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

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.

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 Many 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.

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

In 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

Access 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

The 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).

Read Where are the Parents? 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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