page 4: Stressors of Daily Living

Principal Morgan explains to her staff that, in addition to coping with emotional issues and multiple roles, the families of children with disabilities may experience challenges related to daily living that may take precedence over school-related activities. She further emphasizes that, in spite of these stressors, these parents love their kids and care deeply about their educations. Any perceived lack of involvement in their child’s education does not necessarily mean they are not supportive, but may instead be an indicator that they are facing multiple challenges in their personal lives. Principal Morgan helps teachers to recognize that, although education is important to parents, it may be secondary (at least temporarily) to their obligation to meet the other daily needs of the child or family. In this section, we’ll examine a few of the most common of these challenges in greater detail.

High Divorce Rate

divorced family Many factors contribute to the high divorce rate among the families of children with disabilities. Caring for a child with a disability and maintaining a strong relationship with a spouse can be difficult for reasons such as time constraints, feelings of helplessness, and the additional financial burden that couples encounter in raising their child.

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

Listen to Luz Hernandez talk about divorce among some of the parents she is involved with in her professional role (time: 0:28).

View Transcript

Lack of Help

sad ladyMany families who have children with disabilities report that they receive little support from their extended families due to a lack of understanding, geographic distance, and other factors. These families may need help in areas such as emotional support, financial assistance, respite care, childcare for children without disabilities, or transportation.

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

Listen to Luz Hernandez talk about the people whom she considers her support system (time: 0:57).

View Transcript

Financial Struggles

girl in wheelchairIn general, the costs associated with raising a child with a disability are much greater than are those of raising a child without one. And such struggles are only compounded by employment-related concerns. It is common for the families of children with disabilities to lose income because a parent finds it necessary to work fewer hours per week (e.g., due to a lack of after-school programs available for children with disabilities) or else quits his or her job to assume full-time care for the child. Others find it difficult to secure employment or to remain employed because of the time they are obligated to be away from work (e.g., to take a child to medical appointments). The divorce rate we discussed above has an effect, too: Single parents of children with disabilities tend to have lower incomes than do their married counterparts.

Healthcare Costs

child in hospitalAccess to health insurance is also a significant stressor for many families of children with disabilities. Some experience difficulty obtaining insurance or face high premiums due to the amount of healthcare used by the child. Others may have insurance through an employer but encounter obstacles in changing jobs or careers because of concerns about insurance. Families often face routine changes to healthcare benefits, co-payment requirements, or deductibles, thus contributing to ongoing stress and hardship. In extreme cases, some may even file for bankruptcy because of their child’s healthcare costs.

Accessibility Issues

empty wheelchairThe families of children with physical disabilities or multiple disabilities also often experience issues related to accessibility. Locating accessible housing may require the family to move, renovate their existing house, or build a new house. If accommodations to the home are not possible, it is more likely that parents will endure physical challenges themselves (e.g., pain or injuries from constantly lifting, transferring, and carrying their child).

Additionally, some families must refit their vehicles or purchase new ones equipped with power lifts. Others who rely upon public transportation may have difficulty using it because of accessibility, scheduling, or routing issues. A lack of reliable, affordable, and accessible transportation options may limit the opportunities for children and youth (e.g., by limiting their access to recreational activities).

Activity

Where are the parents? They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents? They are at home, diapering their 15-year-old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters, and switching oxygen tanks.

Where are the parents? They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: Is this the time when my child doesn’t pull through? They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents? They are sleeping in shifts because their child won’t sleep more than two or three hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with childcare and the state agencies that are designed to help are suffering cutbacks of their own.

Where are the parents? They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working two and sometime three jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents? They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant
October 15, 1996

After reading this article and learning about the challenges associated with parenting a child with a disability, identify at least three issues that affect families of children with disabilities or their siblings. For the three issues you identify, list two ways that you or your school might provide information or support to the family so they can have some time to be more involved with your school. Use the worksheet below to record your responses.

Issue Ways Schools Can Help
1.
2.
3.

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